ETHAN'S JOURNAL by Jennifer

06.26.2006 - Monday

Although the behavioral program is reinforced in practice by changing only one facet at a time and generally autism also needs incremental changes to maintain a predictable environment, we have been pushing a little and prompting changes that seem feasible or self-initiated on Ethan's part. I started putting his junior bite-size portion of the meal on a plate (a change from the pre-measured and weighed Styrofoam cups) and encouraging self-feeding with verbal prompts. This is received with great success!

06.25.2006 - Sunday

Ethan has really had the "aha" moment. The last three nights he has been given a fourth mini meal (a snack) to be done in our room. Though it is not home, it is a far cry from the clinical setting and stricter protocol in therapy. He just sits on the foot of the bed (no booster seat or table) and takes the yogurt and bite-size apples (with no gloves on me or bib on him) as if he has always been eating. IT REALLY WORKS!

06.22.2006 - Thursday

Ethan has moved to a booster seat and is having relative success with the transition. He is getting better at drinking and facing less resistance. We have moved him to a larger, deeper spoon in an attempt to get him to take wider bites and to drag his lips across the spoon in one clean sweep. He did well in the trials. Today Ethan dressed in a matching shirt with his "adopted" twin, Bobby (the other red head in the feeding program). They looked very sweet and perhaps more similar than Bobby's actual twin, since his brother is blond with markedly different facial features.

06.21.2006 - Wednesday

The recreational therapists here are such a great feature for parental sanity. It is difficult to monitor Ethan all day without any of my usual tag-team tactics with my husband. They are also the ones who organize the weekly field trips. He appears to be a favorite among the staff, though Ethan's antics are not always well-received by the nurses. It is reminiscent of the times I felt graded by the nursing staff as to how compliant or cognizant of the procedures the mother of Ethan is.

06.20.2006 - Tuesday

Though I am getting anxious to come home, I really enjoy the group of mom's who are in-patient here. Having a support network as well as someone to escape the hospital with from time to time helps keep me refreshed and sane. Sometimes it feels like a high-security camp or a strange kind of college dorm. I will miss them!

06.18.2006 - Sunday

We had our first really difficult session today! Ethan kept expelling food; it felt like it was flying everywhere. I was really struggling not to laugh because the whole session was rapidly going downhill; it kind of felt like sticking your finger into a geyser or volcano. He seems to have the hardest time on weekends (perhaps due to the unstructured nature of this time), especially at lunch. It is easy to get discouraged when I realize I will have to continue this at home with no immediate support.

06.17.2006 - Saturday

Ethan threw up a few times in his sleep because of his cough. Since I was sleeping with him, I was wearing a lot of it. He is slowing down and becoming hyper during his drink sessions at mealtime. I think he could eat a lot more than they are designating him.

06.16.2006 - Friday

Last night Ethan had a difficult time. With all the changes (Daddy leaving and a new roommate), the constant stimulation, and the coughing which induces small bouts of vomiting, Ethan remains wide awake until late at night. He finally slept on the chair bed with me. I fed him his first meal and had the fastest feed time out of all of his therapists! Drinks are still messy but progressing. Since my social worker is MIA, I am contacting all the agencies and case managers back home myself in an attempt to have no lapse in services upon our return.

06.15.2006 - Thursday

Travis left this afternoon, so we’re alone again. Travis had a crash-course on the feeding protocol and was introduced into the meals. He fed Ethan rather well and excelled at keeping a poker face, only commenting or praising the behaviors that we want to reinforce.

06.14.2006 - Wednesday

Ethan has a temperature of 102. He keeps rubbing his ears. I am irritated that our current resident has only examined him twice in this current rotation (which changed at the beginning of the month). Sometimes the disorganization and lack of thoughtfulness is more than I can tolerate. Travis stayed with him in the hospital so I could get a real night's rest at the Ronald McDonald House. Today our niece is probably having heart surgery at Yale.

06.13.2006 - Tuesday

Travis came down to see us for a few days. Ethan looked kind of shocked to see him. We all went on a field trip to the park and to Whole Foods to get supplies. I am desperate to get home yet disappointed where Ethan is at with his eating. He used to take 6 oz. per meal in purees, but is now down to 2 oz. per meal in bite size chunks. Though we are thrilled at the skills he is demonstrating, his difficulty and decelerated eating of higher-texture foods is disappointing. My empathy reserves are diminishing. Though I know life is often hard, I feel inundated with traumatic stories of the children in-patient here or at the Ronald McDonald House. It is a lonely road.

06.12.2006 - Monday

It has finally happened! Ethan has caught the virus that is sweeping through the in-patient feeders. We could almost tangibly spot the viral trail as it manifested kid-by-kid. I hope we don't have to go into a precautions room, the equivalent of isolation in our prison. I have been reading my typical book-a-week still, though certain kinds of books are difficult to read here given the interruptions and uncomfortable accommodations. Travis is coming down from Maine for a short stay to give me some respite and get some mealtime training with Ethan.

06.11.2006 - Sunday

I went to the Cathedral again. The long service flies by and the people are warm and welcoming. The annual ministry fair was combined with the cathedral festival (a celebration for kids). It was neat to see how friendly and open folks were. Several ministries had been started by conscientious parishioners who wanted to make a difference, to mingle their faith with action such as: a Habitat for Humanity team; Erica (a refugee support organization); and Bridges (a multi-church political action group focusing on issues like affordable housing, education, etc). My friend Jack is also heading the efforts of raising money to create a labyrinth in the undercroft. This sounds like another gorgeous sacred space along with the children's peace garden in the front of the church which memorializes the children in Baltimore who die because of violence.

06.10.2006 - Saturday

My Uncle Dave and Donna came to visit. After touring the hospital and visiting with Ethan, they took me out to lunch at the Rainforest Cafe which is a sensory delight. We found quite a few toys from the shop to amuse Ethan during his stay. He is enamored with the dolphin flashlight and the tiger that can actually bite - a great tool for teaching a "feeder" (a nickname the kids in the program here get).

06.09.2006 - Friday

The team has put Ethan on bites, a kind of abrupt transition from his downgrade to puree. His chewing skills are decent and having purees along with a drink and bite session was making the meal more like a marathon. He is only doing 2 oz. of food intake at each meal. I would like to see it move up past 6 oz. I joined an in-patient mom (Suzanne) whose blind daughter has CP and seizure disorders for lunch in the courtyard of Johns Hopkins; the only fresh air I often get for days on end. My friend Daniel stopped by en route from Tennessee (though actually New Orleans for quite a spell) to Maine. It is nice to get visitors!

06.08.2006 - Thursday

Ethan is refusing drinks at times. He is stressed and bored. He had a major meltdown with a little bathroom accident in the afternoon during which he screamed and bit me. The exhaustion is at an inexpressible point; I almost cried on the elevator. My friend Jack stopped by with perfect timing for a cup of tea along with several interesting esoteric magazines and a great book which I may entice the women's book group to read upon my return. A mom (Connie) from the NBU unit took me out for tacos. She is a lovely Catholic lady who does landscape architecture and has a red-headed son with autism who is 10-years old.

06.07.2006 - Wednesday

Ethan's disrupted sleep has resulted in hyperactivity and anxiety during the day. He has had a "spontaneous recovery" of his aversive behaviors. (I thought spontaneous recovery sounded positive, but...) He is still persisting in avoiding acceptance of his offered foods. We have had to regress to purees again because his mealtimes were taking over an hour and the higher-texture foods take longer to process sensory-wise. He has the skills; he is taking great bites and making headway with drinking from a cup. However, acceptance was the largest goal because he has a demonstrated background with high-texture foods. His weight has stabilized because he is still not eating a lot and his nighttime pumping sessions have been reduced. I know that reducing dependency on the pump is important but it wouldn't hurt to have some extra weight to work with. He is infamous for his ease in losing and difficulty in gaining. The in-patient moms have been trying to get out together for a little while during the two-hour supervised playtime. We hopped the subway and got into the inner harbor for a little break including a pedicure and a beer.

06.06.2006 - Tuesday

I am convinced we have lost some serious ground. The team is not always the best at communicating (therapy schedules are often incorrect, despite many parents communicating to every member of the team and new foods are introduced in what feels like an afterthought). Other parents have said they would love just a clue of what the immediate or weekly goals or projects are. Perhaps they are unwilling to commit to anything since it is a lot of guesswork, predicting what any given child might do. It seems to me that we will need additional time to smooth out the setbacks.

06.05.2006 - Monday

The disruption of eating over the weekend (which may have been in part from an unfamiliar therapist as well as a sensory shutdown) did not dissipate when his favorite feeder returned. He has been bumped down to purees in an attempt to make the meal go faster. He is even starting to refuse his drinks.

06.04.2006 - Sunday

I went to church today at the cathedral, where they had a Pentecost parade. People read the prayers in different languages (just like the first Pentecost)! There were so many interesting facets to the service. The Sunday School program was bursting full of life. There was a meditative peace garden and a labyrinth in the works in the undercroft. The basement had a real crypt as well as a peace chapel where they did Taize. I explored some more of Baltimore and ate some great Mexican food as part of my escape from the hospital.

06.03.2006 - Saturday

Ethan has been slowing down in his meals this weekend. He has not gotten to the drink part of his meals, since the one-hour time limit is achieved. He seems to have a hard time transitioning with new therapists. The stimulation from the environment and the changing faces keeps him in a state of hyper-arousal; he is having a lot of trouble getting to sleep. The team has been discussing giving some temporary sleep medication to regulate his dysfunctional and disrupted sleep schedule.

06.01.2006 - Thursday

Ethan is starting again on a trial of crunchy apples at his meals. He needs to demonstrate his chewing (and not swallowing them whole as a way to avoid the texture). I have become friends with some of the mothers here and we escaped to dinner during a supervised playtime. It is nice not to feel like the mother of the strangest medical child in a group. Sometimes being in a hospital feels more normal to me than being at home, though I am rather lonely and bored here.

05.31.2006 - Wednesday

We have received several packages over the past several days. My friend Cassie sent some great books, another friend sent a toy for Ethan, which he sleeps with, and Anna sent us a lot of food and a complete place-setting, since I had complained about the Styrofoam cups and plastic ware.

05.30.2006 - Tuesday

I am so tired and homesick again. There are enough stories here to prompt several bestsellers, if only I could discipline myself to write them. I haven't mentioned many of them here since the details (even without names) are so unique and distinguishing for many of the patients who are long-term residents here. Someday when we are further removed from it, I may attempt some reflections...

05.29.2006 - Monday

They held a picnic outside in the gated parking lot but it was dreadfully hot so we scurried back inside with our food. An extended family of Muslims was gathering in the lobby and held a communal prayer on the floor. I have been blessed to have had a lot of exposure to Pakistani and Indian Muslims during this trip; I'm learning a lot. Today was kind of like an extended weekend schedule with only the feeding therapies. The playroom was closed in the evening so I was tired. Ethan has lost a little weight and sleep because of the constant stimulation. He has started attempting to eat chopped corn.

05.28.2006 - Sunday

Great Aunt Pattie and Great Nanny came to see us today. Pattie and I walked around Fells Point for an hour while Nanny stayed with Ethan in the playroom. He threw up a few times for them during his meal time. He has started his rice pasta and tomato sauce and seems to do well, though his acceptance of drinks is diminishing. He seems distracted by wanting to look down the therapists shirts!

05.27.2006 - Saturday

Some clowns came to entertain the children in the morning with bubbles, balloons, and crafts. Grandpa and Grandma Bailey came to visit with a surprise: Great Grandma DeMichele. It was lovely to see them. After a short afternoon nap, our friend Jack stopped by for a short visit. Then we took our leave of absence to go visit a friend's home (who is local and also in-patient). I got to Target and Old Navy, where I felt like I was in a deprivation mode – ha, ha.

05.26.2006 - Friday

I love the support and encouragement everyone is sending via cards! A lovely package from our family friends Jim, Linda and Simona arrived filled with clever things to encourage Ethan's new habit of eating, including: an alligator fork and spoon and a fire truck plate with picky eater children's books. Amanda and her boyfriend came to see me. I had carefully planned to get out during the supervised play hours and commissioned a tech to put Ethan to bed. I already gave him his meds and vitamins as well as a bath. This was my first venture without him for a few hours. Amanda brought me a ton of cute clothes and we went to Fells Point for dinner and drinks. I called the nurses station frequently to check in. We didn't stay out too late; I was worried and perhaps getting older. Sometimes I wonder if white-collar prison has nicer accommodations - hee, hee, J.

05.25.2006 - Thursday

Our The schedule is messed up again! As much as the program is incredible and working so well, the coordinator of therapies is some unknown component. It seems no one knows who to contact or how to effect positive change. Ethan can chew on the hardest of chewy candies in OT. Yesterday, I went to visit the Kennedy Krieger School Fair. We also received an awesome care package from friends at church (Beth and her daughter Emilie) – including new pajamas for Jen!

05.24.2006 - Wednesday

Our typical schedule during the week looks something like this:

7:00 - wake up and prepare Ethan and myself for the day with showers, vitamins, clothes, temp/blood pressure/weight checks and a visit from the resident
8:00 - walk to Johns Hopkins via the underground tunnel to get breakfast
9:00 - occupational therapy back at Kennedy Krieger on the first floor with Erin
9:30-10:30 - the first of his meal therapies with his team on the second floor
11:00 - speech and language therapy on the first floor with Demi
11:30 - a session on the first floor with his educational tutor Miss Rachel
12:30-1:30 - the second of his meal therapies with his team on the second floor
1:30 - we go the canteen in the lobby of Kennedy Krieger for lunch
2:00-4:00 - naptime and relax in our room (sometimes the attending finds us and examines Ethan now)
4:30-5:30 - the third of his meal therapies with his team on the third floor
5:30 - we walk over to Johns Hopkins again for dinner
6:00-8:00 - recreational therapy in the great room with other in-patients
8:30 - get ready for bed and the lights out at 9:00

(We also have meetings on occasion with the social worker or the team and we get to go out twice a week).

