I just found this video about Will's NICU. The first family that is interviewed (Izzy) was at the hospital at the same time we were. I recognized the mother from college and talked to her some. Coincidentally, several months later my parents saw the family at church in another part of the state.
Vanderbilt has put out a similar video on pediatric cardiology that I will share next month.
Showing posts with label NICU. Show all posts
Showing posts with label NICU. Show all posts
Wednesday, January 25, 2012
Sunday, November 20, 2011
*there's day 1 of the appetite stimulant
First, part II of the month of check ups: last week we saw the pediatrician again. It was an uneventful trip - we just got clarification on the wheeze we hear sometimes when Will has a cold or virus. He has an inhaler with a spacer that he loves. Sometimes he pretends to give himself a treatment and he even demonstrated that to his doctor. She was given the job of pretending to press on the inhaler to make the medicine pretend to come out.
At the end of the week we checked in with the GI doctor. He gave us the prescription for the appetite substitute as predicted. He also mentioned Will's pediatrician. He has a new son and said he chose the same pediatrician after seeing what good care she gave Will!
Will has a really great pediatrician. Since he has a lot of appointments I probably know her better than any of my own doctors. She takes everything we say very seriously and if I have a complicated question she calls me to talk. Since we moved it takes almost an hour to get to her office which is really inconvenient, but right now I wouldn't dream of turning his care over to someone else. There will be a day that Will doesn't need as much attention as he does now and by then I might be ready to switch to a local doctor. Maybe. But I doubt we will find another one with a Choo-choo like this:
After we left GI we went to the NICU to see if one of Will's primary nurses was working. We have met up with her a couple of times before - a few times when he was in hospital rooms on other floors and once in the cafeteria. This time she had us meet her in the NICU. This was our first trip back inside those double doors. I found myself smiling as I walked down the long hallway with Will in his stroller, snacking on Goldfish crackers and drinking Pediasure from a cup. It was nice to know that we were coming back to a place with a lot of difficult memories in a MUCH better time in Will's life. She was thrilled to see him so happy and eating!
She also told us about this baby that recently left the hospital after being there for OVER A YEAR!! I often think that even in our worst times there is always someone that is coping with something more difficult. Well, this baby is the latest example of that. Will spent his first Thanksgiving, Christmas, and New Year in the hospital but at least he was home for his first birthday!
Now for the feeding news: the appetite stimulant is actually an antihistamine that has the side effect of increasing appetite. After only one day we can say we've definitely seen an increase in what he is eating. Breakfast and lunch were about the same, with a slight increase in bites. But his 10 am snack and dinner were definitely bigger. He ate a whole cereal bar by himself for snack. Normally he would only eat about a third of one. And for dinner he ate a half a peanut butter sandwich AND many spoonfuls of the diced tomatoes from my taco soup. He started out eating the meat, corn, and beans too but once he got a taste of the tomatoes he couldn't be stopped. Since I don't like tomatoes I think this could work out really well for both of us!
At the end of the week we checked in with the GI doctor. He gave us the prescription for the appetite substitute as predicted. He also mentioned Will's pediatrician. He has a new son and said he chose the same pediatrician after seeing what good care she gave Will!
Will has a really great pediatrician. Since he has a lot of appointments I probably know her better than any of my own doctors. She takes everything we say very seriously and if I have a complicated question she calls me to talk. Since we moved it takes almost an hour to get to her office which is really inconvenient, but right now I wouldn't dream of turning his care over to someone else. There will be a day that Will doesn't need as much attention as he does now and by then I might be ready to switch to a local doctor. Maybe. But I doubt we will find another one with a Choo-choo like this:
After we left GI we went to the NICU to see if one of Will's primary nurses was working. We have met up with her a couple of times before - a few times when he was in hospital rooms on other floors and once in the cafeteria. This time she had us meet her in the NICU. This was our first trip back inside those double doors. I found myself smiling as I walked down the long hallway with Will in his stroller, snacking on Goldfish crackers and drinking Pediasure from a cup. It was nice to know that we were coming back to a place with a lot of difficult memories in a MUCH better time in Will's life. She was thrilled to see him so happy and eating!
