Thumb Sucker

Sunday was the day to change all of Graham's tubes. It's so strange to see him with all of them off his face. He seemed to really enjoy not having them all stuck on him so we went without for a short while.
He has a new favorite pasttime of sucking his thumb and of course we all watch on oohing and ahhing like we're watching a fireworks spectacle. It's just too darn cute!
We continue to let this little being take over our lives. He wakes up with that smile and it's still planted on his face when he goes to bed.
A couple of days after Graham's last swallow test, I decided to see if he would breastfeed. Sure enough, he did! I can't believe after 3 months of not doing it, he remembered. He's been improving by nursing more frequently and for longer periods of time. We still have the majority of his food coming from the feeding tube, but we're starting to transition away from it.
The next step toward getting our baby tube-free will be on April 27th when we go back to Riley. The pulminologist will hopefully take Graham off the small amount of oxygen he's receiving.
Our little guy needs to continue to gain weight and I think we'll have a pretty healthy baby on our hands.

Swallow Test

As you all know, Graham has been on a feeding tube since he started back on food again a month and half ago. He failed the swallow test a month ago when we were still in the hospital because he was aspirating the liquid when he drank.
We were all anxiously awaiting the test today since Graham has grown a bit and is much stronger than he was.
Well, the G-Man has proven that he is now a good test taker! No more aspirating! He is still having some difficulty swallowing, the milk pools and sometimes will start to penetrate the vocal cords (beginnings of aspiration) but will correct itself and go down the right tube.
The part Graham did the best on was the baby food. Since it's a little thicker he did better with it.
We have gotten the go ahead to start Graham on a bottle. 10ml twice a day. Now 10ml isn't that much, but it's a start and will get G aquainted with eating a new way. The rest of his feeding will be through his feeding tube. We were also given the go ahead to give him some nibbles of babyfood throughout the day as well.
We'll slowly increase the amount he's getting through the bottle based on what Graham tolerates. Another swallow test in 6 weeks!
With Graham turning 4 months tomorrow, Bill and I couldn't help but reminise on those months on the way to Riley today. We just shake our heads at what our little guy had to go through and it still brings tears to our eyes. One thing we both agree on is that we couldn't have gotten through what we did without the love and support of our friends and families. We survived because of you and I know we say it all the time, but Thank You.

Central Line is Out and Easter

Last Thursday, we went for our first check-up at Riley post discharge. It was a little strange going back, but we were in a different part of the building. My main goal for the check-up was to take out the central line that Dr. West was keeping in "just in case." Sure enough, she took it out, they were very pleased with Graham's weight gain and progress at home. We're back to Riley this Wednesday, April 7th, for the swallow test. It would be nice if we could continue this tradition of removing a tube per visit back. We'll see...

This weekend was a lot of fun! We had Bill's side of the family here for Easter. Graham ate up all the attention and captured everyone's hearts with his smiles. It was nice to see Grandpa up from Flordia. AND Uncle Andy and Aunt Kirsten from Cinncinati will be giving Graham a cousin in October!!!

Bathtime and Naptime

I was able to sneak a picture of a precious moment with Bill and Graham. This is what it's all about here folks.

We're enjoying bathtime more and more each bath. At first, Graham was a little unsure about the water, but now he seems to like the warm water and doesn't cry. Before too long, he'll be splashing around.


Friday marked two weeks home. We're finding somewhat of a routine, as much as you can with a new baby. Grandma and Grandpa have been a huge help. They pop over and give us little breaks and also watch Graham a couple nights a week since I've gone back to work part-time.
Big news, looks like we'll be seeing Grandma and Grandpa Ryder permanantly in Fort Wayne. They bought a house last week just a few miles down the road. We are so excited and I know they are thrilled to be so close to their G-Man. They don't want to miss a thing and now they won't.
Granny (Bill's mom) has had fun catching up with Graham. He always gets a big grin when she tells him about the pony she is going to get him when he gets older. Grandpa Law will be back from Flordia this weekend for Easter to see Graham for the first time since Christmas along with Uncle Andy and Aunt Kirsten.
Graham has continued to grow. We've been going to the pediatrician for weekly weight checks and G was 10 lbs. 5 oz. last Wednesday. We'll see how much he's gained this week tomorrow.
Our next Riley visit this Thursday, April 1st. We see Dr. West and I'm really hoping she takes out the central line. Updates on the appointment will be posted that night.

Fun at Home

A new season has begun and this also rings true for our family. We couldn't be more thrilled to be back to our lives at home. Graham is adjusting beautifully, a very content baby just taking in all the new sights and sounds around him.
Emma and Riley each welcomed him with a little sniff. They aren't acting at all jealous and like to be wherever he is.
The weather this week couldn't be more gorgegous. Great timing for a very anxious mommy needing to get back to her daily walks...now enhanced with a stroller. Graham loved his first walk and then a second one later the same day.
At the pediatrician today, Graham has gone from 9.9lbs Friday leaving the hospital to 9.15lbs. We should be hitting that 10lb. mark soon, we are increasing his feeding volume twice a week.
Graham's care at home is going well. We have a nurse come in twice a week to help with dressing changes of his central line and whatever else we need. He is on oxygen and the NG feeding tube, but we don't let all that slow us down. He still loves being held, but he also loves his bouncy seat and crib.
He is sleeping through the night...12 hours! It's easy to do that when you have your food shot down a tube every 4 hours throughout the night. Swallow test on the 7th...then hopefully it'll come from Mommy or a bottle.
So...so far so good. It was a very smooth transition and we're just having fun being able to do all the things we fantasized about doing for the last 3 months.
Thanks for following our journey thus far. The blog doesn't end here...we're just getting started!!!

Headed Home

Here we are leaving Riley! A wonderful emotional moment. Post to follow with pics from HOME!

Training, Tests and HOME!

It doesn't seem fair ... Mom and Dad are doing all the studying and training but poor Graham has to take the tests. The good news is that all of this testing and training is part of the preparation process for going HOME ... tomorrow!
Mom and Dad have been practicing putting in Graham's nasogastic tube that he will need for the next few weeks to get his fortified breast milk. The NG tube must be removed, cleaned, and replaced every week. They have also been practicing (on a dummy) changing the dressing on his central line that must be done once a week under sterile conditions. They will actually do the dressing change on Graham tomorrow before the trip home.
Graham's sleep test and car seat test indicated that his breathing difficulties will necessitate assistance because of something called mild obstructive apnea (different from sleep apnea). As a result, Mr. G will be on oxygen with a small flow of air (one-quarter liter/minute), and will be on an apnea alarm system during the night and when he is in his car seat. Respiration Therapy will educate us on using these devices this afternoon. An infant CPR class was taken earlier this week.
Changing the dressing on the G-Man's omphalocele was drastically simplified yesterday. The skin around it has almost completely healed, so now all that is required is a fairly large band-aid type covering.
G's care will be challenging, but we are confident and looking forward to being at home with our precious baby boy.