05.23.2006 - Tuesday

Ethan has graduated to higher texture foods and may attempt some fine chopped things this evening. He is slower eating this but I think he is just figuring it out. (Breakfast is always slower since he is still on the pump at night.) He needs a wider repertoire of protein foods. He is excelling (in my opinion) on drinking his pear juice from an open-face cup.

05.22.2006 - Monday

I had lunch with one of our hall-mates that I have become close to; she is a sweet and giving person, always volunteering to pick up groceries or help with mending (my least favorite chore ever), since she lives locally. Amanda came down to see me in the afternoon. We were able to hit Fells Point for a harbor-side diner while Ethan stayed behind in a supervised playroom for a special activity. Using oral syringes, the kids painted a long wall and adjacent floor which were covered in paper. Ethan watched from the sidelines and then after awhile dove into the middle of the paint pile and sloshed around like a fish. He was the talk of the evening! Fortunately, he was all cleaned up and put into his jammies upon my return after dinner. Our new roommate last night was moaning and screaming in pain so we were awake off and on all night.

05.21.2006 - Sunday

A universal experience in hospitals is boredom, unless you are actually in the midst of surgery or riding the drama of an ICU. Most of medical practice is about watching and assisting with medicine or therapy what the body must do for itself, and that takes time. The staff in most children's hospitals tries to mitigate the need for mental stimulation and even attempts some sort of physical activity or play, planning special events. The KKI Recreational Department do rather well here trying to have field trips, theme weeks, and activities for a broad range of children (ages 1-19). This week they had a turtle race (which we were unable to attend do to scheduling conflicts) as well as a traveling dance troupe of young girls who gave a performance yesterday to a captive (literally) audience. Jack came to visit us again and brought a stash of real, fresh, and ethnic food from the nearby market. Ethan has a new cousin – Caileigh, who was born today at 3 lbs. 5 oz. and despite being early is in great shape!

05.20.2006 - Saturday

We got TWO packages! Travis sent an amazing, jam-packed package full of Ethan's and my favorite things. Our friend Susan sent us a package of extremely fun, thoughtful, and generous things. I think people who have been through a hospital experience really understand just how important these pieces of hope and community and family are. Now we have tons of snacks, books, magazines, bubbles, toys, puzzles, flip-flops, reading lights, essential oils, and notebooks, etc.

05.19.2006 - Friday

Ethan has had some explosive bowel movements and irritation. Even though his blood work shows he has resolved some of his food allergies (at least in theory, since this science seems very inexact), he appears to have sensitivities. Other mothers have mentioned the shock they felt at the quality of food offered (canned) or the composition of the meals (vanilla pudding and yams and beef stew), especially since so many in the program seem to have intestinal difficulties or intolerances. We had a lovely and long visit from Jack, a teacher at Kennedy Krieger and a member of the local cathedral church. He is full of insight and has led a diverse life. We discussed all my favorite things: Ethan and autism, religion and politics, literature and travel. He has promised to return and bring survival gear to keep my mind occupied.

05.18.2006 - Thursday

We are going on a field trip with some of the other in-patients. Ethan is eating pureed chicken in mash potatoes along with the rest of his repertoire. I am anxious to see them move towards higher and mixed-texture foods and start attempts at some self feeding. They have been working on drinking from a cup this week using pear juice, which he normally likes. For our in-patient field trip, we went to the park at the Kennedy Krieger Elementary School. He enjoyed playing with Kaneese and Riley. Then we made a short stop at Whole Foods where we went wild surrounded by "real" food after our almost exclusively cafeteria exposure. I stocked up!

05.17.2006 - Wednesday

I have been taking advantage of the perks offered around here to keep parents refreshed and sane, such as chair massages for the back, neck, and shoulders every Wednesday. After the massage my cousin Jessica came to visit Ethan and me. We love company, since hospitals can be lonely and boring! She brought us a flower to decorate our room. We all wandered around Johns Hopkins and talked about everything; I have been desperate for some girl time. On her way out we "found" Jesus; a twenty-five foot statue in one of the older parts of the hospital with classical architecture and elaborate materials (like marble and wood paneling).

05.16.2006 - Tuesday

KKI is providing a catered dinner for the in-patient parents this evening. Ethan was up all night. The schedule changes and disruptions often seem to keep him in a heightened state of energy.

05.15.2006 - Monday

The schedule for today is double-booked again! Ethan is supposed to get a short session of school at the same time they scheduled a co-treatment of speech & occupational therapy. No one (nurses, resident, therapists, etc.) seems to know how things get scheduled or who is in charge. It is just carried out by magic, one of my least favorite forms of execution. Communication is not a forte here and sometimes the foci of various disciplines get lost in translation. For instance, he moved to a bigger chair and his feet were dangling during the meals, which contributed to his behavioral refusal of foods and drinks. An occupational therapist would have quickly pointed out how tiring and distracting that can be, especially for a sensory-disintegrated child.

05.14.2006 - Sunday

Ethan decided to single-handedly flood one of the bath rooms (which reminds me of a high-tech version of a bath house in Japan with tubs that raise and lower as well as convert to shower or whirlpool). I looked like a drowned rat as I sopped down the hall once again chasing a bare-naked bottom. It is scary how quickly I burned through all my light reading and started with a TV addiction, since we have no cable at home. Mother’s Day in a children’s hospital does not quite feel real. It was uneventful. I did laundry and Ethan painted his toenails a soft, trend-setting blue.

05.13.2006 - Saturday

(Great) Aunt Pattie, (Great) Nanny, and Grandma came to visit and we were able to take our therapeutic leave of absence (TLOA) a.k.a. get-out-of-jail-free pass. Ethan and I went to Old Navy and IKEA where he ate some apple pie. He has "officially" added pureed carrots and green beans as well as strained beef stew to his repertoire. The occupational therapist and speech therapist are trying to assess how well he would do with mixed textures as well as feed himself while decreasing any sensory aversions. An in-patient friend of ours who lives locally valiantly volunteered to get us some fresh things from the local grocery: organic yogurt, corn chips, and carrots. Yum!

05.11.2006 - Thursday

Our new roommates are so sweet. The mom is my age and has two children. Her adorable son who is fourteen months old has Brittle Bone Syndrome. He is here for a collagen infusion to help offset the effects of this malady.

05.10.2006 - Wednesday

My good friend Shelly and her son Dalvin left today because he cannot progress any further in this program due to severe allergies and vomiting. I loved hanging out in their room and talking about her life and her country (she's from Guyana). People from all over the world come to this program. I have met people from Seattle, California, Chicago, Southern Florida, Utah, etc. Another pal, Tina, is leaving on Friday. I am jealous and feel so lonely! It feels like every day you wake up without any idea what will happen. The littlest things seem to get under my skin, like changes in rooms or roommates or nursing staff or the schedule, on top of everything else going on.

05.09.2006 - Tuesday

Ethan finally started with a half hour of school each day. I have been trying to do an hour session myself each morning and afternoon, working on identifying (on flash cards) numbers 1-12, the alphabet (upper and lower case), and pictures. We are also working on singing his vast repertoire of songs, as well as cutting with scissors, navigating on the elevators, and some preliminary writing. He has stopped crying so often and clinging to me so constantly.

05.05.2006 - Friday

Travis left today but I got a package from April filled with love, chocolate, and a great outfit for Ethan. Ethan is eating pureed pears, apples, peaches, and bananas. When they introduced yams, he threw up. I don't know if it is allergies or the sheer volume of food or whether it is behavioral (a manifestation of his dislike of the smell or texture). The hardest thing here is that the therapists feed a child while they are vomiting, and even feed back the vomited food!

05.03.2006 - Wednesday

A pastor from my parent's church who had a special-needs child of his own came to visit us from Pennsylvania. It was nice to have a visitor! Travis and Ethan went on a field trip with a group from the hospital to a local playground, and then to Fell’s Point to see the ships come in. Ethan enjoyed the boats very much.

05.02.2006 - Tuesday

Travis joined us for a few days so we got behind with the journal! It was fantastic to have a break. I got to sleep in a real bed at the Ronald McDonald House for several nights while Daddy took a turn at the hospital bedside with Ethan. He got to experience first-hand the mix-ups that seem to happen here at Kennedy Krieger when they let the special formula supply for Ethan run out (again)! We were given two therapeutic leave of absences (a few hours off-campus) and the Ronald McDonald House donated passes for us to go not only to the Baltimore National Aquarium but also the Maryland Science Center. Ethan loved getting out and exploring!

04.30.2006 - Sunday

Ethan is trying to keep up with his studies though we have given up entirely on getting anywhere significant with potty training. There are just too many changes and too much going on here; he is very stressed and clingy. The afternoons are filled with crying. He has learned to push the buttons on the elevator and can navigate rather well around this hospital and even some of Johns Hopkins via the underground tunnel. Yesterday, they tried to take a lot of blood (10cc) but he only had 3cc that came out!

04.29.2006 - Saturday

I have decided that perhaps wearing flip-flops in the shower and reading magazines on vinyl couches may be the Next Big Thing. That and cafeteria food - mmm, yummy. Hospitals always kind of empty out on the weekends, though we still continue with the feeding protocols. We are going to get out (on good behavior) for one of our twice-weekly leaves, complete with an ankle bracelet. Part of my survival instinct has kicked in to help make the stay more comfortable. After raiding the rooms of my friends who left, I found a contraband refrigerator. We also found where the nurses stash the extra towels; by 4 o'clock each day every one has snatched up the supply left in the hall.

04.28.2006 - Friday

The stress has subsided for me as I have either resolved problems or resigned myself to enduring the seemingly one-sided compromises. Last night Heather called as well as a friend of April's; it was good to feel connected to home. Ethan’s nurse gave me an incredible mini-massage and then I got a package in the mail today filled with organic bars and some instant soups as well as organic dark chocolate and a very special gift from my husband. Three of the families in the program left today and though we have only been here a few days, it feels like we are losing some relatives. My friend Alex is gone and she was so much fun, a great resource for what to expect and how to survive. Ironically the stress has kind of increased for Ethan. He almost fell asleep at his feeding therapy session today. He has a rigorous schedule with occupational therapy, speech and language therapy, his feeding team's regimen, as well as meetings with the immunologist, audiologist, social worker, nutritionist, behavorial therapists, and some sessions trying to replicate and continue some of his studies and drills from his school. He cries a lot and wants to be held almost continuously.

04.27.2006 - Thursday

There are two stresses that one can always expect in a hospital: lack of privacy and heartache at the abundance of maladies there. Kennedy Krieger Institute is different in that it appears that everyone here has some sort of special-need. We are on the same floor as the spinal-cord injury patients and the neuro-behavorial kids (with self-injurious behaviors). Sometimes, despite my vast exposure and experience, it can be overwhelming and frightening. My heart feels raw and yet at the same time amazed to see how children (and their parents) keep on fighting and having fun despite less-than-perfect circumstances.

04.26.2006 - Wednesday

I still don't feel like we belong here and the walls make me feel trapped, kind of like an innocent put into high-security prison. The walls & halls feel claustrophobic and lack privacy. Because of a fire alarm evacuation, we got out in the fresh air for a few moments. Ah, freedom! (Note to self: the plan worked.) There is something intrinsically arrogant about so many doctors. Each one has to repeat tests previously done and reinterpret them. They seem to think the previous team’s ideas and doctors’ decisions are invalid. Medicine seems very temperamental instead of exact.

04.26.2006 - Wednesday

The hospital admissions are a zoo! It appears that the departments do not talk to each other effectively and the team as-a-whole seems to demonstrate a lack of preparedness. Last night, Ethan's formula was not available despite being told of his numerous challenges in the past with different varieties of medical food. Then the nutritionist suggested several formulations with similar osmolality that Ethan was allergic to! The most annoying part was that this became a crisis forty minutes after he was supposed to be hooked up to his pump. They suggested Pedialyte (which has barely any calories since it is an electrolyte replacement). When I told the on-call resident that it didn't supply him with calories, she said it had calories (really splitting hairs, which drives me crazy). We finally settled on an elemental formula but they did not get the rate right, despite my repeated emphasis of our experience there. I met with the charge nurse and the resident to discuss my concerns this morning. Then I went to a meeting with the social worker and the behavioral psychology people. The IEP has not really been addressed and there is definitely an openly-stated priority (discrimination?) given to kids from Baltimore. This meeting was after demonstrating to the feeding therapist how Ethan drinks water from a sippy cup. I had forgotten how much the lack of privacy and the difficult sleeping conditions/arrangements make it hard to cope with hospital life. I made a friend who is showing me the ropes and who told me she takes sleeping pills to get through it. She is probably leaving at the end of this week.

04.25.2006 - Tuesday

Please pray for Mommy (and me) - we're having a hard time dealing with the many overwhelming challenges facing us right now! We are sharing a small room with another family (at first they tried to put us in a triple room but very quickly changed their minds) and this hospital is kind of yucky compared to the others that we've been in. Mommy is VERY tired today and is feeling a bit overwhelmed. Hopefully as the week progresses she will feel more in control of things. Mommy is a very strong person to have gotten me this far, that's for sure. Daddy is working to get more pictures up and to finish the other pages of my site (of course I would do it all myself but my computer is at home). We love you all for caring so much about us - Ethan.

