Road is getting less bumpier

So last night was better....finally we both got some sleep. Noah slept till about 6am this morning uninterrupted. Which was so reviving for myself and himself. At 6 am he was having a crying spell but I was able to console him and then him and I fell back to sleep in my bed till about 8:30am when the doctors came in.
Today he seems to be himself. We have had a few crying spells but nothing like this week and he is full of babbling and sticking out his tongue, and full of those smiles that I cannot get enough of. He took a 2 hrs nap this afternoon, in which I joined him with. And this is a huge improvement because we were lucky to get him to sleep for 20 minutes this week.
Although the doctors are still unsure of why he is this way. They think it could have been a viral infections that started it and after being up for so long his body was so sleep deprived it couldnt figure out what to do with itself. I'm not sure that is completely what happened....I do think it has a lot to do with his constipation issues and now that we have got him so he isnt so backed up things are improving....but we need to find out how to fix it so it wont happen again. I told them this morning that I want to talk with his GI Doctor before we go home because it was important to get him so he is pooping before we go home and this starts up again.
Im also looking into trying to get them to redo his feeding study that told us he was aspirating to bad to drink from a bottle. The speech therapist said the last time we were here that she thinks it would be a good idea to redo it because if he was aspirating as bad as it looked the last time we would have more problems with phemonia, etc. She said growing can change things and it would be something we should get done again. And if we have it done and it looks like it has improved then we could stop putting rice cereal in his bottles and this could improve his constipation.
Well at least my little boy is feeling better and we are both getting some sleep now.
They have me feeding 70mls into him by bottle today. And the first bottle he only did 45mls but a half hour before we had just taking him off the pump (20mls an hr) and the second bottle he had the full 70 mls. Now its time to go feed him again.

Back Again

So Noah did well out of the hospital for 6 days. He was so happy and moving all around. He was better than I have seen him in a long time, and then our excitment went down hill. Since Monday he has been inconsolable night and day. We have tried everything and he was just in pain. Wednesday night we took him to the Maine Med ER because he was crying all day and night time seemed to get worse....well until we got here that is he fell asleep on the way here and stayed asleep the whole time. KIDS! He slept until we got in the driveway and again he started screaming. Thursday we took him to the surgeons office and they said his incision looked good but found that he was EXTREMELY constipated. They gave him an enema and that seemed to help until 11 pm that night and then he was inconsolable again.....falling asleep at 10pm and waking at 11pm and crying nonstop until 6am. I tried the swing, the vibrating seat, the rocking chair, mommy's bed NOTHING helped.
So Friday I took him to his pediatrician and she was no help. She told me that I needed extra services in the house because I couldnt handle my son by myself anymore.... she tried to tell me he was crying because of his ear infection (although he has had many some double ear infections and never acted this way) and she told me that it was his neurological problems causing him to be up screaming all night and I needed the neurological doctor to prescribe me a sedative for him.... not happy.... looking for a new pediatrician......
Took him to ER last night because everytime I feed him the pain seems to get worse and whether I feed through the G tube or the mouth it doesnt matter he doesnt want anything to do with drinking. They did tests, chest xrays, looked in his ears -the same one the pediatrician looked in and said was infected- but they said his ears were beautidful.... He was dehydrated and they hooked him up to an IV. Then at 3 am they came in and said...ok we want to give him 100cc more and then you can go home....ummm.... Why hydrate him with fluids, send us home when he isnt drinking bottles, hes in pain....just so monday we can come back because he is dehyrated again because he isnt eatting..... They decided to get the pediatric doctors in the hospital involved....go figure.....
After fighting doctors for 5 days and 7 hrs last night into this morning...they finally agreed that I knew my son and he was in fact in pain and maybe they should admit him and try to come to conclusions to why he isnt eatting.... and why his is not himself.....
So 60 hrs of no sleep, fighting doctors for 5 days, we are again admitted to the hospital to get answers.... not that I want to be back but I dont want to see my son in anymore pain. This last week has been hell for him, for me, and for my family. We dont want him to be suffering in pain any longer. So I will sit here until we get the answers we need.
They have him hooked to the pump right now and are doing a small amount continuously (20mls/hr). Tomorrow they are going to start increasing it slowly to find out when he cannot tolerate it anymore and then we are going to work out a schedule. They dont know why he is in pain they are hoping to get the GI Doctor in to see him, the nutritionist in to see him, and they are also wondering if maybe he just has a viral infection. But we are going to get answers this time.
Keep you all updated.
Love to you all
Beth & Noah

Home Sweet Home

Today is the day we have been waiting for. We are all packed up and almost out of here. Just waiting on a few more things. He had a barium swallow test this afternoon and everything looks good. He is feeling much better and is in a small amount of pain. And we have a feeding schedule in place that will make him comfortable until he can tolerate his normal amount....hopefully in a couple of weeks. I will keep you all updated. Thank God we are almost on our way home.
Love you All

Recovery Day #2

Noah has had a tough couple of days but is doing okay. He has been running some fevers and some of them are quite high so they have came in this afternoon and done some labs to check to see if he has an infection. They are also treating him for an ear infection. We gave him his first bottle (if you want to call it that) it was more like 20mls at around 4pm tonight and so far that seems to be going well. Tomorrow they are going to be taking the epidural out and we will see how he feels then. Today he seems a bit more cranky but is much more awake than yesterday.

