Raindrop

Go forth

with an umbrella of love, 

a heart full of grace, 

and a determination

to never stop

until God redeems 

each raindrop in your life

and you receive every 

olive leaf of hope

our heavenly Father has for you.

How totally appropriate that the paint color we chose for Clara's room is called Raindrop. I wish I had chose it simply for that reason, or that it was my first choice (first color was too blue). It just eventually ended up being the perfect hue for Clara's special room.  I love it more even now because of the name. 

This past weekend Jason and I got to sleep over in a sleep room with Clara at the hospital.  For 24 hours we did her care entirely. I think we did a fabulous job, and apart from the trach stuff it was all just normal baby stuff. We even got to walk her around the NICU in a stroller. This training is called ambulatory care. We loaded up her equipment, learned where everything needed to go underneath. Went over what to do if the trach came out, plugged off. Just another teachable moment for us on how to take care of our very special baby. She slept the entire time and never even noticed when we put her in the stroller. Funny!

Inside our sleep room we did all her care, fed her bottles, changed her diaper, clothes, suctioned her rocked her. When we feed her we needed to lay her down sideways and pace her swallows. Just so she remembers to breathe, and if too much goes in it will come out the side of her mouth. Actually today we are now able to hold her up right for her bottles, since she is doing well. 

Here are some photos of Jason holding her Saturday. 

You will noticed in all these photos Clara is without the feeding tube taped to her face. She totally getting all her milk from a bottle like a big girl. For months I thought and dreamed about her having nothing on her face. It was nothing but sweetness for me when I saw her Saturday for the first time. Now we can all see her beautiful face. Everyone there is amazed she is even able to drink from a bottle. They say 98% of babies that had been intubated as long as she did would have an oral aversion. This is just wonderful news for us and her. Now she will not have to get a G tube, or another surgery and we can have less equipment in our home to take care of her. 

Clara must have known she was with her mommy and daddy because she did some great sleeping! She woke up about every four hours through out the night for her bottle. Since we can not hear her cry we can hear her trach and sometimes she will desat when she gets fussy. She is really a good baby and is easily comforted when we just pick her up and when she has her pacie. 

Jason's birthday was Sunday so it was great for him to see both of his girls all in one day. 

 (dinner at his parents house)

So...they have given us a discharge date either February 3rd, or the 10th. It's all depending on home health care and when Clara's last Broncoscopy and eye exam will be. She is basically ready now except for that, just Jason and I have some more learning to do and two more visits to the sleep room. We are thrilled and so proud of her!  Happily stressed out as we try to prepare for a baby in our home. 

For the past several months it has just been so hard. Now its almost over and we can finally see a future with Clara home with us. I can look back and see even now how God had his hand in it all. For four months I prayed that he wouldn't leave us and that he would make a way for us. My Hope was in the promise that he had a plan. I persevered and pressed on even at times when it wasn't very pretty, because I knew He was and will always be faithful.  I guess my teachable moment for everyone is that God doesn't cause the pain in our lives, he just promises us to be there along side us until the end. Even if the outcome isn't what we had hoped for. "There is beauty and a garden of blessings waiting to grow in the midst of our pain" (Girth)

I know that we have more hurdles to go with Clara. Right now they don't seem so scary. I am staying in the moment with praise. I know that God will meet us there when it is time. Love will hold us together!!