Day 31-33

Little changes but big steps are coming for Hugo! He has been nursing longer and drinking most (if not all) of the bottle and is therefore doing well on Phase 2 of the cue based feeding. He has been gaining weight and is now 5 lbs 11oz. His eye exam had good results. His development is in Stage 2 which is exactly where they want it to be and he shows no sign of the Retinopathy disease. Hugo also got off the caffeine this week. Although Hugo hasn't had breathing assistance he was on the standard caffeine routine which is used as a respiratory stimulant. Hugo is very pleased. We are very pleased as well.

Today the nurse popped the top of Hugo's isolette without turning on the warmer! If he can hold his temperature for 24 hours with the top popped he can graduate to a crib! Although he is not ready to come home yet these are all really good steps. Anticipated come home date is still Oct. 16th unless we are told otherwise. Hugo has a list of requirements to be able to come home. He has to go one week without spelling (now that he's off caffeine), hold his temperature, gain weight consistently, and take all of his feedings by bottle or breast. He's getting closer and closer!

We're eager for him to come home but not quite ready! We weren't ready for him when he came and he hasn't given us much time to prepare. The cats are a little impatient as well. They can't wait to try out all their new baby merchandise.

4 Weeks (Day 26-30)

We are celebrating 4 weeks of life with Hugo! On our part, we made cookies for the nurses. For Hugo's part, he slept and ate. He was just approved to move on to Phase 2 of the cue based feeding process. Now he can have bottle or breast 2 times each twelve hour shift.

His first bottle attempt on September 4 was successful. He drank the whole thing. Some have asked, and I don't think I've ever clarified, that Hugo gets my breast milk. I pump and they feed it to him through the bolus. They do need to fortify it a little to supply some of the things his premature body needs. He gets it with the bottle too. Whatever it is seems to work since he is gaining weight! As of today he's 5lbs 4oz.

Unfortunately, my production is ahead of his appetite. In addition to what we already have at home, I used up my allotted space in the hospital and they sent us home with a big bag of frozen breast milk. I've been told to keep it because he'll catch up to me but I have my doubts.

Hugo's first Hawkeye game was last Saturday and he was all geared up and ready to cheer for the Hawkeyes! They started a new tradition in Kinnick Stadium this year. At the end of the first quarter everyone turns to wave at the children's hospital. Children and parents gather on floor twelve or look from their rooms to see everyone sending the love. It's a sweet tradition that I hope will last for a long time. The heartwarming scene even made it to the Today Show!

Days 22-25

Hugo continues to do well. He has steadily gained weight, increased feedings, and hasn't had any spells. He is now up to 4lbs 14oz! I've recently been putting together then and now photos. On the right he is in the same outfit that Grandma Bush bought him. The bottom photo is August 16th. Top photo is August 29th.

On this one the bottom photo is August 10th and the top photo is August 26th. He's so much more alert when he's awake than he was at the start.

This last one is his birthday, August 7th, on the bottom and on the top is August 27th. I'm so proud of how far he's come! Next week he'll receive his standard Retinopathy of Prematurity (ROP) Exam. It seems that eye develops rapidly in the last 12 weeks of pregnancy. The retinal blood vessel growth is mostly complete when a baby is born full term. The retina itself finishes a few weeks to a month after birth. Being born prematurely leaves this development at significant risk. There are no indicators that Hugo will have any considerable problems but it's still another test for me to stress and fret about until it's complete.

The nursing attempts are going pretty well. Hugo get really zonked out from all the work. He'll get a good latch but doesn't exactly know what to do. He'll suck a few times then take a lot of deep breaths. Then he'll kind of suck. Pause. Suck a little more. Breathe heavily. After about 10-15 minutes and maybe 5 minutes of active sucking he's pooped. I'll put him to my chest and the nurses will give him the rest of his feeding through the bolus.

Third Week of Life! (Days 18-21)

On Thursday Hugo's picc line was removed. It's a lot less frightening to pick him up now that it's out. All of his other leads either stick on or wrap around. Now he's getting all of his nutrition from the feeding tube. He tends to have a higher residual but, again, nothing is clinically wrong. Just likes to take his time digesting.

Although he likes to be bundled up tight, sleeping spread out doesn't seem to bother him as much as it used to. Just a week ago, having his arms and legs unbridled used to make him kind of fussy and uncomfortable. Now we find him peacefully resting like this all the time.

Hugo was approved for cue-based feeding this weekend. This means that he was showing signs he was ready to start trying to spend time at the breast or bottle. Phase 1 of this 4 phase process is taking breast or bottle once every 12 hour shift. Our first attempts were good for his age but only resulted in about 2-3 minutes of feeding. It will need to be 10-15 minutes for it to count as a full feeding.

It's a different mindset to have Hugo in the hospital. People go to the hospital when they are sick or injured. They go to the hospital to heal. Once they've healed they're released. That's not the case with Hugo. When people ask how Hugo is doing the answer has always been positive. He's doing great! They took out his IV, cleared him for some cue-based feeding, he hasn't had any spells, etc. When will he come home? Everyone seems a little taken aback by his homecoming estimate: October 16th. October 16th was his due date. That is the time he would have entered the world as a full term newborn. That is the estimated time he'll be able to thrive on his own. He's doing great but it's not about healing. It's about development. Development takes time. It can't be rushed. He's doing great but he has a long way to go.

Rounding out Week 3 (Days 13-17)

More good days and good nights for Hugo. He has been very consistent with his breathing and his temperature. He received another brain ultrasound which showed that the brain bleed resolved itself. He won't have another brain ultrasound until the standard one at 36 weeks. We love being able to hold him and discover some of his personality.

