What I know for sure...
1) This kid is a fighter.
We knew that from the moment we found out I was pregnant. We had battled Infertility, been told we couldn't have a baby, and yet this little one wanted to make her way into the world.
Then we found out about the heart condition. Yet, she continued to thrive inside of me, and has defied many expectations in her one week in the world.
2) She is loved.
In her one week, everyone who has cared for her has fallen in love. She seems to have a spell she casts on people. All it takes is one look into those deep, soulful eyes, and you're under the spell. The nurses are crazy about her. Obviously, so are we. The doctors comment on how good she is. Her reputation precedes her. Everyone who comes to check her out for something has been told how amazing she is.
3) She is beautiful
There is not one thing about her that isn't perfection (other than her heart). I can't believe how perfect she is. She is going to grow into a beautiful, graceful little girl and eventually a wonderful young lady.
4) She is hope.
The name was chosen carefully, but it is personified in her spirit. She is calm and wise. The OB who delivered her even said "She is an old soul". You look in those eyes and you know everything will be fine.
So about her health...
Immediately after birth, she was taken down to the NICU at Beth Israel to be prepared for transport to Children's. Everyone in the room was thrilled with her color. No hint of blue, entirely pink. Things looked good.
Over at Children's, the news continued to be good. They did an echo and there are only two pulmonary collatorals coming off the aorta, which is great. There was a bit of tissue that they were worried could close up so she was put on prostaglandins to keep it open, with the plan that we might try to take her off and see how she did and if she might be able to go home. That plan was followed and she did great.
Sunday night, 48 hours off the prostaglandins, they did another echo and things looked great. They started to talk about moving us to the transitional unit, the cardiac inpatient floor.
By Monday, she had developed a little bit of jaundice, nothing out of the ordinary for a newborn. So she went tanning.
We were still talking about moving her, but the jaundice got worse and she had to go under the full lights. Full on tanning!
Through all this time she was eating well and doing everything she had to do. I was coming in each morning before rush hour to be with her. On Tuesday, they had the big surgical meeting to discuss the current cases, and hers was on the agenda. They agreed to try to push surgery off and send her home for a bit. First she needed to get rid of the jaundice.
By Wednesday, the jaundice was gone and we were graduating! By noon, we had moved out of CICU and into transition. It looked good for coming home over the weekend!
How could you not love her?
Selfie!
The outfit my nurse Jess dressed me up in for my graduation!
Over the last few days, we've been checking things off the list. She did the car seat test, the hearing test, got some shots, etc. All she needed was to kick the jaundice (or at least stabilize) and gain some weight.
Everything was great. We were unattached to any wires or IVs. We went for walks around the floor, and even took a field trip to the cafeteria
Where am I going?
Riding the elevator
Yesterday, she turned one week old
Things continued to be great until yesterday afternoon. They did another echo and noticed the artery starting to narrow just a tiny bit, nothing dangerous . The plan would have to change. Surgery is now a lot closer...probably early this week. This is something we knew would happen eventually, so it wasn't a surprise, but we had gotten our hopes up to go home.
Today has been even worse. When I arrived this morning, the nurse told be she had had a bloody diaper. They ran all kinds of tests and stopped feeding her. The kid likes to eat, so she was not happy. In the week she's been with us, she's never cried for more than 2 minutes. Today she was inconsolable for a good 15-20. The reason for the blood is that she might not be getting enough blood flow to her intestines and may have developed a small infection. Our doctor tells us it is probably minor, but I just wanted everything to keep going perfectly. Our doctor also says this is just another reason to go forward with surgery. As most of this was going on, I was alone since I wanted Chris to go back to Krav Maga. For the first time in this process, I could no longer be strong, and wept in front of the doctors.
So right now, we're in limbo. She is stable and doing well. She's not uncomfortable or really even sick, just hungry. She's slept most of the day. Surgery will be sometime this week.
How am I handling surgery? The prognosis is great, the surgeons are confident, but I'm kind of a wreck, actually. I'm struggling with severe separation anxiety, feeling the postpartum blues, and scared as hell about surgery. I know we have the best doctors in the US, if not the world preparing to operate on her, but my mind, in its fragile state, can't help but go down the wrong path. I can't imagine how I would feel if something happened to her. We are so in love with her. I just want to hold her and never let her go.
On top of it all, I'm not recovering well. Even though I feel great, my BP is sky high and I've been put on meds. No wonder my BP is high. This may be the most stress I've ever been under. I've had several melt downs. Today has been the hardest. Chris encouraged me to get out if the room (we are sharing it and have the hallway side, so no window. I decided to come outside to the Prouty Garden and write this blog while getting some fresh air and sunshine.
Chris, as always, is my rock. Calm under pressure. Matter of fact and reassuring. But I know he's probably a little scared too.
So for now...
Please keep Hope in you thoughts and prayers. This is where we need all those prayers that got us through pregnancy the most. We will continue to update, though they may be brief.
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