Sunday, February 28, 2010

Good days and bad days

So sorry for not posting an update yesterday - Bodie didn't have that great a day yesterday and I was just too emotionally spent to update by the time I got home. Today, thankfully, was a much better day!

Yesterday started out well, with the doctors telling us during morning rounds that the plan was to extubate him later in the day. I was really excited! But, apparently, Bodie had other plans, the little stinker (these heart kids really do teach us patience). He didn't respond well to the vent weaning and his sats kept dropping, so they were trying different things, theorizing that perhaps he just was retaining too much fluid for his lungs to expand properly. He spent most of the day sleeping while they worked on getting the fluid off. Then, when Dusk got there in the afternoon, Bodie woke up but was extremely agitated and was awake enough for us to see him cry. But, since he is on the vent (which goes through his vocal cord), he wasn't making any noise. It was really heart-wrenching to see.

Then, right before we left, his heart started going into weird rythyms. In utero and before the surgery, Bodie always had a low heart rate - 100-115 or so (he comes by this genetically, as both Dusk and his father Alan have really really low resting heart rates). Post-surgery, he had been 155-160 (they didn't know why as they didn't expect the surgery to correct that problem) and then yesterday morning, he dropped back down to 110-120. They hadn't been able to explain it - but then yesterday afternoon, his rate jumped back up to 155-160 and again, they couldn't explain it. When we left, the doctor was in there and they were trying to figure out what was going on. A couple hours later, we finally got an answer - his 110-120 rate is his sinus rythym and that's driven by the atrium (the top of his heart) where he should be. But, apparently, the bottom of his heart is also trying to drive the rythym (getting the higher rythym) (our nurse says it's like a power struggle over who's in control). Although he seems to handle the alternate rythym ok (his pressures and other vitals stay stable), they don't want him in the other, funky rythym as it's just too hard on his heart. They're hopeful that either his heart is just irritable (very likely given that he had open heart surgery just a few days ago) or he was dehydrated due to them pulling too much of his fluids off. The good news is that they gave him more fluids and he has been in his sinus rythym pretty much since then (a few episodes of the funky rythym, but generally better)! Also good news as that hopefully means he won't need a pacemaker in addition to everything else going on!

Another kind of troubling thing is that his saturation levels are low (generally low 70's, sometimes dipping into the high 60's) (they like hypoplastic babies to have sats between 75 and 85). They have some theories on why his sats are low, but he doesn't seem to fall into any of them - so, it may just be his normal. Right now, they're watching to see what happens with them. The thing that's kind of tough is that he needs his sats to stay relatively stable to come off the vent (rather than de-satting everytime they try to wean him down a bit). So, we're hoping they level off.

So, that's all to say that yesterday and last night didn't go so great. It was so frustrating for me since all I want is for him to go off the vent so that I can hold him. You shouldn't have to go through so many hurdles just to hold your newborn child. :-( I would say I hit an emotional wall this morning and pretty much cried the whole way to the hospital...

But today was totally different! Thank God we had our wonderful nurse Amy again today. When we got to the hospital, I got two words out about how badly I wanted to hold him before I started crying again and she handed me the kleenex and told me I could take the side of the incubator down and just sit next to him and put my arms around him. It was amazing. I was pretty much eye level with him, and he was awake and alert (and not agitated, thank goodness), so I laid my head next to his and just talked to him for like an hour until he fell back asleep. It was exactly what I needed - to be able to connect with him like that. He was just looking at me, holding my finger, and seemed so content. The other good news is that they took out his chest tubes (I was glad about that because I know he can't have been comfortable with those in)!

So, today was definitely better. He has been weaned down on most of his meds ok, but we're still waiting on weaning him off the vent. That is our next big step, and we don't know when the eta is on that - it all depends on what his little body can handle. So please pray that his body can handle it and he can go off the vent SOON!!! Thank you so much for your continued support and prayers!


  1. I'm in tears for you. I can't imagine the emotional hurdles you're jumping. Hormones are bad enough after having a baby! I'll be praying you get to hold him soon. Erin

  2. oh, amy - i was tearing up just reading about your sitting with him and talking to him. i'm so happy you were able to bond with him today! you are always in our thoughts and i know you are all the fighters that you need to be to get through this - including that baby bodie of yours! keep up your strength - you are all doing amazingly well!

  3. You are such an amazing woman - love and prayers for each of you. Hugs! Karen

  4. My heart breaks for you. I can't imagine to be in your place. These gifts that God blesses us with in our children are so precious. That mothering instinct we have is a force that blows even the smartest minds. I pray that God will sustain you and that God will lay a healing hand on Bodie's chest. I pray that you and Dusk will grow stronger as a unit. I pray that Sierra will be understanding with your emotional state. I pray that you keep your eyes on Christ. I pray that your little family will grow stronger in the light of struggle and that you can see the blessings God bestows on you every hour of every day. God will provide. I love you all!

  5. Dearest Amy. We love you so much and are praying continually for Bodie and your family. We pray for increased strength each day for Bodie and that you will be able to hold your strong little boy soon. We pray that God holds you close in His arms to comfort you while He tends to Bodie. We love you. Love, Bonnie & the Kerrs

  6. We know the ups and downs can be tough -- but he's made it through a lot already... so for now maybe try to focus on what he's already made it through and not what he hasn't. I know it's tough though and we are here if you need anything. I hope to bring a meal over to your house or even up to the hospital for you tomorrow - whatever is best for you. We continue to pray for Bodie, you and your family, and know that all of you will come out stronger than you ever thought you could be. You never know how strong you are until being strong is the only choice you have. Call if you need to talk... lots of love and prayers, Sara Hale

  7. I am praying hard that you will get to hold him soon. And that he continues to be the fighter that he is...

    Amy you are amazing and so strong, we are all behind you holding you up!

  8. Sweet Bodie is definitely taking his own time on everything, but he knows his body best. I hope it is his natural way of just knowing when the right time is. Isn't great when you have the nurse you love on staff? It is like they connect with you and know exactly what you need. I am glad Amy was there and was able to help you connect with Bodie. Connection is so hard when there is limited contact. But obviously having you near him calms him incredibly and is its own medicine. I am glad you can be there for him.

    LJ was much more comfortable after the chest tubes came out. The Dr's told me that they are the most uncomfortable part of the whole ordeal. So I bet he is feeling a lot of relief from that. It is also ones less thing in your way when you finally get to hold him. I can't wait to see new pictures of Bodie :)

    I am praying for his healing and hopefully it comes soon so that you can just hug him to pieces.