She also told us about this baby that recently left the hospital after being there for OVER A YEAR!! I often think that even in our worst times there is always someone that is coping with something more difficult. Well, this baby is the latest example of that. Will spent his first Thanksgiving, Christmas, and New Year in the hospital but at least he was home for his first birthday!
Now for the feeding news: the appetite stimulant is actually an antihistamine that has the side effect of increasing appetite. After only one day we can say we've definitely seen an increase in what he is eating. Breakfast and lunch were about the same, with a slight increase in bites. But his 10 am snack and dinner were definitely bigger. He ate a whole cereal bar by himself for snack. Normally he would only eat about a third of one. And for dinner he ate a half a peanut butter sandwich AND many spoonfuls of the diced tomatoes from my taco soup. He started out eating the meat, corn, and beans too but once he got a taste of the tomatoes he couldn't be stopped. Since I don't like tomatoes I think this could work out really well for both of us!
Sunday, November 13, 2011
*there's the month of check ups
The results of Will's 2 year developmental testing from the Vanderbilt NICU Follow Up Clinic
Chronological Age: 24 months 2 days
Corrected Age: 21 months 11 days
Weight: back to the less than 3rd percentile...
22.27 lb (<3rd%ile chronologic; 3%ile corrected)
Height: 31.9 in (4%ile chronologic; 11%ile corrected)
Head Circumference: 18.64 in (17%ile chronologic; 23%ile corrected)
Bayley Scales of Infant and Toddler Development
Cognitive age equivalent: 24 months
Receptive Communication age equivalent: 22 months
Expressive Communication age equivalent: 23 months
Fine Motor age equivalent: 27 months(!!)
Gross Motor age equivalent: 23 months
The narrative part of the assessment says that all of his results are within a normal range but since his ability to talk could improve with therapy a speech and language evaluation was recommended. Luckily I have had Will on the waiting list for that for a couple of months.
I had suspected that Will's fine motor skills were at least a little advanced but didn't really have a way to compare. Good or bad, it is nice to have something formal to confirm what we thought was true. In summary, he could gain some weight and speak more clearly but he is GREAT with his hands and is just as smart as a 2 year old should be!
A few days after this assessment we went to Will's 2 year well check with the pediatrician. Unfortunately I had to hear "I'm concerned about his weight" from a second doctor in less than a week's time. Starting a few weeks ago, with the help of Will's feeding therapist, his dietitian has agreed to be a little more aggressive in weaning him from his feeding tube. That has helped him eat more at meals but there was a major decrease in daily calories from the formula that he drinks. The fact that he maintained his weight after the decrease was a good sign, but when there's no gain and even a small decrease the alarms go off in the heads of the professionals.
Since this feeding stress can be trying, I'll point out the bright side for us all to remember...
he has never needed a different, more difficult kind of feeding tube
he tolerates feeds (that means he doesn't vomit several times a day...anymore)
he doesn't require any daily medications (right now)
we have the gift of good health insurance
he is willing to try the food we offer him
and
he will eventually eat!!
Chronological Age: 24 months 2 days
Corrected Age: 21 months 11 days
Weight: back to the less than 3rd percentile...
22.27 lb (<3rd%ile chronologic; 3%ile corrected)
Height: 31.9 in (4%ile chronologic; 11%ile corrected)
Head Circumference: 18.64 in (17%ile chronologic; 23%ile corrected)
Bayley Scales of Infant and Toddler Development
Cognitive age equivalent: 24 months
Receptive Communication age equivalent: 22 months
Expressive Communication age equivalent: 23 months
Fine Motor age equivalent: 27 months(!!)
Gross Motor age equivalent: 23 months
The narrative part of the assessment says that all of his results are within a normal range but since his ability to talk could improve with therapy a speech and language evaluation was recommended. Luckily I have had Will on the waiting list for that for a couple of months.
I had suspected that Will's fine motor skills were at least a little advanced but didn't really have a way to compare. Good or bad, it is nice to have something formal to confirm what we thought was true. In summary, he could gain some weight and speak more clearly but he is GREAT with his hands and is just as smart as a 2 year old should be!
