Ais Update 6/11

As I type this both of our babies are sleeping in their cribs just down the hall.

I can hardly believe we are all under one roof again.

WE ARE HOME!!!!!!!!!!!!!!!!!!!!!!!!!!!!

The day began with hopes for good progression, enough that we could make it home by Friday. As I met with each doctor/specialist, we started getting cleared for discharge. She was eating solids pretty well and the speech therapist and nutritionist agreed she was ready (this was the last piece of the puzzle). By 11:00 I began to wonder (aloud) why we even needed to be in the hospital anymore. I talked with a few people, but obviously hadn't talked to the right person yet. I was planning to spend the afternoon with Ro; Patrick was planning to visit Ais over his lunch break. Knowing my husbands personality strengths, I called and asked him to stir the pot a little while he was visiting. :) :) I knew he would know the right people to ask the right questions of. 

I was right. I got a call an hour later from Patrick that she was going to be discharged today!!! We had just needed the go ahead from the doctor in charge of the unit. That doctor happens to have known Patrick for over 15 years and so had been visiting us and Aislinn when we were in PICU. This is not why she was discharged, but it was nice to have someone in our corner, someone who knew Aislinn's full story and has seen her remarkable progression and recovery. He approved her discharge knowing that we agreed to some at home therapy visits as well as learning how to use the feeding tube and pump, since she needs supplemental nutrition for the next month or so.

Praise the Lord! I cannot believe we got to leave today. The rest of the day was a whirlwind and a little surreal. So amazing. It hasn't entirely sunk in yet, but I think it will when we wake up and don't have to rush down to the hospital. I can't wait to watch Ro and Ais play together again, eat meals as a family and actually have a chance to enjoy this beautiful summer we are apparently having. :)

I have more I'd like to add in the next few days after we have a chance to settle in and catch up on sleep. :)

snuggling while waiting for discharge

I did not doctor this photo - her hair really looks that red sometimes!

playing while still waiting for discharge...

And then we were free! Aislinn definitely knew what was going on. I got her dressed and she started laughing and clapping. She became so happy despite how tired she was. She giggled as we walked down the hallways and then laughed when we first hit the fresh air. It was amazing to experience her joy at leaving the hospital.

 Going out through the doors we first came in through 2 weeks ago. There were times I wondered if we'd ever see those bright shining eyes again. She is so beautiful and happy. This may be one of my favorite pictures of all time.

Aislinn was SO happy to be in her own bed. I completely underestimated her level of awareness of her surroundings. She snuggled right in when we laid her down and did not make a peep. (which is not exactly how it went down in the hospital...)

And there it is. We're home. She's home. Thank goodness for video baby monitors. :)

I've had Matt Redman's 10,000 Reasons (Bless the Lord) stuck in my head every morning and night since Aislinn has been in the hospital. (listen to it here). It was on the radio when I got into the car to meet Patrick in the ER on Monday, May 27th and then today 15 days later while we were waiting to be discharged. In the moments when I could hardly think straight enough to pray, read my bible, remember verses, or journal, this song would pop into my head. Tonight I came across a verse that seems to have inspired the song. I love  that even though I didn't know it, this verse was the cry of my heart. Thank you Jesus.

Bless the Lord, O my soul, and do not forget all his benefits--who forgives all your iniquity, who heals all your diseases, who redeems your life from the Pit, who crowns you with steadfast love and mercy, who satisfies you with good as long as you live so that your youth is renewed like the eagle's. (emphasis added)

Psalm 103:2-5

Praises

WE'RE HOME!!! 

Prayer

-Continued healing for Aislinn and prayers against any malfunctions with the shunt. We'd really like to not see the inside of that hospital again for a long time

-we definitely have our work cut out for us in progressing Aislinn's eating and motor skills. But at least we're home working on them. :) We'll have weekly appointments with a speech therapist, physical therapist, occupational therapist and dietician. Thankfully they'll be coming here for those appointments and I won't have to drag the kids out 4 times a week!!! Please Pray she continues to progress quickly in each of these areas!

-REST. Holy cow, I didn't realize how tired I am until we got home and sat down for the first time. All four of us could use a lot of rest (perfect example: Ronan took a 4 hour nap today!)

Seriously you guys, thank you for your prayers over these past two weeks. I have so much I want to say, but don't even know where to begin. It has been amazing to experience the blessings of hundreds of people praying for us at one time. And when I couldn't find the energy or words to even pray, I knew I could rest in your prayers and support. That is an amazing thing. I have no doubt your prayers moved mountains. Aislinn's condition improved the day I made this blog public. Each thing we've prayed for has been answered. Not always in our timing, but in God's perfect timing. :) He has been so good to us.

Then they cried to the Lord in their trouble, and he saved them from their distress; he sent out his word and healed them, and delivered them from destruction. Let them thank the Lord for his steadfast love, for his wonderful works to humankind.

Psalm 107:19-21