Happy New Year

Hello Everyone!

I hope all had a wonderful christmas and I hope everyone has a wonderful New Year. Noah is striving. We have had an issue with Gas and not being able to get some gas out of him. Because if the Nissan surgery he cannot burp therefore when he has gas we have to vent him using his G Tube. Sometimes lately we cannot get it all out and he is having spells where he is in alot of discomfort. But we keep working on it and finally we can get it out for him. But the good news...the great news it WE HAVE NOT HAD TO USE THE TUBE TO FEED HIM FOR 3 WEEKS! Thats right Noah is finally drinking ALL of his bottles without a fight. In fact he is drinking more that the 100mls that he is expected to drink. More like 120 to 130mls. He doesnt want to stop drinking now. He is back to having cereal mixed with fruit now at bed time and occassionally in mornings too. He also is drinking juice because there are some days where he doesnt want to stop eatting. He has occasions now where he tries to hold his own bottles too. :) Physically therapy is working with him lifting his head...and although he still doesnt like tummy time he is doing much much better holding his head up. We are on our way! Its exciting to see hsi progress.
The rest of his blood tests come back on Jan. 17th and I am holding my breath and praying. I cannot take anymore bad news. So keep praying the prayers are working.
Hope this finds you all Happy and Healthy!

A Cup of Good Cheer!

Just to give everyone a quick update. Noah has had a double ear infection for the past week and 1/2. So things have been a little more complicated. But after the first medication was not effective they put him on something a little more stronger and that seems to be helping. Physical therapy is coming in once a week and working on his head control and he seems to be really improving on holding his own head up. He is gaining more weight and is beginning to become that chubby little baby we have all waited to see.
Christmas is coming and the tree has presents under it already for the little guy and myself....cannot wait for Christmas morning to spend with the little guy.
That is all I have at the moment. Please keep the prayers going and thanks for everyone's support I couldnt do it without all of you.
Love to all.
Happy Holidays!
Beth & Noah

Two Posts in One Week

Two posts in one week you all must be proud!

Noah is doing well. I have dropped his feeds to 100mls right now until he gets over his ear infections. But he is gaining weight. Very exciting he has outgrown his 3-6 clothes and now is wearing 6-9 clothes and they actually fit him! All the prayers are helping.

I'm very excited for his first christmas...been putting him in cute little xmas oufits the last few days. Took some pictures with him today. He loves to look at the lights on the tree...and he is becoming more vocal when awake. Working on his neck muscles giving him tummy time. He doesnt like it very much but we have to get those muscles working.

He has moved on like I said in the last post into size 2 diapers....I thought we were going to be in 1's forever. But he is so much more alert now and talkative. He still doesnt know what sleep is. He is still getting up quite a bit. Right now we are going through a stage where he doesnt want to sleep in his crib he wants to be with me. That isnt going to last because although I love the extra cuddle time...I get better quality sleep when I'm the only one in my bed. But lately it has been either let him in or spend all night fighting with him. I'll chose the getting a little sleep.

Other than that everything is going well. Its a little more work with this pump but so worth seeing the improvements. Thanks to all that is praying it is so helpful. And we need all the support and prayers we can get. The lord hears us! I just know everything will turn out ok. I just gotta have faith!

I'm trying very hard to keep everyone updated and trying to get on as often as I can. But between work and home life it gets a little hectic sometimes. Dont stop checking because I'm not going to stop typing!

Love to you all!

Road less bumpy!

Well my little man is doing pretty good. No scares lately. Well thats kinda a lie, but that is a long story....but Noah is doing well. He has a double ear infection right now that we found out about on Friday because he decided he couldnt drink the 110ml's and was fighting us again. So Grammy took him to the DR.'s office before they closed (mommy was at work) and the DR said both ears where red. Later that night (here comes the scary moment...all brought to you by mommy) Friday night I went to put Noah in his crib for bed and as I lifted him into the crib I caught the G Tube between me and the crib without realizing it and when I layed him down yanked it right out! He screamed and I got upset....and we couldnt get it back in. So we ended up taking a trip to SMMC to have a DR put it back. And let me tell you that the DR's say "oh its easy if it happens just put it back in..." That wont happen. You really have to push and the DR doing it said I wouldnt have got it in myself because he gets upset and pushes with all his might his stomach out and it was really hard to get it back in. I felt like the worlds worst mom! Let me tell you.
But he is doing well.... in 6-9 clothes now and Size 2 diapers! Very excited! Got his 6 month pictures done. Wouldnt smile for mom but the pictures are adorable!
Love to all! Keep those prayers going..... Mommy is praying for miracles!

