Monday, June 29, 2009

sorry for the absence

It's been a rough rough rough weekend in the PICU here at rainbow. Three kids died, that I know of. There has been a little baby in the room next to us that was on ECMO (that's the machine kaia was on that pumped her blood for her) for a week now. He had a procedure done on him today. I saw a wooden cart come flying down the hallway and park in front of his door. When the nurses in our room saw the cart, they ran next door. All i could hear was the sound of flatlining alarms going off and mass amounts of syringes being filled with medicines...probably adrenaline. Next thing I saw were doctors leaving and machines being taken out of the room. Within 20 minutes, the room was empty. I sat down to breastpump, and I heard shrieking. I instantly knew it was the mother. I jolted up from pumping and found eric and asked who that was. He said it was some kid crying but i knew that sound could only come from a mother who had just lost her child. I was right. I said to our nurse "it sounds like a torture chamber in here today". And she said "believe it or not, that came from outside the unit." And I said "it was the mother, wasn't it." She shook her head yes. I heard her screaming, loud and clear, like it was in our room but she was way down the hall and in the waiting area outside the picu doors. I feel horrible. I feel like vomiting. I can't eat. I can't go outside. I can't leave Kaia.

Yesterday, I saw the family that was with their child a few doors down, crying out in the waiting area. I had been talking with that mother over the last several days. When i saw them out there crying, I knew they lost their child too. Today, that room is empty.

The third child was probably 15 years old. She'd been on ecmo since we've been here. Her room is empty too. The empty rooms are so eerie. I've not thought about the kids who have passed while in here until this weekend, as we were around three that had passed. It's strange to think their little souls drifted off with us next door. It's a horrible feeling that is so strange and surreal. I can't explain it, nor do i want to. I just know that I don't want to be that mother that I heard today. That would be me, if anything happens to Kaia.

So, the breathing tube never came out. We are dumbfounded. Apprehension has been a big issue of mine while in here, and I've learned to trust my gut instinct at this point. Every time I've felt some certain way when it comes to Kaia, I've been right. That first time she came off the tube, she was 3 days extubated and it was father's day.....eric and i had just started feeling comfortable going home thinking we were on the easy end of things. But that sunday, I had an anxiety attack of sorts about going home. I had not cried much in a week, but i was bawling and couldn't leave Kaia. I eventually told myself I was just being paranoid and left. 3 hours later, kaia crashed due to an arrest and had to be resuscitated. The second time they took her off the tube, I knew it wasn't the right time because something else was going on with her that nobody was paying attention to. Eric and I saw it, and we spoke up, but nobody listened. The tube came out and went back in a half hour later. We almost lost her again. The tube was supposed to come out over the weekend, but we said no. It was pushed to today and today she has had fits of heavy breathing of 80-120 breaths a minute for hours and hours. FINALLY, someone else was in here too to see it. We had been seeing this for over a week and nobody listened. Today, they listened. They now see that she does have a third (and hopefully final) issue going on with her that needs discovered before she can progress to getting out of here. Her heart looks fine at this point. That leaking of the chyle fluid from her thorasic duct has lessened (which made them want to take her off the tube again because that fluid was "the issue last extubation"). But there is a third thing now. I won't go into what that might be because there are so many options they gave us. But, we will find out. I know it.

Let me back up on this chyle fluid. I mentioned in my last post that there is a duct that they said they can nick during surgery and it will leak fluid. Apparently, this has happened to Kaia. It is not super common, but it isn't super unusual either. Last time they took the tube out of her throat, she grunted the whole time and had a really hard time breathing on her own. They re-intubated her and then x-rayed her and found the chyle fluid all around her lungs. Now, she gets x-rays every day. She always has had fluid, but they drained 80 mls out at that point and the tube is still draining (now at a slower pace), for a total of over 250 MLs so far. I can't go into the chyle issue too much, as I haven't had much time to research it. But, the thorasic duct can be damaged in surgery. In infants, it's so small that you can't even tell where it is, thus it being easy to damage during surgery. It can be damaged due to moving tissue around during surgery or nicking it with a surgical tool or even just the trauma from surgery itself. Once damaged, it cannot heal unless you remove all fats from the diet. So, kaia is on a strict diet (no breastmilk for now) of no undigested fats. all the fats in her formula are pre-digested. Don't ask me how...i really don't want to know. But, it's really slowed the leak. The hope is that the leak will heal on its own. Most of the time, it does. Some of the time, this diet has to be followed forever and can be fatal. Let's hope that she (for once) falls in the "most of the time" category.

That's all I have for today. We are scheduled round the clock, day in and day out (an nights too) for procedures, tests, doctors talks, x-rays, etc daily. I'm really sorry for all I haven't gotten back to. We barely find time to eat with all that we have going on with her on a day to day basis. We rarely shower, which is sick, but it takes a back seat to kaia's needs. I really hope and pray it slows down. We usually get to sleep from midnight until 4am, when her day starts with the daily x-ray and then her normal tests and procedures that she gets each morning. I'd say we average 4 hours of sleep per night. The rest of the day is spent pumping, trying to find time to eat, talking to docs and updating this blog. Day in and day out...that is literally all we do. I can't believe June is almost over and we still haven't done a single thing outside. I miss everyone and everything! I miss our home. I miss the lake. I miss our friends. I miss cooking (and eating healthy food!). I miss my cats (sometimes). But, most of all, I miss holding our daughter and hope that one day, we can get her to see the outside world.


  1. Thanks for the update Steph. Horible that you have to be surrounded by all that tragedy on a daily basis, but glad that things are progressing along, in a way, with Kaia. She's a fighter.

  2. Oh, sweets, I have no words to say right now. Just sending love. I wonder if the souls of those other babes are looking over Kaia now? Like little angels.

  3. prayrs and positive imigaing to your family.

  4. I've just found you - through someone on the heart board at babycenter. It's been 10 weeks since our baby Eve had her surgery...reading your posts brings me right back there. Know this. There are many of us who feel every bit of your pain and want to help you bear it. My prayers - as a mother - are with you and Kaia. She is beautiful. The only thing we could do for Eve is be positive around her. Always. I took my breakdowns elsewhere. Babies are so intuitive - they FEEL everything about you. Like you, I never left the room, because when I did something bad would happen. Fast forward: Eve is 6 months old. Thriving. Smiling. Her doctors classified her defects as exceedingly rare. We flew from MN to Boston for her surgeries because of that. She showed them all. Kaia will too. Believe in her...we do. Annamarie + Paul + 3

  5. Just wanted to drop another note and say I am continuing to pray for Kaia. She is so lucky to have such amazing parents. You should be proud of her for being such a trooper and of yourselves for being the amazing parents you are.
    Peace and Love.

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