NICU diaries

newborn twin boy in the nicu diagnosed with VACTERL
Sebastian left, Alaric right

I’ve been wanting to share Sebastian’s details on my blog for a long time, but was too emotional during the whole process to even attempt it. Thank goodness for Instagram, where I could share snippets almost on the daily in my NICU diaries story.

I was so proud of myself for A) making it to my delivery date and B) managing to get both boys over 5 pounds (in order to avoid a NICU visit). Well dang. Didn’t avoid that after all.

Sebastian was retrieved a minute after Alaric. I heard them state his weight (5 lbs 4oz woohoo!) and then concern regarding his weak cries.

After that, things are kind of a blur. I have low iron, lost a lot of blood, and was woozy for the rest of the day. I remember someone telling me that Sebastian needed to be taken to another hospital (Children’s Hermann Memorial in the med center). They wheeled him in the transport incubator so I could see him before he left, and I was so weak, it barely registered. I immediately compartmentalized the situation.

newborn twin boy in the nicu diagnosed with VACTERL

Side note: My low iron/low BP was an issue after Lila’s birth as well, but this time around they checked my hemoglobin level (maybe because this was a different hospital?) and discovered it was at about 4.7, which is less than half of where it should be. The nurse put me on the phone with my doctor at about 5AM(?), who told me I’d need a blood transfusion. I received two units throughout the entire day and definitely began to feel more alert.

A few hours after Sebastian was taken, a doctor called D and I to explain Sebastian’s situation. I was taking notes in my phone but I kept nodding off (side effect of low iron/BP) even though I realized this was an important conversation. I still won’t google Sebastian’s abnormalities after a scare the first time I tried. So here is what I know:

Sebastian is diagnosed as VACTERL (acronym) because he has at least three abnormalities from a specific list: esophageal atresia, anal atresia, and a hole in a muscle in his heart (expected to close up as he grows).

newborn twin boy in the nicu diagnosed with VACTERL

The more important surgery happened first, 2 days after he was born – separating his airway from his digestive tract, as well as a colostomy until his anal atresia surgery. He made it through the surgery and Daniel was visiting daily while I was at the other hospital. We were unable to hold him after the surgeries because he needed to keep his chin into his chest while he healed (which means he was also sedated), and he had chest tubes put in to catch any potential leaks from the procedure site (we hadn’t held him at all yet). I mentioned the tubes quite frequently in my Instagram updates because they seemed the most uncomfortable for Sebastian and hindered much progress.

Side note: Once I was released from the hospital and we left with one baby, it hit me and the flood gates opened. For the next two weeks it was incredibly difficult to close them. And any time anyone hugged me, asked how I was doing, or sent me really sweet messages, I cried. Crying was really easy during his entire NICU stay, but the first two weeks were the scariest.

My first visit to the NICU. I was very nervous and crying on and off. Sebastian was in this position for about 2 weeks in order to heal and developed a bed sore on the back of his head. It’s currently dried up and scabbed over.
Before we were able to hold Sebastian, we read to him at every visit. Once we were able to hold him Daniel was back at work at visiting evenings (I visited during the day) so we mostly sang and talked. It was too hard to hold him and a book.
I visited in a wheelchair the first couple weeks, I think. Maybe week and a half? I definitely started forcing myself to walk farther in a shorter amount of time than my first c-section because of this fiasco. It put me in bed for the rest of the day.

Sebastian also had a breathing tube put in as a safety measure, I believe. The doctors ended up keeping it in longer because he seemed to have breathing issues off and on, even though he primarily breathed on his own. I was so excited when they finally took it out (after 2 weeks and a few days). It seemed so uncomfortable and chapped up his lips. Shortly after, he needed a nasal cannula to assist with his breathing (not for long!). The feeding tube and bandage mustache remained.

When Sebastian was three weeks old, I came to the NICU and his nurse informed me that his final chest tube had been removed. That meant we could hold him for the first time! I cried. It was the best. I was really nervous, but he just slept and slept in my arms. It was so sweet.