A few days after this assessment we went to Will's 2 year well check with the pediatrician. Unfortunately I had to hear "I'm concerned about his weight" from a second doctor in less than a week's time. Starting a few weeks ago, with the help of Will's feeding therapist, his dietitian has agreed to be a little more aggressive in weaning him from his feeding tube. That has helped him eat more at meals but there was a major decrease in daily calories from the formula that he drinks. The fact that he maintained his weight after the decrease was a good sign, but when there's no gain and even a small decrease the alarms go off in the heads of the professionals.
Since this feeding stress can be trying, I'll point out the bright side for us all to remember...
he has never needed a different, more difficult kind of feeding tube
he tolerates feeds (that means he doesn't vomit several times a day...anymore)
he doesn't require any daily medications (right now)
we have the gift of good health insurance
he is willing to try the food we offer him
and
he will eventually eat!!
 |
| A partial month's supply of his current formula, Pediasure 1.0. |
His upcoming appointments:
Next up is Dr. Arboleda in the GI clinic...
Friday, February 11, 2011
*there's 3 strangers who saved my son's life
This one was fun to put together.
Click on their names to read more about them.
1. Mildred Stahlman -Will was born at VUMC which houses a small 16 bed NICU named after this doctor. She developed the first neonatal ventilator without which Will would not have survived. Will has spent about 35 days total on a pediatric ventilator.**
2. Martha Lott - the premature infant that was the first to use that ventilator. She grew up and became one of Will's NICU nurses. About 48 years and 1 month after she was born she was assigned to Will for about 3 days. She doesn't wear a button that says "I'm the first ventilator preemie" or anything like that...another nurse told me the story so I looked her up and found these articles. If you click this link you'll find another article about Martha. My favorite part is when Dr. Stahlman says "If she hadn't survived, I would have probably never put another baby on the machine."
Click on their names to read more about them.
1. Mildred Stahlman -Will was born at VUMC which houses a small 16 bed NICU named after this doctor. She developed the first neonatal ventilator without which Will would not have survived. Will has spent about 35 days total on a pediatric ventilator.**
(image courtesy of Vanderbilt Reporter)
Thanks Martha.
(image courtesy of Vanderbilt Alumni Point of View)
3. David Bichell - Will's heart surgeon. I can't ever come up with much to say about him. Maybe there just aren't words.
(image courtesy of Vanderbilt University Medical Center website)
**If you have heard me complain about how much I dislike that NICU ventilator, my feelings haven't changed. I was unsettled during every minute of that necessary evil. I can still recall the beeping sound it makes in my head out of nowhere.Congenital Heart Defect Awareness Week 2011
Sunday, February 21, 2010
*there's a home sweet home
It has been very chaotic lately. I just have a spare minute to tell you that Will came home today! He has an apnea monitor and an NG feeding tube through his nose. The full story will come as soon as possible!
Wednesday, February 10, 2010
*there's 101 days
Today Will is 101 days old!
This is a really quick follow up on Will's feeding, but I'm pretty excited. I think I have mastered the art of feeding Will while preventing any of those spells. I've been told that eating for Will is like running for us- it takes a lot out of him. Since it's important to keep his body oxygenated it helps if I pace him in a very specific way while sucking from a bottle. I've fed him, watched others feed him, and today all of these things clicked. What is interesting about this is that I don't think anyone knew that the feeding technique could change everything so much. Actually the speech language pathologist (SLP) knew, but I don't think she knew it would actually work so well! No doctor or nurse has ever said to us that feeding-related spells were preventable. And by technique, I mean details that include the way the bottle is held, the position of his body, the number of sucks he is allowed at a time, watching his nostrils, the way he breathes, and about ten other small things that make a big difference.
Now I'm going to try to take over feeding Will all of the time. Hopefully the consistency will help him start eating like a pro really soon! I am so grateful for the skills of the SLP that helped me with this today. Overnight he had a lot of drops in heart rate (one of the types of spells he can have) so we were getting concerned. I hope this doesn't jinx our good day of eating and I could come back soon to say something else has changed, but I'm trying to be confident that this is it and we will be taking him home soon.
