Annabelle is my little rockstar with her new heart!!! She continues to do very well with only some minor expected hic-cups.
She is hooked up to the pacemaker to keep her new heart beating at a good rate. While this isn’t GREAT that she needs it, it isn’t abnormal at all. They had turned it off early this morning, but her heart rate kept dropping so they had to turn it back on. When they take out the old heart, they have to cut the nerves to the heart, so when the new heart is put in, the nerves aren’t connected in, so it takes a little bit for it to learn how to do it’s job in it’s new surroundings!
She had also had some minor episodes of blood pressure and Oxygen saturation drops, and was given blood to help with that.
A GOOD sign was that when we got to see her last night (around 3:30 a.m.) she was peeing all by herself! Previously she was on 3 high doses of diaretics to keep her kidneys working. As of 3:30, she was on NONE! Which is AMAZING! We have added her Lasix’ late morning (her primary diaretic) because she was a little puffy, but that is very normal and she was still going byherself… but since they’d given her so much blood and fluid, her kidneys just needed an extra boost.
Her liver, which was very hard and very distended (a huge sign of her heart failure), is now going back down and softening.
Her biggest issue right now is sedation. We came back to see her and she was on NO, I repeat, NO pain drips. They were giving her pain meds as needed only. Mommy was NOT thrilled at this because Annabelle was thrashing around in her bed and wasn’t very thrilled with it either. Shortly after they started her on a Versed Drip (continuing her other pain med PRN — means as needed) but this still didn’t help her and we were having to give her a PRN every 15 – 30 minutes, and she would flail her arms and legs and scrunch up her face in… not sure if it was pain or aggitation or what. She was also trying to pull her breathing tube out too, probably the biggest source of her irritation.
The REASON they were keeping her pain meds so low is that the intent was to extubate her from the ventilator today. Which, while it would have been great, scared Momma a little.
They decided, with Momma’s complete blessing, that Sunday should be used as a “day of rest” so we would be Biblical and let Annabelle rest the day after transplant! So, as long as she still has a stellar night with good blood gasses and no pressure issues, intent is to take the breathing tube out tomorrow. A TON of prayers for this, as if you know anything about Annabelle’s history, she’s had a TOUGH time extubating every single time.
Granted, she has a WHOLE heart now, not half of a one, so that should help, but she also has bronchial malacia (floppy bronchial tubes on her left side) so that doesn’t help the extubation cause.
But anyway, we now have 2 pain drips, and while she still gets aggitated easily, it is nothing like earlier today.
Scott and I? We’re tired. Very tired. We’d gone to bed about mid-night on Friday night, and got the call at 3:30 a.m. Then we weren’t able to SEE her until 3:30 last night… So didn’t get much sleep at all last night either. I took a little nap this morning, and Scott was able to sleep in some in the sleep room and is taking a nap now while I type.
Memories are so vivid right now. All the smells from her previous surgeries are back, and looking at my little love hooked up to all the tubes and wires absolutely breaks my heart.
I think yesterday I was just so very PUMPED with energy from it FINALLY being heart day, that today I’m facing the reality of recovery and while I’m so thankful and excited that she is doing so well, it is just all emotional and trying. I’ve had a horrible headache all morning and felt sick to my stomach (no virus… it happens with bad headaches) but it’s a little better now.
Part of me too is trying not to worry. Everyone SAYS everything is going so VERY well, but given Annabelle’s history of throwing curve balls when things seemed to be going exceptionally well, it just makes me cautiously optimistic. Every ding I want to jump up and check to make sure she isn’t failing. I listen with eager ears to every conversation and every number a doctor or nurse says.
One thing that is VERY VERY different from her previous surgeries is that I understand a lot more. With her Norwood, I was clueless. Her monitors and IV drips were big blurs of unidentifiable numbers. With her almost-Glenn-turned-newshunt/failed valve repair in October, I knew enough to be dangerous and know when something might not be right.
But this time, while I’m not an expert, I can nod my head like I know what they are saying and I’m not completely lying! Numbers make a little more sense, and I know enough to know when to be concerned. Although her numbers are different now… because she has a WHOLE heart. (I can’t stop saying that… WHOLE heart… Not half of one… AHHH!)
The Other Baby
It may sound a little crass, but I didn’t think about the other baby a lot yesterday. I literally couldn’t go there without being overwhelmed. It was Annabelle’s heartday, and I was determined to focus on her that day. I put my emotional Mom heart on with Annabelle, but put my pretend Doctor hat on when talking about and asking questions about the donor heart. I guess it was my coping mechanism, as aweful as that sounds.
But SO SO many of you sent messages telling how you were praying for the donor family and thinking of them and crying for them, and I can’t tell you how much that meant to me. Something I was NOT able to do yesterday for fear of losing my sanity, you all stepped in the gap and did for me. This week (and probably every day for the next… oh… rest of my life) I will be spending a lot of time in prayer and mourning for them, even as I celebrate Annabelle’s new chance at life.
I have a ton of folks to thank. The list is too long to catch everyone, but I’ll do a little bit.
THANK YOU, obviously, to the donor family who gave the ultimate gift of life to my daughter.
THANK YOU, to the surgeon and his team, for your amazing work and dedication to my daughter.
THANK YOU to all the doctors and nurses who are caring for her postop and taking such care to make sure she has the best chance possible with her new heart.
THANK YOU to all my family for sitting with us yesterday. You made me laugh and smile even through the painful time, something you knew I really needed. (Even you Kari, for breaking the rules and playing with the operating waiting room intercom!) Euker during a surgery wait is MUCH needed as well!
THANK YOU to my sweet, wonderful, Mother-in-law for taking charge of my kids and for being with us every step of the way in this journey. You are truly a blessing! (and to my father-in-law, for letting us borrow his wife this long!)
THANK YOU for everyone for all the blog comments, emails, twitter mentions, and facebook messages. You have NO NO clue how much I NEEDED and cherished every one of them. To know just how many people were presenting my Annabelle, as well as the donor family, to God’s throne was so completely amazing to me. On top of that, every time I checked my phone I pleasured in reading them all, and it made the time go by MUCH faster and got my mind off everything.
THANK YOU Kristi for coming and visiting with us last night as well!
THANK YOU Pastor Derek for coming and praying with us and Annabelle yesterday morning!
THANK YOU Melissa for taking care of our “needs” without us even having to ask. You are a true example of being a humble servant of Jesus Christ. We WILL write that book(s) together!
And most importantly, thank you our Lord God in Heaven, for taking such sweet and gentle care of our Annabelle, for knowing the perfect timing and for supplying what we needed most at the exact moment we needed it.
We’ve reached our destination, but now it’s time for a new journey to recovery. A whole new set of curves and bumps, but God is in the process of renewing, and God is SO very good and amazing. We trust Him to direct our steps and give us strength and wisdom for the days a head. There are a lot of decisions to make and things to figure out, but God knows all this too.
Annabelle with her Dolly just a minute ago!
Annabelle’s new pink fingers (not good lighting… but they really are pink!)
Her previous blue fingers!
Getting wheeled into surgery!
Post surgery at 3:30 a.m. It was SO SO SO hard seeing her like this. But she’s doing so well, and we hope to start losing some of the tubes and wires starting tomorrow!
(Note, I’ve been working on this post a little bit at a time all day… so if I said things five times or didn’t make any sense… well, it’s been a long few days, so forgive me this once!)