Mid-Week Update

Mid-Week Update

Hi everyone, this week we thought we would try a mid-week update.  In the first few weeks, we were just summarizing the good things that had happened in the previous week.  This is partially because we actually have the time to write the blog on Sunday nights, and partially because the main physician changes every Monday morning (so it's a natural "break point").  In this entry, we're gonna share what it's like to be a NICU parent and give some examples of decisions that have to be made...  This week's blog isn't all sunshine and daises, but if you're willing to accept that, please read on...

Every day in the NICU starts more or less the same.  You wake up thankful that you didn't get a call last night.  We’ve gotten a call once (2:30 AM) and it isn’t the way you want to wake up.  No call means nothing really bad happened.  You may not have slept a restful sleep, but you remind yourself some sleep is better than no sleep.  You also remind yourself that your kid isn’t really sleeping any better, so what do you really have to complain about?  You think about everything that has happened thus far, and you think about the things that haven't happened.  Then you think about your spouse.  You wonder which of you is going to be strong one that day and which of you is going to need the strength of the other.  Then you get out of bed.

Once out of bed you find that getting going with your morning ritual takes a bit more willpower than it did before. But that's ok because once you get going, your mind is taken away from some bad places that idol minds often go to.

Once you get to the newborn ICU (NICU), you have to sign in.  Sometimes this is quick, sometimes it is not.  Once past security, you have to put anything you bring with you into a plastic garbage bag.  On the surface, this is to prevent microorganisms that may be on your purse, tote bag, etc from winding up in the room.  Of course, the hospital uses regular commercial garbage bags that were made in regular production lines that were anything but bacteria free.  It's really just your first clue that everything past the security doors is 100% beyond your control and often makes no sense.

Once you get in the room, the first thing you wanna do is go to your baby's crib, but you can't just do that.  First you have to scrub from your elbows to your finger tips (all jewelry is strictly forbidden).  After you scrub, you have to apply one of those anti-bacterial alcohols to your hands.  Since the soap was also anti-bacterial and leaves a film that lasts for hours, I have to confess I do not understand this anymore than the garbage bag, but whatever.

Finally you are ready to see your kid.  If your kid is one of the 3/4 of the NICU kids that need help breathing, then you start off by checking the blood gases to see how well the lungs are doing.  Usually a nurse or respiratory therapist sees you and comes right over to update you on things that have happened since you left. This is crucial.  The vast majority of these people are amazing.  In our experience, they look after Alexandra as if they were related.  We believe this not just because they say it, but you can see them get upset if they disagree with someone's plan or if Alexandra didn't quite do as well at something as was anticipated.

Once you get your morning briefing, you text your spouse (it's more quiet than a phone call).  A picture makes the text even better.  Sometimes there is a grandparent there to help watch the baby.  Just sitting at the bedside in a hospital isn't easy to do, so you need a break.  In Suhey's case, she's gotta go down the hall to pump milk every so often.

Some weeks nothing changes, and that is the plan... just give her lungs time to go larger and stronger.  Other weeks, decisions are made about progress (or lack thereof).  Alexandra's case is unique, so it's difficult for anyone to gauge how she is progressing.  Some physicians think she should have more time to grow, while others think she will not be able to outgrow this.  And since she isn't the normal EA|TEF baby, no one can really say who is right and who is wrong.  Should we allow her to keep lingering in the NICU hoping she might “outgrow” the CPAP on her own, or should we do something more aggressive because she may never outgrow it?  To that end, we are being asked about a third surgery.  This surgery permanently changes the shape of the top of her stomach while simultaneously installing a tube that goes from her stomach straight through her skin (bypassing her mouth, throat, and esophagus).  The tube is something you connect her milk and formula to.  The shape change (plication) is meant to decrease the possibility of stomach juices from flowing backwards where they can irritate her esophagus and/or her lungs (this is the key benefit and may help her come off of CPAP).  The plication would also preclude her from burping.  Her stomach gases would need to be vented through the tube.  The tube would be necessary for at least a few months but possibly for years.  The plication (reshaping) is forever, however.

One of the worst things about being a NICU parent is not being able to a "normal parent".  If you want to hold your child, you need the help of a nurse or respiratory therapist.  Alexandra currently has 4 cables and 4 tubes, so you can't just pick her up.  And since each tube and cable isn’t that long, there is a very short distance she can travel.  Fortunately, the hospital has a comfy nursing chair that slides up next to the crib.  Given her current set of problems, normal feeding and burping are out of the question.  She has a tube that starts at her mouth and goes past her stomach, ending in her intestine.  I did see her burp the other day (1st time), and it freaked her out.  If she wasn't so mad at the time, it would have been funny.  We can dress her, but you have to be smart about what you choose.  She needs clothes that either button or snap or zip whenever possible... each has their advantages, but with all those wires, you get a feel for what does or does not work.  Also, you're supposed to take a temperature every time you change her diaper.  For the longest time we had to weigh all diapers, but now we have the luxury of just discarding them.  By the way, while all this is going on, you’re worried about the alarms going off.  Is she desating?  Is she bradycardic?  Tachy?  Is the CPAP  pressure too low?  And then there is the CPAP mask.  It's attached to her face with the help of a ski hat-like device.  Since she's laying down so much, every time she moves her head, the hat moves in relation to her face.  This means the mask moves.  She really hates that, so of course, she moves even more.  Eventually she gives up, but it really sucks for her.

So anyway, if you're still reading this, thanks!  It's a long blog this time, but we hope you can get a little better understanding of what is going on.