I think if I went back and counted, about 75% of my blog posts beginning with some kind of explanation or apology for not updating more frequently. So here's another one...
I know that there are a lot of you who I talk to IRL or know my family and friends that get frequent verbal updates as to how we're doing, but that there are also some of you who keep checking my blog waiting for updates and have no idea how things are going for us- and to you I apologize!
Taylor was released from the hospital way sooner than we had anticipated on Thursday the 29th. The Dr's and nurses were all very pleased with how her body is handling her condition and felt comfortable letting us go home and continuing our waiting game of monitoring her condition as her little body further develops. We feel especially blessed with how well she's doing due to the fact that it is very rare that a baby with Ebstein's be released from the hospital w/o having had open heart surgery!
We're not out of the woods on her not having to have surgery yet though. She has appointments with her cardiologist, Dr. Stephen Pophal, every 2 weeks for at least the next few months. We went to our first appt. last Thursday (the 5th) and he's very pleased with how she's doing still. I walked away still wishing that I had more specifics about what to expect in the future- but I also can accept the fact that there's not really an answer to my questions b/c so much depends on so many other things that none of us can control.
Some of the thing that they're monitoring with her are: her blood oxygen saturation levels (that they're high enough) and then how those change as her heart and lungs develop over the next few months, her weight gain to ensure that her body is taking in enough calories and that he organs are functioning well and getting the blood flow that they need, and then still watching for the development of an arrhythmia. There are plenty of other things too, but those are the biggies.
So how is her condition effecting her and our day to day lives? She came home from the hospital with a Pulse Oximeter monitor that tells us her Blood Oxygen saturation and her heart rate at any given moment. They have the range of levels that they want her to be within programmed into the machine and an obnoxious beeping alarm goes off if she's outside of those ranges. Currently this is the source of many negative feelings within me! See, it isn't a life or death matter if she goes outside of a range- it's just something we needing to be watching for and ensure she's not consistently outside the normal ranges, or being there for more than a couple minutes (which still is not urgent, just a red flag to be looked into more). We she jumps outside of those ranges for a few seconds all of the time! Particularly in the middle of the night when she's sleeping and extra relaxed- which means in the middle of the night I have a loud beeping alarm going off regularly that makes me get up and check on her only to discover that she's fine and her levels have usually already returned to where they should. Luckily she's gone from having to be hooked up to it 24:7 to now just having it on when she's sleeping and we're no right there watching her. In a few months she may not have to have it at all. I'll be doing a happy dance that day!
So back to our day to day. She's only on one medication- Sildenafil, more commonly known as Viagra! I actually knew prior to her needing it, that viagra's original usage was to assist with increased blood flow in babies and then they discovered an interesting side effect in adult males and you all know the rest of the story.. The funny thing though is that she has to take it orally 3x a day, which means a decent sized liquid bottle of it every month. I guess that this is so much more of a prescription sized than it's common usage that pharmacies can't or won't fill it w/o all kinds of special authorization from the Dr. and insurance companies. I guess they don't want some poor guy overdosing!
Because of the need to monitor her calorie & food intake, she has to have all but one or two feedings a day via a bottle so that we know exactly how much she's taking in. No big deal if you just formula feed, but since I like to try to breastfeed for as long as I can keep it up (only 4 months with Hailey and 6 with Katelyn) this means that I have to pump and then feed her. This takes more than twice as long as just nursing! I can nurse her a couple times a day, but she's become a little lazy about it since the bottle is so much easier, so I still end up pumping. The couple pros I've found (in making an intentional effort to find a bright side) is that there so much less discomfort when my milk came in b/c of having to pump so regularly and not waiting on her to be hungry and then I can also hand over a bottle to anyone who wants to feed her.
Other than those things and the fact that we are way bigger germ-a-phobes with her than we were with the other girls, things feel very normal around her. Well, at least what I would expect as normal for having a new baby and 2 other young kids. Which actually means that our house is very chaotic!! But I love it and the girls absolutely lover her. I was hoping the the novelty of having a new baby in the house would have worn off so that I wouldn't have to keep them from constantly touching and kissing her, but I love seeing how much they love her and I'm looking forward to seeing them play together as they get older!
9 years ago
