Ava is doing amazingly well. She's acting older than her little 28 week old self and one by one is getting rid of tubes and wires. Hopefully today will be her last day under the bili lights. Her "numbers" look good and she's pooping well, so tomorrow we might get to see her in living color. She is now getting 10ccs (2tsp) of milk every 3 hours and as long as she tolerates it, they'll increase her feeds every 12 hours so soon she'll be up to 28 ccs (just under 1 oz) at each feeding! So while she's loosing weight now (she weighed 2lbs, 7 oz today) we're very hopeful she'll start to get some meat on those little bones soon! She's also breathing really well, so if she cooperates, they will try to take her off her "forced air" tomorrow, which means those tubes in her nose will go away! She'll still have her NG (naso-gastric) tube so we can drop her food right into her belly, but she doesn't seem to mind and it's such an easy way for her to get her nutrition, so we're thankful for it! (The picture is from this morning...she didn't like the flash on the camera!)
The big girls are doing well at home. Hannah Mae is definitely happier having mama around more. She's coped so well with my bed-rest and days away in the hospital. I'm so thankful for our sweet, content little one.
Ruby is definitely the most emotionally aware of what's going on. She's much more calm with me at home more, but we need discernment about how to help her handle what will be a long journey before Ava gets home and our family turns "normal" again. I think if she could she would come to the hospital and sit with me and Ava all afternoon, though when I told her she couldn't come this morning, but maybe she could come play with Ava tomorrow, she said, "Mom, we can't play with Ava, she's in a BOX!" So maybe she's better adjusted than we realize!
Elizabeth is doing okay. She continues to fight a cold she's had for the last two weeks, so she hasn't met Ava yet, but she doesn't seem to troubled by it. The last few months have been a real struggle for her. It's been hard for her to have her very regular schedule disrupted by my bed-rest and hospitalizations and multiple caregivers. On the flip side, we've seen a real improvement since I've been home more and are praying for wisdom about how to shepherd her little heart.
I think for the first time in the last 6 years, Elizabeth is not the center of our family focus. However, in the middle of all that's going on with Ava:
*We're trying to make some decisions about her schooling next year, and a key component is the therapy services she needs. We're also still very aware that her health may be a prohibitive factor and ultimately, we need God to guide us.
*At her recent ENT appointment, her audiogram showed that she has definite conductive hearing loss and might benefit from some assistance with her hearing.
*We cancelled an endoscopy last month because I was on my way to my first hospitalization, but now that things are more stable (a crazy thought), Elizabeth will have an endoscopy on the June 6th to see how the veins in her esophagus are doing.
*In fantastic news, Elizabeth is growing like a champ and remains firmly on the "normal" girls growth chart. Yay!
My mom was able to change her flight home again so she'll stay with us until Wednesday, when my sweet sister-in-law will arrive to help us for 10 days. Tonight we had our first family outing in ages and enjoyed a picnic in the park with friends. I spend about 7 hours a day up in Ava's room in the NICU and Matt continues to work hard to catch up from all the time he's spent serving our family during my bed-rest, but we're both so thankful to wake up together and for more family time in the evenings. We continue to be so blessed by meals, all the help with errands and entertainment for the girls. We truly wouldn't be surviving this without help from so many of you. THANK YOU for every email, text and voicemail. I read and listen to every one and even though you're not hearing from me, please know that we are so grateful for you!!
We love you and appreciate you!
Love,
Matt, Sara, Elizabeth, Ruby, Hannah Mae & Ava
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