A Somewhat Normal Life!

We have made it- I think! No hospital visits this week. We enjoyed the holidays! We have Noah's first Thanksgiving feast at our Aunt Cheryl's...which was delicious. Noah tried Cranberry sauce and first bite he liked the next bite he decided "Not so much" LOL! Then Saturday Noah celebrated his first Christmas with my dad's side of the family. Was a whole bunch of fun. He got a couple nice videos and some toys....
Doing much better with the feeds....he is back up to 110ml. Drinks by bottle and by pump but he is getting the nutrients. Physical Therapy came in yesterday and Noah held his held up while on his tummy for 3 full minutes...it was exciting!
Well...off on the road today. Just wanted to catch up!
Love you all

Another Weekend at MMC

So everyone My little man was doing so well....up until Thursday. Thursday we went to the Pediatricians and well besides all the good news like HE WEIGHS 13 POUNDS NOW!!!! And the Doctor was so impressed by the improvments he is making....and everything WAS going well.............then they gave him his 6 month shots....all 5 of them....including a flu shot. Thats when things went downhill....and ended us right back into the Childrens Hospital Saturday night. (First the Emergency Room and then the Childrens Hospital) Thursday night Noah decided to scare his Grampa and he started Retching after his feed while I had ran to the store. He cannot throw up due to the Nissen surgery so he kept Retching and Retching. Well....then he began starting to get fussy everytime we got his feed up to 40ml's....and then Saturday as I took off for a baby free day to myself. I got to Desiree's and mom called Noah had Retched again after his feed and when she went to vent his tummy through the G tube....it was like he was throwing up through the TUBE it went everywhere and then it "started coming from down below :)" enough so that he needed a new outfit! So mom called me and I called the DR. They said bring him to Emergency and get him checked out. So we did.
While at Emergency they put 110 ml of dye into his G tube so that they could xray and make sure the tube was in the right spot. Well after the xray he got really really fussy and again started retching.....
Thats when they decided to admit him back into Barbara Bush till he could handle his feeds without retching. They hooked him up to an IV of fluids and decided to give his tummy a break. If he keeps retching he could undo his surgery and we would have to start all over again so this is our best option. Not the option I wanted but our best one.
This morning around 12am he acted very hungry so they let me give him 50ml of Pedialyte. That stayed down ok. So they continued to let me give him a little every once and a while. He kept it down everytime. All his xrays they have taken and his barium test this morning came back fine so they think he is just having a reaction to his shots. They just let me give him what he would take by mouth of formula and he took 2 ounces. Next feed we are going to give him a bottle and let him take as much as he wants and then pump the rest and if he keeps it down....we can go home again!!! Crossing fingers!!! Man I'm tired of this place!!!

Well I'll keep you updated!

Oh, by the way he also went to the eye doctor on thursday and he looked in his eyes and said that everything inside the eye looks good(sigh of relief) and he might be a little near sighted when he gets older but everything looks good. YAY!! Some good news at least!

