Now, for a much overdue update. And because there is a lot to cover, I’m going to split this post into three sections. Weight gain, lungs and heart. Here goes nothing... Weight Gain: We will start out with Jules’ weight. Right now she is averaging 15 grams a day in weight gain. The doctors would prefer 20 grams a day and would love 30 grams a day, but even so, Jules is up to an amazing 11 lbs (can’t believe she was once 3.6 lbs…) The process of getting Jules to gain weight is one of the most complicated things we are facing right now. This is because she continues to emesis (vomit) her feeds... When we first arrived home, we thought we figured it out. Her formula was being mixed 1:1 with breast milk and we thought that was too much. So, we took her off of formula for three days and she stopped having episodes. (We weren’t sure how the doctors would respond to our impromptu formula halting, but they were very supportive and worked with us to figure out a better mixing solution.) So, for a while, Jules was processing her feeds great. No emesis, maybe an occasional spit up, but nothing a normal baby wouldn’t have. Then she started having emesis again. So, for the past couple of weeks we have been trying to adjust (with the doctors help) the rate of her feeds, the volume of her feeds, the kind of formula or the amount of formula. Trying to find a combination that will agree with her. We get close, but then she starts having episodes again… So, still trying to figure her feeds out. But again, great news that she hit the 11lb mark despite the emesis! Lungs: Now to the lungs. Jules has always had some fluid in her lungs, but today during her appointment in Seattle, the doctors noticed her right lung has become more cloudy in her x-ray. We aren’t sure what is causing it, but it could be from aspiration. Maybe from one of her emisis? Nobody knows. But, she is still breathing on her own. No oxygen is needed, so she is still rocking it! Heart: The next big step will be the “Cath Lab” this coming Friday. This is where they will measure the pressures in Jules’ heart and determine when she needs her next surgery. (the “Glenn”) Her saturation levels have been pretty consistently in the low 70s (target range for her is 75 - 85), so I’m guessing the next surgery will be within a months time. There is also the possibility that that could stretch out the PA band in Cath Lab to allow more blood flow to her lungs, which would buy her some more time before the next surgery. So, thats Jules in a nutshell... As far as the rest of the family, we’re doing okay. Or maybe I should say, tired, but good. It has been an adjustment being back home. And for the most part it has been good, but it is also taking up a lot of “mental energy” I’m a big fan or routines. They allow you to automate the mundane so you can focus on more important things. But now, it seems like there are a lot of small things that escaped while we were in Seattle and now are requiring as much focus as the large things. (p.s. I changed my number 4 months ago and forgot to tell anyone... So if you want my new number, please message me. :) p.s.s. This is Jason) So, corralling the small things into muscle memory and routines again is tiring, but we are making progress and will have the rebellion under control soon. And fighting this rebellion is a small price to pay to being home. It feels so amazing to be able to pick Jules up and go somewhere as a family. (or just hang out in our living room as a family) We can also be with extended family (Amanda’s sister and brother-in-law came to visit us. It was awesome! More in the next most. With pictures. And Amanda’s parents just arrived today) So, it’s true, there is no place like home even though we are tired. Prayer requests: Bennet and I are sick. I am actually up at my parents house writing this because I don’t want to get Jules sick. If she gets sick, they will have to postpone her Cath Lab 4 - 6 weeks. (and plus we just don’t want her to get sick. She would take it harder than the rest of us.) So, pray that Bennet and I will get well soon and Jules and Amanda won’t get sick. Also pray for Amanda as she is now on solo duty for Jules’ meds, sats, weights, feeds, etc. It is tiring with two people tag teaming it, especially changing out feeds every few hours at night, so she is going to need the extra strength. And one of the biggest things we would like prayer for is Jules’ emesis. We can’t allow her to aspirate any of it, her lungs are too fragile. So we have to be on alert 24/7 which is tough And now, I want to try something new. I would like to put up a couple other prayer requests that aren’t ours. Our church often says, “we are blessed to be a blessing.” And as we have reflected over this the past 5 + months and we can’t think of anyone who have been blessed more than us. We are in awe of all your prayers and financial giving and words of encouragement. We are blown away… So, here are a couple bonus prayer requests we would appreciate your prayers for. --Our friends Rob and Laurie just had a baby with severe heart conditions. I will keep it fairly vague right now because I haven’t asked if I can share (I’m pretty sure it’s okay…) But please pray for them and their baby as they start their own journey. --We have family members that do a lot of work in Sierra Leone. And right now there are unprecedented outbreaks of Ebola. I’m too tired to give this the attention it needs right now (it’s really bad), but I’ll write more later along with a way you can help. Thats it for now...If you made it through this whole post, congratulations! I won’t let it stack up so much next time :)
Posted on: Sat, 30 Aug 2014 06:58:40 +0000
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