What a wonderful couple of days we've had! Jonathan came home and most of our time was spent at the hospital or running errands! It was crazy but it was nice to be doing family things with my little family! There are so many errands to run and things to do at the hospital because we have to get ready for PENNY TO COME HOME!!!! That's right. I said the word and not just the letter! She's coming home on Monday and we had a lot to learn! Yesterday we met with the apnea monitor and oxygen tank provider to get trained on how to use their equipment. Then we met with the g-tube feeding pump lady to learn how to use that equipment. I've been on the phone pretty regularly with the hospital case manager and the insurance case manager getting everything all ready for our little miracle to thrive at home. We just cannot contain our excitement, and some nervousness, about having our little family all together. One of the wonderful things that the Lord has provided is that Jonathan will be coming home on Sunday night and won't have to leave until the following Saturday afternoon. Then he will be coming back that night and staying for another full week!! That's almost 2 full weeks of being together and figuring out this new life. I'm so excited!
Medically Penny is doing excellently. She had an echo that showed no pulmonary hypertension! She had a swallow study that showed that she has mature enough oral motor skills to have unthickened feeds! She also has healed up very well from her surgeries and seems to be remarkably more comfortable. She's doing well on her home oxygen settings, and most importantly, is gaining about an ounce a night. That's HUGE! Before she was gaining maybe 10 or less grams per night. The goal is about 20-30. Now there rarely is a night that she doesn't gain over 30 grams. This just verifies to us that the decision to give her a g-tube was the right one. This is exactly what she needed to get the kind of growth she needs to continue to improve. She would like to disagree, I believe, when we have to change the tube dressing every night, but that won't be the last time we have to do uncomfortable things for her benefit. They've said all along that all she needs is time and growth, and that's proven to be true. We couldn't be more proud of her!
Lydia just keeps growing and growing too. She's really started talking (ahgooo, ahgee...etc) and laughing a lot. It absolutely melts our hearts! In fact, the other day at the hospital, Jonathan decided to expose them to some acoustic music rather than the straight Mozart they've had since birth. Stevie Nix's Landslide came on and I started singing it and looking at Lydia. She was staring right back at me and smiling. Then she started to sing along! It was a different sound than she makes when she's just cooing, we really think that she was singing with me! It was such a precious precious moment. Of course I started crying (mostly at the "time makes you bolder, children get older, I'm getting older too" part...I'm sure it had nothing to do with my 30th birthday coming up soon) We've been trying to recreate the moment ever since, but there's just no way to recreate something so organically beautiful.
Another precious moment that I keep trying to catch on video is when Penny finds her sister and just stares at her. She's started to do some social smiling but not in a predictable way, and I haven't seen her smile directly at Lydia yet, but the look in her eyes when she sees her is just beyond anything I can find words for. Normally I would try anyway, but this time there's just no way to describe it...so I'll leave it alone.
So, we'll be staying at the hospital Sunday night to do our "trial run" and make sure we know how to do everything before we go. Then Monday early afternoon(ish) we should be taking Penny on her second ride down Poplar Ave. I just can't wait to start this new crazy chapter in our life!
Specific Prayer
- for all to go smoothly
- for our friend Lynnlee to be not far behind us!
- for nothing to distract us from being grateful to God for every single miraculous second we have together
Lydia's
first trip to YoLo....she kept eyeing our Pear and Brie gelato and
wondering why we weren't giving her any of that rice cereal!
"noboooody knoooow the trouble I've seeeeeen" -Lydia in Penny's crib
Lydia at the dog park. She was enamored with the trees!
The girls first fort together. When there's a tornado warning at Lebonheur all the babies get forts!
Penny and her favorite Daddy
The girls and their grandpas
Since
our favorite RT Lani (sorry other RTs) isn't working on Monday we got a
group shot on Thursday. Lani did an amazing job advocating for what
was best for Penny and we will forever be grateful to her for that!
All of the parental units....in yellow dresses
Penny slept through the oxygen tank lesson...slacker
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| Our friend Amy stopped by and tried to do a matching face picture with Lydia...Lydia didn't cooperate |
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