We have found so much laughter in our home with Baby GL these last few weeks. His spirits are so great. I even made my first attempt changing his g-tube button, which I have been avoiding for weeks. It's a daunting thing to think about. This button goes into his stomach so when you take it out he has this exposed hole. I managed to have my husband distract Baby GL while I deflated the mushroom that kept it in place in his tummy. The mushroom, which is just a balloon, is filled with about 4cc of water. So, syringe the water out, slowly wiggle the old button until it comes out. Difficult task when Baby GL is squeezing into his stomach, contracting the muscles. I can't imagine this is the most comfortable feeling for him. I managed to get it out and getting the new one in wasn't bad. It was just get through those contracted muscles and tissues. Once in, syringe back in about 4 cc of water and POOF! We're done! Now we hope the next time it comes out it's out for good.
Unfortunately, his eating habits lately haven't shown us he'll be getting that tube out anytime soon. He finds playing with the bottle more entertaining than drinking it. He bites down then throws out a giggle an he knows you're watching. It's out never ending battle, but it's also so darn cute.
Last night I had Baby GL laying tummy to tummy with me. I tried tickling him in his rib cage area and he reacted with the largest smile and tuck of his head. He was so so cute! When he laughs he opens his mouth wide and then drives his head down into his hands. Every time I tickled him he did it so I think he has realized something new. That's the first time for tickling.
The greatest thing that makes me laugh with my husband and him is when he changes Baby GL's diaper. Baby GL loves to press his feet into the floor to arch his back and lifts his head like he's looking behind himself. Well, this is how he moves. He jumps, jumps, jumps until he managed to get himself off his play mat and across the floor. I've learned to put a blanket down next to the play mat and make him skooch himself to the play mat. He proves to me over and over that this is not hard. Well, now when my husband changes his diaper he jumps and skooches himself out of the diaper before my husband gets it fastened. It takes him many tries until he finally can get that diaper on him. He hasn't learned to move quickly like all us mother's of the world. Daily, Baby GL shows us something new.
Today, I decided to introduce Baby GL to the shower. It's bath day so why not try the shower. Mommy and baby bonding time. I took his oxygen off so not to make it an obstacle course in there. I thought he may cry with the running water on his back, but he really seemed to enjoy it. He looked for where the water was coming from and just took it all in. I think he enjoyed being upright for the shower, as well as Mommy having to hold tight so he didn't slip out of my arms.
Our next thing on the agenda will be Monday. We'll be having another swallow study to see if we've beat the aspirating. Baby GL has been taking a bottle really well and shows us, by coughing, if he aspirates some. That's a great sign and shows us he reacts to correct the aspirating.
Unfortunately, his eating habits lately haven't shown us he'll be getting that tube out anytime soon. He finds playing with the bottle more entertaining than drinking it. He bites down then throws out a giggle an he knows you're watching. It's out never ending battle, but it's also so darn cute.
Last night I had Baby GL laying tummy to tummy with me. I tried tickling him in his rib cage area and he reacted with the largest smile and tuck of his head. He was so so cute! When he laughs he opens his mouth wide and then drives his head down into his hands. Every time I tickled him he did it so I think he has realized something new. That's the first time for tickling.
The greatest thing that makes me laugh with my husband and him is when he changes Baby GL's diaper. Baby GL loves to press his feet into the floor to arch his back and lifts his head like he's looking behind himself. Well, this is how he moves. He jumps, jumps, jumps until he managed to get himself off his play mat and across the floor. I've learned to put a blanket down next to the play mat and make him skooch himself to the play mat. He proves to me over and over that this is not hard. Well, now when my husband changes his diaper he jumps and skooches himself out of the diaper before my husband gets it fastened. It takes him many tries until he finally can get that diaper on him. He hasn't learned to move quickly like all us mother's of the world. Daily, Baby GL shows us something new.
Today, I decided to introduce Baby GL to the shower. It's bath day so why not try the shower. Mommy and baby bonding time. I took his oxygen off so not to make it an obstacle course in there. I thought he may cry with the running water on his back, but he really seemed to enjoy it. He looked for where the water was coming from and just took it all in. I think he enjoyed being upright for the shower, as well as Mommy having to hold tight so he didn't slip out of my arms.
Our next thing on the agenda will be Monday. We'll be having another swallow study to see if we've beat the aspirating. Baby GL has been taking a bottle really well and shows us, by coughing, if he aspirates some. That's a great sign and shows us he reacts to correct the aspirating.
Hi Alyssa-
ReplyDeleteMy name is Courtney and I was sent the link to your blog from a friend of my sister's, Janet Liska. Our daughter, Lyla, was born at 31 weeks weighing 1lb 6oz and 10in long. I was so inspired to read your blog. We have shared a lot of the same ups and downs. Many of your entries hit very close to home for me. We are currently still dealing with a feeding tube(aspiration) and home oxygen(chronic lung disease). I am so looking forward to the day that I have a "cordless" baby :) I am trying to just enjoy her though and not try to wish her baby days away. Before we know it they will both be running around and getting into trouble. Lyla is now 5 months old and 7lbs 4oz 19in long. The joy that she has brought us in immeasurable. I look forward to reading more of baby GL's accomplishments...I know how every small step is a big victory :)
God Bless you and your family.
Courtney
Courtney,
ReplyDeleteMy son was growth restricted and small for an average 26 week baby so I can't imagine how terrifying it was to see your daughter so small at 31 weeks. The growth your daughter has had in 5 months is tremendous. Our son came home after 6 months in the hospital at only about 6lbs so Lyla sounds like she is growing very well. I'm so happy that we can share our story. I really enjoy hearing stories of other miracle babies, which Lyla obviously is a true miracle. I, too, am waiting for the days without tubes. I think the oxygen will come soon, but the feeding tube may be a bit longer. Enjoy every moment you have with your daughter. I still look at my son in total amazement. Thank you so much for sharing your story.
Lyla will be added to our prayers.
Alyssa