On the Charts!

Hugo's follow up with the High Risk Clinic and his 4 month Well-Baby appointment have put him on the charts for his birth age! His weight is 14 lbs which puts him in the 19th percentile for 4 month old baby boys. This is followed by his head circumference and his length. The doctors tell us that length is the last thing to catch up in premature infants.

At the High Risk Clinic they did a bunch of tests to check his development. Hugo brought his a developmental A-game and he is right on track. That must be a fun job playing with babies all day!

After his appointment, Hugo made his first trip to the 12th floor of the Children's Hospital to overlook Kinnick Stadium. During his time at the hospital he was never able to leave his room to check out the view!

Hugo has started to thrill us with his smiles and his laughs and his cooing. It makes it all worth it when they start recognizing you're there! He's been filling out nicely and has the cutest little cheeks. We're elated that he's pretty much in the realm of normal baby!

Thanksgiving Week with the Bushes

After Grandma and Grandpa Hauta left, Grandma and Grandpa Bush arrived with Aunt Crystal. Hugo's first Thanksgiving was spent at the Iowa River Power Restaurant. The food was delicious and I was happy not to cook.

On Black Friday we relaxed a bit. Grandma and Grandpa Bush brought a swing for us to borrow which Hugo took to quite nicely. It looks so comfy I wish they made one for adults.

On Saturday we headed to downtown Iowa City and took a horse drawn trolley ride around the town. Hugo was able to stay asleep even through the chorus of Jingle Bells.

After the trolley ride we walked around the town searching for the hidden elves on the shelves. If you could find 15 they give you a prize! It was nice to get out and walk and discover the local stores in the downtown area.

On Sunday Grandpa Bush gave Hugo his baby blessing. We are so grateful that family has been able to visit us this year to help us and to meet Hugo!

Thanksgiving Week with the Hautas

Thanksgiving week began with Grandma and Grandpa Hauta who arrived on the evening of the 18th after the football game. Grandma Hauta had been waiting a long time to hold Hugo without him being attached to wires and machines! He was happy to get so much love and attention.

Grandma and Grandpa Hauta helped us take care of Hugo and the house. Many things were falling behind in all the craziness! But we were able to venture out of the house with Hugo on a trip to the Amana colonies and a dinner out.

Hugo even had his first visit with Santa! This was not very helpful, however, seeing as he isn't old enough to make any Christmas requests.

We were so happy to see Grandma and Grandpa Hauta and we hope we'll see them again soon. Hugo was on the brink of interaction at this time. Next time he'll be smiling and laughing!

Hugo Waves

Hugo got dressed up on November 18th to cheer for the Hawkeyes! I had debated whether or not to attend this game. It's complicated bringing a baby to a football game. But I felt it was a meaningful part of our journey with Hugo.

So I bundled him up and, with the help of some friends, we made our way to the game. Once he had eaten Hugo made himself comfortable by sleeping most of the time. The headphones protected him from the piccolos and the drum line nearby.

He even slept through his first picture with Herky the Hawk. He slept through a lot of things which was a relief. It was pretty chilly that day so we held him close and had him wrapped up tightly.

After the first quarter, Hugo and I climbed onto the ladder with Nolan to wave at the children's hospital. Only a month before we were waving from the other side! It was a poignant gesture that reminded us of our journey and how grateful we are to have come so far.

The band performed its encore wave to the hospital that day as well. We have been so lucky to have our Hawkeye family during this time. They've been such a blessing to us and to our Hawkeye Hugo!

Nolan's Birthday

For Nolan's birthday this year we went out a new Ethiopian restaurant in Coralville. Hugo stayed at home with a babysitter. It was nice to be out but also felt strange not to have Hugo with us!

We stayed long enough to have a beautiful baklava dessert but then we rushed home.

On the actual day of Nolan's birthday Hugo and I visited him at school in between his classes and rehearsals. We brought him one of his favorite dinners: wings!

Nolan was happy to receive his birthday gift which will subtly encourage Hugo toward his first word.

Thyroid

When Hugo came home from the hospital he had a scheduled endocrinology appointment. They were going to explain to me the reason for this appointment but in the outbreak of activity leaving the hospital it was never clarified. No matter. When the day of the appointment finally came the nurse asked if I had any questions. I really only had one: Why are we here today? Turns out she didn't really know either so we didn't get any answers until the doctor came in.