No Place Like Home

There is absolutely no place like home and WE ARE HOME! We came home yesterday after stopping at Olive Garden's first of course. He is doing better. He is a total different baby. He smiles more, and talks, and last night let mommy sleep. He got up once at 3am had a bottle and went back to sleep and slept till 7am! So excited! I'm glad we went. I'm glad we got our answers. And even though it was a hard descision I'm glad I did the surgery. I think his reflux had a lot to do with everything and now that he doesnt have that things are better. He is actually taking more bottles by mouth after surgery than he was before and he is sleeping better. He is falling asleep without being held...did it again this morning in his playyard....thats right he is even doing it at home! :) Mommy is happy. Now we can move on and grow up to be a handsome young man. I really think he is going to do well.
I will still keep everyone posted on here even though we are home so keep checking in for new blogs. I dont know if they will be as often but I will continue this site. Thanks everyone for your comments and support and PRAYERS! Keep them coming. You dont know how much it helps. Love you all!

~~~~~~~~~~~~~~~~~~~~~~~~~~~YAY! WE ARE HOME!!!!~~~~~~~~~~~~~~~~~~~~~~~

Home Sweet Home!!!

Finally we are going home today! I'm drinking 110ml finally and the doctors have given me the ok to go home. Its sad to leave all the doctors and nurses that I have got close to while they gave me excellent care....but at the same time I'm so EXCITED to get home. We have been waiting for so long to come home it seems like. We are all packed and waiting. We just have to wait for the surgeon to come and remove my stitches around my G Tube and then we are OUT! YAY!

Mommy is holding her breath waiting for the good news to disminish for some reason and them to say we cannot go today. I hope not but it seems like we were suppose to go home days ago and we are still here. Hopefully today! Crossing my fingers! The surgeon is in the O.R. So its just a waiting game now but.....

WE ARE FINALLY GOING HOME!!!!

We weigh 12 pounds 9 ounces now. It seems like he has lost to some of you keeping up to date on it. But that is without tubes or I.V's in his foot. So 12 lbs 9oz. We are gaining weight..... and getting heavy! Woohoo!

Tomorrow Is Just A Day Away!

Well finally the end is near....it still looks good for tomorrow. We are going home tomorrow. He still isnt tolerating 110ml. But he can tolerate 100ml which in my eyes and in the dr.'s eyes (I think) is good enough. His stomach just CANNOT tolerate the 110ml. We tried to give it to him again this afternoon and after finishing it he got really upset so we went to vent his tummy to get any bubbles out and milk backed up and wouldnt stop backing up the tube until it reached 10ml. After that he calmed right down and was fine. So that tells me that duh his little tummy cannot handle it.
This poor little guy it seems like they are just interested in pushing formula into his tiny little tummy. It seems like he just finished feeding and now they are ready to put more in at midnight!
Well I wanted everyone to know we had a good day and we should be going home tomorrow. YAY!!!

A Fresh Start

So far this morning things are going well for Noah! This morning he drank a bottle of 100ml all by himself by mouth....no tube..... which is very exciting. We are going to try to give him 110ml again at his next feed which is 11am. Hopefully he can tolerate it now that his stomach is used to 100mls. Also this morning Mommy was able to cuddle her baby boy on his belly. He didnt even fuss. I've missed being able to do that but it seems like he may not be in as much pain anymore. YAY! I didnt want to let him go. Its been 4 whole days since I've been able to cuddle with him.
Tomorrow is the day I cannot wait. I'm not sure what time we will be getting out of here. The surgical team needs to do a post operation check on Noah and take some of his stitches out before we can go home. Then we are out of these doors and hopefully never have to come back.

Lots and lots of appointments set up after we leave.....going to be a very busy mommy I guess. But he is worth it all. God, I love him so much. This has been a stressful and scary few months and weeks but it is good to know what has been going on and what to expect and try to overcome. Thank goodness the end and the beginning is so near!

Baby Step Backwards

Well right after writing the last blog after telling everyone that Noah could tolerate his 110ml he ended up not being able to do it. He got very cranky and when we tried to see if he just had bubbles in his belly his tube ended up backing up with fluid cause his tummy was too full. So we are back down to the 100mls. Which isnt to much of a big deal. Hopefully he will be able to go home Sunday. I'm crossing my fingers and praying....Let me out from these walls. LOL!
Just thought I would update everyone before bedtime. Please pray that I stop this cold before it comes full force too. Noah doesnt need anything else to deal with. I've been taking cold and sinus meds and Airbourne today...lets hope I've stopped it. Exspecially since that Airbourne stuff tastes so nasty! :) lol

