Monday, March 29, 2010

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.

Wednesday, March 17, 2010

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 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. 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!!!

Monday, March 15, 2010

Headed Home

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

Thursday, March 11, 2010

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.

Saturday, March 6, 2010

The H-Word

We have learned over the past three months that nothing about Graham is predictable. He is a man on his own schedule. But given that, we hope to make the trip home sometime this coming week. The perfect scenario, however, is not going to happen. Graham's swallow test yesterday did not go as well as anticipated. The fluoroscope showed that when Mr. G swallows breast milk, he aspirates a bit. This means that he must continue to get his nutrition through the NG (nasogastric)tube. We will continue this feeding process when we go home and will reevaluated in about four weeks. G is up to 70ml of fortified breast milk every four hours and is gaining weigh every day. The docs will continue to increase his intake, in 5ml increments, to the desired 90ml. Because of this increase in breast milk, Graham is almost completely weaned off his TPN, which means his central line can be removed soon.
Graham may also go home with a breathing assist. His fast breathing rate is still a problem and may necessitate oxygen through a cannula.
These interrelated breathing and swallowing problems are a reminder of how much our Graham has gone through. His lungs were seriously damaged and they simply need more time to recover. He was also on a ventilator for five weeks, which meant those muscles involved in swallowing did not have a chance to develop properly. Luckily, all should heal in time.
Happy Birthday, Katie!

Wednesday, March 3, 2010

Chubby Cheeks

Big things are happening here at Riley for Mr. Graham. First off, he has hit 9 pounds! He is tolerating his feeds (65ml/4hrs) very well. He is also latching on during non-nutritive breastfeeding! He'll have a swallow test hopefully this week to see if he remembers how to swallow. We would like to avoid going home on a feeding tube.
Yesterday, we made the move to the Infant Unit. It was an emotional move. Saying good-bye to all the nurses who got Graham and our family through so much for so long was a tearful experience. We're just down the hall from the NICU, but it's much different as far as restrictions. We were lucky to get a private room, and as you can see by the picture of Grandma and Graham, it's pretty cozy. I can spend the night, which is wonderful, but more wakeful, not because Graham is waking up, but because of nurses and doctors coming in at all hours. They take such good care of all of us here, but we're definitely ready to be home with no midnight visitors.
Hopefully, next week we'll have an idea of when we'll be heading back to Eagle Creek Drive. Perhaps just in time for some spring weather to be able to take Graham on much anticipated walks.