Headed on the right track

Just met with the nutritionist and I am so excited. She said Weston looks great and that this is the perfect time to try working with him more on oral feeds and move him from getting 120cc's every 3 hours to getting 140cc's every four hours. She said right now he is getting 28 oz a day and when we change to the other schedule he'll be getting 18oz a day but she said that will promote appetite and make him want to eat. I am praying that this will make Weston want to eat more and explore. Its always nerve wrecking to not know if you're going to harm your baby especially when you are changing their feeding schedule but she assured me that he is going to be ok and what to watch for. I think Weston is ready for this step and we'll never know until we give him this chance.

Last night Timothy fed him some vegetable broth from his vegetable soup and Weston loved, he kept wanting more and opening his mouth big and wide waiting for the next taste. It is so exciting!

This morning while I was working with him on tummy time, I was crawling around in front of him and he was watching me and he started in the horizantal position and ended at maybe 30 degrees so he had moved which is so exciting too, he is starting to want that mobility. We are slowly getting there.

He still continues to amaze me he is still saying "dada" and "nana", so I am hoping soon "mama" will come out of that cute mouth. He is the sweetest angel.

Cold's are no fun

Last week Weston had a runny nose and we thought perhaps he had allergies. Well on Friday night he did not sleep at all unless he was being held straight up on either daddy's shoulder or mommy's shoulder. So Saturday morning we called for him to go and see a doctor to make sure everything is ok. When we go to the doctor he was running a 102 temp. and the doctor said that his ear looked a little red and swollen. She said he sounded clear, which is always a GREAT thing to hear. She gave him a strong antibiotic so hopefully that will clear up whatever virus he has. We continue to thank God daily that our son is such a strong fighter and we know that every little bug he catches and over comes just makes him stronger.

Working hard during therapy

Today was therapy day and Weston is wiped out. We are working on tummy time, trying to get him to want to crawl, he is starting to get better and tolerating it longer each time. We are also working on standing and he is really enjoying that, working on balance, he'll probably be walking before we know it. Still working on eating and drinking. He is loving to put everything in his mouth, it amazes me. He tried a pretzel for lunch today and loved sucking the salt off it if, gave him a different taste in his mouth and texture. Weston is sitting up so good and has started to try and push himself up into a sitting position.
He has another bottom tooth breaking through. So soon he'll have two bottom teeth. The other day I think I heard him make the "m" sound so maybe soon he'll be saying mama and just not dada, but I know daddy loves hearing him say it.

Our heart breaks for the Kuehl family in the loss of Kaden, he fought hard for 17 days and decided to chose wings over feet. Here is their blog: http://kadenalexkuehl.blogspot.com/

First Sunday morning church service

The most exciting time when you can first take your new one to church and show them off to everyone who means so much to you. It is especially special when your little one is a miracle and all of your church family has been praying for them from the beginning, when we found out we were expecting an angel. Weston thought church was the greatest place ever, new people, a new place and beautiful singing. Everyone is so amazed at how well he behaves and how happy he is. I told one of the ladies who made that comment that the angels gave him a lot of happiness while he was on ECMO. He really enjoys watching the song leader and our preacher, he just sits in awe, which is so amazing just to watch him watch them. I am so proud of him and how well he behaves, we just have to teach everyone else to listen to the sermon and not watch Weston, but I don't blame them they don't get to see a miracle everyday :)
We still haven't seen much change in his skin clearing up the ecezma since we changed formulas. He is still spitting up some, usually when he has taken to much to drink and gets chocked. He is doing so good though, we are so proud of him. He had some pears today only a couple of spoon fulls but every little bit counts. We have gotten him off of oxygen during the day but then at night we put him back on, we don't want to hear the pulse ox beeping all night, plus I think we worry about him needed it and us not know when he is asleep that he needs but I think he is doing fine and really doesn't need it but soon, hopefully we'll be off of it.
He is getting better at standing. I think we'll be walking before we crawl, doesn't matter to me, he is doing great :)

Slow progress...but there is progress

Well we are slowly working on eating. Weston is so picky, we are so excited that finally he is actually taking the bottle again. The most he took today at one setting was 18cc which when you think that 29cc makes up an ounce we have a long way to go but it is better than anything. We are working on spoon feeding also, and he is doing really good he takes at least 5 bites before he is done. We haven't been able to get him to take anything to solid he starts to gag once he gets it in his mouth, so that is really frustrating because he wants everything that we are eating which is awesome just wish he didn't gag. His OT said that it is just going to take time. Tonight we took out his NG tube after his last night feeding so for the first time in a long time he can sleep without it, always hate having to put it back down but don't mind :) don't want a G tube especially since he doesn't need one we just have to work.
We are also working on stand which I can't believe my baby is standing, grow up to fast, I am so proud of him. He still hates tummy time but I don't blame him.

We have come a long ways

Weston was born on the 9th of July with CDH, he was taken via cesarean section because we knew of this condition. He was intabated right after he was born and then taken up to the NICU to be put on a ventilator and for the doctors to examine him. He did really good for the first 15 hours, which his doctor called his 'honeymoon period' because at 5:30 in the morning we got the call to release him so they could perform the surgery to place him on ECMO a lung by pass machine. Which when we went to visit his surgeon he told us that if we hear the word ECMO that it is very serious and that our baby probably would not make it. We prayed and prayed. Two days after Weston's birth his surgeon performed his hernia repair while he was on ECMO, we praise God that he did. Weston had both his lungs, his right lung was there but we were not sure of its functionality and his left lung was only a nub, 20% formed. Weston only had 10% of his diaphragm formed and everything was in his chest(stomach, bowels, liver, and intestines) they were not able to close Weston completely after his surgery because he didn't have enough skin, so they had to place a patch over his stomach and then performed that surgery at 2 weeks later and were able to close him up. Praise God, Weston was successfully taken off of ECMO after a couple of attempts, he was on ECMO for 10 days. He was placed on a conventional ventilator but after his CO2 levels kept climbing they had to place him on an oscillating ventilator for 15 days and praise God his levels started to level back off and he was able to wean back down to the conventional ventilator. Weston was doing very good and the doctors were weaning him really good until he caught a staph infection in his ventilator tube and had to fight off that infection which made them have to increase his flow and raise him back up. After two months he was finally extabated and we were able to hold our angel for the first time, he was two months old. It was so amazing, to finally hold our newborn baby, he enjoyed it too. First they put him on VapoTherm and weaned him down really good and got him down to regular nasal cannulas and after two and half months he was free of oxygen and breathing room air...Praise God! After three months in the NICU we were blessed to bring our son home, it was the most exciting day, to know that God had answered our prayers and made our son well enough to be left in our care.

Weston came home in October and in November he caught pneumonia and was in the hospital for three days and we were so blessed that he was able to come home the day before Thanksgiving, we had so much to be thankful for.

We have kept Weston in isolation since he left the NICU and were getting so excited that in April we would be able to take him out because that would be the end of flu and RSV season, which Weston is really susceptible to because of his lungs. We almost made it, but the end of March Weston caught RSV and started to develop pneumonia. He stayed in the PICU for three days and on the regular pediatric floor for two, we are so blessed that he came home stronger and we know each battle(sickness) he overcomes makes him stronger. We praise God every day for our miracle our angel.

I cannot wait to share more about our angel as he grows to give others hope and to know that there are survivors. Weston is home on an NG tube he has oral aversion so we are slowly getting him to take foods by mouth. He is on a little bit of oxygen and we are weaning that day everyday. His scar is a constant reminder of how special he is and how blessed we are.