Here a little while longer....

Noah is doing much better today. He has started drinking more he just finished 110ml at 3:00pm today. He seems to have tolerated it ok. The next step is to up the calories in the formula and see if he can take 110ml still. The doctors have decided to wait until Sunday to discharge us. Which is a real bummer but at least they want to make sure he is 100% before sending him home. Then we are off to our house and then there is going to be many many doctors appts and home visits. But anything to make my little guy get better and better and work to his full potential.

Some of his Chromosome blood tests came back today testing for Down Syndrome and Miller-Dieker syndrome and they both came back normal so he doesnt have those. Which is great news! As we get more results I will let you know!

Later on today the IV is coming out!! He is no longer on any IV drips!

Its been an exhausting couple of weeks as you can tell from the picture. Noah and I are just ready to nap I think.

Made it over the Bump!

Well we have had a rough day MR. Noah and I. But we have made it over the bump in the road. At about 6pm I realized that this morning I thought I would try and take the easier root and use the ready to use formula instead of the powder. Well I got to thinking that maybe he wasnt agreeing to that ready to use stuff..... and so we switched back to the powder half way through his feeding when we got to the 40ml mark and he started crying and miraculously he ate 30mls more. Tonight the objective is 80mls and I know that we most likely will be able to hit that mark if everything goes well. However unfortunately like I said before I dont know if this will set us back or not for going home tomorrow considering that they want him to have 110ml but we will wait and see.
But at the end of this evening he is doing better. Laying Grammy and Grampa's arms tonight he has settled right down and is the happiest and most content baby as we speak.
On the Road Again!

A Bump in the Road

So after waking up this morning and doing so well. We have had a slight setback. It seems that Noah could possibly have caught a small bug and has decided today that he doesnt feel well and therefore doesnt want to eat. We get 40ml into him and he starts crying like he is very uncomfortable so we console him and hook him up to his pump to pump the rest of the 40ml into him and he screams while we try to do that. So we have hit a bump in the road. Without catching up to his 110ml they wont let us go home...so hopefully this will change....but going home to my own bed tomorrow night is not looking so promising. Poor little guy hasnt he gone through enough this week. We will get there though.
Thanks again for the support. I also want those friends who have sent me comments who have seen the website from my myspace right now unfortunately I cannot get into my account from the hospital computers but I thank you very much for the support it means alot. I will write to you soon. And if you want me to reply sooner please email me your email address. Would love to have your addresses so that I could write you.
Thanks Again. We will get through this stop light soon. Its just something that happens I guess. Keep praying - prayer is the best medicine.....
Love to All
Love
Beth

After Surgery Night 2

Well last night was 100% better than the night before. Except for the nurses LOL! but Noah is feeling better I think. He still is a little sore when he is moved but not nearly as bad as yesterday and the night before! He is drinking more and more as he feels better. We started off with 30ml yesterday and by the end of last night and the beginning of this morning he has been taking 70ml. Our goal is 110ml so we are well on our way! He was also weighed last night with a shocking result of 12 pounds 15 ounces!!! EXCITING!

I cannot believe it this morning- as I write this he is sleeping in his crib. Usually he has needed to be rocked or bounced to sleep- at the very least held....well Mr. Noah fell asleep playing in his crib this morning. I'm shocked! Maybe we ARE well on our way to happiness and health!

Cannot wait to get out of this hospital (hopefully tomorrow) the hospital staff is really getting on my nerves. But I am so happy that he is feeling better and we know what is going on. Although it wasnt the best results to find out we have our answers and now we have a sollution to his failure to thrive. And he is going to be fine, all that matters is he is here and he is loved.

Thanks so much everyone for your support. It helps knowing we have the support and love you have all given us and are still giving us. I couldnt do this without all of you.

YAY!!!! He is finally making progress everyone! I have been waiting for this for months!

After Surgery Night 1

