There are no words to describe the feeling of seeing your baby actively dying in your hands. There are no words to describe sitting in the floor of sterile hallway knowing that your child is fighting for her life and not knowing if she'll make it through the hour. I would never wish it upon any one, and you can't understand until you've been there. I know many parents have experienced the opposite outcome and am forever grateful to still have my sweet baby. She is now stabile but is still so sick. She's the strongest individual I've ever met and I can't believe she's mine. She been through more in her 10 days of life than most ever will in long full lives. She has fought to stay with us and now it's time we fight like hell for her.
The day started with her chest X-ray looking worse on the right side, meaning she was having fluid, infection, too much blood flow, or simply trouble completely expanding that right lung due to pain/discomfort. However the doctors on call were really hoping to move her to the non-specialized floor. So she had the medication helping her heart beat more effectively stopped; had an IV access to the right atrium pulled by the surgical team (where she lost enough blood that questioned replacing it but in the end decided not to); she had her nasogastric tube (put in the night before because she couldn't tolerate enough milk by mouth) advanced into her intestine due to fear she was aspirating her feeds; she was diureased quite a bit (likely too much); and lastly she was started on positive pressure breathing treatments to force her right lung to expand.
Despite so much going on yesterday she seemed to do pretty well except she was breathing too fast and not keeping her oxygen saturation quite as high as the providers wanted. She was started back on the high flow oxygen to help her perfuse and expand her right lung between breathing treatments.
She spent more of the day awake and alert than she ever had before. Although looking back, it may have been a sign of restlessness from having to work too hard to breathe. She wasn't fussy and didn't let on that she was struggling though. She was coo'ing and studying our faces intently. With less fluid on board we could see that she seems to have my big round eyes.
Around 6pm things took a turn for the worst. She got a breathing treatment and afterwards we noticed she was pale. We attributed a bit of this to her blood loss during the day. I was then helping the nurse change her diaper when I noticed her eyes roll, a moment later her saturations dropped to 30%. The nurse ran out of the room to find the doctor right as she quit breathing and her heart rate began to slow. I was holding her trying to stimulate her into breathing again. She was bluish gray and cold. Her body was lifeless for what seemed like eternity. Yet it was only seconds. By the time the doctor and nurse came back she was gasping with her mouth wide open and head thrown back. She continued gray and mottle and her heart rate continued to drop. The doctor called a code and the nurse began to bag her. My in-laws and I were rushed from the room.
Sean had just left the hospital for a moment to get fresh clothes, so he wasn't here. That made things so much harder. I spent half an hour sitting in a hallway without news, wondering if our was going to live or die and how and what I could possibly say to Sean.
I had gotten through to Sean by the time the doctor came by to say she was "stabilized". Sean was able to listen over the phone to the doctor while he was on his way back to the hospital. We weren't allowed back in to see her for another hour. It wasn't long before we learned her lactate level was up to 15 showing extreme tissue hypoxia. But we are still not quite sure as to why. It could've been infection, infarct, blood loss, sepsis, poor lung expansion, heart failure and so on. She got an echocardiogram that had favorable findings. Her cardiac function and output looked as expected- leaving not a whole lot of answers for her episode of heart failure other than just over taxing her cardio-pulmonary system.
The night was tenuous, she trouble keeping her blood pressure up and had to have extra medications and fluid to her her perfuse. She also bit her breathing tube which caused her saturations to drop again to the point she needed to be bagged and masked but when she passed out she let go of the tube.
Now she's all swollen again and the plan for the day is to get fluid off of her to make it easier to breathe.
So far she is doing as well as we can hope for given the events of last night. She is diuresing and making headway.
Sean and I are being pretty adamant that her providers allow her to rest and take things slower now. We aren't pushing to have her extubated today or even early tomorrow. She needs rest and time to heal. She was pushed too hard, too fast, for too long. We can't let that happen again.
The cardiologists seem to think that she can't expand her lungs well due to irritants- possibly pain, the chest tube, generalized neonatal weakness and all the stress she's been under since her open heart surgery. They do not believe it's a right sided over perfusion issue. The ICU doctors believe it's a right sided over perfusion issue causing fluid build up in the right lung. The cardiologist's explanations have made more since to Sean and I. Plus we have questioned the speed of the ICU team's interventions for days and have been ignored. To us the signs point to her being over taxed and undersupported after her surgery. Which as it turns out has never been done before. The surgeon had to improvise with her anatomy in order to optimize growth and expansion of her left PA.
Through it all, she has fought valiantly. She has not been fussy nor has she cried much at all, despite being tapered from morphine early (we advised against it and were ignored), and being forced to breathe through the pain and discomfort. In doing this she could only manage short shallow breaths which eventually led to her event.
I've almost lost my baby multiple times in the short 10 days that she's been on this earth. Twice because she was pushed to do things she wasn't yet ready to do. She needs time to recover and heal at her own pace. Sean and I cannot and will not sit idly and watch it happen again.
My child nearly died in my hands and there was nothing I could do about it. I don't intend to relieve the experience and I don't intend on losing my her.
As always, please keep her in your thoughts and prayers.