Lets start this update with another little baby of mine who’s incredibly tough. Miss. Kara has been without mama and daddy now for 14 days. We’ve seen her, talked to her on the phone, and sent her pictures – but it isn’t the same. She’s still behaving. She’s still charming. She’s still sleeeeeeeping, and she’s still being good for my mom and dad who are keeping her safe and entertained. We hope to have our whole family together again ASAP!
Noah is progressing nicely, continuing to do better than doctors predicted. The biggest prayer Josh and I are asking for right now is our own patience. Its so difficult knowing that he is doing everything beyond belief; all of his doctors are stunned, surprised, happy, and intrigued. The battle Josh and I are facing is that he still isn’t eating. While we know his brain matter is questionable and there isn’t a lot, he is healthy and ready to go home aside from eating (and before you ask, no… His lack of brain is not the reason. Babies use their brain stems right now, not other parts of the brain. Noahs brain stem is completely intact. Physically, he should be acting like any other newborn).
So, we breathe. We take a step back, regroup. Remember all that he has been through, how much he has overcome, how stressful everything has been. We count our blessings and let go of our sacrifices.
His physical therapist is working diligently to create some splints for his hands and thumbs. She has been working with him 6 days, around 20 minutes each day, and we already see a difference in his ability to both open his hands, relax his fingers, and straighten his wrists. He kicks more often and has learned to bring his hands to his face/midline.
Optimology met with Noah today. There is no structural reason he isn’t opening his eyes completely, no reason he can’t see! If he isn’t opening more often by discharge well schedule a follow up. Otherwise, we praise God for his vision.
We also met with his high risk physical pediatric doctor who he will follow up and rehab with post-discharge. Josh & I both like him, and think he will be a good asset in Noah’s life.
Speech therapy has high hopes for fighter Gabe. He does have a little hypomobility in his lower jaws, but practice makes perfect. There is no physical reason to be found he can’t take a bottle or nurse other than quickly tiring. He has quit nursing all together, so we’ll be working on that when he’s home and can relax a bit more. It’s almost lose lose bc until he eats 60ml they won’t let him leave, and you can’t tell how much he eats from my breast. He fights it because he wasn’t allowed to do it.
As of the 9th, the started skipping mouth feedings to every other. I refuse to allow them to quit him all together because he needs to practice to strengthen his muscles. I’ve agreed to allow him to skip till Thursday. Then we have new choices to make. They also fortified his milk with formula. Can you say one mad mama? That was shut down immediately. No formula for mamas boy! Not if I can help it anyway.
Let him stay in hospital or get a g/peg tube surgically placed in his stomach. We think we can convince the doctor let us take him home on an ng tube. The g/peg tubing is placed surgically into his stomach. It isn’t permanant life-long, and can be removed at any time if he later gains the ability to eat enough to sustain life. The ng tube is a nasal feeding tube that is rarely sent home with babies. The problem with the ng tube is, it aggravates him dearly. He’s pulled it out several times, and because he is doing so well with his arm and hand movement, we’re afraid as we continue working with him further he’ll pull it out more and more. As for nursing, I don’t think he is going to be willing to nurse at all with the ng tube. Ever. Every slight movement moves his tube around and irritates him, sometimes taking quite a while to calm him back down.
So, we wait until Thursday. His new doctor, a GI doctor, should be around to talk to us today at some point and let us know what all is involved with the peg, and if GI will even do it. They may not be willing with all else he has going on, and may send him to a pediatric surgeon. His neonatologist isn’t sure.
Previous Posts about Noah:
What is Wrong with Our Baby Boy?
Baby Boy Eagle Has A Name! He’s Born!
My Two Day Old Warrior
Totally In Love, Noah’s Improving at 5 days old
Noah’s Moving On Up
There’s Hope In Progressive
The First of the Setbacks
Back on the Road to Recovery