Side note: Those chest tubes caused us a lot of grief. The doctors kept them in because Sebastian appeared to have a leak near his right lung, but it ended up being caused by one of the chest tubes poking out of the incision just enough to suck air in. He had a lot of X-rays done to check on the air pocket and it usually held him back from any progress. One day after they were removed, there was talk of putting one back in. But it turned out to be residual air that the doctors decided would naturally work its way out. It was an emotional afternoon between those two phone calls telling us different things. :-O

Once Sebastian started taking bottles more regularly, his feeding tube was replaced with a smaller one, and the bandage mustache was removed. Another exciting day because I could see his little face. 🙂

NICU Christmas photos. Such a cute idea. There were always donated gifts (like the blanket he’s laying on) and sweet pieces of holiday art made with handprints and footprints.

Things started moving pretty quickly after that. He was up and down with the bottle feeds for a while because of the aforementioned chest tube issues, but then he got the hang of it and was eating more than the “requirement” for release.

Almost released! No tubes!

Before we were cleared to take Sebastian home, we needed to change his colostomy bag a couple times. Daniel took the reins and has become pretty good at it. I simply clean and assist. The colostomy has been the biggest issue because it’s a stressful situation, but after 2 weeks, we are finally getting the hang of it. Daniel even has a tool box that is strictly for Sebastian’s colostomy bag supplies.

On the day we went to pick up Sebastian, after a month and 2 days, we took a giant bag of goodies for the nurses’ lounge. It was filled with soda, little Debbie cakes, candy, crackers, cookies, etc. We also made a small bag for the front desk ladies who greeted us and checked us in every day. The nurses, doctors, and specialists that communicated with us the most, and made the biggest impact received Tiny & Snail thank you cards with Starbucks gift cards included. One of the Occupational Therapists actually called to thank me for the card. So sweet!

Daniel and the goodie bags.
Peace out, hospital!

Sebastian’s next surgery is scheduled for February, and then a month later is what I call the reverse colostomy – not sure if that’s the actual name.

Obviously we’ll be dealing with check ups his entire life. But we are feeling much better about our darling little fighter. Lately he seems to be dealing with gas, which is painful to see him go through, but other than that, he is a pretty chill little baby boy.

We’ve nicknamed him Squeakers because the surgery and breathing tube have irritated his throat and vocal cords so much that any sound he makes comes out as a squeak.

Side note: The irritation/surgery also makes him sound gunky during his bottle feeding, and for a few minutes afterwards.

Brothers’ first meeting.
Brothers’ first co-nap.

Everybody was great for the first few days. But…soon after Sebastian came home, Lila went to stay with my parents after a swab at the doctor’s office informed us she had an upper respiratory infection. A week later, Alaric started showing symptoms.

Lila ended up staying at my parents’ house for 10 days, when her cough finally went away. Alaric is still on the mend but the roughest weekend was when we first discovered he was sick and took him to the doctor that Monday. Daniel and Sebastian have been staying in the living room in order to keep Sebastian healthy. Fingers crossed we get through this soon.

I think that’s basically everything. There were some really dark times when I’m so glad that my friends and family offered us support. It was very easy to breakdown, and my OBGYN has me on postpartum depression watch – she said I was/am at very high risk. But I have a great support system. Everyone’s encouraging messages gave me hope when I could easily just break down at any moment.

Thank you again for your help and support, whether it was verbal or tangible, we are so incredibly grateful. Shout out to my parents’ and my mother in law for all of their help with the children!! We couldn’t have done it without you…because sleep is necessary.

roxy

6 Comments

  1. You are a strong Mama! Seriously in awe at the strength between you and Daniel. What love you both have! Thanks for sharing your story and you are in my thoughts so often!!

  2. You and Daniel are amazing! ♥️♥️♥️ So glad you’re all under one roof again, and even though the road ahead won’t be easy y’all have this!

    • thank you! yes, things are drastically different. but hopefully good different soon. 🙂

  3. I am glad to read your post. I’ve been following on Instagram (no time for blog as of lately ugh) but sometimes i missed days of posts, or you didn’t go into details. I am glad you shared your story, and I hope the next surgeries go smoothly

    • thank you! i do the same with other people i follow, so i figured i should get it all out there, for myself as well as everyone following along.

Leave a Reply

Your email address will not be published. Required fields are marked *

This site uses Akismet to reduce spam. Learn how your comment data is processed.