Yesterday the baby in the room next door got to go home. That baby was born at the beginning of October. I was happy and sad to see them go. Happy because we got the recliner out of their room. Sad because that family has been a motivator for us. Knowing that they have been here longer than us and have had the inconvenience of being away from their home all this time has reminded us that if they can do it, we can do it too. At least Chris & I have been able to go home to our own bed and continue to go to work. The last thing I heard the father say in the hallway was "We'll be back!". This hospital is a strange place. I will be so happy and sad for Will to be discharged. And like that family, we will also be back.
This comes in handy...Will holds his pacifier for himself:
Below is the debut of Will's new mobile! It is attached to his hospital mobile so he can see it well. This is a one-of-a-kind handmade gift from one of Will's young fans who is also a thoughtful friend.
And the most important detail...teeny tiny beads that look like dogs!!
Thanks for thinking of little Will!
Will's pouty face.
This is Chris' favorite of Will's expressions.
More to come soon!
*there's an eater!
Tuesday Will got to try eating from a bottle again. It went really well! He will have to relearn some of it...the sucking, swallowing, and pacing takes practice. He is really eager to eat but doesn't realize he needs to take a breath now & then. The nuances of teaching a preemie to eat from a bottle continue to amaze me. So far the only problem is that he now doesn't care for the combo he needs to eat most - milk with high calorie formula. He only wants breast milk by itself. This isn't a common NICU problem but they are finding a way to work around that while he is getting comfortable eating by mouth again. We will be on the lookout for signs that he's unable to manage the reflux with omeprazole/prilosec alone. Plans change frequently here based on what Will needs but for now the reflux surgery and tube in his tummy are NOT in the plan!
The other good news of the day is that Will now weighs 7 lbs!! He's not a quick weight gainer by NICU standards but he gets there in his own time. Since Will doesn't seem to be having any trouble with his heart, his OHS has been postponed until he weighs 5 kilos, or 11 lbs. Initially 3 kilos was the goal. But the bigger he is the better so we will wait for 11 lbs or signs that he needs the surgery sooner.
The first few feeding sessions were bumpy, but overall it was a great day for Will! More pictures soon...
The other good news of the day is that Will now weighs 7 lbs!! He's not a quick weight gainer by NICU standards but he gets there in his own time. Since Will doesn't seem to be having any trouble with his heart, his OHS has been postponed until he weighs 5 kilos, or 11 lbs. Initially 3 kilos was the goal. But the bigger he is the better so we will wait for 11 lbs or signs that he needs the surgery sooner.
The first few feeding sessions were bumpy, but overall it was a great day for Will! More pictures soon...
Friday, February 5, 2010
*there's a ~wiggler~
This is my attempt at getting a picture of Will doing something cute. Smiling...winking...waving...sticking out his tongue...I was just hoping to capture one of his cute moments. He's become a little too wiggly for that.
It started out promising.
He was at least being still.
He was at least being still.
There is something resembling a wave in one of these.
And a bit of a smile in another.
There is {almost} a wink in one.
I almost caught the tongue once too.
You will just have to piece these together in your mind's eye to create one really cute moment.
I think we will have to stick with pictures of him sleeping.
He LOVES his new mirror. The nurses tease him and call him vain. 
Wednesday, February 3, 2010
*there's a little more waiting
Today was supposed to be a report of how wonderfully Will did with his return to bottle feeding. For several reasons, we'll now be waiting until early next week to give that a try. The main concern was another increase in spells. Will had his first vaccinations on Sunday and sometimes NICU babies react to them with spells. Just in case, he got blood work done to test for infection. Any time something unusual happens they check him for things like urinary tract infections but he hasn't had any yet. Poor Will is like me in that it's difficult to find a vein for an I.V. So he's getting his antibiotics through shots in his legs. He's handling them really well I think. He does cry but quickly calms down as if it never happened. We suspect his legs are sore from the shots because he hasn't wanted to be held much today. But don't worry, Will slept VERY soundly all day today. And he hasn't had any spells.
Although we're disappointed to have to wait longer, this isn't being handled lightly. Everyone is eagerly anticipating the day he's able to eat by mouth again! The upside of waiting is that the omeprazole he's taking to help his esophagus heal will have a full 10 days to work. We're hoping this will set him up to succeed with the bottle. And did I mention there haven't been any spells today?!?
