Clara is now 4 months, 3 weeks adjusted old (i guess that is how you say it). 126 days we have been in the NICU at Chapel Hill. When they said that today during rounds, I was shocked. We have made it through 126 days. I think back to all that time, and remember a lot of uncertainty, joy, loss, peace, pain, love.....and the list goes on. These times now have been the best, my favorite. To hear that Clara is stable and doing great is just so sweet.
She is now 6 pounds 2 ounces. She is wearing newborn clothes and diapers. She of course loves her pacie still. Her hair looks darker than it did months ago. We thought for sure then she would be a blond. But you never know. This was a photo of Madeline in the hospital a day or so after she was born. She is sitting in the same Boppy Clara is in the above photo. They defiantly have the same cute button nose.
Our family meeting last Thursday was very encouraging but overwhelming. A lot of talk of future plans when she will come home. Her needs medically, home health care, nursing care, etc. A bit much for us. We feel so relieved to be finally in this new phase, but so scared of whats to come when we are doing it all by ourselves. Our lives will change, no doubt about it. There will be new norms to embrace and get adjusted too. Not just for us, but for Madeline as well. I know that this happens anyway with a new baby in the house, but take that experience and multiply it by 20 plus throw in a stranger in your house helping you as well. Mind blowing.
She will have a case worker to arrange our home health care with therapists, medical supplies, etc. This part is comforting to know there will be help. Also she will have a case worker in the hospital to take care of her appointments there. Again comforting. So much yet I do not know, the pieces are coming together, and will continue to do so during the rest of our stay there. Our NICU specialists have promised to get us very ready and arrange everything before we take her home.Again comforting.
Clara's swallow study went great. She is not aspirating. Now the plan is to feed her 20 mls twice a day to slowly get her used to it this weekend. If all goes well she can be feed more. I never knew how complicated the how concept suck, swallow, breath is. When I am feeding her it takes a while, because I have to pace her to remind her to breathe. She gets her very tired even after 20 mls. They do not know if she will have the stamina to feed from an entire bottle, since she does have lung issues. If she can not, she will have to have another surgery for a G tube. However everyone is very optimistic that she is doing so well. She was intubated for 100 days and does not have an oral aversion. So just that in itself is amazing.
I brought a mobile in today and Clara seems to really like it. She was just adorable laying there, her eyes following the animals. When I purchased it I thought about how much my friend's baby loved his. She even mentions to me now how she will go in his nursery at home and play it. It brings her so much comfort.
I miss her almost everyday. A part of my loss I've experienced, includes hers as well. This victory I feel of almost getting Clara out of there, would be so much sweeter if she was right along with her baby. And even though our stories are different now, I feel there is no one else that knows what is like to be me more than her. I do know that God will make a way for her and will bless her beyond measure. I pray for her happiness everyday as much as I pray for mine.
The past couple of days my head has been spinning with worry and fear with what is to come with our new phase and the phase after that. I never imagined myself having a child with special needs. As much as I DO know we are meant to be her parents and that God chose us for her, I am still none the less scared. This text helps to refocus me and remind me that God loves us, He has a plan, and he is always with us. If I can continue to hold fast to that promise, How can I fail!
"Let ME prepare you for the day that stretched out before your eyes. I know exactly what this day will contain, whereas you have only vague ideas about it. You would like to see a map, showing all the twists and turns of your journey, You'd feel more prepared if you could somehow visualize what is on the road ahead.
I will not show you what is on the road ahead, but will thoroughly equip you for the journey. My living presence is your Companion each step of the way. Stay in continual communication with Me, whispering my name whenever you need to redirect your thoughts. Thus, you can walk through this day with your focus on me. My abiding Presence is the best road map available."
(Sarah Young, Jesus Calling)
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