Ouch!

(Because it would just be wrong to have an update without looking at his sweet face! This picture was taken days before we came to the hospital. He LOVES his Pooh and it usually sleeps right by his head at night.)

Noah has had a rough go the past 24 hours. It has been a struggle to get his pain well managed and he has had moments of real agony. That is hard to watch. Keith stayed with him all night and was a really great and tireless advocate for him. A daddy who gives up good coffee and sleep (and yes, in that order) is a real prize and I am so very grateful for him. He looks out for me and my rest and sacrifices his own needs.....love, love, love him.

It looks like we are finally in a good space with morphine and valium (see what I mean by lots of pain!) and hopefully we can hold him again soon.

The surgeon is optimistic that this surgery will clear up some of the mystery pain Noah has been having for a while. That will be a really fantastic thing, and that is what I focus on right now as we go through the hard part. Good things ahead!!!

(Pooh standing guard and ready for hospital duty!)

Successful Surgery.....

(Right before surgery)

We are happy to share that Noah is out of surgery and it was a success!! The surgeon was surprised to find a large blockage at the top of his small intestine, just below his stomach. She estimated that his opening had shrunk to the size of a pin (no wonder nothing was getting through)!  The intestines above the blockage were very distended so we are very grateful that they decided to move forward now. They took out the blocked section and were able to stitch the two sections together. It is probable that he will be eating again in 5-7 days, and then home!! 

We are hopeful that this surgery has resolved some mysterious pain issues that he has been struggling with. His tummy has always been a source of discomfort for him, and it could be that this blockage took a while to build up and was causing his discomfort. That would be a real praise!! 

We are so grateful for all of your prayers! How we love this boy, and can't wait to have him home again!! 

Look out 2012!!

Surgery

Looks like we are on our way to surgery today. From the x-rays we know that there is some type of obstruction -- what we don't know is exactly where,  if it full or partial, and if there has been any permanent damage to the site of the blockage. It has been explained to us that there is a 50% chance that it is a partial block caused by scar tissue that can be snipped away. In this case, recovery will be pretty quick, about 2-5 days. There is a 40% chance that it will be a complete blockage and that will require them to remove the blocked section (how much will depend on the amount and level of damage) and stitch the ends together. This will be a longer recovery time (up to 2 weeks). There is a 10% chance that they will have to cut away the damaged section and not be able to reconnect. This would require them to place two "stomas" (holes in his tummy) and there will be bags connected to them to catch his waste. It is then a near certainty that in about 8 weeks they will be able to go back in and reconnect it. (Praying that we don't find ourselves in the 10%)

So, much is unknown as they move forward...how grateful we are that none of this surprises God and that He will give us all we need no matter the outcome of the surgery.

We are anticipating him going in about 11:30......not sure on the exact time. We will try and keep the blog updated and are so grateful for all of your prayers!!!

Introducing ....Noah!

No new information today. We still irrigate and wait. Unless he starts to show signs of pain, his stomach begins to enlarge, etc.....we keep on this course. They just don't know the whys.

I realized that many of you have never actually met Noah in person....and that it would be nice to introduce him to you through video. Keith and I had very sweet time with him today. He just laid his head on my chest for the longest time ....content to just rock, eyes open. How I love that!


It is worth putting up with our baby talk voices to hear his sweet talking and laughing!

SO, without further ado.....we bring you Noah:






Merry Christmas!!

Today....

......not much happened. We are still waiting for the barium to move out of his colon. The x-ray showed that it hadn't changed a whole lot. They irrigated twice today and we will get a new x-ray in the morning. I saw a nurse that I got to know during our initial seven week stay. She said that during shift change she had heard the word that, "Noah is back. Boy, is he in love with his Mommy." Oh my....melt my heart! I assured her that the feeling is mutual. How God does this amazes me....knits our hearts.

So, I struggle with the waiting....with the leaving my kids at home......and really with leaving my baby every night. Praying for wisdom for the doctors and God's hand to touch Noah and bring him home!!!