Chris & I have been a little puzzled about Will's weight lately. With all of these days free of the responsibility of eating from a bottle, I expected him to gain a little faster. His weight gain has progressed, but very slowly. It was explained to us that babies never gain really well when fed by tube. Also, Will's tube is bypassing his stomach for the time being. Since the milk/formula combo he gets is going directly to his intestines it doesn't get a chance to be broken down in the same way in his stomach. Not having it sit in his stomach is supposed to prevent further irritation from reflux. Also, his nurse thinks that he is fighting with the inflammation in his esophagus which uses calories. His weight as of yesterday was 6 lbs, 7 oz. Not too bad, but we are anxious to get him home. Supposedly babies gain faster once they are out of the hospital.
One last thing: today is Chris' birthday! Happy 31st Chris! Like a seasoned father Chris couldn't think of anything special he wanted this year. I hope he enjoys his birthday shirt! The first of many I'm afraid.
Although we're disappointed to have to wait longer, this isn't being handled lightly. Everyone is eagerly anticipating the day he's able to eat by mouth again! The upside of waiting is that the omeprazole he's taking to help his esophagus heal will have a full 10 days to work. We're hoping this will set him up to succeed with the bottle. And did I mention there haven't been any spells today?!?
Chris & I have been a little puzzled about Will's weight lately. With all of these days free of the responsibility of eating from a bottle, I expected him to gain a little faster. His weight gain has progressed, but very slowly. It was explained to us that babies never gain really well when fed by tube. Also, Will's tube is bypassing his stomach for the time being. Since the milk/formula combo he gets is going directly to his intestines it doesn't get a chance to be broken down in the same way in his stomach. Not having it sit in his stomach is supposed to prevent further irritation from reflux. Also, his nurse thinks that he is fighting with the inflammation in his esophagus which uses calories. His weight as of yesterday was 6 lbs, 7 oz. Not too bad, but we are anxious to get him home. Supposedly babies gain faster once they are out of the hospital.
One last thing: today is Chris' birthday! Happy 31st Chris! Like a seasoned father Chris couldn't think of anything special he wanted this year. I hope he enjoys his birthday shirt! The first of many I'm afraid.
Sunday, January 31, 2010
*there's snow!
About 6 inches!
Chris looking out of Will's window at the hospital family garden as it started to snow Friday:
We were trying to take pictures from our moving car. We finally got stopped at a red light next to the Union Station hotel.
Katie in our back yard Saturday:
After a lot of discussion about who might get snowed in where and for how long, Chris and I decided to stay home together with Katie Friday night. Today we were able to drive to the hospital to visit Will.
Because of the staff schedule, every two weeks Will has a different attending doctor and every month a different fellow. The fellow is a doctor that is already a pediatrician but is completing a fellowship to become a neonatologist. The rest of the team includes a handful of medical students. [Correction: I learned after posting this that the rest of the team is all doctors who are completing residencies in the pediatric speciality. Since Vanderbilt is a teaching hospital I have assumed that everyone around me was a student! That, and the fact that most of them are standing around looking bored during rounds.] Our fellow for January is the same doctor in the room when Will was born (so I'm told) and was on his team the whole month of November. She was the doctor that talked us through all of his health concerns in the beginning and the one that broke the news to us that Will had TOF. We really like her. Since tomorrow begins a new month the whole team will be new to us so I'm staying the night to ensure that I can be there for rounds to meet the new team.
Chris rocking Will under the (ceiling tile) stars:
Friday, January 29, 2010
*there's some eating troubles
It has been an exhausting week for everyone. I spent the first 2 days after Will's move to the new room at the hospital. I was hoping to help feed him around the clock. He was suddenly not eating as well as he had been and we weren't sure why. For the first few days he was cared for by nursing staff who have very different approaches. I was hoping to serve as quality control.