Last night was a nightmare for myself and Noah. Noah was very uncomfortable. He was up most of the night crying. At about 2am I had enough and I called the nurse in. The residents came in and decided that a small dose of morphine would be good. I dont think that they gave him very much though because he was fine for about an hour and then started in again. This morning and afternoon he has still been very uncomfortable and they again gave him a small dose of morphine and it seemed to help for a bit. It breaks my heart to see him in so much pain. But I know that this is for the best. And it was the best option to do. Hopefully he will have no more reflux. We are on the better road now I think. They are thinking about discharging us from the hospital either Thursday or Friday but the nurse I had today said that she doesnt think it will be tomorrow. Noah is still not drinking what he was drinking before the surgery. He now can take a bottle by mouth but he has only done about 1-2 ounces today. They say it is expected because he has some swelling in the stomach and where they used a little bit of his stomach to do the Nissen surgery for his reflux, its going to take some time. Best of all he has no more tube in his nose!!! YAY!!!
But we are both doing as good as expected. Yesterday and last night was very stressful for me and for him as well. I am exhausted not only from lack of sleep but because of all the stress. But I'm glad the worse is over now we just have to wait for him to heel and wait to see what his road looks like in the future!
Thanks for the love and support!

Out of Surgery

Noah is out of surgery today. Seems to be doing fine. Got in recovery room and he was awake and crying but mommy took him out of his crib, held him and rocked him back to sleep. He has been sleeping ever since. Its been a long day they didnt take him into surgery until about 3:30pm and he got out around 5:30pm. The surgery was able to be done lapiscopically! My little boy is resting peacefully in his room now! Thank goodness this day is over. He cannot eat anything until tomorrow sometime. But they have an IV going that is giving him liquids! We will see what tonight brings.
Thank you for everyones thoughts and support. We are doing alright! Better now that surgery is done and over with. Now we have a new adventure to go on. So keep praying for us. We love you all.

Surgery Time

Tomorrow Noah is going into surgery for the Nissen Fundoplication (to get rid of his reflux) and the G tube surgery as well. His surgery time is 1:40pm. And they say its going to take about 3 hrs. So its a little nerve racking but everything is going to go fine...we have to think positively. And this surgery will make life so much easier. Hopefully he will no longer have reflux and maybe he will be happier during the day and sleep more at night.
Well keep us in your thoughts and prayers tomorrow. We love you all
Love
Beth & Noah

Update on my little boy!

Noah

Is going into surgery on Tuesday the 6th of November. I have decided to have his G tube put in so they are going to surgically put that in and also they are going to do a surgery to stop his reflux by sewing a piece of his stomach around his esphogus. This is going to happen tomorrow. Please keep us in your prayers. I'm nervous to let them do surgery on my little boy but it is my best option since he has to go home with a feeding tube because the doctors have trouble getting the NG tube down his nose so I know I wont be able to do it. He has done better with his bottles the last three days but still has his off times. But it is very exciting to tell everyone that within the last three days he has drank four bottles completely without having to be hooked up to his feeding machine! Woohoo!

Here is a picture of him dressed up for his first halloween! They did a halloween parade around the hospital and then the Portland Pirates signed autographs and took pictures

with the kids!

Noah's Prognosis

To all our Family and Friends,

I'm afraid this blog is not the bearer of good news. But doing this over the internet is a little easier for me to do that allthose phone calls. As many of you may already know Noah was readmitted into the Barbara Bush Childrens Hospital last Friday due to Failure to Thrive. The did some test on him and Tuesday sent him down to get an MRI. We got the results back and I'm sorry to say it isnt very good news. Noah has a malformation of the brain and it also has a cystat the back of the head. The cyst is located next to the celebrium and that controls the balance and coordination aspect. This is why he has trouble feeding because he has trouble coordinating the suck, swallow, breathe. They dont know exactly what this means for the future all they can say is that he is going to be mentally challenged, andmay not develop everything a normal baby does. Its a hard thing to say but they dont know if he ever will be able to feed from a bottle 100% by himself, that is why he is going to be sent home with a feeding tube. They dont know this means for the future it could mean he wont be able to walk, talk, etc it just depends on him. And there really isnt anything we can do but think positively, and pray They are running some DNA testing to make sure he doesnt haveany disorders, etc. They say there was nothing that Josh or I could have done to stop this it just happened early in the pregnancy! Its been a tough week and it is tough to take all in but we will get through it. Please keep us in yourprayers and thoughts. and feel free to write back with any questions.thanks for the support and love Love

Beth