New Direction...

I've decided to take a new direction with my blog, and I'll admit this is really hard and I'm kind of nervous about putting this out there for ANYONE to read,. When you have a child that is considered "special needs" you feel so incredibly protective of them and tend to be very selective over who you share it with. In past blog posts, I've been very careful to not mention anything about Noah's delays. But I've prayed about it and I feel like this might allow me to connect with mothers/children of similar situations, plus I think it might be therapeutic for me, and at the very least, it might get some of my readers (all 3 of you ... ha!:) to begin praying for Noah's journey. And what better way to start than from the beginning, 2 years ago. Although I will warn you, this is lengthy.

This past Thursday, April 30, marked Noah's 2nd birthday.... When Noah was delivered, he wasn't breathing well at all, so he was immediately put on oxygen and our pediatricians called Huntsville Hospital to come get him and for him to be admitted to the Neonatal Intensive Care Unit. I literally got to see him for 2 seconds before they took him to the nursery for oxygen. The ambulance got there a few hours after he was born (during this time, I didn't get to see him) and they brought him in the room for me to say goodbye and off they went with my brand new baby who I had yet to even touch. Jamie, my dad, and Jamie's parents went to Huntsville while my mom and sister stayed behind with me. The following morning, Noah had a seizure that had to be stopped with phenobarbital. On day 3 in the NICU, the doctors decided it was best to intabate Noah and give him surfactant. Shortly after that, he was taken off the ventilator and breathing fine.

I was released from Helen Keller and was able to go to Huntsville 4 days after Noah was born. I'm telling you, it was all so surreal. I kept telling mom, "I had a baby, but it seems like its all in my mind because he's not with me." Once I got there, we were told that he had low muscle tone, couldn't maintain his body temperature (which runs risk for infections), and up until this point, he had been on an IV. On Friday (the day I got there) they let us attempt to bottle feed him (he was too weak to nurse). He would barely take 1/4 oz., they would pour the rest of the milk that he couldn't drink down a feeding tube that was in his mouth. Visitation was only a few hours at a time and they would let us hold him, change his diaper, and feed him... we didn't miss a single visitation because I was afraid Noah would feel lonely or abandoned. It was EXHAUSTING, physically and emotionally. During his stay, they did a CT Scan and EEG to try to determine the cause of the seizure... everything came back normal. Noah was released on May 14, after 15 days in the NICU, although he still had body temp issues and still wasn't taking in much milk.

It was scary those first few weeks home b/c Noah was losing weight. We had to take him to see our ped's every day for weight checks... they told us he would be re-admitted if he didn't gain overnight. We also had to check his temperature constantly and if it was too low, wrap him in warm towels straight out the dryer. Our a/c was set on 88 degrees in the middle of May, in an attempt to keep Noah's temp up! By the time he was 8 weeks old, he had overcome the temp issues and he was eating much better, however, he still had low muscle tone and lacked the reflexes that all babies are born with. He also still wasn't holding up his head on his own.

We were sent to a Genetics Doctor who told us Noah didn't have a genetic disorder but he was pretty sure Noah had craniosynostosis of the sagittal suture and he referred us to a Craniofacial Surgeon at Children's in B'ham. Turns out, he was right. Synostosis is the premature closing of one or more of the sutures in the skull. This can put pressure on the brain, cause headaches, developmental delays, etc. The only solution is surgery. We decided to go through with surgery and it was scheduled for Oct. 1, 2007 (Noah was 5 months old) It was a major surgery where they make an incision from one ear, across the top of his head, to the other ear and make incisions in his skull to re-shape it. The surgery was a success... however it was really hard on Noah. It knocked him back developmentally to a newborn and it took several months for him to fully recover. Since birth, Noah has been delayed in most areas. Shortly after surgery, he began physically, occupation, and speech therapies at the CP Center (the center treats all special needs kids; they are not limited to those with CP). I also have been taking Noah to Huntsville since July '08, each week, where he receives physical, occupational, and speech therapies (in addition to what he gets at the CP Center). He was almost a year old when he began rolling from tummy to back. Noah sat up at 15 months old. At 2, he's still not walking, crawling, or talking. But he's doing GREAT! He makes lots of sounds and has said "uh-oh" and "hi" but it's kind of sporatic. He seems to understands alot of what we say. He goes onto his hands and knees (from sitting) all the time but just won't crawl. He will stand while holding onto something, but he can't pull himself to standing yet; and he can take steps with us holding his hand. He still has weakness in his trunk/core, which affects everything because strength starts from the core and moves out (from core to shoulders to arms, to hands, fingers).

Our neurologist at Children's Hosp. is wonderful. Basically, he says that Noah's diagnosis is "developmental delay" and he thinks its from the difficulty following delivery and his surgery. Developmental delay is really a "lack of diagnosis" or a catch-all when they can't figure out what's causing a delay. He is just doing all the tests he can think of, to try and eliminate all possibilities of what the underlying problem is and so far, everythings coming back normal (PRAISE GOD!) He told us we may never find anything and that Noah may catch up developmentally and be fine (which is what Jamie and I believe will happen). But at times, it can be frustrated STILL not having any answers... but at the same time, if we had a diagnosis, then we would know what Noah's capabilities would (or wouldn't) be... not knowing allows us to have hope for a completely normal recovery.

Noah had blood work done 3 weeks ago that has been sent to Baylor Univ. in TX. They are now looking for mitochondrial diseases, which affect muscles. If this comes back positive, there's a good chance all of our children would have it. We should have the results in about 5 more weeks (hopefully less). The positive note, is that our neuro doesn't think Noah has a mitochondrial disease, he's just doing the testing b/c it was the next step in eliminating causes. Also, in June, he will have another MRI. Please add Noah to your prayer lists that these both come back normal! Noah is being fitted for Ankle-Foot Orthotics (AFO's) on Monday to help him in walking and he begins an intensive therapy program (2 hours per day, 3 days a week) during the month of May. Hopefully, this will have him walking by the end of the summer (fingers crossed!) The braces are temporary because Noah's ankles are weak, so he locks his knees. It's hard to take a step with locked knees, so the braces will help strengthen his ankles so that he learns to stand without locking his knees. Then we will wean him out of the braces.

Noah is PRECIOUS! He is such a happy, easy-going boy. He's so loving and tender-hearted. I honestly could not fathom my life without him in it. I know that this is all God's plan and I trust Him... but it's hard to not get frustrated and down at times. Especially since we are 2 years into it without any diagnosis. But then I think "what kind of mother would I have been if we hadn't dealt with this?" and I realize just HOW MUCH I've learned from it all... how much more patient I am, I'm stronger than I ever thought, and I don't take things for granted... I LONG for the day when he talks my head off from sun up to sun down and is running all over the house, getting in to everything he can get his hands on! Noah is my little blessing and regardless WHAT our outcome may be, Jamie and I will ALWAYS be his biggest advocate.

Noah on the ventilator -- 2 days old


Holding Noah the first time in the NICU -- 4 days old
(WHEW, we look EXHAUSTED!)


Noah in ICU following his surgery in B'ham with his new, perfectly-shaped head
@ 5 months old


The incision from his surgery



Noah on his 2nd Birthday!