In addition to the eating troubles, Will also began having more severe spells again.We spent the week talking to his doctors, who were stumped yet again. [last time: breathing, this time: eating] I am summarizing quite a bit. It was an eventful week and it would be hard to relive it all here. After some tests and a lot of guessing, Will is now being treated for reflux with an acid reducer. I no longer need to help feed him because he is also receiving all of his feedings through the tube to give his esophagus time to heal. This is the first and hopefully only treatment he will need. If the medicine doesn't work the next step is surgery and a feeding tube in his abdomen. Everyone please pray that this works and Will will begin to eat normally again. We thought we were going to bring Will home really soon. The surgery and tube would help him come home sooner because it would ensure that he gets proper nutrition at home. We decided we would rather wait a little longer and avoid surgery if possible. That was a really difficult decision!
Luckily, over the course of the week one of Will's primary nurses was on the schedule again. We are so thankful for her!! She has known Will for several weeks now and has been a Vanderbilt NICU nurse for 32 years. The current attending doctor called her wonderful and at least one other nurse has told us that she knows everything. I am flattered that she wanted to sign up to be one of Will's primary nurses. She has been instrumental in helping us avoid the surgery and feeding tube so far. This post could definitely be a report of those things happening if it weren't for us protesting as well as this nurse's knowledge. If those procedures become more of a possibility I will describe them here, but we are really, really, REALLY hoping for success with medication alone.
This week we met a different cardiologist with the group at Children's Hospital. She will be the one that we see most often for outpatient appointments. She has been following Will at the hospital and is pleased with how he is doing. Will gets periodic echos and although there is an obstruction that has gotten smaller, it doesn't need urgent attention. For now, we expect his OHS to be in May.
Things that are going well for Will:
1) he passed his final hospital eye exam! And
2) the physical therapist says his muscle tone, strength, and range of motion are very good!
Will has been developing a new hobby: pulling out his feeding tube. One day this became such a problem we gloved him with his little socks. Twice I found that he had worked the sock off the very hand that he uses to pull the tube.
In addition to the eating troubles, Will also began having more severe spells again.We spent the week talking to his doctors, who were stumped yet again. [last time: breathing, this time: eating] I am summarizing quite a bit. It was an eventful week and it would be hard to relive it all here. After some tests and a lot of guessing, Will is now being treated for reflux with an acid reducer. I no longer need to help feed him because he is also receiving all of his feedings through the tube to give his esophagus time to heal. This is the first and hopefully only treatment he will need. If the medicine doesn't work the next step is surgery and a feeding tube in his abdomen. Everyone please pray that this works and Will will begin to eat normally again. We thought we were going to bring Will home really soon. The surgery and tube would help him come home sooner because it would ensure that he gets proper nutrition at home. We decided we would rather wait a little longer and avoid surgery if possible. That was a really difficult decision!
Luckily, over the course of the week one of Will's primary nurses was on the schedule again. We are so thankful for her!! She has known Will for several weeks now and has been a Vanderbilt NICU nurse for 32 years. The current attending doctor called her wonderful and at least one other nurse has told us that she knows everything. I am flattered that she wanted to sign up to be one of Will's primary nurses. She has been instrumental in helping us avoid the surgery and feeding tube so far. This post could definitely be a report of those things happening if it weren't for us protesting as well as this nurse's knowledge. If those procedures become more of a possibility I will describe them here, but we are really, really, REALLY hoping for success with medication alone.
This week we met a different cardiologist with the group at Children's Hospital. She will be the one that we see most often for outpatient appointments. She has been following Will at the hospital and is pleased with how he is doing. Will gets periodic echos and although there is an obstruction that has gotten smaller, it doesn't need urgent attention. For now, we expect his OHS to be in May.
Things that are going well for Will:
1) he passed his final hospital eye exam! And
2) the physical therapist says his muscle tone, strength, and range of motion are very good!
Will has been developing a new hobby: pulling out his feeding tube. One day this became such a problem we gloved him with his little socks. Twice I found that he had worked the sock off the very hand that he uses to pull the tube.
Sunday, January 24, 2010
*there's a new room!
Daddy successfully getting him to eat a whole bottle. Right now, a whole bottle for Will is the equivalent of "3 tablespoons and a smidge" according to our nurse.
I've read that the raised hands and splayed fingers are signals of stress for a baby. But he does them so often (And to the side. A little like the Hula.) I have come to believe that it is his special quirk.