Hugo had slightly elevated levels of TSH (Thyroid Stimulating Hormone) which meant his thyroid was not producing enough hormone. It was barely elevated when he left the hospital (Reference range is .80-6.30. Hugo was at 6.50. An infant without any thyroid function will have levels around 500.) but they wanted to follow up to make sure it didn't go higher. I learned the thyroid is responsible for many more things than weight, most importantly brain development. Severe hypothyroidism can cause intellectual disability and developmental delay. They drew blood to retest Hugo and his levels had gone up to 9.50. This was barely high enough that the doctor thought it best to start medication. Because there is no reliable liquid form Hugo would have to take a daily pill.

I was very nervous about getting him to take a pill and felt very pressured that if I failed it could affect his brain development. I read online how others got their baby to take the pill. Some crushed it up and gave it with a bit of milk. Others crushed it up and let the baby gum it off their finger. I was told not to give the pill during or directly after or before a feeding. Calcium and iron can affect the absorption of the medication. I tried to mix it with a small bit of milk and syringed it into his mouth. But a satiated baby between feedings is not motivated to drink. Everything syringed into his mouth and came right back out.

When he was sleeping I went over and poked around his mouth. He opened it a bit and I popped the pill in. Instead of pushing it out he sleepily gummed it and then stopped. I panicked a little. I couldn't get him to open his mouth to see the pill. I called the pharmacist who told me that the pill will indeed dissolve. As a result, we've been using this method for him to get the pill. Now he's even better about taking it when he's awake. We just have to make sure he doesn't push it out with his tongue. His TSH was recently tested again and the levels were below normal this time which meant his medication dose was too high. Now he takes half a pill instead of a whole one. We don't yet know if this is a permanent or temporary condition for Hugo. That the levels were below normal is encouraging that it might be temporary but we'll see as time goes on! Projected time on the medication is 2-3 years.

October

October was an exciting month for Hugo. Aunt Brittany came and helped set up his room and take care of him. Brittany also inspired me and Hugo to get out a little. Before she came we spent a lot of time cooped up at home except for doctor appointments.

We visited dad at work. University of Iowa opened a brand new music building last year. One of the crowning features is the pipe organ in the concert hall. Nolan was running a rehearsal for the Concert Band when we arrived.

We were also able to go to the local corn maze. It was nice not to miss out on all the fun October has to offer. While Aunt Brittany was out here Hugo had his final eye appointment to check for retinopathy. He passed with flying colors.

We spent Halloween handing out candy, Hugo wasn't great and still isn't great about looking at the camera but at least he looks like he was having a good time.

The Boy with Three Birthdays

I thought I was going to bring a child into a world of cooling temperatures and changing leaves. A season of pumpkin patches and corn mazes peppered with haunted houses. Planning birthday parties was going to be a piece of cake.

Instead Hugo gave us reason to celebrate in a time of 90 degree weather when the trees and the grass were still green. These days are also a time of transition: the anticipation of new school beginnings and the pining for an extended summer.

And while I dangled in between these two assigned times, accepting the summer and awaiting the fall, Hugo broke free from the hospital and created another day to celebrate.

And now the day has finally arrived. The day that was the first and now is the last. October 16th was Hugo's due date. He has officially crossed over into the world of adjusted ages. Aunt Brittany arrived as planned to be here the week Hugo was due. Nolan bought us special cupcakes to celebrate Hugo day. I've spent so much time this year thinking of, daydreaming of, and longing for this day. The journey to it has been entirely unexpected. I haven't yet sorted through my thoughts and feelings of the day. But it seems like the end of a chapter and I'm excited to start writing a new one. Here's to our little Hugo: the boy with three birthdays!

Hugo at Home

Hugo packed up for his first doctor appointment shortly after he came home. Hugo has been gaining weight nicely. He's now an 8 pound baby! His follow up eye appointments still show that his eyes are developing properly and show no sign of Retinopathy.

while at the store one day a woman asked me how old Hugo was. Without thinking I answered 36 weeks. There was clear confusion on her face. Oh, right. Umm, he's a month and a half? In the hospital we always referred to Hugo by his gestational age. It's kind of a mind twist to think of his age from his date of birth. He's the size of a newborn and does so many newborn things. It's hard for me not to consider him a newborn. Technically he's almost two months! He's a mixture of months with an extra 10 weeks to meet his milestones.

