Adri’s Story – Part 4: Recovery

*WARNING: THIS POST CONTAINS GRAPHIC MEDICAL IMAGES*. This post is Part 4 of my beautiful daughter’s amazing journey – Recovery from Open Heart Surgery. For Part 1: Birth and Diagnosis, click here. For Part 2: Before Surgery, click here. For Part 3: Surgery, click here. 

These are the excerpts journal entries I kept on an amazing site www.caringbridge.org that lets you create private pages specifically for people going through serious illnesses or traumas to keep family and friends updated:

Written Jan 15, 2009 4:00pm

Day 2

Adri’s still recovering well. We were surprised (and a little concerned) when we went into the ICU this morning to see her moving! While we were gone she had been taken off the muscle relaxants, as well as the anesthesia that was keeping her unconscious. This is great progress. She was trying to open her eyes a bit, but is still on loads of pain killers, so is quite out of it. Her vocal chords are still relaxed so she can’t make any noises. 

Another big step is that she got to eat a bit today! They feed her breast milk, which is great – at a rate of about 1 cc an hour as her stomach is still waking up from the anesthetic, and it can only take a bit at a time. She’s still on IV as well. They will have to stop feeding her again tomorrow so her stomach is empty before she goes back into the OR (just briefly) to have her sternum closed – Yay! That is the last of the procedures that she will need for a while. Next step is getting rid of the breathing tube.

Our nurse today was Sue. We also talked briefly with Dr. Hoskings our cardiologist, who checked in to see how she was doing and just to reaffirm that the surgery went well and that she’s recovering nicely. We saw Wendy and Dr. Martin who did the MRI yesterday and are going to be working with us for the duration of the study. They told us that her MRI was wonderful. No white matter lesions, and no strokes! We talked at length with Lori – the cardiac nurse specialist – who gave us most of the info about her surgery and recovery, so that was great!

I hate leaving her, but also hate sitting around watching them poke and prod her. I’ll be happy when we’re out of ICU.

Written Jan 16, 2009 9:43pm

Day 3

It’s been an up and down day today. Adri and I had a nice quiet morning while Scott was at work. I sat with her most of the morning, talking to her, and reading my book. Her feeding had been stopping in anticipation of the surgery in the afternoon to close her chest. She had been given some extra sleeping medication as she was a bit too active yesterday, and she was straining a bit against her ventilator, as well as it can put a bit too much stress on an open sternum.

Unfortunately over lunch she had what they think was a seizure. Her body went stiff and she was posturing with her arms, as well as her eyes rolled up and out to the corners of her head – no convulsions though. They did an EEG, and saw no unusual activity, so they did a CAT scan as well. The scan revealed a small clot in the back of her head right at the base of the brain. Dr Campbell, our surgeon wasn’t sure what to do with that, so he called in a neurology team to take a look. Dr. Steinbok, the head neurologist didn’t think it was a big deal as the blood had clotted (so it wasn’t actively bleeding), as well as it was not IN the brain, but between the brain and the skull. Also, it wasn’t very big – about 5 cc’s of blood, so wasn’t putting any pressure on anything. They could do surgery to take care of it, but the location is a very risky place, and it wasn’t harming anything, so they decided to leave it for the body to rid itself of, and just monitor it to be sure there was no more bleeding. They weren’t 100% sure of the cause, but thought that it had probably occurred during surgery when they have to thin her blood. Small bleeds like that are fairly common, although the location was unusual. They decided to do an ultrasound of her brain tomorrow morning. Assuming nothing else happens, they will also wean her off of the morphine tomorrow, meaning she will be able to come off the ventilator as well!

We had a great night nurse – Stephen – who let me wash her face, and put the vasaline on her lips to keep them moist. Her first lipstick!