Enough pictures!
Today Will moved to the intermediate unit!!! It's his last stop on the way out of the NICU! The babies in this unit need less attention and share a nurse with two other babies rather than one. I think one of our primary nurses asked for us to move there sooner than later because she could tell we are reaching the limits of our patience with his stay. As we followed his crib down the hallway we passed one of the nurses who worked with Will his first week in the hospital. She smiled and asked where we were going but knew the answer already by seeing our arms full of Will's things and smiles on our faces. I remembered later that she is the only NICU nurse that has seen me cry. A nice full-circle moment.
We predict he will still be there for another week. Maybe two. But this room is a bit of a reward for our wait. It is designed for parents to room-in with a bed and private bath. There is a fridge and T.V. with DVD player. Major conveniences in this inconvenient situation. I have spent a lot of time riding the elevator getting myself something to drink. Not anymore! We can also eat in the room now and have more visitors. We don't even have to wear a gown when we hold him. We might, however, have you put one on if you come to visit. Especially if you have been around children that day and haven't changed your clothes. It's RSV season and Will hasn't yet been vaccinated. Thanks for understanding!
The new giant room!
Sometimes we share an elevator with one of these, a children's hospital version of wheelchairs.
Thursday, January 21, 2010
*there's an 81 day old baby
And this 81 day old baby is expected to stop having spells and eat from a bottle. This week has had several ups and downs with both of those. For one whole day he refused to eat from a bottle. No one ever figured out why. But now he's back to taking at least half of what he gets per day by bottle. Unfortunately the frequency of spells has increased again. Not so much that he needs oxygen, but too many for a baby that is ready to go to the intermediate/step down unit. The other event of the week was that Will's weight gain would go up a few ounces and stagnate for a couple of days, go up a few more ounces and stay there a few more days. Finally he is up to 5 lbs, 14 oz! This is still an improvement from the days where he would gain an ounce and then lose two.
Chris and I are trying to focus on helping him bottle feed this week. He seems to eat more for us and we also are learning how to spot a spell coming. It's not difficult now that we are getting used to them. He turns a "dusky" color and goes limp. I don't care for the word dusky but it is truly the best way to describe his face at that time. So we stimulate him by changing the position in which he is sitting or lying and patting him on the back.
Other than that, Will does act like an older baby now. He has a lot more awake time. He lies quietly entertaining himself. He cries when he's hungry. He doesn't, however, burp. He used to be a great burper but today I couldn't get him to burp a single time. Nurses were unsuccessful either. They can even take the contents of his stomach out through his tube to see if there is air in his tummy and that only worked once. Sometimes he is such a mystery.
My goal this weekend is to take more videos and get more pictures of him doing cute things with his eyes open.
Chris and I are trying to focus on helping him bottle feed this week. He seems to eat more for us and we also are learning how to spot a spell coming. It's not difficult now that we are getting used to them. He turns a "dusky" color and goes limp. I don't care for the word dusky but it is truly the best way to describe his face at that time. So we stimulate him by changing the position in which he is sitting or lying and patting him on the back.
Other than that, Will does act like an older baby now. He has a lot more awake time. He lies quietly entertaining himself. He cries when he's hungry. He doesn't, however, burp. He used to be a great burper but today I couldn't get him to burp a single time. Nurses were unsuccessful either. They can even take the contents of his stomach out through his tube to see if there is air in his tummy and that only worked once. Sometimes he is such a mystery.
My goal this weekend is to take more videos and get more pictures of him doing cute things with his eyes open.
He loves to hold hands.
Almost caught a picture of a smile.
Monday, January 18, 2010
*there's a due date
January 18th! Today was (or is) Will's estimated due date. To say the least, the past 11 weeks have been vastly different than we expected in several ways. Here's few of them:
*I didn't know I would start collecting parking garage cards. I usually get to the hospital during business hours so I have to take a card to get in, but when I leave there is no attendant so the cards stay in my car, my pockets, my purse, etc... They are everywhere!
*I didn't know that I would spend so much time looking at pictures of the human heart. And actually learning how it works. :)
*I didn't know that I would be using the services of the very hospital for which I've participated in fund raising.
