Dear Friends and Family,
I just thought I’d update you some more on Julia’s progress. Today is her actual DUE DATE and she’s almost 3 weeks old (this Friday!) It’s been a bit disappointing because I figured that she would have been able to come home by now. But alas, she is still in the Intermediate Intensive Care Nursery. It seems as if her discharge is always “3 or 4 days away.”
A few things have come up, however, that keep her captive. Her feedings are improving, but still an issue. She actually “nippled” (or taken by bottle) 3 whole bottles worth (60-65 mL) in the last 4 or 5 days. On average, she nipples half her bottle at a time and then the rest of the bottle is gavaged (which means that she takes the rest down a tube that goes from her nose into her stomach.) Because Julia will most likely go home with a tube in her nose, Bob and I have had to learn how to insert the tube into her nose and slide it into her stomach. It is called an NG tube. It is not fun! Julia often cries, gags, and squirms during this process. It is torturous. The most frustrating thing about Julia’s eating is her inconsistency. She “can” do it. But she is often so sleepy and lethargic, that she poops out after a short while and won’t eat anymore after that. I think that over time, as she matures, she will “wake up” more and more and I think her eating will greatly improve.
The other issue that the doctors are trying to diagnose is that Julia is often very congested in her right nostril. They are not sure if it because Julia has a cold or if it is because she has reflux and milk is coming back up and getting into her nose making it congested (or both!) So when I went to the hospital yesterday, she was in isolation because they had done an X-ray of her lungs and did a swab test to test for infection. She should come out of isolation this morning if everything is clear. Because of Julia’s heart condition, they are concerned about her getting fluid in her lungs and her heart having to work harder. The X ray showed that her heart was slightly enlarged, thus working a bit harder. The fluid in her lungs were minimal. However, they have decided to put her on a diuretic since she will eventually have to go on one anyway before she has her heart surgery, which will hopefully still be when she is 2-3 months old. They are doing the reflux test on her tomorrow be putting a tube down her nose to monitor anything coming back up for 24 hours. We’ll know the results of that sometime Thursday (Dec. 8th.) They will also put a little thing by her nose to see if she has any sleep apnea.
So the short story is that she will most likely not be able to come home until Monday, for sure. I have been growing increasingly weary of Julia being in the hospital. I feel so torn between my two daughters. I know I am doing the best I can and that Julia is in great hands with some wonderfully loving nurses (I swear it is nurses that make the world go ‘round! They are so wonderful!) But I just want Juila HOME with her family. The doctors and nurses all agree that children generally thrive more when then can be home with their family with the same consistent caretakers and with those who can love them better than anyone. I feel like I haven’t been able to work consistently on breastfeeding since I’m at the hospital for only 1-2 feedings a day. So once she’s home, I can work on it a bit every feeding to give her lots of practice. Thankfully I have terrific milk supply. (Didn’t you all want to know that! Haha)
So that’s the scoop.
Prayer requests:
* For conclusive test results so we know what we’re dealing with and can deal with it!
* That Julia will “wake up” more from her very sleepy state (I’ve hardly seen her eyes since she’s been born!)
* For Julia’s feeding (this goes with her sleepy state.) That she would continue to grow in strength and coordination with nippling and then eventually transition into breast feeding.
*For Bob and me- as we are tired of having to visit Julia in the hospital and want her home!
*For Mattie as she is also growing weary of her mom being gone for 3-4 hours a day at the hospital.
Praises:
* My mom who is here has been such a trooper. She has been taking care of Mattie, doing laundry, cleaning, cooking and many other tasks that I am so appreciative of. She will be here until the 12th and then Bob’s parents arrive on the 13th and will be here until the 26th. My dad was also able to be here for a week but is home now. He had a great time with Mattie and got to hold Julia a couple of times in the hospital. It was great having him here, too!
* Julia’s weight is consistently increasing and she is tolerating all the food she is given- even if she has to take some of it through the NG tube.
* Julia has been slowing improving on her nippling (taking a bottle.)
Thank you for support and encouragement. I’m hoping to have more pictures up on the blog soon- but it’s been difficult staying on top of things like that. I have wonderful intentions of getting all sorts of stuff done after Mattie goes to bed, but instead I’ve been falling asleep in her bed almost every night during our nighttime snuggle routine. I’ve just been so tired. Oh well. I wanted to also mention that you can feel free to forward this email (or any of my updates) to anyone you feel would like to read them. Julia can use every prayer and so can we.
We love you all very much!
Love,
Val, Bob, Mattie and Julia
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