This was the face that met me today when I got to the hospital....



And this is what I got to do....



Now that his IV line is in his arm I can cuddle with him better -- and we both love that!! What a great gift!

The plan for today was to get an x-ray to see if the barium was all gone from the test on Tuesday. Since his bowels aren't moving, there was a large amount left and so they tried to irrigate it and flush it out. It is pretty thick and so this will not be a one shot process. They will come in later today and irrigate again and take another x-ray in the morning to see where we are. As soon as the barium is gone we can move on to the small intestine and see if there is a blockage there.

This is a real puzzle because it looks like there is either a partial or complete blockage, but he isn't acting like a baby whose intestines are blocked. He is happy, content, and in no pain. If there were a blockage he should be looking like a sick baby. So, the doctors are just getting one piece of information at a time and trying to build an accurate picture of what is going on in his belly. If there is a partial blockage, it may clear itself, or it may require surgery. If there is a complete blockage then it will be surgery for sure. We would love to avoid that!

On an interesting note, we had two GI doctors in our room to look at him yesterday. One of them was named Dr. Farrell, and I thought that was interesting since one of the pieces of equipment we use on Noah's GI tube is called a Farrell bag. Keith asked about it and he is THAT Dr. Farrell. Not only that, but he is the Chief of Staff for all of Cincinnati Children's. You would never know it to meet him, his demeanor was very unassuming and he is very approachable. Grateful that we have such knowledgeable doctors on Noah's case!

I brought this boy with me today.....



Several months ago he was unsure about the whole big brother gig. Who can blame him -- being the baby is a pretty great spot to be in! What a difference a few months can make! He came to me last night sobbing because he was missing his baby brother. What a sweet heart this little guy has! How I love him!!

Home 4 Christmas?

"Will Noah be home for Christmas?" is a common question around our house right now. "We don't know," is the familiar, and frustrating answer. Our sweet baby is still in the hospital, and we really don't have the answers yet to explain why we are here. It started as dehydration from vomiting, which came on suddenly on Friday night. Now we are trying to figure out why his bowels aren't moving gas or any of the other things they should be moving (OK, I guess there is just ONE other thing).

What we are learning about him is that his extreme prematurity, and subsequent long hospitalization, make everything more complicated. His tiny veins have been used so many times for IVs, etc, that they just don't work that well for access anymore. It is extremely difficult to get an IV in him, and once he was dehydrated it became impossible. They had to go right in the bone on his leg.....we hadn't ever heard of that before (and weren't real thrilled to hear about it at all). It saved his life because he was really starting to take a turn for the worst quickly. The ER doc said he wasn't worried when we came in, but two hours later they were all very worried. Poor guy was so lethargic that he didn't even cry through all of it, but his heartrate told the tale when it was beating at over 200 times per minute. It HURT!!

By God's wisdom and grace we are at one of the top 3 children's hospitals in the country, and they are actually ranked #1 for gastric issues, so we are hopeful that the real cause will be found soon. He is no longer in pain, but he is unable to eat until we figure out why things aren't moving through his system. Everything he is getting now is through the special line that they put into his inner arm.

They ruled out an obstruction in his colon and now we wait for the barium to all be gone from that study and move on to an upper GI to make sure there isn't a blockage in the small intestine. This could be tomorrow, or the next day. An x-ray in the morning will tell us if the barium is all gone. His medical records from Florida paint a very incomplete picture of his first 8 months of life, so it is like starting from scratch in many regards.

So, it is highly unlikely that he will spend his first Christmas as a Williams at home. We are sad, but hopeful that this will be good in the long run and give us some answers about what is going on in that belly of his.

We appreciate your prayers -- they encourage and strengthen us to keep advocating for our boy -- anyone who has had a child in the hospital knows that this can be a very draining experience. Our love for him only grows deeper, and we are so grateful that God has allowed us on this journey with Noah.

Blessings to you all this Christmas!!