*I didn't know that conversations between Chris & I would include the words "I want him to come home" so many times. Or that we would laugh so many times over stories about the staff and other families we are around every day. There's the doctors whose personalities are just asking for Chris to do impressions. There's the lovely woman at the front desk who doesn't want to be at work. And there's the father who knows everyone and everything about the whole hospital. Not just our floor, the whole hospital. Chris calls him the Mayor.
As for Will, things aren't quite as expected for him either. I've been thinking that we will either be unaffected by his future scrapes and bruises and broken bones because they are so minimal in comparison to what we've seen him handle. Or we'll be more upset because Hasn't He Been Through Enough Already?
This weekend I was there when Will was getting another bath. This nurse uses a swaddling method of bathing. One body part is taken out to be washed at a time, while we continuously rewarmed the blankets by pouring on more water. A LOT of blankets got wet, but Will seemed to love it.
Here is a picture of him with no feeding tube, but this was a brief break before getting a new one. He has a mustache left by the gummy part of the tape:
*I didn't know I would start collecting parking garage cards. I usually get to the hospital during business hours so I have to take a card to get in, but when I leave there is no attendant so the cards stay in my car, my pockets, my purse, etc... They are everywhere!
*I didn't know that I would spend so much time looking at pictures of the human heart. And actually learning how it works. :)
*I didn't know that I would be using the services of the very hospital for which I've participated in fund raising.
*I didn't know that conversations between Chris & I would include the words "I want him to come home" so many times. Or that we would laugh so many times over stories about the staff and other families we are around every day. There's the doctors whose personalities are just asking for Chris to do impressions. There's the lovely woman at the front desk who doesn't want to be at work. And there's the father who knows everyone and everything about the whole hospital. Not just our floor, the whole hospital. Chris calls him the Mayor.
As for Will, things aren't quite as expected for him either. I've been thinking that we will either be unaffected by his future scrapes and bruises and broken bones because they are so minimal in comparison to what we've seen him handle. Or we'll be more upset because Hasn't He Been Through Enough Already?
This weekend I was there when Will was getting another bath. This nurse uses a swaddling method of bathing. One body part is taken out to be washed at a time, while we continuously rewarmed the blankets by pouring on more water. A LOT of blankets got wet, but Will seemed to love it.
Here is a picture of him with no feeding tube, but this was a brief break before getting a new one. He has a mustache left by the gummy part of the tape:
I'm sleepy.
After mustache removal.
~Jody
Friday, January 15, 2010
*there's no more nasal cannula
No more oxygen!
Will took 2 of his feedings today entirely by bottle. As that number increases the next thing to go will be his feeding tube.
Hopefully you will soon see a picture with nothing on his face but those cute little cheeks!
Wednesday, January 13, 2010
*there's growth
Here are some diaper size comparisons for you.
from left to right:
a size 1, a newborn (Will's current size), a blackberry, and Will's 1st
You can see how a sleeper is handy for him right now since there are spaces between snaps that allow room for wires.
Will is having a great week! His ability to eat from a bottle gets a little better every day. His weight gain isn't quite a fast as the doctors would like, but he will still be fed through the tube as long as he needs the help. I got a lesson from a physical therapist today. They visit him once a week as does the occupational therapist. Now we can continue the massages and exercises every day which will be fun I think. We only did the lower body things today since he was sleeping. I guess it wasn't too strenuous since he didn't even wake up! And lastly, Will had a great eye exam today. No evidence of retinopathy. If he is still in the hospital in 2 weeks they will come to recheck his retinas. If not, he will eventually have an outpatient appointment for that as well as hearing and general preemie follow up.
For now we only have guesses about when Will is coming home. One week...two weeks maybe? As of today Will has been in the NICU for 73 days!
Featured pic of the day:
The most organized place in our house! One of Will's armories. Chris has not enjoyed the armories over the years. He has had to lift them each time they have been moved and they are awkward to carry. I think he feels all the moving was worth it now that he sees how perfect they are for Will's things. (Don't remind him that one of the legs once knocked a hole in a wall as we were moving it up a staircase.) Thanks to Uncle Tim & Aunt Charlotte for passing them down to us!
~Jody
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