Dear Friends and Family, (though I should just say Family because our friends are just like family!)
Here is an update on Julia for her 2-month birthday (which was yesterday when I started writing this email.) Today, she will have been back in the hospital 2 weeks. She has been in the hospital 6 of her 9 weeks of life (That's two-thirds...sad!) Last Saturday, Julia got moved out of the CVICU upstairs to an intermediate cardiovascular unit. She had her own room for a few days (I called it the luxury suite) and then earlier this week was moved to a shared room. (Though she has the bed by the window so that is nice. And her roommate is pretty quiet.)
Thankfully, Julia is doing much better (in general) than when she was admitted 2 weeks ago. She is off all IV medications and has transitioned to meds she can take through her NG tube. She no longer is on oxygen and doesn’t have to wear the prongs in her nose. (She is happy about that and so am I!) Her blood oxygen saturation has been steady breathing on her own. Last week, they decided she was ready to switch from continuous drip feeds to bolus feeds. Continuous drip feeding is like an IV drip but through her NG tube where she gets small amounts of milk consistently into her belly. Bolus feeds are when they feed her through her NG tube every 3 hours or so (more like how she would normally eat.) However, she started throwing up a lot. So a couple of days ago, they put her back on continuous drip feeding. Her eating continues to be a concern- especially for me! No one understands why she is not tolerating food as well. She had an upper GI study done a couple of days ago. They had her drink some barium and then watched with an X-ray how it went down. It came back that she is anatomically fine. But she does have some moderate reflux (not a shocker!) She also continues to have a pretty severe gag reflex. If you put anything just ever so slightly into her mouth, she often has a very strong gag reaction. I am worried about her being able to eat like a typical baby one day. The doctors don’t seem horribly concerned about that. (They’re not the mom!) She also had an echocardiogram a couple of days ago. The results showed improvement! (I’ll take that!) The left side of her heart (that was enlarged) was a bit smaller and her function seems a little bit better. Is that a result of her heart getting better or a reaction to the heart medications? We don’t know. She will continue to get echocardiograms weekly or every 2 weeks for a while as to monitor her heart. They will not know the root cause of her heart issue for a while. Unfortunately, only time will confirm or rule out theories (most likely a month or two.) Her weight has been hovering around 8 lbs. as she loses and she gains small amounts. They upped the concentration of her formula/breast milk mixture yesterday to help increase her calorie intake. Hopefully she will start gaining weight. They ideally want her to be 10-12 lbs before they go in to repair her AV canal heart defect.
It is a day-by-day process. Last week they were hoping she would go home this week. Now it is looking like it will be next week (Thursday or Friday.) Thanks to the wonderful supportive friends who have been volunteering to watch Mattie and for Mattie’s school (that has an extended care program into the afternoon,) I have been able to visit Julia every day. Mattie finally got to visit Julia this past Sunday since she was basically over her cold (we had her wear a mask.) She was so happy to visit her sister! She misses her. It has been nice that Julia doesn’t have as many tubes and wires connected to her so that she can be held more easily. And it is generally nicer up in the intermediate care unit. The rooms are bigger with their own bathroom. This made it more comfortable for Mattie when she came to visit. Other babies and people around can intimidate her. Bob and I are hanging in there. When you’re in the thick of things, you just go into survival mode and do what you have to do. But it is definitely taking its toll. We are tired. It is very emotionally draining to have a child in the hospital. My patience with Mattie can run thin and sometimes I am just distracted by the worries in my mind. Please continue to pray for strength and endurance for us. Pray for emotional protection for Mattie through all this.
Well, I hear Mattie waking up now. So I better go start the day. I’ll keep you all posted on any new developments.
Much love,
Val, Bob, Mattie, and Julia.
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