04.25.2006 - Tuesday

No matter how much preparation you do for a new venture there are always surprises. Unfortunately, there are more surprises than I feel I can handle right now; it is overwhelming. The schedule is grueling for me and Ethan screams a lot while running around the hospital constantly. He hates his room. I am so tired and lost and feel so alone which feels pretty pathetic for someone who likes to think of herself as adaptable and strong. I have a hollowed-out look in my eyes (maybe from some crying spells) and didn't even get to eat or use the bathroom until almost 7 pm. Doubts are haunting me; my months of hard work are frustrating me. I want to get the educational plan in place and some support systems worked out! The stress is intolerable so if I cannot resolve this, I don't know what we will do.

04.24.2006 - Monday

This is the day! We drove about 5 minutes over to Bangor International Airport to take off in a plane with a few other patients heading to medical appointments in Boston, compliments of Angel Flight Northeast. Ethan did not like all the change, the noise, or the new people so he kind of lost all control and screamed. After a while he fell asleep but only if I held him. When he awoke, he kind of reproached everyone in the cabin with a sulky lip and sad eyes. The second leg was a little better; perhaps he had resigned himself to it or because it was just Ethan and I and the pilot who was an incredibly nice and intelligent man who takes time from being an anesthesiologist to donate his time and plane to help people with special medical needs. How can you not be inspired by these people? This trip went faster for me though I am sure discussing politics, economics, and even religion helped pass the time. (Great) Nanny and (Great) Aunt Pattie met us at the airport in Baltimore so we didn't have to struggle to make our way to the Ronald McDonald House for one night (though, once again, we are grateful that such a charity exists). It has been a lot of changes for Ethan and a lot of stress. We are both tired and longing to settle in to whatever the marathon has in store in the next leg.

04.23.2006 - Sunday

It is encouraging to know how inspired I am sometimes by the ways that grandparents respond to autism/special-needs. One grandmother I know of who is a doctor devoted her practice and research to helping recover her grandchild; she even wrote a book. When we were in the Ronald McDonald House, a couple of grandparents came one weekend a month to help host; they said it was their way of giving back and getting involved because of their grandchild who is a premie who lives many miles away. The intake coordinator at Angel Flight Northeast told me he had a grandchild with autism who did not eat very well. It makes me feel that sometimes people do understand what is going on when they get involved. It takes many hands and many minds to raise a child, especially one with special-needs. We are grateful for all of those who have really supported us. This week I have been flooded with thoughtful and generous gifts from our friends who want to, in whatever way they can, be there with us through this long separation from home. Dealing with special-needs on an everyday basis and living in the hospital is not very easy and the long-term stress can be a killer unless you learn how to deal with it.

04.21.2006 - Friday

Bureaucracy may be its own form of evil, but if given a chance, people can surprise you and be angels! Cindy Brackett and Cheryl Hathoway at DHHS continued to meet with us and chip away at the puzzle until slowly results started to leak out. Jean Lloyd (Department of Children with Special Needs) also encouraged and investigated for us. Sean Faircloth even suggested going to the media, though it proved to be unnecessary. We finally got word that it looked like things were going to happen as hoped and planned (I had realistic worries that given the slower-than-slow process to get insurance coverage and approval we would be bumped from our spot on the wait list we had been on for months). When the call came, it was Good Friday. Instead of feeling elated, I broke down and cried because it had been so exhausting and to finally have a hard-fought goal realized was overwhelming. When I called Ethan's school, a whilrwind of secondary activity took over; there was so much to do now that we had a firm date! The teachers only had a few hours to wrap up his progress notes and compile/update his drills & skills records since he was off school the following week (the vacation actually worked out well since Ethan got to see more of Daddy before the very long departure). I would have to wait until the following Tuesday morning to finalize our plans since the Monday after Easter was a state holiday (Patriot's Day) entirely unfamiliar and meaningless to me. Then it was a mad rush to assure that my substitute would be in place, transportation and meds were planned, therapists and doctors were notified (a good 30 phone calls)!

04.02.2006 - Sunday

The frustration is mounting as our anticipated hospital admission date soon approaches. I have now called the governor’s office, written emails to Maine’ First Lady, a state senator and two US senators, and the Attorney General. Then I called a lawyer. Our last resort will be to go to the media. If we can create awareness and public outrage, perhaps it will grease the wheels of a rusty and seemingly broken system: Mainecare.

February of 2006

I am still trying to get the state on-board! You would think that if a doctor recommends a treatment saying it is the only remaining option everyone would quickly respond. Instead, it has been over five months of constant phone calls, working the bureaucratic system and facing so much apathy towards our situation and ignorance of the system that frustration doesn't even come close to describing how I feel. The only provider available doesn't have a contract, yet there seems to be an inability to creatively think outside the normal parameters of the system. Negotiating a patient-by-patient agreement and assigning a temporary provider number has taken an exorbitantly long time. We have had our specialists, pediatrician and therapists write letters and give prior authorization but the prior approval department at the state is an indomitable wall. Even after calling our state representative Sean Faircloth, we did not get anywhere significant! The acting commissioner, Brenda Harvey, and the Director of Children's Services, Joan Smirnski, have stated via emails that they fully support our efforts. I fully support the tsunami rebuilding effort, but I am not personally doing anything about it!

Fall of 2005

We went to see the gastroenterologist, who is based in Portland, at his Waterville office. He said at this point there is nothing further he can do. We have been in speech and feeding therapy since Ethan was one year old. We have followed up and exhausted all the in-state resources. Now it is time to consider a long-term in-patient treatment plan for eating. This began the long road of trying to get services from a provider who has no contract with the state of Maine.

March of 2005

We went back to Children’s Hospital Boston for a follow-up angiogram on his brain and the plumbing looked good. The embollization appears to be working! This time they mentioned the hemangioma behind his right orbit and thought he may have a rare disorder called Bannayan-Riley Ruvalcaba Syndrome. We then made an appointment with a geneticist (again!) to see what he thought. I get the distinct impression that genetics is a field where there are not many treatments or cures but perhaps prevention through genetic counseling and testing. They will put us in a database and call us if they find out anything. Perhaps this gives some weight to the stem-cell research scientists are conducting.

May of 2004

The fuzzy spot on the MRI which looked like a tumor turned out to be bleeding in the brain. Ethan had an arterial venous fistula or malformation. We took him to Children’s Hospital Boston where the pediatric radiologist and the chief neurosurgeon performed an angiogram and embollized his AVF. While they were in his brain they discovered that he was missing his right jugular vein. They confirmed his missing septum pellucidum and the subsequent slight ventricular swelling.

03.12.2004 - Friday

Ethan is so adorable and patient though he tires of being paraded around the hospital. We waited a long time in the radiology department (while he entertained several nurses as a captive audience with his antics) before they decided to admit him to the PICU (Pediatric Intensive Care Unit) and sedate him. Because of overcrowding at the hospital, several of his hall mates were of the larger, grey-haired sort but he wasn’t allowed to play with them. When the CT scans were done, he was supposed to be disoriented and drowsy, but he hopped right up and starting running around only to crash sideways into a wall. He wanted to explore but couldn’t understand why he walked like a drunken sailor. I followed him the best I could and soon they let us go home after another 8 hour day at the hospital.

03.10.2004 - Wednesday

The morning started with phone calls to a nurse who apologetically stumbled through a hastily scrawled set of notes regarding the sedated dye-contrast MRI. The radiologist’s report said that Ethan was missing his septum, two ventricles were swollen, calcifications as well as a 3cm growth were present. We all drove to Portland to see our orbital surgeon and find out the results of the growth behind his eye which had gotten bigger. The good news was that it was now 2mm and we could forestall surgery at this time. He wished us the best while looking gravely concerned at the mass discovered unexpectedly during the MRI. Though the films were taken the previous Friday, no one had called with the report. Dr. Kahn called our neurologist to see if she could give us some more information, surprised that we had not been called earlier. I am getting tired of tracking everything and figured: no news is good news. We arrived back home later that evening after a long day of driving to have a message on the machine from Dr.Stewart stating that we should take him back to the hospital on Friday for a follow-up sedated dye-contrast CT scan to determine more of the nature of the growth.

03.05.2004 - Friday

At 6:30 this morning, we all headed down to the hospital about 8 blocks away from home. The nurses let Ethan watch a movie while taking his vitals. When we went down to the MRI department, we met our friend from choir, Dr. Wright, a neurologist who offered support and sympathy. It is nice to feel surrounded by friends on almost every floor of the hospital though I missed Barbara Bush because of our familiarity with the facility there. They had to do a partial intubation called an LMA (some kind of cap that only sits on top of the throat and doesn’t risk damaging the vocal chords). He did well though he took a long time to come out of the anesthesia (which is his usual routine and so much like Mommy). We were home in time to have cake this afternoon to celebrate Doris’ 98th birthday!

Summary of 2003

Ethan stopped eating in November of 2002. After a week long stay at the Barbara Bush Children’s Hospital in Portland where our pediatric gastroenterologist performed an endoscopy, an emptying study, a barium swallow, and several other tests to rule out any physiological problems that may cause his complete feeding aversion, we had a nasogastric feeding tube placed to keep his caloric intake up and maintain body fluids. Since this alternate method of getting sustenance is far from ideal and usually thought to be a temporary measure because it interferes with esophageal function and is easy to pull out despite the great tape jobs that we try to execute, a g-tube was placed in March of 2003. What we thought would be a simple surgical procedure turned into a headache and an eleven day stay at the hospital! After the surgery, Ethan screamed and did not roll over for three days straight even with morphine and several other heavy-hitting pain killers. Finally, the only thing that worked was a Baby Einstein video (he had never watched TV or shown any interest before). Its almost hypnotic quality subdued his pain. He began the first of many rounds of profuse vomiting that occurred several times a day for the next year. Our family became quick-change artists. We consulted with several feeding specialists in the area as well as one at Children’s Hospital Boston. Each time, no one had any tangible techniques that improved his intake or any credible explanations to his bizarre behavior. We even saw a developmental pediatrician in Portland who told us he had sensory-integration disorder and did not mention the autism that seemed to haunt me in the back of my mind.

05.02.2002 - Thursday

My six-month well visit on Tuesday morning went well (10 lbs. 9 oz.), but after the vaccinations I started to feel badly. Mommy was pretty worried since I am generally the most genial baby. Since we were in Camden, she called the doctor who reassured her that all was OK. After a few doses of ibuprofen and a good night's sleep I was back to my giggly self.

04.29.2002 - Monday

This last week has been full of activity. I helped Mommy cover for the church secretary at St. John's three days this week. On Thursday night after choir, Mommy's friends from Pilgrim Orthodox Presbyterian Church held a shower for me. I received many new clothes (size 24 months) as well as more books. Mommy and Daddy are always reading in bed. Sometimes they read to me. On Saturday night, Mommy went to hear her friend Nancy sing with the Athena Consort. Daddy was going to watch me but at the last minute I pled hungry and went to the concert. The only problem was that within the first ten minutes of singing, I started making some unusual noises myself, though not nearly so pleasant. A foul smell met our noses, and then my outfit developed a serious spot of growing size. I started to cry, of course. It wouldn't have been so bad but Daddy had the diaper bag and he came over 25 minutes late! The bishop came for Mommy's confirmation on Sunday, though for the first time I was fussy during church. Grammy and Grampy Hill came after the service for dinner. While Daddy and Mommy were cooking and preparing, snow started to come down at a maddening pace and lay on the yard.

04.22.2002 - Monday

It was good to spend the week at home after an extended absence. Mommy took me for a walk on Wednesday, narrowly escaping a sudden spring thunder storm. Lightening exhilarates Mommy, but it startles me. Daddy has been helping me crawl on the floor since he is convinced that my lack of locomotion is a source of frustration to me. I kick my legs all the time and babble on and on. Sarah says I am a very engaging baby who enjoys company. She and Daddy bought me a pool to sit in this summer since the ocean might just be a little too cold for my taste.

04.16.2002 - Tuesday

This last week was spent in Camden. (Daddy has a lot of work to catch up on there). On Friday, we took a family excursion to Portland to visit my old doctors at MMC and to do a little shopping for me. On Saturday, Uncle Deryn came to visit me. He made us dinner and we all watched a funny movie. He held me before going to sleep. We went back to Bangor last night. Camden is becoming a second home. Nancy, my nurse, came to see me today. I weigh 10 lbs. 1 oz., but Daddy thought I lost a lot of liquid this morning since he had changed many heavy diapers! 04.08.02 Mon The weather is getting warmer and Mommy is getting braver. While in Camden, she took me out for a walk in my carriage. I was able to spend Friday with Grammy Hill on Friday and soaked in the coastline during a two-mile stroll. Upon returning to Bangor, Mommy took me to church. She and I walk there every week. (Daddy was not feeling himself so he stayed home in bed). Nurse Nancy came and weighed me. I am 9 lbs. 14 oz. Sometimes Daddy calls me "Chubbley," because I am getting so big! He jokes about writing a hip baby book about a boy named "Carrots" and his dog, "X." I just smile and coo at him.