We've been trying to get in some tummy time but he's usually so sleepy! Other than doctor appointments we've ventured out for some family walks.

The first day we were back the cats cuddled up a little bit to Hugo. Now that they've realized he's a little boring they've been trying to push him out of their spot in our laps. To let them know we haven't forgotten about them we celebrated their estimated cat birthday with some fancy food.

Although I spend a lot more time now taking care of Hugo it feels like life has slowed down a little bit. I'm not working during this time and we no longer have to run back and forth between the hospital, work, and home. Though it's tiring, it's wonderful to have him with us.

Hugo Comes Home! Day 38-40

After 40 days in the NICU, on September 16, Hugo was prepared to come home! He certainly has a talent for showing us who runs the show. The week Hugo arrived I missed a significant work trip. The weekend Hugo decided to come home was the weekend of Nolan's halftime show with the Hawkeye Marching Band. Any other week or weekend during the third trimester would have been inconsequential. But we certainly have a lot of memorable moments and great stories to tell him when he grows up!

At the end of the first quarter the whole stadium turned to wave to the Children's Hospital and to Hugo for the last time. Nolan held up a sign for Hugo and the band chanted his name! Go Hugo!

I opted to wave down from the top floor of the hospital. Nolan's sign is a little difficult to read but we know what it says!

Nolan was surprisingly able to focus on conducting his halftime show with the Children's Hospital overseeing the action. Hugo was able to head home with a Hawkeye win over North Texas. It was an emotional time saying good-bye to the NICU. We were surprised at all the things we managed to pack into the room in the amount of time we were there. The staff have been so wonderful. We will miss their encouragement and their advice.

While Nolan and his parents left to get the cars out of the garage I stayed with Hugo. As we changed his diaper in the NICU for the last time the nurse pulled the leads off his little chest and feet and I started crying. She asked if they were tears of joy or fear. Both. I wanted Hugo to come home. I hated those machines. I hated how they would happily ding when something was wrong. They mocked me for not knowing what to do. But they were also a source of comfort. "How will I know he's okay?" I cried. As long as the machines remained silent I knew my little boy was all right.

Now that responsibility is ours alone. Everyone must feel this as a first time parent. We constantly check to make sure he's still breathing which is kind of silly because breathing was always one of Hugo's strong points. So far Hugo's chosen to be a rather good-natured baby and his time at home has been a sleepy joy. Feeding time requires a little coaxing but of course we'll keep to it.

After the initial shock of the new arrival, the rest of our little family has quickly started to cuddle up to Hugo. (But not cuddle too closely) The cats are probably most pleased that we are at the house a lot more than we have been the last 40 days. We're grateful to be home too. We have already learned and felt so much during Hugo's short time with us it's hard to believe the adventure is just beginning. The love and support that have been given to us has been so overwhelming and poignant. We are so grateful to all the people in our lives who have watched over us and Hugo during this time.

Day 34-37

Hugo continues to do so well! He's almost six pounds now and they have moved him to Phase 3 of the cue based feeding. In this phase he will receive all of his feedings by bottle or breast at times determined by him but he has to reach a certain number of milliliters in a twelve hour shift. If he doesn't reach it they will feed him the rest by bolus.

And he was moved to a crib! Nolan is one proud Papa. Hugo has been doing a great job keeping his temperature. Once he was in the crib they started him with a onesie, a sleeper, a sleep sack, a hat, and a blanket. As he continued to keep his temperature he was slowly able to shed layers down to the goal of a sleep sack with a onesie or sleeper.

Once Hugo spends a few more days off caffeine without spells and gets though Phase 4 of feeding he'll be cleared to come home. The doctor has told us it could even be at the end of this week! In order to prepare the cats we brought home one of Hugo's hospital blankets. They were supremely interested in the scent but eventually decided the soft texture of the blanket was more captivating.

I cannot believe how far our little boy has come! The end of his hospital stay is so near. He's done a fantastic job. He's caught us unprepared yet again. Probably not for the last time.