Recap and update

So this is the third time I have changed the introduction to this post. Each time I sit down to write this entry I either get interrupted or too tired to go on, but I do want to take this opportunity to recap and update everyone. Take a deep breath this will be a long post.

Thursday at 2 we were taken into the operating room for our c-section. When two came around things happened really really quickly. We walked into the OR where the really nice and chatty anesthetist gave me a spinal. This is where they put a drug into the spinal column and within 5 minutes you are frozen from armpits to toes. While the freezing was taking effect they basically rushed me to lie down, washed my belly and set up a curtain between my head and the rest of my body. It was during this time that the teams of doctors and nurses arrived. There were 3 teams total – OR team, OB team and Neonatologist team. None of the teams were familiar to me. Dr. Soloman from the MFM clinic was true to her word and was there, but in the end I didn’t even notice because she was masked up. There was no paediatric surgeon. None of the doctors or nurses except the anesthetist talked to me. I actually didn’t know the surgery had started until I heard a small voice over the curtain say “lots of pressure now Jessica” which was when baby was being pulled out. After the fact I realized I worked myself up about this c-section for something that took 5 minutes of my life. Not that it was a cake walk, it was still scary as the numbing spread, and being left in the dark while everything was going on didn’t help. But once baby was out all those fears seemed completely inconsequential.

As I mentioned in her birth announcement, Isabelle cried the moment she came out. A really strong, healthy cry. She was a big strong 8 pounds. Her omphalocele is about half covered with skin. She was taken to her baby convertible bed – it’s a really cool unit that can be enclosed when needed or the top pops right off hydraulically and becomes the warming lights. The NICU team cleaned her off and checked her out. Mark got lots of pictures of the doctors and nurses poking and pointing at her omphalocele, but those pictures have no context because we don’t know what they were saying. I like to make up the conversation when I look at the pics:

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“Oh yes, jolly good show Isabelle, growing so much skin around your omph”

Mark was able to take some quick pictures while they set Isabelle up with nasal prongs and a repogle. The nasal prongs provide a bit more oxygen while the repogle is used to provide suction in her stomach to keep it empty. Through this time, I was being stitched up. But honestly I was just focused on the crying, which was such a beautiful sound to me. I must remember that when we get home and Isabelle is crying for her night time feeds. I was only able to quickly get a glance as she was wheeled to NICU.

I was then taken to the recovery room where I ravenously devoured a cup of ice chips. That was all I was allowed to have even though I really wanted some sushi. It was probably a good thing I listened to the nurses and took it slow so I didn’t throw up everywhere. Meanwhile it appears that Isabelle was fighting with her nurses about her repogle and nasal prongs. In the end she won the battle against the nasal prongs but her repogle was put through her nose instead of her mouth and taped to her face so she can’t pull it out. Isabelle also got her first haircut because the nurses had a hard time drawing blood for her blood work. They ended up trying 4 times in her skull to no avail. Poor little baby turned pin cushion.

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“Like my Mohawk momma?”

Once at children’s hospital’s NICU, everything seemed to spiral out of control. The one thing I like the least is when the plan changes too quickly and no one explains why the plan needs to change. The last day and a half have been really frustrating.

First, when hubby got to admitting he was told NICU was open again for visitors. Being excited, he told his family and mine, and some of our close friends. But then he gets up to NICU and was told, no, there are still strict restrictions. Parents and grandparents are welcome, siblings under 12 are not. And we have to choose 2 people to have visitation but those are the only two people allowed for Isabelle’s entire stay. We aren’t sure if those two people include grandparents or other relatives yet. We had hoped that Addison could meet Isabelle soon but it’s looking unlikely now.

The next more pressing item is what is happening with Isabelle in terms of her care and upcoming procedures regarding her omph. Initially, while Isabelle was still in her baby house, we were told that we would most likely be a candidate for the paint and wait method, painting the omphalocele with burn cream until a skin grows over the sac, then a pressure prosthesis to remodel the liver before closure surgery approximately when Isabelle is 6 months. After being transferred to the Children’s hospital Isabelle and daddy met her surgeon for the first time. Because of the extra skin growth around her omph, the surgeon was wanting to do the closure within 48 hours, and then do staged surgeries to close the muscle gap later on. She didn’t want to do paint and wait because she said it would be 2+ years (??!!!) before closure could be done. But then doc slept on it and decided paint and wait is the best path forward to not put too much pressure on the intestines and liver. She has decided to paint and wait using Vaseline and letting Isabelle grow her own skin, which I am surprised about because most of the literature I have read had mentioned using some sort of burn cream. I would like to talk to her more when I get discharged to ask about when the closure is estimated for (6 months and 5 years seems like a huge range) and why we are not using anything to encourage skin growth. I also want to get a clearer understanding of what milestones we need to hit to go home.

Finally I am really confused about Isabelle’s feedings. Initially Isabelle was not getting anything orally because they were going to do a skin closure surgery within 48 hours. They were feeding her through an IV. Then the surgeon decided that we weren’t going to do a surgery and so therefore we could start feeding her orally, a tiny little bit at a time to make sure her intestinal system can handle it. Then yesterday they put in a PIC line. (go here for more information) someone (I don’t know who) told hubby that this is for feeding since she can only start oral feedings slowly. But then yesterday we were told the PIC line was put in to prep Isabelle for surgery. The nurse also told us that the PIC line didn’t go in as far as they would like it to neither so they may have to do it again in a few days. I am so confused about this one because my baby isn’t getting surgery for a long time and we are supposed to be outpatients so I cannot imagine us needing a PIC line now for future surgeries.

Back at foothills I just spent the day and a half resting and pumping. Being away from my child has been really hard. I worked really hard to be able to visit Izzy yesterday afternoon and was really excited when we got the clearance to go for a couple of hours and my husband came over to get me. But when we got back to the hospital they were inserting the PIC line and we had to wait in the family room. After an hour of waiting we went and asked how much longer it would take. One more hour. So now we need to go back to Foothills without seeing Isabelle. I was devastated but determined. After dinner and drugs, we tried again but this time we called NICU first, and we were able to sneak in a late night visit. This was the first time that daddy was allowed to cuddle Isabelle even though he had spent two days following her around. I was incredibly sore and exhausted by then but it was so worth it to see her and hold her.

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“Reunited and it feels so good!”

Today I am getting discharged. I think it will be physically harder but emotionally a hundred times better. I can’t wait to see Addison and cuddle with her. I can’t wait to spend more time with Isabelle. It will be so good to be able to meet with Izzy’s doctors and get some questions answered. Right now I am so exhausted and drained but I hope the day will be a good one.

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2 thoughts on “Recap and update”

  1. Congrats!! We are so happy for you guys!! She is beautiful!! Can’t wait to meet her when she comes home!! Tim and Courtney Dreger

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  2. Oh Jess my heart goes out to you what with the mixed messages post Surgicsl pain and no sleep all while you’re wanting to get to know your girl. Hopefully you will sleep great in your own bed sand more confident navigating the maze that it health care!
    Love and prayers and good wishes
    Carol and Jim

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