04.01.2002 - Monday

This last week Mommy and Daddy have been very busy painting and cleaning the apartment. On Thursday, Nurse Nancy said I weighed 9 lbs. 5.5 oz. and was 23.5 inches in length. That evening, Grandma and Grandpa Bailey and Aunt Amy arrived for a visit. I loved all the extra attention though the long days and constant change in scenery was a little disconcerting. For my baptism on Easter Sunday, I wore a white cap and sweater. So many friends and relatives came to witness this sacred event including: Grandma and Grandpa Bailey, Aunt Amy, Grammy and Grampy Hill, Dr. Sarah Davenport, Peter and Rebekah Childers, Daddy's Aunt Julie and Uncle Andrew, and his Aunt Tina and Uncle Carl Milliken as well as their daughter Megan. Even my 93-year old neighbor came out for the event! (Nanna and Grampy LaCombe sent their love as well as a card and blanket for the event). There wasn't a dry eye in the choir. Daddy played the anthem but I didn't conduct. I was exhausted from looking so cute. After attending my first Easter feast and receiving some lovely gifts, my family from Pennsylvania started their journey home. I will miss them!

03.25.2002 - Monday

The nurse said I weighed 9 lbs. 2 oz. on Friday, but Mommy thought there was a discrepancy between the "travel" one the nurse brings and the doctor's office one. For Mommy's 26th birthday on Saturday, she painted the bathroom. I gave her a birthday kiss and smiled a lot all afternoon. On Sunday, Daddy sang in the choir. I chirped in too but nobody was singing then. Mommy had a blessing from Father Kevin. After church, I went to a shower in my honor at Great-Aunt Tina's house. There were so many new faces from Daddy's family to meet. I loved all the books and clothing I received. Everyone wanted to cuddle and love me! I love the attention but also just need to sleep (maybe on Grammy's shoulder).

03.18.2002 - Monday

After several weeks of slow gaining, I have shocked everyone with a gain of ten ounces in as many days! Dr. Lever said that I looked very good and very content. Even though I weigh 9 lbs. 1 oz. at the moment, the pressure is still on to keep the number of my feeds high. Just thinking about it makes me sleepy!

03.17.2002 - Sunday

After staying in Camden a couple of days, I came home to find Uncle Deryn there. Since he shares the same birthday as Mommy, he took Mommy and Daddy and me out to a Japanese restaurant (her favorite) for an early celebration. Because I have been constipated all week, it ended up being take-away because I was upset and uncomfortable. Daddy ran to the drug store to remedy that. (They had tried everything else the nurse recommended when they called her). In church, Daddy played the organ and conducted the choir for both services. During one of the songs, I helped conduct. I am a natural! With my strawberry hair and lime-green pajamas, I looked very festive for St. Patrick's Day!

03.12.2002 - Tuesday

This last week I have been much more focused in my activities. I am trying to vocalize more with Mommy and Daddy, instead of just whimpering or grunting. I can roll over and turn myself around in a big circle when placed on the floor. The nurse said I weighed 8 lbs. 9 oz. on Friday. Grammy Hill came and babysat me for a while on Saturday night so that Mommy and Daddy could go out to a play. Then we all went to a baby shower for our friends Emma and Gary Creaser. 03.08.02 Fri Daddy painted my nursery pastel sage this week. I will still sleep in bed with Mommy and Daddy for a long time, though. My favorite place to fall asleep is on Mommy or Daddy's chest or my swing. Lately, I laugh out loud a lot more. It is so good to be home.

03.03.2002 - Sunday

Early this week, I was in Camden at Daddy's work to attend Sarah's house blessing. She has a bassinet and Peter Rabbit mobile just for when I stay overnight! At the crack of dawn, Mommy and Daddy took me for my synergist shot (RSV vaccination). The nurse practitioner said I had thrush and prescribed an oral suspension for it. Mommy was actually happy with the diagnosis because she has had yeast for a long time and was convinced I did too. Now we can both be treated to stop passing it back and forth to each other. On Sunday afternoon, the choir held a shower for me. They are so very generous and loving. Among some of the treasures I received are a handmade diaper bag, numerous baby toiletries, a baby sling, and many gift cards (to purchase books and clothes when I am older and bigger). I am going to be a stylish child!

02.24.2002 - Sunday

Today is my great-grandmother's (Bette) birthday! Nurse Nancy came to see me on Friday. She said she was surprised at how alert and bright I was. (When she read my medical history, she thought I would be very different). I am gaining slowly but steadily (about three to four ounces a week though the average is five to seven). On my first appearance at church, Father Kevin gave a special blessing just for Mommy, Daddy, and me during the service. So many of the congregation came to admire me and to share that they had been praying for me.

02.17.2002 - Sunday

My first doctor visit with Dr. Lever on Friday went rather well. (He is an old friend of my pediatrician in Portland, Dr. Judkins). He must have thought I was very special since he scheduled more visits for me than the other infants in the practice.

02.11.2002 - Monday

The visiting nurse came again today and told me my weight was down by one gram. Though that is negligible, Mommy was a little distraught because I should be steadily gaining now and it can still be a battle to get me to feed anything close to my recommended intake per day. It snowed several inches today and the world is wintry white.

02.10.2002 - Sunday

Today was the EMMC NICU reunion and I wanted to go visit the nurses and doctors who cared for me during my first five weeks of life. Nurse Lisha was there; we took a picture together. I also saw Dr. Hagerty and Dr. Knight. Everyone couldn't believe how big I have grown. Mommy is learning the wilds of "public nursing." I don't understand why she should wear a shirt in public so I try to nurse through it. (It doesn't work). Daddy has been taking my midnight and three a.m. feeds and Mommy tries to get my 6 a.m. and 9 a.m. feeds because Daddy likes to sleep late. Of course, I still end up sleeping with them in bed (often on my Mommy's chest or in the nook of my Daddy's arm).

02.09.2002 - Saturday

Grampy and Grammy Hill came to see me. Grammy read me a book! Then Mommy's friend Nancy came and cooed over me. (I spit up on Nancy's sweater by accident). My reflux still gives me a lot of trouble as well as occasion bouts with gas. Sylvia showed up to see me as well. The mail carrier brings letters, packages, and Valentines almost every day. I love all the attention!

02.08.2002 - Friday

After taking a nap with Mommy and Daddy in the morning, I went to visit Corky at St. John's Episcopal. Daddy and Mommy are trying to set up some kind of breastfeeding schedule to encourage me to transition back to the breast and away from the bottle. It is harder to breastfeed and tires me. I have discovered the joys of watching (staring) at shadows and the contrast between colors on the wall. All ready, I am an aesthetically-aware little man. My nurses from the Barbara Bush unit called me at home to check on how I was behaving (and to tease Mommy and Daddy about how much work I can be).

02.07.2002 - Thursday

Mommy called to set my first appointment with my pediatrician, Dr. Lever, for the 15th. Then she contacted the visiting nurses of Bangor to come weigh me and check my vitals. After taking a nap with me, she and Daddy have ferociously begun unpacking so much of the house that has been untouched since the move in December. They work very hard! After visiting my wonderful and sweet neighbor (our 93 year-old landlady, Doris), I went on my first outing to the grocery store and (ugh!) Wal-Mart. Mommy covers me up and hold me close because perfect strangers with their not-so-perfect germs often just come up and touch babies, especially ones as cute as I am or with such shockingly red hair.

02.06.2002 - Wednesday

Though Mommy wanted me to set my own schedule, she and Daddy have had to limit the lengths of my glorious naps because I would much rather sleep than eat. They carefully set the alarm to wake me through the night (and day). The door remains bolted and the phone unanswered since Mommy and Daddy just need some privacy.

02.05.2002 - Tuesday

The nurses say I am strong-willed and now I know where I get it from: Mommy! When she gets it in her head to do something, watch out! Mommy came in this morning and called all the specialists and departments involved in my care to clarify what my remaining needs were. Then she started telling the nurses she was leaving today (whether or not the doctors agreed) and asked for a prompt examination by the Neonatalogy Department. She called Daddy in Bangor and told him to come as soon as possible because she was ready to go. When Dr. Morrow (the substitute for the attending doctor) finally showed up in the middle of afternoon, she said she could see no reason why I should stay and thought I would blossom at home. She asked if Mommy and Daddy would like to stay until morning or to leave that evening. I don't think Mommy heard her because she was all ready running for the door. The drive home was uneventful; I slept. Daddy had half the house painted when I arrived. Though they set up a bassinet near their bed, I ended up sleeping with them half the night. I love being home!

02.04.2002 - Monday

I awoke in Mommy's arms because she decided to spend the night with me and keep an eye on my progress. She was very tired because the nurses' conversations would wake her as well as every baby's cry. It seems like no one knows when I am going home or what the specific requirements are. Mommy is very frustrated. She brought my car seat to the hospital to see if I could pass two hours tolerably sitting in it. She is advocating for my release. (The nurses agree with her and are trying to facilitate the necessary contacts). It has been long enough...and I am taking my feeds and gaining weight. Mommy told me she can do everything herself at home. Daddy agreed; he called and talked to me again on the telephone. I kept looking around to see where he was. Because various doctors are filling in for Dr. Judkins while she is on vacation, Mommy feels she is getting a whole rainbow of differing opinions on my progress. Today she was told that I might be here into next week and that I was scheduled for another head ultrasound on thursday.

02.03.2002 - Sunday

A rude shock awaited Mommy when she came in this morning to see me! Last night, the on-call doctor read through my chart and decided that I was due for a follow-up of my RSV synergist shot. They are supposed to be given monthly during the prime RSV season and I had just received one less than two weeks ago. Mommy was too tired to be too upset and numb from the whole hospital experience to do much about the mistake. She is tired of having doctors and nurses apologize to her. Her Bosnian friend, Igor Tomic, called from Pennsylvania after many months of no communication. (He is 14). Mommy says she wants me to learn many languages and to be culturally savvy. I have all ready made friends with Kenneth, a 9 month-old baby from Equador. He and I sit and drink from our bottles together. Mommy talked the doctors into feeding me when ever I am hungry. (I was previously getting 60 cc every three hours). I promptly took 77 ml! Daddy called on the phone and I listened intently as he talked to me.

02.02.2002 - Saturday

It has been an entire day since I have been without an NG tube (which means I have to take them all orally). The NG tube can exacerbate my reflux and distract from my chubby good looks. Daddy is still working at a maddening pace in Bangor. Mommy and I miss him a lot! While he is away, Mommy decided to get out with her old college girlfriends and do some contra-dancing. It is fun to see her dressed up like a dance gypsie. Her friend Alicia knit her new gloves.

02.01.2002 - Friday

My nurse last night told me I was getting heavy! (7 lbs. 2 oz.) Grammy Hill spent the night with Mommy and is taking her to Boston today to see uncle Deryn's re-enlistment aboard the USS Constitution. (They are going via train since the snowfall is rather heavy). I guess I will just hang out here for today. My favorite roommate Jamison is leaving for home. Mommy and Daddy will really miss his parents. Dr. Judkins, on vacation for a week-long vacation, will probably not be her for my bittersweet release from the children's ward. It looks as though that may be happening soon since I have done so well with my feedings. When Mommy came back to Portland, she bathed me and helped Grammy Hill feed me. She told me she pumped on the train (something I bet she never thought she would do)!

01.31.2002 - Thursday

My eating habits are as original as each of the snowflakes swirling outside my window. (We are in the middle of a massive snowstorm to be followed by ice). I greedily gulp down one bottle and shun the next. Dr. Judkins discontinued the Nystatin because Mommy is using gentian violet, which should treat us both. Everything it touches turns purple, like my lips and the breast milk stored in the refrigerator. Grammy Hill came to see me after work.

01.30.2002 - Wednesday

With snow drifting delicately downward, I am inside taking a long, warm bath with Mommy's help. She almost fell on her usual walk to the hospital because of the icy veneer covering the ground. Dr. Judkins discontinued the thickened feedings because of my tremendous gas pains. Daddy came over to see me after lunch and then went home in Bangor to do more work. I wonder what home feels like...The nurses have been using Mommy as a poor interpreter for her friend from Equador whose baby is across the hallway from me. She smuggled me out in the pouch of her overalls to go visit some of my roommates. She pointed out some overlooked symptoms of thrush and succeeded in getting me an oral suspension of Nystatin to treat it. She wants to try painting my mouth purple with a homeopathic remedy for yeast (gentian violet) since we may be passing it back and forth when I breastfeed.

01.29.2002 - Tuesday

How strange to be celebrating my three month birthday here! I just want to go home. Daddy fed me breakfast this morning and then put me in the swing, my new favorite place to sleep. He gave me a little gift to commemorate the occasion: a bag of sour, stinky feet (green gummies) because the tape from my oxygen sensors on my feet makes them a little stale smelling. The nurses and residents thought it was cute! The nurses suggested switching the type of grains used to thicken my feeds from rice to oatmeal since my stomach is rebelling.

01.28.2002 - Monday

The thickened feedings seem to give me a lot of gas! I burp often and sometimes let out some stinkers. The nurses are giving me some medication (simethicone) to help this since it can make me fussy and uncomfortable. Mommy went to another doctor's appointment to check on her stitches and to solicit a second opinion on the presence of an abscess. Mommy's doctor thought everything seemed fine considering the enormous stress Mommy and Daddy are enduring and that the strange pocket or lump in Mommy's breast can be monitored to see if it will subside or enlarge. (Please pray!) Dr. Judkins has decided to give me all my feeds orally (instead of periodic gavage) and has changed my feeding schedule to every three or four hours since I really need my sleep. Daddy came back in time to see my first ride in a swing! Since Mommy had a hard time holding me as long as she normally does, she put me in a swing to rock me to sleep. It worked; I loved it. The upright position helps my reflux and the swaying helps my gas.

