*there's a hospital trip

Quick update on Will: Sunday morning Chris suspected Will had a Tet spell. The things we are to look for are: a morning time crying session, usually related to going to the bathroom, his color changing to blue, and it lasting longer than his more common shorter spells. Chris wasn't exactly sure his color was blue, but it wasn't his usual color either. Even though we see that sometimes it doesn't usually last more than a minute or two. We called the cardiology office and they asked that we bring him in to the hospital to be observed overnight. So here we are, back in the hospital!

Despite not wanting to be at the hospital in theory, we are both glad that we came. It is a relief to have so many people watching to make sure he's okay. I think the cardiologists will talk to the surgeons and discuss whether or not to send him home, go ahead and do the heart repair, or do a partial repair with the full repair happening a little later.

Otherwise, Will has gotten so big! He is 9 lbs now. He really did gain weight well for the week that he was home.

We will obviously keep you updated as we know more.

*there's a busy week

Just a few of the things going on this week:

Feeding Will: this is an adventure in persistence, experience, patience, and other things we don't know much about. Feeding Will is so difficult sometimes. We have figured out that no matter how skilled we get in giving him a bottle, he isn't going to be able to eat by mouth entirely for awhile. He has the sucking/swallowing/breathing down, but the difficulty comes from the amount he has to eat every day. The doctors have him on a schedule that just doesn't give him a chance to get hungry. So we use the feeding pump that was sent home with us and the NG tube. If we could feed him less often he might take the whole bottle when it comes time to feed him, but that would mean we would have to feed him more during each feeding session to ensure he gets the total volume required for the day. Why is mixing his formula and breast milk so difficult? Those measurements are really simple, but for some reason make my head spin. It could be because we get to mix batches with ounces and teaspoons but then they switch to the metric system for the amount we actually give him. Still very doable but the numbers are too much for my tired brain.

Katie and Will: This dog of ours cried nonstop for the first day Will was home. By the middle of the second day, she looked downright haggard. When standing still she had to take a wide stance to balance the swaying from exhaustion. And the whites of her eyes were bloodshot. Normally she sleeps about 22 hours per day and with all the crying, running from room to room, trying to climb the pole of the feeding pump every time it made a noise, and seeing all the bags coming in the house (bags to her mean someone is going somewhere and she is always afraid she is getting left behind) she only got about 2 hours of sleep that first day. We were afraid Katie was going to need a new home for the sake of her sanity. But by now she has relaxed considerably and only barks at the apnea monitor when it alarms (in addition to her usual which is barking at every person, noise, or delivery truck outside the house).

Home Health Nurse! We didn't know that the doctors had ordered this as part of Will's discharge. Two visits a week for four weeks. So far she just seems to check his temperature and weight and answer questions about his spells and feeding pump but I'm so glad she does. It's nice too because I get to sneak in an occasional question about normal baby behavior that I don't know already since this is our first child. So far she hasn't just told me to go get a book about babies. Which I very much need to do!

Pediatrician - Will has an appointment with her every week for awhile, except on the weeks he sees the cardiologist. I am really impressed with this doctor so far. I met with her after Will was born. Since then she has been keeping up with him via electronic medical records and phone calls with the NICU medical team.  After examining him for the first time she literally sighed with relief and said "I feel so much better now that I've seen him and I think he looks great." I hear her practice pays close attention to their cardiac babies so I'm really glad we chose her.

There is obviously much more to talk about so I will try to do so soon...

*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!

*there's a change in plans

This was going to be an announcement that Will's heart surgery has been moved to 1 month from now. We were told that at the end of last week. We were happy with this plan, but have since learned that is a very tentative estimate. So now we think it will be sometime between now and May. Which was the plan all along. Things change so frequently for Will it difficult to even share the details. Over the course of today alone, I have talked to 4 different people about him. Even if plans get clarified tomorrow, it could change quickly so that's why I don't bother to tell you. It doesn't mean that he isn't getting good care, it's just that everyone is trying to come up with ideas of how to get him home quickly. Unfortunately for us the only idea that really works is to wait until he's ready.

The scheduling of the heart surgery depends on: him being as big as possible (and close to 4-6 months old), possibly needing surgery sooner because of trouble with his heart (which he hasn't had at all), and time of year (winter isn't the best time due to it being cold and flu season. Will is already more susceptible to getting sick and needs to be strong to recover from surgery). I thought I would be able to share bits of information about his OHS as it gets closer, but it seems like we will know the most about his surgery right when it happens. And by the time I process all the info myself it will be time to say "Will came through his surgery great!".

I can say that his ability to eat is improving. And our willingness to stuff him in our coats to sneak out of the hospital has grown as well. We are tired of being here and ready to take him home. I have been thinking we were about 2 weeks away from taking him home for the past 7 weeks or so. We aren't worried about him being okay because we know he will be fine. He's doing well considering all the setbacks he has experienced. But this can only go on so long before it starts to wear you out. Thanks to everyone for supporting us and lowering your expectations about us as friends, family, and coworkers. I'm not good at returning phone calls or emails and when I do I may not make sense. And the box of unused thank you notes is starting to scold me every time I walk by. Please know we are very grateful for every meal, phone call, gift, hand me down, snack bag, thought, and prayer!

 

Still sleeping with hands in the air.

  

 

  

 A bath in the new room.

  

 The sinks are designed to double as an infant bathtub.

   

 Don't forget my back Daddy.

   

 His feeding tube was temporarily removed for the bath.

  

The days of photos without blurring may be gone for quite awhile. Will is just too big and mobile to lie there and take it when we're snapping the camera in his face.

   

  

 

*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...

*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.

 

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.

*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.

*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:

 

*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.