Written Jan 17, 2009 9:17pm

Didn’t have a great start to the morning. We called in around 6 am to get an update before we went in to the hospital and found out that Adri had had another seizure about 30 minutes before our call. We arrived at the hospital around 7:45am and nothing much happened until they did their rounds. Carol was our day nurse, and helped explain a bit about what they had decided to do after rounds. They were going to perform another EEG, and do an ultrasound to hopefully determine the source of the seizures and to make sure she wasn’t having sub-clinical seizures that were going undetected. They were also going to do an echo to check on the progress of her heart. They put her on an anti-seizure medication to prevent any more from happening. She was taken of the sleepy medication they had given her before as her sternum was now closed. They were going to resume the feedings at 2 cc’s an hour. They had started to wean her off the ventilator, but had stopped that after the second seizure happened just in case she needed to go for another CAT scan.

We waited around for most of the morning, taking turns talking to her, and chatting with the nurse – hoping that they would come and do the tests they needed to sort out the seizure stuff. They did an echo almost right away after rounds, and everything was normal and healing well with her heart. They finally came to do the EEG around 12:30pm, but it showed no unusual activity. We had to leave about 1:30pm because Scott had to go to work.

I called in around 6:30, and she had had an uneventful afternoon. They never did the ultrasound (grr), but other than that she was doing well. They had up’d her feeds to 4 cc’s an hour!

Its funny looking back on these journal entries, I realize how bland and kind of upbeat they are. It doesn’t do justice to the roller coaster ride we were going through. It doesn’t communicate just how happy Stephen the night nurse made me when he asked me to clean my daughter’s face or apply some Vaseline. To have a role in caring for me helpless baby – no matter how small – meant the world to me! It doesn’t communicate how scared we were when she had her seizures, or how devastated we were when they told us she had a clot in her brain. No matter how much they downplayed these things, your baby still has a CLOT IN HER BRAIN!!!!

That pretty much characterized our recovery period with Adri. The highest of highs, celebrating each milestone; moving to our own room on day 5 so we could both stay with her, removing the feeding tube on day 7 and having a ‘wireless baby’ on day 11. The lowest of lows; seizures and clots, reactions to anti seizure meds, incision infections, vein after vein collapsing from so many draws and IV’s. It got to the point where they were contemplating putting an IV port in her head as they were running out of options. In. Her. Head. Too much to handle for this mama. I would leave as soon as I saw that cart rolling down the hall. I didn’t want her to associate mama with the torture, but didn’t want to abandon her either. We worked out a system where Daddy stayed for the procedure and Mama would go find a corner to hide/cry in then swoop in afterwards for snuggles, songs and milk. I use the word helpless a lot in these posts, but its hard to describe it any other way when your baby is crying and you have no idea if she’s in pain and needs more meds, or is hungry or is tired or lonely or ….? Her feeds and meds were so (understandably) controlled but I just wanted to scream “can’t you see she needs something”!

My saving grace was the amazing support we received from so many. A good friend’s baby boy was also in the hospital for surgery at the same time. We would visit, have little spa parties in the room and keep each other company. We had a steady flow of generous friends who brought food every day, gas cards for Scott who was sleeping with us at the hospital but still driving out to the valley for work every day, magazines, wine, you name it, they brought it. The staff – despite my temporary loathing for the torture they inflicted on my baby (necessary, I know) – were incredible. They brought us an extra bed so both Scott and I could stay at the hospital over night each night. They wrote special messages for us on our white board to encourage us. They took Adri for walks in the halls at night when she was restless so Scott and I could get a few minutes of sleep. I could go on and on.

After many tears were shed, we finally got to go home on day 12. It seemed like we had been there forever, but all of a sudden it sunk in that I was going to be solely responsible for this wee thing whose chest had been open and heart had been stopped just 12 short days ago! My biggest fear was over or under medicating her, but in the end, we managed marvelously.

Looking back 5 years later, after monthly, quarterly, annually and now bi-annual cardio follow ups, I am so happy to report my strong girl is happy and healthy. She never had to have any more surgeries and is remarkably ahead of the curve both physically and mentally in spite of concerns that she might be well behind. I know that this experience shaped our entire parenting path. I believe that the biggest lesson we learned from it all was just how little control we have over these precious ones with whose care we have been entrusted. I think we are much more relaxed and easy-going parents as a direct result of this whole experience. There is simply no point in setting overly restrictive boundaries or enforcing arbitrary rules. We celebrate the big things and the little things, just so thrilled to have our family healthy and whole.