01.27.2002 - Sunday

Mommy came in with a fever this morning. She called Daddy who told her to go down to the emergency department. She has mastitis (again) in the left breast. The doctor also seemed to think that there might be an abscess this time which would require an operation to drain it. Grammy Hill came to help her because Daddy is not here. She brought me quite a few new gowns to wear. Mommy slept most of the day, shivering and sweating. (Her temperature was 102F).

01.26.2002 - Saturday

After spending the morning in Mommy's arms, I took a small nap. I enjoy listening to classical music and staring at my penguin. Daddy is still in Bangor; I miss him. Mommy went home early (after dinner) because she felt too tired.

01.25.2002 - Friday

Daddy is still in Bangor and I miss him. Mommy came in early to feed me and to take a little nap with me. Then Daddy's aunt Darla came to visit me. She took Mommy out for some Chinese food because she needs to get out once in awhile. After getting Mommy's hair trimmed, they brought uncle Bill back to hold me a little while. I like to be held; Mommy and Daddy usually hold me at least 8-9 hours a day.

01.24.2002 - Thursday

Through the night I had quite a few Brady spells. I was too tired to take my whole bottle feeding this morning when Mommy came. Dr. Judkins is increasing my antacid intake and thickening (even further) my feeds. She even discussed putting me on continuous feeds via the Medfusion pump to decrease acid levels. Mommy found out that she still has infection in her body though the doctors are unsure of where it is located.

01.23.2002 - Wednesday

Grammy Hill slept over with Mommy and Daddy at the Ronald McDonald House. They all came in rather early to feed me. Grammy had to leave for work and Daddy had to head for Bangor. The physical therapist told Mommy that her feeding technique was impeccable. She responded with conviction that Daddy was the one who gets better response. (The nurses say that fathers often have the better luck with a bottle). My reflux bothers me quite a bit lately. Mommy is still sore and tired.

01.22.2002 - Tuesday

Dr. Judkins has increased my bottle/breast feedings to two in a row followed by a gavage feeding (through my nasal feeding tube). The thickened breast milk seems to help me not reflux and gag so much. Mommy's operation lasted only forty-five minutes and finished with no complications. The recovery took a long time though and Mommy told me she started to cry because she missed me. The nurses tried to help her pump and to speed her return to me. Grammy Hill came to visit me and to assist Mommy. (She helped me with my bath again). After the surgery when the nurse brought Mommy in her wheelchair, she was surprised to see a beautiful flower arrangement from Pattie awaiting her. I tried not to eat them before she got back... I have been trying to chew on my blanket, my hands, my wires, and anything else I can find.

01.21.2002 - Monday

After working with the physical therapist, I took a full feed via bottle from Mommy. She had several doctor's appointments today to follow-up on her breast issues and to resolve the recurring cyst problem. The doctor was able to schedule some operating room time tomorrow to marsupialize the cavity under her skin. It has been twelve weeks since I have been born and Mommy is kind of losing it. The nurses tease her that she has been around too long; sometimes she races down the hallway on one of the stools with wheels. She told me she cried a long time last night. Daddy still has so much to do to prepare for my homecoming. Please pray for them both!

01.20.2002 - Sunday

Grammy and Grampy Hill came to visit me and help with my bath time. I had a Bradycardia episode during the previous night and one during the day while feeding. I think Mommy and Daddy are tired; they took a nap beside my crib. I am still often too tired to try bottle feeding every time. The reflux can make me cry. Sometimes Mommy cries too.

01.19.2002 - Saturday

Daddy came over early to feed me while Mommy slept in and did some laundry! (He must really love me because he hates to get up in the mornings!) I am taking more and more through my bottle! Mommy breastfeeds me when I want to snack (since it does not really count towards my caloric needs in my care plan which still frustrates her). I am 6.5 pounds and growing! This afternoon I napped with Daddy on the pull-out bed. Sometimes we can fit all three of us in it for some snuggle time!

01.18.2002 - Friday

What a grand day for a field trip! Mommy and Daddy escorted me through an extensive maze of corridors in the basement of the hospital where the radiology department resides. After donning a lead apron, Daddy fed me barium via bottle while the feeding team and radiologists commented on my swallow technique while filming me continuously through digital x-ray. Mommy watched through the window and on the video screen. There is only minimal aspiration in the lungs but my reflux is pretty severe. (It is amazing to Mommy how I could have been so placid with all that acid in my lungs). After returning to my room, I took a nap with Mommy and Daddy. Then I had to get another RSV vaccination. Daddy gave me my whole feed through bottle! It had been thickened with rice cereal to help keep it down in my stomach. Mommy is "sneaking" me some kefir to help encourage good flora and bacteria in my stomach to encourage good digestion and low yeast levels. (She asked Dr. Judkins who said it was fine to let me lick at it but that the nurses might not be thrilled with the idea). Mommy and Daddy are going to the art museum tonight! It refuels them to get away from blinking monitors and absorb a few pieces of art.

01.17.2002 - Thursday

Daddy and Mommy met with the feeding team for my morning feeding. The barium tests will be scheduled for tomorrow. I will need to have an empty stomach so that they can verify any reflux problems. The speech therapist will need to be there through the entire series of x-rays taken so that they can determine whether or not I am aspirating my food into my lungs. Audrey came by to see me and hold me. She brought communion for Mommy and Daddy. I smiled at her after she said a blessing for me!

01.16.2002 - Wednesday

Daddy came in early to feed me since Mommy slept in (for a change). He is great! The feeding team consulted with him and recommended that I have supplemental oxygen given to me when I feed since breathing is complicated while I am eating. Dr. Judkins thinks it may be time to do a barium swallow so they can x-ray where the milk goes once I ingest it. Mommy cringes at this idea, but thinks it may help. She is in a lot of pain because her cyst returned. My eye exam went well (except for the part where they pried my eyelids open and I cried and Mommy almost did). Only one eye has any signs of retinopathy and it is self-resolving. My next exam is in six months. Weight: 6 lbs. 6.5 oz.

01.15.2002 - Tuesday

Some days are better than others. The pressure is on for me to take full feeds from a bottle, but I did not really feel like it. Though Mommy and Daddy tried to get me to cooperate, I had most of my meals via gavage. Mommy went to the breast center where she was told that the lumps were not cancer but they were not sure what was causing the pain. She is frustrated with doctors lately.

01.14.2002 - Monday

Though I am known for having a vigorous suck, I am not always able to swallow as well. The milk either runs out of my mouth or chokes me. When I decide to do something, I do it well. Otherwise, I sleep. Daddy laughed when Mommy put me to breast because it started spraying out like a fountain all over my face before I even latched on. It surprised Mommy! Usually it just drips out after I take a few licks. My biggest fan, Audrey, an Archdeacon of the diocese, came to see me yesterday. She comes every few days to pray over me and talk with Mommy and Daddy. She LOVES my red hair! We think she is swell.

01.13.2002 - Sunday

The nurses think I am very well-behaved. They told Mommy I am not fussy like so many other babies. When I cry, it is for a reason and that reason is a messy diaper. Daddy overheard them saying that I will probably "turn the corner" any day now and once that happens I should be on my way home. They predict it may happen within a week or two at the most.

01.12.2002 - Saturday

Sometimes a boy just needs his mother! Daddy thinks that sometimes when I make pouty lips that only Mommy's arms make me smile. She is very impressed that I can recognize people. I fuss a little when the weekend doctors (read: strangers) check me out, but I can recognize Mommy and Daddy's voice from across a noisy (thanks to my roommates) room. I like Dr. Judkins though. She is taking a long weekend in Rhode Island and escaping all the snow and ice we are having here.

01.11.2002 - Friday

I was so lonely today! The nurses played my choral and organ CD's to mimic the environment that relaxes me. Mommy and Daddy were in Bangor until after dinner because they had to go to a doctor's appointment. They rushed back to see me. After giving me a warm bath, they fed me via bottle. Mommy has been taking an inventory of all the wonderful gifts and clothing that I have acquired. She told me that I have been blessed with lots of love and lots of clothing. I do so like being naked though...

01.10.2002 - Thursday

After spending the morning taking a nap with Mommy, I was wide awake. The nurses thought I might be going through a growth spurt because I was wide awake and awfully hungry. Mommy finally articulated some of her frustrations to the nurses and residents today. She has not felt supported in her breastfeeding efforts. Though the hospital claims to be in favor of breastfeeding, the technical aspect of measuring everything that goes in (and comes out) of my body is not very Mommy-friendly. She does not feel like she is a crucial part of my care plan. Everything seemed to get on her nerves. Being patient for 11 weeks is very hard! In the early evening, Mommy and I had a little cuddle time and then she left via bus back to Bangor to see a doctor and to join Daddy. She looked so sad as she left so I puckered up my lips for a little kiss goodbye!

01.09.2002 - Wednesday

Although I was scheduled for my third eye exam this morning, Dr. Judkins said there was some kind of mix-up so it never occurred. It was delayed until next wednesday. Mommy has been taking so many pictures of me to send to friends and family. She has been busy writing all day. Daddy, hard at work on my new home, called to check on me. Mommy was excited because I did so well during my evening feeding. She says I am a night-owl like Daddy!

01.08.2002 - Tuesday

Mommy and I took a nap together first thing this morning! Dr. Judkins says I am making surprising progress in leaps and bounds. (I like her a lot...) Mommy commented on how easily I am calmed and how quiet I am (most of the time!) because she wondered if it was related to the lung tissue damage from the respirator. Dr. Judkins said that she has heard other babies with the same condition who were much more cranky. Another mother who spent the night in the room said she could not even tell if I was there behind the curtains that Mommy closes to keep strange faces and light away from my crib. The physical therapist showed Mommy some special holds to encourage me to remember to keeping sucking and swallowing. I just get so tired from all the work.

01.07.2002 - Monday

Daddy and Mommy talked to Dr. Judkins about getting me started on occupational and physical therapy to keep me in shape and encourage flexibility and physiological development. They are still trying to get into an infant CPR class and register to learn infant massage. Dr. Judkins thinks I look great (of course!) but also confirmed Daddy's theory that being on a respirator delayed some of my development so that it may still be a few weeks before I can take a full feed via bottle or breast. Mommy went to yet another appointment for her breast and got a referral for an ultrasound. She is tired of people poking and prodding at her. We all cannot wait to go home and have some privacy! The physical therapist came to consult with Mommy and said I had good flexion (muscle tone). They are putting together a feeding team and may even use a speech therapist to encourage oral/motor skills, especially related to feeding. Daddy left to do so work in Camden and Bangor for two days; he is busy trying to make a home for me and trying to keep the bills from forming a pile. At my 9:00 pm feeding with Mommy, I took 35 ml from a bottle...my personal best. I am eating 48 cc every three hours cause I am a hungry boy! The nurse says I weigh 6 lbs. 1 oz. now. Mommy calls me her little chub.

01.06.2002 - Sunday

My nurse decided to "spring clean" my room since my room has become cluttered with curious paraphenalia from various procedures. She was very proactive in encouraging Mommy to get an ultrasound done on her breast because the hot compresses, massage, and multiple antibiotics just are not cutting it. She recommended kangaroo care (skin to skin cuddling) and Domperidone (a drug not currently available in the US but available via the Internet from New Zealand). Daddy has been bottle feeding me quite often and I am starting to take more each time.

01.05.2002 - Saturday

A guy could get used to all this attention! In the morning, Mommy held me kangaroo style while we both took a little nap. In the afternoon, Sylvia and Becky came by to see me and then Richard and Sheila stopped in later that evening to give me some love. They have discontinued my caffeine though no immediate results will be apparent since it lingers in significant levels in my blood for a few days.

01.04.2002 - Friday

Uncle Deryn left today. He liked the wooden aircraft carrier the nurses gave me. Mommy went to the doctor's again! They just don't know what to think of her; she is one unusual lady. Dr. Judkins gave me one of my feedings via bottle and says that my technique has improved. It is a complicated thing for me to suck, swallow, breathe, and keep my heart rate steady. I watched a movie with Mommy because she doesn't like to put me down too much.

01.03.2002 - Thursday

Mommy is still sick. Uncle Deryn came to visit me and held me for quite awhile. I smiled at him just a little. He took Mommy out for Indian food. Yummy! Daddy came back from Bangor and they all went out for sushi. I have been very good. I stopped having any spells in the afternoon. Mommy spent the night with me again so that she could see me and rest. Daddy stayed until four a.m. helping Mommy with pumping and helping me with feeding.

01.02.2002 - Wednesday

Daddy and Mommy gave me a bath together this morning before Daddy tried feeding me again. Dr. Judkins gave us a special bottle (often used for cleft-palate babies) that allows Daddy to control the amount of milk I am getting. the nurses say I have tremendous strength in my suck but then I get confused what to do with it in my mouth. I usually de-Sat or Brady, coughing and sputtering a little. Mommy found a strange thumbprint size spot on the base of my head. Dr. Judkins thinks it may be a type of birthmark that acts like a mole and surmises that hair may not grow out of it. She says that premies often develop birthmarks outside the womb. I feel a little fussy today. The nurse thinks it is because I need to pass a stool but I just miss Daddy. He went to Bangor this afternoon to work on the apartment!

01.01.2002 - Tuesday

Since Mommy is not allowed to breastfeed me with pain medication going through her, Daddy has been giving me a bottle (only once or twice a day per doctor's orders). Eating can be stressful for a little guy like me! I ate all 25 ml in my first attempt. My feeds are only at 45 ml every three hours now. Many of the other mothers and nurses have commented on my idiosyncratic exercise routine; I am often found with one or both of my fists in the air. Several nurses have told Mommy that premies like to have their arms bound closely to their body when they are swaddled, but Mommy said she didn't think I liked it at all. Then, one nurse remarked how she had noticed that I hated it as well! I just like to keep my hands busy and moving.