The nurses have all commented that when he is awake he is so alert. He loves to look around and inspect everything. Sometimes when we have him chest to chest he'll push away so he can look at our faces. He seems rather strong for such a tiny baby! I often forget how tiny he is. Nolan and I have not spent a lot of time around babies and he's the only frame of reference we have. Recently, I've been looking around at other babies though and I realize then how small he is. He's a little over 4 lbs now but he has a long way to go.

When he is in his isolette he spends a lot of time on his stomach or his right side to help him digest. They keep increasing the amount of food he gets through his tube and decreasing the nutrition he gets from his picc line in the hopes of being able to remove the IV. But he hasn't tolerated increased feedings all that well. He's clinically fine; he just likes to take time digesting! Hopefully they'll be able to take the picc line out today. We're happy to see that he enjoys taking his pacifier around feeding times. He's not strong enough to keep it in his mouth for very long but he sure does like it if someone holds it there for him!

Hugo has many friends and well-wishers who have provided him with beautiful hats and blankets to keep him warm during kangaroo care. Some come with touching, heartfelt stories and letters, and all are made with such incredible love. We have also received a number of wonderful children's books that we read to him. Sometimes it's hard to tell but I feel more and more confident each day that he knows our voices. He's almost completed his 3rd week of life and I can't believe he's been here that long.

Day 10-12

Life has been an endless cascade of activity since Hugo came into this world. Grandma Bush kept me busy while Nolan was working with the Hawkeye Marching Band. This week was band camp which is an intensive week (9am-9pm) before school starts. Nolan was able to make it to the hospital during lunch time in order to spend time with Hugo. Grandma and I took care of many things from tree branches on the roof to a place for Hugo pictures in the house. Both Grandma and Grandpa Hauta and Grandma Bush have been wonderful about getting us Hugo pictures.

I can't remember the last time I printed a photo. Nowadays I casually take a picture and keep it on my phone or upload it. If Hugo had come home with us it would have been pictures as usual. However, since he isn't with us, it make me so happy to have physical pictures of him around the house. It makes him feel a little nearer. It helps me to place him in our home and daydream of him as a future part of it.

Hugo's most immediate task is to take larger feedings through his tube and get off the IV. Every day they've increased his feeding a little and dropped support from the IV. They check his residual before feedings to make sure he's digested the previous feeding. He's been digesting well but needed to slow down a little on Saturday night as his residual was a little too high to increase feeding again. As a bonus he has been holding his temperature a little bit better each day. They are not trying to make him hold his temperature (focusing on more than one system would be too stressful for the little guy) but if he does it himself they drop the temperature of the isolette to compensate.

Grandma Bush was happy to hold Hugo before she left. He seems to be a very peaceful baby at this time, happy to sleep in anyone's arms. He's also very patient with Nolan and me as we try to learn diaper changing through the holes in the isolette. I hope he brings these qualities home with him. He is, however, a Houdini pee-er. Nolan and I both know we need to be quicker with our diaper game but how he's able to pee all over his clothes without us noticing is beyond the both of us.

On Friday I made my way up to the 12th floor of the hospital to watch Nolan work at the Freshman Orientation. They gather everyone together to form an "I" on the field. Team building, I suppose. The band plays the school songs and they teach the words. Music plays, administration talks, hopefully friends and connections are formed. I never attended an orientation like that in my college years. I wonder if I would have enjoyed it or rolled my eyes. Seems nice and exciting to me now.

They even have a little fireworks show which I watched through the window of Hugo's room. Since this part of the hospital has only been open 6 months they have yet to experience game day. The freshman orientation was only a fraction of the people that flood the streets on game day. I'm curious to see what it will be like to experience a those days from the hospital windows.

Day 9

Hugo had another good night. They increased his feedings again. Hopefully he'll continue to digest them! He looked very fetching in the outfit that Grandma Bush had bought him.

We were surprised that they were discussing moving him to the Children's Hospital NICU wing. We had been told before that he would probably be a good candidate for that. The Children's Hospital handles more stable babies who are often preparing to go home. I was often asked if we were in one of the big rooms. Because I've only seen one room I asked them to describe the big room. There's a couch and chair and enough room to spend the night. We definitely were not in a big room. Since Hugo hasn't been that much trouble for them his name was in the ring to make the move. When the afternoon came they delivered the news that he was making the switch.

The new room is huge! Now I truly understand what they meant by the big room. The Children's Hospital is 6 months old and they did a truly fantastic job. The colors are bright and calming and anything you could want is in that room or on the floor. There's a rocking chair and desk space as well as a couch that pulls out into a bed, a fridge, a bathroom with a shower, and a view of Kinnick Stadium from the window. Hugo will be able to see where daddy will be working so many Saturdays in the coming fall.

The room changes so much for Nolan and me. It rearranges how much time we thought we'd be able to spend in the hospital and the conditions we thought we'd be working with and around. I am quite overwhelmed and grateful for the change. So much change. A little over a week ago Hugo came into this world into the intensive wing of the NICU. Now's he's in the Children's Hospital, back to birth weight, breathing on his own, and gradually learning to eat and keep his temperature. Things change at such a rapid pace. And while I worry about Hugo, I worry about Nolan and me. How we keep adjusting to Hugo's changes as well as the other changes in our life. Nolan has been at marching band camp this week and will start school next week. I'll go back to work next week. I hope we can keep our lives in order as we try to spend the most amount of time we can with our son.