Primary Children's Medical Center 8-19-11

My first thought today is how frustrated I am with IV's! I'm getting sick of them, they're awful torture on a newborn baby. Our sweet baby doll has almost ran out of good veins, literally. Every time an IV goes bad and they have to do a new one I want to cry. I hold her hand and her binki in her mouth the whole time while I try to stay strong for her and whisper in her ear how much I love her and how sorry I am. She has had one IV in her head, once in each hand, one inside her right elbow, 2 inside her left elbow, once in her left foot and 2 in her right foot. They try for a vein in her hand every time, I have to tell them to stop because I've watched the previous IV team fail, there's not one in her hands big enough any more. I'm tired of watching them poke an IV needle into her and then realize they missed or the vein is too small after all, then they pull it out of her and try again elsewhere, making her cry yet again. It's been tough. They've pricked her heels for blood over 8 times per foot, her heels are covered in scabs :o(. They don't have diapers that fit her either, it's Preemie or Size 1 around here, the Preemies were OK the first day we were here but as of Wednesday she has officially outgrown them. The Size 1's are too big and they have been rubbing on her belly button making it irritated and bleed, I'm afraid it's going to get infected or that the umbilical will get ripped out instead of falling out on it's own :o(. I had to have Daddy bring all the newborn diapers we had at home down with him when he came back last night.

One of my brothers stopped by to visit yesterday on his way home. It was nice to see him. Between 7:00pm and 8:00pm they kick all parents out of the PICU for shift change and I think they make rounds as well, but mostly I think it's to force us to leave our kids rooms for a minute to gain better perspective and move around a bit. My brother showed up right about 7:00pm, Daddy was still not back yet from being home for a little bit so I was worried about spending that hour alone knowing nobody was with my baby girl. It was great that he showed up at that time, he and I walked downstairs and outside where we sat on the benches away from the smell and the suffocating feeling and we just talked, about Miss K, about family, about nonsense stuff. It was good to get out and be away with someone to talk to. I'm so grateful he cares enough to take the time to stop and visit. I feel bad because when we did get to come into Miss K's "room" he was exposed to what our days are really like instead of a calm moment where he could just hold her and get to know her for a minute or two. He came in with me just in time to hear she needed a new IV and the IV team was called. It was also time to feed her so I shoved him over to the bassinet with her binky and told him to console her and hold her hand while the nurse took her vitals so I could pump, I think he was kind of freaked out about it all and didn't know quite what to do. The nurse finished her exam and then I had him hold her while we waited for the IV team to show up. It's so awkward to hold her with all the cords, I think he was a little uncomfortable about it all. Then the IV team came and my poor little brother sat in the chair and tried not to watch as they tried for vein after vein before finding an OK one to use. I could tell he didn't like it, I almost thought he might pass out, cry, or leave the room, it's really not a pretty thing to watch. Then he had to endure the embarrassing part of brother being in the room with his sister nursing her baby for 20 minutes, lol, both my brothers have a problem with this even though I'm fully covered, they just have that modest shy personality where just knowing what's going on behind the nursing cover is enough to make them uncomfortable ;o). He got to hold her for a few more minutes after she was fed and then he left to finish his trip home.

Miss K had a pretty OK night. She spent the whole night going in and out of SVT but she's not doing the whole in one minute out the next thing so much any more. She'll go into SVT but only for a second then come out of it completely for a little while or she'll go into it and bounce back and forth for about 5-10 minutes before coming out of it completely. It's good to see some progress. We've noticed that the SVT doesn't come when she's calm and still but when she's disturbed for whatever reason it tends to come back, mostly when she's being poked and prodded, or when she's crying and the biggest thing that's bringing her into SVT is breastfeeding. Everything is pretty much normal newborn activity that's putting her into it. We've questioned putting her on a bottle to see if that makes a difference in her feeding but we really don't think it will, breastfeeding or a bottle would be the same in my opinion, I doubt it's the position or anything like that, I'm pretty sure it's the beginning of eating when every baby sort of holds their breath for a second as they get started. But I am not opposed to trying it, as long as my baby is getting my milk I don't care how she's getting it. I don't know for sure what we'll do but we may try introducing a bottle today??

The Cardiology team came in this morning and spoke to us, they're impressed with her progress on this drug. It's taken a little longer than they hoped, and a higher dose than they hoped but they said it's definitely working and it's the correct drug to have her on, now we're down to working out what dose she needs to stay out of SVT completely, once they get that figured out with the IV drip they'll wean her onto the correct dose of oral and she will be able to leave PICU to a normal room and stay for observation for about 48 hours before they release her to go home.

So it sounds like we're on the home stretch, FINALLY!

Side note: Miss K started a bad trend. Wednesday night her Cardiologist came in to talk a minute and told us another one week old baby had just been admitted with SVT, then he came by at 6:00am and told us 2 more one week old's had been admitted through the night. So now with Miss K they have 4 one week old SVT patients. Apparently one of them isn't doing so great, unlike Miss K, they've been forced to switch him from medication to medication in a hurry because he's not handling being in SVT well at all. The Dr. said he's got Miss K beat in the race to see who can go through the most medications the fastest. Definitely one blessing I can count in this horrible situation! I'm so grateful, and can't thank Heavenly Father enough for making this so much easier on our little girl than it could be. She's handled it well and they've been able to take it slow figuring out what's best for her, which is much better on her body and her heart. I've been praying for the other 3 babies, hoping they make it through this and that their parents are OK through it all. It's not fun and I think it's horrible that anyone has to go through it.

More updates to come as we progress through this...

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