12.31.2001 - Monday

Mommy came in very early to see my second tub bath ever. She likes to hold me while she rests. We even managed to squeeze Daddy into the fold out chair-bed with us! I am still having some spells of de-sats and Bradys. Since they often coincide with my feedings, they started me on an antacid because the spells may be indicating some form of reflux. I had the last of my immunizations for a few months. Mommy and Daddy are glad that they could be spaced a bit apart and that they had hospital supervision to smooth over any possible side affects. Grammy Hill and Richard came to see me for a little while. Mommy spent the night since she couldn't stand not seeing me until next year...ha, ha, ha. She still has a fever. The doctors are making her discard her milk temporarily since it has some heavy pain medications in it. Happy New Year's!

12.30.2001 - Sunday

I had a pretty good night last night; Mommy, however, didn't. The pain from the mastitis made her very uncomfortable, and this afternoon she went back to the ER because her temperature was rising (101.7 F) and the nurses scolded her. The doctors warned her that it often gets worse before it gets better. She just needs lots of rest and must make sure that she stays on top of her medications (and that she continues to pump to keep the milk flowing and the ducts clear). We will use previously frozen breast milk for the next day or two, as she is on a pain medication that comes out in the milk (the doctors don't want me to be too relaxed!). I was measured today and have added two inches to my length (not to mention the fact that I've almost doubled my weight). I may start getting some antacid with my feeds - the doctor today thinks that I'm having some acid-reflux (common in premies) that is causing my de-sats and Bradycardia episodes. I'm spending a good part of the day now out of my crib and cuddling with Mommy and Daddy; my monitor shows that I do best when I'm lying down right next to one of them (they tend to do best that way, too). Weight: 2,544 g.

12.29.2001 - Saturday

When Mommy walked in this morning she looked really tired and pale. She said she was not able to sleep much because of how much pain she was experiencing. The nurse told her to go to the ER because her temperature was high and she was dizzy. The ER doctors confirmed that she has mastitis (a breast infection caused by a plugged milk duct or ducts) and gave her more antibiotics. It is VERY painful. She can still feed me (if she can tolerate the pain) since it doesn't affect the milk. Mommy rested in the pullout bed in my room with me in her arms. We took a nap together! Since I no longer have stitches or lines that could get irritated by immersion into water, I had my first real bath this morning, which I liked a lot! Sylvia came to visit me bringing with her some charmingly soft stuffed animals. I especially like the piglet because it encourages me to eat. Mommy held me while I ate my dinner. I've had a few de-Sat episodes this afternoon, probably because the caffeine that I've been on is no longer therapeutic. Dr. Judkins sent some blood work to the Mayo Clinic to check my levels the other day; the results haven't come back yet. They will probably discontinue it soon, anyway, since it's not a long term solution. I'm actually starting to outgrow slowly these episodes and it may be coincidental that the progressive week I've been having didn't have anything to do with the extra caffeine. 11:00 p.m. - Daddy called and spoke with my night nurse. She says that I've been doing great all evening - no episodes! She did give me a glycerin suppository since I haven't had a really good stool in a day or so. That may be due to the vitamins that they give me with Mommy's milk (the extra iron can cause constipation). Weight: 2,530 g. (That's 5 pounds, 9 ounces!!!)

12.28.2001 - Friday

After much squirming, I passed my hearing exam! When I wiggle, it is hard for the sensors to get accurate readings on my vital stats. The monitors say I have had a few Bradycardia and de-saturation episodes, but they're not all really true, so I won't lose any sleep over it. (Actually, I lose very little sleep over much of anything)... Dr. Judkins prescribed Nystatin, a powder form of the cream Mommy is using, to treat a rash that may be related to her infection, though I have not developed thrush (the oral form of yeast infection)around my mouth. We have to keep an eye on that or we will end up passing it back and forth. I'm having a pretty good day, though.

12.27.2001 - Thursday

Today has been a very good day. Mommy went to the doctor to get a prescription to treat her supposed yeast infection. Dr. Judkins says that she doesn't think that I need any drugs, since I haven't shown any signs of thrush. Hopefully Mommy will feel better soon. Daddy and I gave her her very own breast pump for Christmas (complete with backpack) so that she can "pump in style" anywhere! She tries very hard to give me good milk to drink, and I love her for it. Also, now that I've gotten over my de-Sat-every-three-minutes problem, Dr. Judkins wants to try stopping the caffeine soon and see how I do. Mommy and I have started using a nipple shield when she breast feeds me and that has been helping me to latch-on better. My only problem now is waking up enough for Mommy to feed me. I want to sleep instead of eat, and I'm so used to the gavage feeding (through the nose, where I don't have to do anything) that it might take awhile for me get really interested. Dr. Birch (Daddy's organ teacher at the University) came to see us this afternoon and brought a nice gift; he's very nice.

12.26.2001 - Wednesday

The excitement must have worn me out because I had a few de-saturations and Bradycardias today. Mommy is starting a regimen to treat yeast infections because she has been very tender for the eight weeks she has been pumping. I will probably go on an oral suspension as well since I could re-infect Mommy via thrush in my mouth. Mommy is tired of the seemingly endless complications. Daddy is tired too. I had more vaccinations today for hepatitis B and pneumono-coccyl. After several sessions trying to get me to nurse more (one with a lactation consultant trying every trick in the book), Mommy finally handed me over to Daddy who let me suck on his finger while he massaged my gums. It is very comfortable to cuddle him!

12.25.2001 - Tuesday

Merry Christmas! When Jesus was born there was no room at the inn; I know the feeling. The doctor called Bangor to transfer me back home but the PICU and NICU there are full. Mommy came very early to see me so that they could weigh me before and after feedings, but the scale doesn't seem to be working well for the nurses. Daddy slept in since he has been so diligently working on our home. When he held me, I laughed out loud. Startled, Mommy turned around and I laughed again. They were impressed! Grammy Hill, Richard, and Sarah came to see me this afternoon and brought some gifts. I received many presents via mail as well. Thank you everyone!

12.24.2001 - Monday

'Twas the night before Christmas, and all through the PICU...Mommy told me the only thing she is "baking" this year is me. Dr. Judkins is amazed at the progress I have made overnight! She says it is pretty remarkable considering my history and supposed gestational age. They have taken off my nasal canulla so I am on room air. They have turned off the heater in my isolette so that they can move me into a crib again. And... la crème de la crème, I am going to be weighed before and after my feedings with Mommy so that they can stop feeding me through my NG tube and remove it. Mommy is elated but has no expectations since I am still not even "supposed" to be here. She says I do everything ahead of schedule. Daddy came back from Bangor today and held me. They walked to church but didn't stay very long at the service because Mommy started to cry. She told me she missed me too much. The fire department left an early gift by my bed. Daddy thinks it is too loud and obnoxious to be a baby toy even though it is from Sesame Street!

12.23.2001 - Sunday

Only two days until Christmas and I have been on my best behavior (not like one of my roommates who gives Mommy a headache). Dr. Connelly examined me and told Mommy I needed a good pediatrician soon. She recommended a pediatrician who specializes in pulmonary problems. The only lingering issues besides feeding and growing bigger are my bronchial pulmonary dis-playsia (also known as chronic lung disease). The affects of this may result in asthma or susceptibility to respiratory infections throughout childhood. Mommy snuck away between feedings to explore the town and do some Christmas shopping. Daddy is still in Bangor fixing up our new home. He will come back tomorrow with packages!

12.22.2001 - Saturday

Mommy came to see me very early to encourage me to breastfeed more, but I wasn't very interested most of the morning. She called Daddy to tell him that I had not had any Bradycardia or de-saturations of blood oxygen all night. After my mid-morning meal, Mommy went to change my diaper and I "exploded." She had to change my sheets and my clothes and clean my bed! Daddy came in to see me after lunch and then left for Camden to get some work done. He might go to Bangor as well to feed our fish and pick up packages for Christmas! He bought me a winter coat that matches his so that we can be twins next year.

12.21.2001 - Friday

After having an EEG and a brain ultrasound, Dr. Allen said I looked pretty good. Dr. Judkins gave me my first scheduled childhood immunizations for polio. Mommy and Daddy went shopping for a special size car seat. Mommy's milk culture came back with "acceptable" levels of infection (whatever that means).

12.20.2001 - Thursday

When Mommy walked in this morning, Grammy Hill was all ready here. Last night, I had a lot of rough spells. My body temperature has been too low so they put me back into an isolette for a day or two to warm me up. The nurse has been "bagging" me a few times this morning (giving me supplemental, pressurized oxygen) because I cannot seem to keep my blood oxygen levels high enough. She paged the doctors to come and look at me. Dr. Judkins isn't too worried, and is trying to convince the PICU nurses to stop overreacting and just give me the extra oxygen when I need it. My lungs just need lots of time to heal. In fact, this afternoon I picked up and even cuddled with Mommy and breastfed. I spent my entire gavage feeding (through the nose tube) at Mommy's breast; I am doing super learning to suck, swallow, and breath all at the same time. Dr. Brown, the surgeon, came and took my Broviac (central line) out - it's been in for almost seven weeks and it was time to come out. It gave me an infection last week, but that's all cleared up now. My nurse said I was great during the whole procedure. Mommy and Daddy were shocked to see that while laying on my belly I picked up my head and pulled myself up. I almost crawled! (They said I was one in a million...maybe it was the caffeine that they just started me on to stimulate my breathing a little). Weight: 2,397 g. (That's 5 pounds, 5 ounces!!!)

12.19.2001 - Wednesday

This morning they needed to bag me again since my lungs still need some assistance. Mommy came in early to see me. Daddy was still sleeping (I can relate; I sleep a lot!). Mommy stayed almost all day (except to take a nap) because she is still trying to get me to breastfeed longer. I am doing a great job latching on and sucking, even though I usually fall asleep quickly. I am still very young to be breastfeeding, so this is a very good start. Grammy Hill came to see me. She is amazed that in four days I have turned from looking like a little old man to a true baby face!

12.18.2001 - Tuesday

The doctor came in today and told Mommy that she couldn't understand why she was not allowed to give me fresh breast milk or to breast feed me since the major issue involved the problems associated with breeding germs during storage (freezing). This difference of opinions and understandings in the staff upset Mommy; she has been working very hard to maintain her milk supply by pumping. Plus, I think she just wants to cuddle with adorable me. So...this afternoon I made my first attempts at suckling. I was vaccinated for RSV (a deadly respiratory disease that many premies and newborns are susceptible to). Mommy went out to an organ concert with Daddy since the snowstorm prevented them from going to Bangor for her doctor visit. She returned to find the nurse had given me formula again even though Mommy left fresh milk for me. It has been a long day for Mommy! I, however, am doing very well.

12.17.2001 - Monday

At the start of the my first day in PICU, they put me in a crib (which Mommy thinks looks atrocious since it is entirely chrome, a metal prison). My temperature is running a little bit low now that I am out of the isolette, but my "normal" temperature seems to be a bit lower than usual, anyway. I am quite happy here, and appear to be very comfortable. Daddy thinks I am a very good natured baby, considering how strong and tenacious I have had to be. After Mommy and Daddy returned to the Ronald McDonald House for the night, my lungs had a hard time absorbing enough oxygen. The nurses called them to tell them that I needed to be "bagged" (that's when they give me supplemental oxygen and help expand my lungs with a special bag that goes over my mouth). This is not really a huge problem, considering that I was on the respirator for such a long time. My lungs simply need time to heal themselves. Weight: ?

12.16.2001 - Sunday

Mommy came to see me after church. She held me all afternoon before Grammy Hill came and cuddled with me a little. The nurses thought I was doing so well (and the NICU was rather crowded) so they moved me upstairs to the PICU (Pediatric Intensive Care Unit). Mommy and Daddy were surprised but pleased to see me in a room that is more private and quiet. There are only four babies in this room; in the NICU there were twenty-five! It is nice to have Daddy back from Bangor. Weight: 2,252 g.

12.15.2001 - Saturday

Daddy had to go to Bangor again to make a home for Mommy and me. He came to visit me before he left. Mommy was thrilled that they moved me to a bassinet. I am trying hard to keep my temperature in range now that I am out of the isolette. Mommy dressed me in a sophisticated jumpsuit from Nanna LaCombe. All the nurses think I am so cute (and I am)!

12.14.2001 - Friday

My CRP count is down (a measurement of infection and inflammation shown in the blood). Mommy put me in a cute little baseball outfit from Nanna LaCombe. I am hot stuff, but Mommy thinks that soon I am going to be too big for my britches literally. As we sit together in a rocking chair, she is teaching me my prayers while I am fed. Daddy came to see me while Mommy was talking to me, and he got to hold me for an hour while Mommy ate lunch. The nurse practitioner said that as soon as the infection is gone they will probably remove the nasal canulla, which means that I will be on room air with no extra oxygen! Also, I may be moved from my incubator to a crib! They will probably remove the central line soon, too. Weight: 2,120 g.

12.13.2001 - Thursday

I am getting hungry! (What does a boy have to do around here to get a veggie burger!) Because I have to wait until Mommy's antibiotics start working to have more breast milk, they are starting me on soy formula since cow's milk is not readily digested by my tender tummy. Mommy is pretty upset about the breast milk issue. The surgeon took my stitches out today. Mommy and Daddy were given tickets to the Portland Symphony's Christmas concert. After their date, just to keep Mom and Dad on their toes, I thought I would surprise them with a "shower" when they changed my diaper. Mommy laughed because it got on her shirt. They put me in a blue nightgown because the gowns the nurses put me in are festive but not exactly suave.

