Thursday, October 9, 2014

princess everly has a rough start

Sometime early afternoon on the day Everly was born, the nurse got a call that her initial blood work had indicated that she has a different blood type than I do, and that there may have been some crossing of my blood to her.  But no one seemed too concerned and we went on with our day of bonding with her, and talking to friends and family about our new arrival.  Then, in the late afternoon, her blood test revealed that her bilirubin level was higher than they would like, and so they brought in an infant bed with bili-lights to start her on phototherapy to help with her jaundice.  It was very strange to have her in the room with me, but not be able to hold her, except when the nurses would come in and tell me I could feed her.   
Bart's parents brought the boys to the hospital again that evening, and they were so disappointed that they weren't allowed to hold her again.  I was so glad that they had been able to hold her that morning at least.  Just before they left, I felt prompted to ask Bart and his dad to give Everly a priesthood blessing before they left.  I wasn't sure why, since I wasn't too worried about her, but later I was so glad that they did.  
Around 9:30 that evening, we got a call from the on-call pediatrician, letting us know that Everly's most recent blood work showed that her bilirubin had reached a dangerously high level and that the neonatologist was going to be admitting her to the NICU.  I was shocked!  Up to that point, no one had even mentioned the NICU, and none of us had any idea that her condition was any where near serious enough to be admitted to the NICU.  Within a few minutes, the neonatologist and a team of nurses came to our room, explained that she had ABO incompatibility, hemolytic disease of a newborn, and hyperbilirubinemia, told us they would let us know when she was settled enough that we could come and see her, and then they took my baby away.  I simply laid there crying, too in shock and denial to fully grasp what was happening.  When I had been pregnant with my twins, we mentally prepared for months for them to require a stay in the NICU, which they, thankfully, didn't end up requiring.  But, Everly was my smoothest pregnancy, the one I carried the longest (she was only 5 days early), and the labor and delivery could not have been smoother.  How was it possible that she was now in the NICU?  
The hours we waited for the call to let us know that we could go see our baby, who at this point was just under 24 hours old, went by agonizingly slowly.  Then, sometime around midnight, a nurse came to take us to see her. I was so excited to go see her.  I couldn't believe how much I missed this person I had met less than a day ago, and who I had only been apart from for a few hours.  But, I was not prepared to walk into the NICU and see my baby like that.
It's difficult to see your tiny baby lying there hooked up to so many monitors and machines, an IV in her tiny hand, her eyes covered by a mask, the bright blue glow that surrounded her from all the bili lights, and simply the reality that she was in the NICU! The doctor explained that they were going to draw blood every few hours to test where her bilirubin level was (among other things), and that they would let me know every 2-3 hours when she needed to eat so I could come and nurse her.  
The next few days were rough.  I was only able to hold Everly every few hours when I nursed her, and it was strange to nurse her while she was strapped to all the monitors, and it was awful to be told by a nurse when my 20 or 30 minutes was up and they had to take her away to put her under the phototherapy lights again.  Our days were spent waiting until her next lab results were ready, only to be frustrated when her numbers would go down a bit, and then back up again a few hours later.  Wednesday morning was scary when they realized that her bilirubin levels had shot up to a very dangerous level.  They added some more bili lights, for a total of four.  I think the seriousness of her condition hit me when I realized that each time a new NICU nurse came to work, they were blown away by the number of lights she was under.  If the NICU nurses have never seen that many bili lights being used at once, it must be serious.
At that point, the doctors decided that even allowing Everly to come out from under her lights for 20 minutes at a time, every 2-3 hours was harming her, so they no longer allowed me to nurse her. The next 2 1/2 days were horrible, as I couldn't hold my new baby at all.  I could visit her all I wanted, and change her diaper.  Bart was able to feed her a bottle, but I wasn't tall enough to reach up and through all the equipment to feed her.  We didn't get to see much of her face at that time either, since she was wearing her eye protection mask all the time.  Visiting her brought so many different emotions.  It was strange not being able to hold my own baby, and agonizing.  On one hand, being close to her was exactly where I wanted to be, yet at the same time, it made me feel so helpless.  It was hard to even look at her with all the lights shining on her (in fact, after a few days, the nurses went and bought some special sunglasses so they could take care of her without hurting their own eyes).  Plus, in some ways, it was hard to just be in the NICU at all, surrounded by beeps and alarms, and trying to deal with such tender and personal emotions, surrounded by nurses and doctors coming and going, and talking about their weekend plans so nonchalantly.  So, sometimes, I would write in my journal and just be near Everly, and other times, I just needed to not be in there.  
So, I spent my time getting visits from this cute little guy 1-2 times each day,

trying to rest and recover from having a baby.  Sidenote:  there are several hotel rooms on the top floor of the hospital, so I stayed there once I was discharged, and it made it super convenient to be close to Everly, especially during the days and nights when I was nursing her.
Thank goodness for facetime so I could see and talk to Krewbie.  Not being able to be a mom to my other three kids was almost just as hard as having my newborn in the NICU.
Facetime always turns into "funny face time."
And in the evenings, the family would play games and eat brownies in my "hotel" room.  I tried not to be offended when the twins didn't want to come see me, because they weren't allowed to go in the NICU to see their baby sister, and apparently I alone wasn't worth the visit :)
The scariest point in all of this was Wednesday evening.  Her bilirubin levels were continuing to climb, even after such aggressive phototherapy, not even taking her away from her lights to eat, and the first dose of IVIG.  The doctors decided to do a second dose of IVIG since it showed signs of helping the first time.  A few hours after they administered the second dose, her bilirubin was still rising, and they were prepping to put in a central line though her umbilical cord, so that they could do an exchange transfusion, which is where they would remove all her blood, as they were replacing it with new blood.  They gave her one more hour for her levels to go down, and if they didn't they were going to proceed with the transfusion.  Luckily, after that hour, her bilirubin was down a little bit, but enough for the doctors to hold off on the central line.  That night, and all day Thursday and Friday, her levels would go down a little bit and we would get our hopes up, and then they would go up a bit and we would feel so frustrated.  But, luckily, they never reached that scary, dangerous level again.
Friday night, a little before midnight, her bilirubin was low enough that they decided that she could be away from her lights every few hours for 20 minutes at a time, just long enough for me to nurse her.  So, after not being able to look into her eyes for nearly 3 days, I got to see this adorable face:
And, after not being able to hold her for more than half of her life, I finally got to do this:
There are no words to describe the joy I felt when I finally got to hold her again.

Over the next couple of days, she started to slowly show signs of improvement, and they slowly took away her bili lights one by one.
And what do you do when you finally see your newborn without lots of glowing blue lights on all the time?  Take pictures!

These pictures are from Monday, when she was one week old.  I swear she doesn't look like a week old baby here.  All that dark hair, and the smile smirk.  It was awesome seeing her so alert, because the elevated bilirubin made her very sleepy (even more than a normal newborn).  They finally took her off her IV fluids at this point and by late morning, they had removed all the bili lights!  The very best part of that, was the fact that I could now hold her as much as I wanted!  And so I spent much of Monday holding her, just because I could!

Late Monday night, they put her in clothes (for the first time in over a week), swaddled her up, gave her this adorable strawberry hat, and put her in a regular newborn hospital bed.  Then, she and I got to spend the night together in a room in the back of the NICU just the two of us!  It was heaven.

See her cute dimples?  She was so happy to be in cute pink clothes, away from all the beeps and alarming machines, and hopeful that her bilirubin would stay low enough that she could go home the next morning.
And she did.

1 comment:

Rachel Murray said...

There is no worse feeling as a mother than to not be able to hold your newborn. What a scary week! I hope she is doing well now.