Tuesday, January 29, 2013

Fresh Air

This past weekend, we finally broke free from our cabin fever and took our first family stroll through the neighborhood and down to the lake. It wasn't a long walk, but it was enough to get us hooked...We are ready for Spring!!! Brian thought we were a little over excited about the walk, but then we don't get out much--and he understood.

Drake continues to do well on his feedings, and we met with a dietitian through ECI, and we will gradually increase his feedings, pending approval by his pediatrician.

Kennedy spiked a low grade fever yesterday. We've been instructed to make sure her temperature never goes above 100. Once she reached 99.7, we gave her Tylenol which eliminated the fever. She is back to her normal, feisty self and has had no other bouts with fever at this time.

They are both really having fun with their toys. Of course, they want to put them in their mouths, but this is a good developmental sign. Drake seems afraid he will have to share with Kennedy, so he pulls them into his lap for safe keeping. I am afraid this is the first sign of hoarding...something we may have to work on. Kennedy learned her first cause and effect with toys this week. She realized that in order to make the noise she wanted to hear, she had to spin the toy with her hand. It is so much fun to watch them learn and discover the world around them.

Tomorrow, Drake and I will embark on a journey to Dallas to see our ENT who followed him in the hospital. Kennedy will stay home with Gran for a girls day! Hopefully the doctor will see improvement with Drake's paralyzed vocal cord, or at the very least see over compensation by the other one. I hope to be able to share good news with you on Friday with my next post.

Friday, January 25, 2013

One Bottle Down...

Since our release from the hospital in November, we have been working with Drake on bottle feeds. His amount per feeding is 100ml and on average he has been taking about 30ml. We have been told that is excellent, and many medical professionals said it was amazing that he was taking anything by mouth. Of course we were proud, but we knew Drake would continue to improve. Oh, boy has he improved! Yesterday he completed an entire bottle!!! This past week he has averaged 45ml per bottle!

The transition from Rock n' Plays to the crib has been a process. The first night was definitely the most difficult for them and for me. None of us slept much that night. Thank goodness each night since has been a little easier. Drake has to be propped up since he is on continuous feeds at night. Keeping him from sliding down during the night while the mattress is propped has been a bit of a challenge. Little Miss Kennedy rotates during the night and it is quite amusing. When I check on Drake and change his feed around 2:30am, she has managed to rotate herself a quarter turn and is laying sideways in her crib. Then, by morning she has made another quarter turn and her feet are now where her head was when we put her to bed. This has happened every night since she moved to her crib.

Both Drake and Kennedy have been very interested in their toys lately. I got another one of the balls they love; now they both have one. Kennedy had so much fun playing today that she fell asleep sitting up holding a toy. Drake loves his paci but Kennedy has not been interested in one since we left the hospital. She prefers her fingers and her hands; however, this week she discovered her thumb...yes, we have a thumb sucker. We have tried to discourage this and distract her with other things, but this seems to be a losing battle. Especially when we check on her while she is sleeping and she has her thumb in he mouth.

Tuesday, January 22, 2013

7 Months Old

The time has flown by since we left the hospital, and tomorrow Drake and Kennedy will be 7 months old. Of course since they were born at 25 weeks, we are not at the typical 7 month milestones, but both are progressing nicely for their adjusted age. I always get confused as to the way the adjusted age is calculated, but they are somewhere between 3 & 4 months. Both babies are right at the 12 lb mark, and both wear 3 months clothes now.

Kennedy is very social and seems to be a true 7 months old in these skills. She talks up a storm, and she does not like to be left out of anything. She smiles all the time, and she knows her name. She rolls over, sits and stands upright with little assistance. She tries to help hold her bottle, and she holds toys and her lovie. She is really reaching for toys these days.

Drake is a little more shy, socially, than his sister. He is totally aware of his surroundings and who is in the house. He knows his name, and he knows voices of those who care for him. He truly loves to be held. He always seems to be lounging in a comfortable position. Drake is beginning to take more of his bottle by mouth, thus his time on the feeding tube is less than before. He is gaining neck and trunk control, and he holds on to toys.

Tonight is a big night in The Gilstrap Home--the babies are moving to their cribs from the Rock & Plays in which they have slept since we came home in November. I certainly hope they sleep as soundly as they normally do.

Brian and I feel that both babies are growing and developing well, and their pediatrician is in agreement, also. I love going to doctor's appointments and seeing them in awe of the progress of both babies. We have definitely come a long way from June 23rd, and everyday is a new adventure. We feel that we are a very blessed family!

Friday, January 18, 2013

Home Sweet Home

Boy does it feel good to be home even though Drake and I were only gone for one night. Everyone at the nursing home was very sweet, but it still had an institutional feel. Being back home is always the best feeling...especially now that Brian is back home, too!

Drake slept so much better last night back in his room. I slept much better last night myself. While we were in the nursing home, he very much preferred for me to hold him constantly. I can't blame him, it was a new and unfamiliar place. If I slightly moved, he was not very happy with me. Below are a set of four pictures showing the looks I received when I moved and he woke up.

Kennedy was all smiles when we were back home. Although, she is all smiles the majority of the time anyway. She and Gran had a fun girls "slumber party" while we were away.

Tuesday, January 15, 2013


Returning from our much needed travels, we rushed through the door of Gran & Poppy's to greet our little angels. Our homecoming was not exactly what I had played out in my mind during our flight home. Apparently they are not quite old enough to be over the moon with joy upon our return. Soon enough they will be, and I know that will feel amazing! Our dogs on the other hand were bursting with excitement to see us again!

Our journey home last night was smooth sailing. Both Drake and Kennedy slept the entire drive, and they were wide awake once we arrived home. I changed diapers and fed both babies while Brian unloaded the car. They both went to bed easily and slept great throughout the night...could I be lucky enough for this to happen again tonight?

After a stressful few weeks and numerous phone calls advocating for our son, the approval finally came through for Drake's MDCP (Medically Dependent Children's Program). We will be doing his overnight stay in the nursing home tomorrow night, and beginning on Thursday he will have his Medicaid back in place. This will reinstate his home nursing that we lost due to our private insurance denying coverage. We are ecstatic that we will be keeping our beloved nurse! My mom came in town today, and she will be staying here at our house with Kennedy while Drake and I spend the night in Gilmer at a Nursing Home. Calling around to find a facility willing to take us for one night was challenging and I was met with vastly differing pricing. On one end of the spectrum a Home was charging $700 for one night while on the other end a different Home was charging $125. Wow! I'm glad that I called around!

I am ready to get this over with and have Drake back home and away from germs. While staying overnight in a nursing home is not ideal, it is a small price to pay in order to get our son what he needs. We lived 140 days in a hospital...I think we can handle one night in a nursing home.