12.12.2001 - Wednesday

The nurses seem to think I have an upper respiratory infection (perhaps my Broviac line is affected). They started me on antibiotics though I have no fever and still give quite a few grins to Mommy and Daddy. Mommy held me off and on for four hours today. When Daddy came back from Bangor, he held me for awhile and we talked man-to-man.

12.11.2001 - Tuesday

Daddy had to go home to Bangor to do some work on the apartment; I miss him. The nurses tested Mommy's milk and found traces of infection in it. (This is slightly controversial since the evidence showing the transmission of infection via ingestion is sketchy at best). The nurse practitioner said she felt it was an antiquated practice. Most mothers carry acceptable levels of trace micro-organisms that newborns can handle intestinally. Premies are the ones at greater risk. As a precaution, they stopped my feeds and put me back on my intravenous TPN. The surgeon examined my central line (Broviac) and said that it looks fine, even though the sutures holding it in place have detached. They will not touch it unless it causes a problem.

12.10.2001 - Monday

This afternoon, they extubated me and put me on nasal canulla (which supplies only supplemental oxygen to my lungs through my nose). Mommy hung a picture of herself and Daddy and also gave me my own miniature Bert doll to hold. Some of my hair is rubbing off around my face. The nurse told Mommy that most premies rub off their hair. (She asked around for a second opinion; another nurse told her about forty percent lose their hair). Sylvia came to visit me today. She was impressed at how large I am getting and how strong I am because I can arch my back and lift my head off Mommy's chest.

12.09.2001 - Sunday

The whole world seems covered in the winter whiteness of snow. Mommy and Daddy visited me and then went to the cathedral. They put in an NG tube today and started giving me breast milk. Dr. Quinn came in and removed the chest tube that drained fluid from my lungs. My nurse put me in a candy-cane gown made by the ladies auxiliary. Daddy thinks it clashes with my hair; Mommy was just thrilled to see me in clothes. The sutures on my Broviac line have detached from my skin. A surgeon will examine it tomorrow. Daddy held me for almost two hours tonight; we still have our own private talks. While he was holding me, Aunt Darla and Uncle Bill came to see me.

12.08.2001 - Saturday

Today Mommy and Daddy are driving up to Bangor to move into their new apartment with the help of Grammy and Grampy Hill, Sylvia, and some of their friends from choir. I miss them! Mommy picked out the color for my nursery to be painted: pastel sage. At least it won't clash with my hair...

12.07.2001 - Friday

Though I had a rough spot through the night with my blood gas (carbon-dioxide) levels, I am getting stronger and needing less help from my respirator. Because of the frequent tests on my blood, the nurses tried to put in an arterial line but failed after five attempts. Mommy says my heels look brutalized because she counted over twenty pricks on the soles of my feet. Daddy took her out to the art museum for awhile. She told me all about the paintings and sculptures.

12.06.2001 - Thursday

Mommy and Daddy came to see me first thing this morning. The NICU will be closed for several hours this afternoon to create a sterile environment for the surgical team who will be working on my heart. I was scheduled for 2:00 pm but the cardiologist was delayed until around 6:00 pm. Mommy and Daddy went out shopping to get some pizza and to select a color scheme for the nursery. My nurse Margot called Daddy on the cell phone to keep him updated and to let him know when they were done operating. Mommy and Daddy rushed back to check out my latest scar, a chicken-wing flap under my left arm. I also have a tube coming from my chest to drain the fluid out of my lungs. I was tranquillized but still managed to peek at Mommy and Daddy when they came in to see me.

12.05.2001 - Wednesday

This morning, Mommy and Daddy came to see me rather late in the morning. Mommy had to go to the ER to have a cyst removed. She looks tired. My heart murmur is still giving me problems with my lungs. The doctors are planning surgery for tomorrow. They had to give me another blood transfusion (this will be my fifth, from a third donor) to increase my hematocrit (red-blood cell) levels.

12.04.2001 - Tuesday

Once again they have decided to try one last round of Endomethacin to close the murmur (PDA) in my heart. Dr. Allen told Mommy and Daddy that there is no sign of any basal ganglian damage! He says there is no structural damage or developmental impairment. The nurses all love my strawberry-blonde hair; Mommy doesn't know where it came from.

12.03.2001 - Monday

I love all the attention! They did an EEG, EKG, and a head ultrasound. Dr. Boggs says that my PDA is small now. It sounds like surgery will be delayed while they try one last round of Endomethacin; my day nurse Mary says sometimes three's a charm. My EEG showed no seizure activity so they took me off my Phenobarbital. No more seizure drugs! I am getting an eye exam on wednesday to check for Retinopathy, which is common in premies.

12.02.2001 - Sunday

Today I am traveling via ambulance in my space-age looking transport isolette. My nurse Lisha is going to miss me. I was admitted to MMC in Portland at 4:30 pm. Mommy and Daddy came to meet me soon after I arrived. They were surprised to see me so active and upset, but I calmed down when they repositioned my breathing tube. My nurse Judy thought I was cute. (Actually they all think I am cute, but Mommy says not to be vain). Dr. Morrow immediately took me off my Dilantin because it wasn't therapeutic. Daddy came in to say goodnight and met my night nurse Deb. Then he went back to the Ronald McDonald House where he and Mommy are staying.

12.01.2001 - Saturday

Just when things were getting kind of dull around here, I decided to shake things up. The PDA is back, so the valve in my heart is open again. My lungs sound a little hazy (they fill with fluid when the PDA happens) so they are restricting my fluid intake and have stopped feedings once more. Lisha says they had to re-intubate me because breathing was taxing my energy level. Dr. Akilesh says that it looks almost certain that I will have to have surgery on my heart in Portland (about two hours south of here), and that I will leave probably sometime tomorrow (sunday). Fixing this valve problem will probably clear up the breathing issues as well. The results of today's EEG show a decrease in the major seizure activity, though there is still some activity in the background. Also, my brain is growing according to schedule (I could tell I was feeling smarter). Mommy and Daddy are, of course, coming with me on my excursion. The doctors gave them a pager so that they can be reached whenever I want them. They will be staying at the Ronald McDonald House (So, this is what all those hamburgers that Daddy eats help fund). Please pray for more miracles! Weight: 1818 g.

11.30.2001 - Friday

Once the dam breaks, there is no stopping it! I've been pooping all day and feeling much better by the minute. They weaned me off the respirator very quickly today, and this afternoon I went from CPAP to the lighter, more-comfortable nasal canulla again. Mommy held me again today and that always makes me feel better. Daddy thinks I look like Frankenstein because of the IV that Sarah put in my scalp. Lisha is my nurse today, and Sarah will watch me tonight. Daddy called later this evening; I'm doing very well. Weight: 1738 g.

11.29.2001 - Thursday

It's my one-month birthday and Mommy and Daddy wanted to bring me a pound cake. (How clever, since I have gained a pound since birth!) Today the doctors are beginning to worry because I haven't had a significant bowel movement yet, so they called the pediatric surgeon to come and check me out. Dr. McGill didn't seem too worried; he told them to start by giving me an enema or two since the glycerin suppositories have not helped. If that doesn't work then tomorrow they will do a barium enema to see where the blockage is. Annette is my nurse today and she gave me the enemas starting at 3 p.m. - so far I've passed a little bit, but still not enough. 11:00 p.m. - Daddy came to see me and as he was holding my hand I stopped breathing. Dorothy came, and then Dr. Appel came, and then a whole bunch of other people came to take care of me. They had to re-intubate me and put me back on the respirator. The good news is that it was probably caused by the fact that I passed my first stool! It must have been too much for me... After that I did much better, and being on the respirator is actually giving me a rest. Dorothy thinks that they will be able to wean me off the respirator again very quickly. Weight: 1846 g.

11.28.2001 - Wednesday

Some days I don't know what I feel. Even snuggling on Mommy didn't feel comfortable. They switched me to the lighter nasal canulla to accommodate the EEG. All the electrode goop messed up my hair. Lisha cleaned it up because I am expecting a lot of company this afternoon. Mommy's friends Alicia and Susan came to visit. Daddy's cousin Kristi stopped by in time to watch me have my diaper changed. Dr. Akilesh is talking about weaning me off of Dilantin, one of my anti-seizure drugs. He is also recommending that I take a type of diuretic that may help clear liquid out of my lungs. My hemoglobin levels are still low so I am a little pale. They are holding off giving me another transfusion (my fourth?) to see if I can start producing some in my bone marrow all by myself. I am almost up to full feeds (which means no more TPN intravenously) but the issue now is whether I will be able to have a bowel movement. There are rumors they want to take out my Broviac line (which would mean another surgery). Then I will have only one tube! Weight: 1834 g.

11.27.2001 - Tuesday

Though they warned my parents that progress was rarely without many setbacks, today's news still shook up Mommy. Last night, I had several episodes of Bradycardia (when my heart rate was too low) and when I just forgot to breathe. Lisha said that I was also having trouble keeping my body temperature up. I figure that's quite a bit to be doing all at once. This breathing stuff tires me out! Mommy and Daddy don't worry too much, though, because Lisha watches me very carefully and keeps me comfortable. I am back on the CPAP, though my feedings have been increased because I am a hungry boy. (This feeding tube is kind of getting old though...). Daddy held me 'kangaroo-style' this afternoon; I cried a bit at first but soon settled down and both Daddy and I took a nap together. He and I have special private talks. Dorothy is my nurse tonight, and she let Mommy hold me this evening. Dorothy is very nice to me and is very helpful to Mommy and Daddy. Really I've had a pretty good day. Hopefully we can try being off the CPAP again very soon. thursday is my one month anniversary; Mommy and Daddy are planning a little party for me! Weight: 1748 g.

11.26.2001 - Monday

More good news! The results from the milk mix-up are back and neither I nor the other mother appear to have any diseases (HIV, etc.); Mommy and Daddy are very relieved. Mommy held me 'kangaroo style' (skin-on-skin against her breast) for a long time this morning, which I enjoyed very much. Pattie, my day nurse, says that this afternoon they hope to not only increase my feedings but also to change my oxygen delivery from CPAP (Continuous Positive Airway Pressure) to a nasal canulla, which means that I will be entirely off the respirator - I will only be receiving oxygen, but not help breathing (on CPAP the ventilator wasn't breathing for me but it was supplying pressure to help keep my lungs expanded after I exhaled). It also means that I will have only a small line to my nose instead of a lot of klunky stuff around my face. I can't wait, because I keep trying to pull it all off my head, anyway. I haven't had any apnea spells lately, either. I'm still waiting for the results from last week's MRI. Daddy says he hopes to update the pictures tonight and will include some of my nurses (I love you, Lisha). Even though Pattie is my nurse today Jerry has been helping, too, and we've had lots of fun conversations together. I miss him. (I miss Lisha and Sue, too - they've been off for a few days now). 10:00 p.m. - Well, the glorious freedom of the nasal canulla was fairly short lived. I did very well with it for the first few hours but then had a few episodes in the early evening, so I had to go back on the CPAP at about 9 o'clock. Otherwise I'm having a pretty good night. They've almost doubled my feeds since yesterday! Dorreen is keeping watch over me tonight. Weight: 1672 g.

11.25.2001 - Sunday

I'm having another good, stable day today. Mommy changed my diaper again (it was quite wet). I've been very hungry and they've been increasing my feedings. I'm also crying more (a good thing). I have a very small murmur, but Dr. Hagarty doesn't think that it's a problem. So far the PDA has not come back and my blood pressure has been very good. Beryl is my nurse today; she speaks kind words to me. Mommy and Daddy came back later tonight to see me but I was sleeping. They Sat with me for a long time. Suzanne is my nurse tonight. Weight: 1674 g.

11.24.2001 - Saturday

This morning when Mommy and Daddy came to see me I tried to see what they looked like. I was quite awake for almost thirty minutes. How exhausting! I then went back to sleep. I've had a few episodes of apnea and Bradycardia (when my heart rate goes below 80), but both of these things are pretty normal for someone as special as I am and they should clear up by the time I reach term. Beryl is taking care of me today and I think she's swell. When Mommy and Daddy came to see me tonight they brought a picture of them to keep me company. Dorothy is my nurse tonight. Weight: 1760 g.

11.23.2001 - Friday

When Mommy and Daddy came to visit me this morning, I thought I would let them hear how I felt about everything. Mommy looked elated to hear my quiet crying. (Maybe when I get louder, she will be really impressed). Everyone was really excited because I graduated to a less critical room. I'm still off the respirator, but I had two small incidents of apnea (I forgot to breath). Sue said this is pretty common in infants my age since the part of the brain that controls automatic breathing isn't fully developed yet, and she suspects it was just because I've been so tired today. (Yesterday I was very active late into the night). Sue monitors me very carefully and tickles my foot (which makes me start breathing again) whenever I forget to. Melissa is my nurse tonight. Daddy just called and she says that things are fine - I'm still very sleepy. Uncle Deryn came to visit tonight. He drove all the way from Connecticut just to see me! Everyone says I am starting to look just like him. Weight: 1668 g.