We met with a car seat specialist who is going to help find a new carseat for him because he is growing out of this one length wise. We will be able to see some demo's and see where we get with her.

We are also going to see a cranial specialist that is almost like a chiropractor while we are here to talk about the things he does and how they could help us. This doctor does manipulations of the skull and this is known to help with cronic ear infections and could even help with his feedings.

Another thing that we are going to do while here is redo the Feeding Study. The Speech therapist that works with us here thinks its a good idea. She was at the first one and thinks that if he really aspirated as bad as it showed we would have more problems with sickness. So she wants to do it again. And I would love to have it done again as well. Because part of me doesnt think he has a problem we still give him juice unthickened and he has done fine with it so far.

Well that is all for now. We have had some great nurses this time. He is doing ok. And Im tired but doing fine.

Thanks for all your thoughts and prayers. and please keep them coming.

Love you all

Beth & Noah

Recovering

As you all know Noah went in to surgery yesterday. The surgery went well and recovery was good. Surgery was at 12:45 and he was in recovery at 3:15 with no complications. He had a small siezure while in the recovery room but it was controlled and seemed to be his ordinary siezure and nothing new. We came back to the room around 8 pm and he was very good all through the night. They have him on an epidural and some morphine for pain and he seems to be comfortable. Mommy is not leaving his side and we are both doing fine. He still cannot eat he will begin liquids tomorrow- starting at 2oz every 3hrs. If that goes well Saturday we will try 4 oz every three hours. Thanks for all the prayers and keep them coming for a quick healing.
Back to my little pumpkin. Keep everyone informed.
Love to you all,
Beth

Rolling Rolling Rolling

Exciting news!!! Friday morning Noah figured out how to roll from his back to his stomach. Mommy has been waiting for this for some time now. And he has continued to do it ever since. Very excited.

Friday afternoon Noah was admitted to the Barbara Bush Childrens Hospital because of dehydration and malnutrition. Due to his Nissen failure he was not eatting and what he did eat he didnt keep down. Doctor thought it best to have him admitted to hydrate him and see what could be done about his surgery planned for Oct 1st. Could it possibly be moved foward.

This morning Noah is scheduled for surgery at 11 AM. They will be fixing the failed Nissan and putting a new one in. This time it is not going to be able to be liposcopically done they are going to have to open him up. Extremely nervouse this morning but thinking positively that everything will be ok. The surgery is 3 hrs long and after we will be here for a minimum of 4 days could be longer depending on his recovery. I'll keep you posted. And we appreciate your thoughts and prayers.

He has been improving with his head control and pulls himself foward quite frequently. Which has also been very exciting. We are getting there slowly but surely. And he is growing like a weed. 30 inches long and 17lbs 6 0z.

Thank you all we love you all.

August Already

So things are going good for Noah and myself. Noah is growing up so fast. I cant believe he is going to be 15 months old in 10 days. Its crazy. He is still the cuddle bug he always has been and I hope he stays that way. He has 9 (and one on the way) teeth now. He weighs 17 lbs now....Im so excited for a while he wasnt gaining but now he is. And we are progressing.
He still has trouble holding his head but is doing much better. Mommy and Noah have been playing on the floor alot lately, trying to teach him to roll. He is almost doing it himself. He will do it on soft surfaces, but not the floor. The other night I put him on the floor and walked out and he was turned the opposite way I had left him. So I stood and watched....he wont roll but he was laying there and he would pick his butt up move it and turn himself around the floor that way.
He is my pride and joy. Some days are tougher than others. Some weeks are tougher than other weeks but in the end I wouldnt change having him in my life.
Being a mother has brought me so much happiness and a reason for being on this earth. Some people ask me "how do you do it." Its not a hard answer I do it because I love him and couldnt see myself not doing it. Yes its not easy but he was given to me for a reason and he is a special little boy who I love more than I could tell anyone.
Some days I want to give up but I know I cant. Seeing him smile is what makes it all worth it. And even when I hear the word "mum" that is the best feeling in the world.
School is going good for me. I have a 4.0 average right now. Taking one class this term. Its not the most exciting class "Environmental Science" but its all the had available this term.
Still seeing Silas and things are going very well. He treats me the way I deserve to be treated. And we usually go out Thursday nights and it gives me a night to be an adult and have a little time to myself not having to worry about school or work. Its nice. And for once in a long time I'm actually happy.
Mom & Dad watch Noah alot for me now that Im working and going to school. And even though its tough for me to leave him for so many hours in a day. I Thank God for them because they are the one's Im most comfortable leaving him with. If it wasnt for mom watching him while I was at work I dont think I could leave him. He is not there responsibility and I know this and try not to take advantage of them. But the help and support that they provide are a HUGE help and I thank them and Love them so much for it. They help me to be the mother I am today. I want them to both know they are appreciated and I'm so glad that I have parents that are as supportive as they are. Thank you Mom & Dad I love you so much.
I guess that is all for now. We are doing good. Noah went two weeks without having any siezures at all. Now he is having a couple here and there mostly at night. He is gaining weight and still drinking by bottle. His lungs are great and so far we havent had to talk about feeding him with the tube! YAY!!!