Our Wordle

Wordle: Rogers CDH

Friday, August 28, 2009

Oh the Places You'll go



Those are the words I keep telling Weston, especially when he is crawling away from me at top speed. He is everywhere and in everything right along with his big brother. I never thought this day would come, when you are used to your baby just being in one place it takes some getting used to, but it is so exciting at the same time, him examining everything for the first time it is so amazing.
Weston is doing good with his feeding, he has some bad allergies and they have set us back a little this week with all the snot draining down his throat but he is doing great. We are working back up to 18-20 oz of milk a day not including all the table food he is eating. It is so exciting. On Thursday we go to the NICU clinic for them to see how Weston is developing which is really exciting he is doing great and I can't wait to show them :)

Monday, August 17, 2009

Feeding is going GREAT

I wanted to let everyone who is following Weston's eating adventure that he is doing great. We haven't had a weight check so I can't say for sure he is gaining, he feels like he is :) Anyways, he is doing great on taking more and more food. He has eaten 1 chicken nugget, 2 pieces of ham and he is getting better and better at more solid food in his mouth. He is up to taking 18 oz of milk a day, which is awesome, we are so proud of him. He has come so far in two weeks, it is amazing and we know that is all because of God that he is doing so good.
Weston is also crawling everywhere and getting into everything. He is also pulling himself up on everything and we are working with his therapist to start walking, which is so exciting and scary all at the same time. My baby is growing up into a toddler like he should but it is happening so fast, usually you get a couple months to move from stage to stage not weeks. But I am so excited that we have come this far and that Weston continues to amaze us. We are so blessed.

Jenny

Monday, August 10, 2009

Eating is going great

Weston is really enjoying eating by mouth. He is getting better at taking more by bottle the most he has taken is 17 oz, which is awesome! Plus those 17 oz have a caloric intake of 41.1 per ounce so that helps. He is doing really good. He is on antibiotics for his ear infection and I can tell he is feeling better everyday plus the fact that he is chasing Quinton around everywhere. Now that he has learned to crawl that is no turning back, he shots down the hallway and is off doing his own thing. It is so exciting to watch him go and for him to take things in for the first time, I love watching the world through my children eyes. We are still working on taking more by spoon which is a work in progress since he is taking so much by bottle but hey we are off the NG tube he is doing everything on his own and it is the awesome power of God that we are seeing. We are so blessed. Life is GREAT!

Saturday, August 8, 2009

Baby Beal

Baby Jackson lost his fight with CDH and earned his wings this afternoon. Please pray for his parents Rob and Candice as they have to deal with no parent ever should. My heart is breaking for them.

Prayers for Beal family

Please keep the Beal family in your prayers. This is Jackson's 9th day on ECMO and the doctors have told his parents that his body is getting tired. It makes me so made that CDH might be taking another precious baby. Please pray for this family during this time and the minutes to come.

http://beal-jackson.blogspot.com/2009/08/prayers-needed-for-jackson-and-family.html

Jenny

Thursday, August 6, 2009

Can you hear me now?

Well we always know when Weston isn't feeling good, it is when he doesn't sleep laying flat and wakes up at night. Well come to found out this morning that Weston has another ear infection. Our poor baby, we can't seem to shake them.
He has been doing great on oral feeds, taking 16 oz a day and he was 20lbs and 5 oz at the doctor's office today so that is really exciting. So means he is gaining weight.which is really exciting. Only problem that since he has the ear infection he doesn't want to eat like he should, guess we'll give him a day and see what tomorrow holds. The other fun part is trying to give him medicines since we are used to putting them down his NG tube, he is having a fun time spitting them back out at us.

Tuesday, August 4, 2009

No G-tube for me!


We had a great visit yesterday with Dr. Mantor and we are so blessed to have him caring for Weston. God has blessed us so richly with such talented physicians.

We saw Dr. Mantor yesterday to have a consult on a G-tube and to get his thoughts and what the risks and benefits would be for Weston. He explained what he would have to do and work with. With 'normal' kids it is a complicated surgery but is easily done. With Weston it is a different story and Dr. Mantor told us that if Weston wasn't progressing with his feeds that he might of told us differently but he is taking more by mouth. So Dr. Mantor told us that he was going to call Dr. G and tell him that is 4 against 1. We are praising God that Dr. Mantor felt that wasn't the right decision for Weston. Dr. Mantor also looked a recent x-ray of Weston's chest and said that his chest looks great, no re-herniation and that he is asymmetrical and that his left lung is filling in really good. Praise God!
Update on Weston's eating he is doing good. On Sunday morning he pulled out his tube, so we decided not to put it back in to see what he could do. I will not lie it has been hard on me worrying if he is getting enough calories. But we are journaling everything and we can see how far from what he should be getting he is. On Sunday he only took 324 calories which he is supposed to get 900 calories well yesterday he took 547 calories so we are so excited. It amazed me yesterday while we were at Wal-Mart trying to find high calorie foods that there aren't many but we found some cookies, so maybe he'll like those. Weston is also wanting to feed himself and he is doing really good.
Weston is crawling everywhere, he loves going into the kitchen and pull all of the magnets off the fridge and play with the flyswater. It is amazing to see his progress.
We are so truly blessed, yesterday we also went and see two of his nurses in the NICU and one of them had told me that had a couple of CDH babies in July and neither of them had to go on ECMO praise God.
Thank you all for your continued prayers, Weston continues to grow and get stronger every day.

Jenny