11.22.2001 - Thursday

Today is my first Thanksgiving – gobble, gobble! I have so much to be thankful for this year: Mommy and Daddy, the incredible staff at the NICU, all the presents and prayers from my friends and family and internet fan club. (I had more hits yesterday than Ricky Martin). Now that they have weaned me off the respirator, they have this strange-looking tube in my nose to maintain pressure in my lungs; it makes me look like a little pig! Mommy and Daddy held me again today, and Grammy Hill got to hold me this afternoon! (Grammy told me that she was holding me for all my grandparents). Sarah keeps me company again tonight. Weight: 1605 g.

11.21.2001 - Wednesday

Good news! I had a really stable night last night. In fact, it's been so good that I'm practically off the respirator; I'm going to have an MRI at noon, and then afterwards they will extubate me. Lisha says that I should be feeding again this evening. (I love you, Lisha). 11:30 a.m. - I had an EKG just an hour ago (Daddy watched), and it appears that the valve has CLOSED (thank you, Jesus). Dr. Hagarty says that if in fact it has fully closed then the chances are very good that it will stay that way. I couldn't be weighed last night because of a problem with the scale. Sarah is my nurse tonight. Weight: ? g.

11.20.2001 - Tuesday

Nancy (very nice) is my nurse today. I am having a good day - I've been moving around a lot and opening my eyes and looking at Mommy and Daddy! Mommy sang to me earlier; I liked it. I'm going to have another MRI tomorrow to check the growth of my brain, and I should have my last dose of Endomethacin this afternoon. From there we'll have to wait and see if it permanently keeps my valve closed. Mommy and Daddy are praying that I won't have to have an operation, and have faith that it will stay closed. Daddy changed my diaper and washed my eyes and mouth. More later - I need to sleep now. 8:00 p.m. - Dorothy is my nurse tonight. Mommy washed my eyes and mouth. Then she took my temperature and changed my diaper. She has this baby stuff down all ready. Weight: 1624 g.

11.19.2001 - Monday

Dr. Knight reported that I am a chromosomally-normal male. (I wasn't really worried...) Lisha says I am retaining water again. Mommy thinks I sound rather raspy. I peeked several times at her while she cradled my head. (I didn't want her to think I was playing favorites with Daddy). I love you, Lisha (and Sue, too). 8:00 p.m. – Sylvia says I've been doing very well. In fact, I've progressed to the point where I'm controlling the respirator instead of it controlling me! I had an EKG again today to check on the PDA and it shows that the valve is closing (yeah) - keep praying that it will stay closed. Weight: 1648 g.

11.18.2001 - Sunday

Lisha says that I had decreased seizure activity last night and that I needed less assistance with my breathing. The doctors increased my Dilantin levels to a more therapeutic level for my current weight (which is getting bigger slowly but surely). However, my fluids are still extremely restricted to help encourage the Endomethacin to work on my heart murmur. We should know whether it does in a few days. I really don't want more surgery. Lisha made a turkey for me out of my footprint and construction paper today. She's a lot of fun. 11:00 p.m. - Daddy just came to check on me and found me fast asleep. Sylvia says that I've been doing very well tonight; my tidal volume is really good again. Weight: 1524 g.

11.17.2001 - Saturday

The roller-coaster ride seemed to take off again for Mommy and Daddy. They found out that the Endomethacin doses didn't help my heart murmur (PDA). The doctors are going to start me on a second round, but that has a fairly small chance of working. They alluded to moving me to Boston or Portland for surgery if this doesn't work. My blood pressure is all over the place. Also, Mommy got very upset when she found out that yesterday a little accident occurred. I was given someone else's milk (I wondered why it didn't taste like tapioca pudding, Mommy's favorite craving) which created a risk of exposure to anything the other mother may have. They are going to test the other mother to see if she has anything that I might get. The EEG from yesterday shows that I am still having seizure activity (although it's not always outwardly visible). Lisha and Doctor Knight are caring for me today. 4:00 p.m. - Lisha took out the IV the was in my belly button, because it's time for the cord to come off. 11:00 p.m. - Daddy called to check on me. Sarah says that I'm doing okay for now. Please keep praying diligently! Weight: 1580 g.

11.16.2001 - Friday

When Mommy and Daddy came in to visit me this morning, I was hooked up to a video camera and a continuous EEG read which will take several hours. Janet, my day nurse, says I am off antibiotics since my pneumonia cultures came back negative. Daddy gave me my first toy; a gift from Mommy's friend Nancy. (It's a baby hippo to encourage weight gain). I am all ready up a half pound since birth! 8:30 pm - now it's evening and Dorreen just gave me my dinner (mommy's milk is still the best). Weight: 1590 g.

11.15.2001 - Thursday

I'm looking better today. My blood pressure dropped again last night and the doctors could hear a murmur (very common in premies) so they feel that I do have PDA to some degree and have given me a drug to close the artery. It seems to be working and I feel much better now - not to mention that my blood pressure is really good. The x-rays indicate that my lungs are clearing out. Dr. Knight examined me this morning and says I'm much bigger than I was when he saw me last and that I look much better. I think I'm still having some seizure activity, although it appears to be less than before. Mommy and Daddy tell me that they are getting ready to move into a new, larger apartment in a much nicer neighborhood (yeah). I'm also moving around a lot more, probably because they are trying to back-off on the anti-seizure medications. I think I will spend the day sleeping. Sue is watching over me again today and Sylvia keeps me company tonight. Weight: 1545 g.

11.14.2001 - Wednesday

My skin is rather pale today and I don't feel too well. I still need the extra support of my respirator, but Lisha says my tidal volume (!) is really good today, so it's not so bad. The doctors think I may have some liquid in my lungs (the beginning of pneumonia?) because of a sketchy x-ray so they started me on a diuretic of some sort and an antibiotic. Dorothy is my nurse again tonight. Weight: 1525 g.

11.13.2001 - Tuesday

Today I'm back in an isolette which keeps me cozy and warm. Mommy and daddy held me again and that always makes me happy. It makes them very happy, too. Lisha say that I am off the Dopamine and they are starting to wean me off the Hydrocortisone and some of the anti-seizure medication. I'm having another EEG tomorrow to check for more seizure activity. I started feeding again (mommy's milk). Dr. Akilesh wants to start weaning me off the ventilator, as well. I'm almost breathing on my own now. Things are very busy around me, as more babies have come into the NICU. Dorothy watches over me tonight. Weight: 1500 g.

11.12.2001 - Monday

I have a new doctor today (Dr. Akilesh); he's very nice. He said he wants to start weaning me off the Hydrocortisone and some of the anti-seizure medication. Lisha moved me back to a warming tray this morning because I had such a bad night last night, but she said I should be back in an isolette in a day or so. I had an EKG this afternoon to check for PDA, and thank-you, God, it turned out negative. By evening I was off the Dopamine again, and my respirator has been turned down. Aunt Tina, Grammy and Grampy Hill and Sarah visited this evening. Melissa is my nurse tonight - she says at 2 am she will return me to an isolette. Weight: 1448 g.

11.11.2001 - Sunday

Sue was my nurse again today. Mommy washed my face and changed my diaper. Sarah was my night nurse, and all was very stable until about 10 pm when my blood pressure decided to do strange things. Dr. Hagarty put me back on Dopamine to raise my blood pressure, and ordered an x-ray to check for PDA (a problem with a certain artery common in newborns). The x-ray shows that my heart is fine, but I will have an EKG tomorrow to be sure. Weight: 1442 g.

11.10.2001 - Saturday

Daddy changed my diaper and washed my face this afternoon. Mommy and daddy held me again. I 'peeked' at daddy, and my day nurse Sue told daddy to talk to me. Aunt Lorraine visited this afternoon, and my oxygen and respirator levels were very good all day. Sarah was night nurse. Weight: 1550 g.

11.09.2001 - Friday

Today Lisha moved me into an isolette which looks a little more like a bake oven than the "warming tray" but is more womb-like. My respirator is down to 40 and they are weaning me off dopamine. Weight 1470 g.

11.08.2001 - Thursday

The MRI came back from Boston Children's Hospital with a resounding consensus: no Septo-Optic Dysplasia and no Lissencephaly! God is good. They dated my brain at a younger gestational age than originally supposed. I guess I damaged some of my basal ganglian during delivery when I became oxygen-deprived, giving me eschemia and hypoxia. (They had to revive me at birth). Dr. Hagerty says much of that can be healed with a stable environment and good nutrition. I had a very long seizure this morning. This can cause damage because it depletes the available oxygen to the brain. Weight 1500 g.

11.07.2001 - Wednesday

Bill, my day nurse, let Mommy and Daddy hold me again! They took turns videotaping me; I love all the attention as long as I don't get over stimulated. Grammy Sheila came when I was in the middle of all this love. Finally, they took my catheter out! Mommy was so glad since she thought hers was rather uncomfortable. No visible seizure activity today! Weight: 1440 g.

11.06.2001 - Tuesday

Mom and Dad looked kind of sad today. The doctors read the recent MRI and found that the degree of Septo-Optic Dysplasia was not as severe as it could be but that my brain looked a little too smooth. They are sending it to Boston for a second opinion on the Lissencephaly. The eye exam confirmed that the optic nerve seemed entirely present, though my eyes are a little pale (I’m still too young to know what that may mean). Another exam is scheduled. The seizures seemed to stay away today. Mommy was able to change my diaper. Weight: 1416 g.

11.05.2001 - Monday

Jerry, my nurse, helped Mommy wash my hair which was sticky from all the gel they used during my EEG. She even put Chapstick on my mouth. He is always showing Mommy how to do cool things like wash my eyes and clean my mouth. Dr. Hagarty is my pediatrician for this week. Weight: 1380 g.

11.04.2001 - Sunday

I had a lot of seizures through the night which is when they seem most likely to come. Mommy came in to show me her new haircut which made her feel so much better since she had a frazzling week. After Mommy and Daddy left, I had another seizure at 3:30 pm and they changed my medication to Lorazipam instead of Dilantin. Weight: 1590 g.

11.03.2001 - Saturday

After a good night, the doctors tell Mom and Dad that they have to surgically-implant a new central line through my shoulder since the PIC line infiltrated. I was moved from isolation and taken off Dopamine. My respirator was also lowered. Grandma and Grandpa Bailey went home today. Uncle Deryn left, too. I think my hair has a little red in it like his. Weight: 1445 g.

11.02.2001 - Friday

Hydrocortisone is being given to me to help replace the missing hormones and improve my cortisol levels. They did an EEG to check out my anti-seizure medications and they put in a catheter (which I don't like). Mommy was discharged from the hospital today. She looks tired. Weight: 1365 g.

11.01.2001 - Thursday

Dr. Tuckerman (the endocrinologist) hasn't gotten the cortisol levels back yet and they are having trouble putting a new PIC line through my delicate veins. I've also started having some seizures. So far, I have had two Surfactant treatments to help keep my lungs from being too "sticky." For the first time, Mommy and Daddy were able to hold me. My nurse Jeremiah helped take pictures of us! Grandma and Grandpa Bailey came all the way from Pennsylvania to see me, and they showed up while Mommy and Daddy were holding me. They tell me that my name is Ethan, but I all ready knew that! Mommy and Daddy actually almost sleep through the night for the first time. Weight: 1420 g.

10.31.2001 - Wednesday

During a routine sonogram the doctors discover that the midline of my brain is missing a small division which means that I will have trouble with my pituitary and adrenal functions and my optic nerve. Mommy comes in my room and complains to the nurse (Jeremiah) that she does not know what is happening. Then doctors start coming around to tell them. They look so sad and tired, but still come in and pray with me which I like since we don't get to hang out like we used to before bedtime. Jerry, my nurse, encourages my parents by saying that infant's brains are amazing things. They are hard to predict. He gives Mommy a hug. My PIC line has infiltrated, so it has to be removed. They will try to put in a new one in a few days. Also, they are sending my chromosomes off to be analyzed (wow), and I am scheduled to have an MRI very soon. Jerry showed Daddy how to change my diaper today! Weight: 1425 g.

10.30.2001 - Tuesday

I am pretty tired after yesterday's events. The people at the hospital have me on this strange warming tray hooked up to a lot of strange machines that beep whenever I start doing something different. I am wearing a protective eye cover while the billi lights are shining over my bed. This is used to treat my billirubin (a slight degree of jaundice). Mommy and Daddy come and look at me a few times today to pray over me. They only sleep a few hours. Weight: 1425 g.

10.29.2001 - Monday

Mommy and Daddy always talked to me every night before bedtime. I would kick and poke Mommy just to make sure she remembered I was in there, but today I wanted to come out! Mommy didn't feel great while she was teaching at school so she asked to go home early. She called Daddy who said to call the doctor. She really just wanted to take a nap and sleep through some moderate cramps that were bothering her. The nurse at the clinic told Mommy that they were just pains not contractions but Mommy wasn't sure what to think. Daddy met her there and helped her breathe and relax. Finally Mommy wanted to lay down and Daddy tried to speed up the doctors to examine her. When they looked inside, they were shocked. My placenta and cord were all ready hanging down into the birth canal and Mommy was all ready 5 centimeters dilated. They gave her shots to stop the contractions, but it didn't help. Mommy started crying and the ambulance came. I was getting excited but also started having trouble getting enough oxygen. At the hospital, they rushed Mommy and me through the preparations and then quickly pulled me out. (I don't remember this part because I needed resuscitation!) Daddy was there the whole time and after I was breathing I tried to peek at him, but I didn't get to see Mommy until much later that evening when she made the nurses put her in a wheelchair so she could come see me. Just before I went to bed Tim, the nurse-practitioner, put a PIC line into my arm that goes directly to my heart so that they don't have to keep sticking me with new IV's every three days. He's very nice. Dr. Knight is my pediatrician for the week. Weight: 1322 g.