Tuesday, April 30, 2013

Freedom!

Drake was freed from the hospital on Sunday morning after spending 6 nights within the hospital walls. Neither one of us got any sleep while we were staying at the hospital, so we have been quite exhausted for the last few days. Drake is still on several medications that he was taking while in the hospital, but we are in the process of weaning him down on those. He is still receiving breathing treatments every 4hrs and this is something I am hopeful we can wean down soon, too.

This past week of hospital stay was a crazy week. Brian wanted to be with us, but it was his last week in Houston and there really wasn't anything he could do at the hospital. I am beyond thankful for Drake's At-Home nurse who was with me daily at the hospital, well above and beyond her call of duty; my brother and his girlfriend who brought me necessities and food; my sister and brother-in-law who brought a baby swing to help Drake be more comfortable and drove me back to my parents' house for some much needed rest; my mom who took care of Kennedy all week and stayed with Drake overnight so that I could get some sleep, and my dad who took care of Kennedy so that I was able to rest overnight on Saturday. The saying, "It takes a village" is very true or at the very least, "It takes a family."

Brian has meetings all this week in Irving and we look forward to seeing him at the end of the week. I rescheduled Drake's Hyperbaric Treatments for this week and his ECI therapies. He needs another week of rest before returning to his busy baby schedule. It is going to take time to recondition him to home life after his hospital stay. He is very touchy and ondge, but I know with more time, love and care he will be calm and relaxed soon.

We took both Drake and Kennedy to their cranial appointments today. Kennedy is doing great and will likely only be in her helmet for another 3 weeks. Drake had a major set back being in the hospital and not being able to wear his. Luckily it still fits and we do not have to start back at square one. I know I mentioned that he is very touchy being out of the hospital, and this is making it difficult to get any "wear time" with his helmet. Our goal is to increase his "wear time" each day until we are back up to full time wear.

The voting for Kennedy in the Brookshires Baby Club goes through Friday, May 3rd. You are allowed one vote each day. Please use the link below if you would like to vote for our little chef!

http://brookshires.promo.eprize.com/babyclub/





























Friday, April 26, 2013

A Long Week

Having a sick baby makes for a long week no matter where you are, but being in a hospital seems to extend the week. It's hard to believe Drake and I are about to spend our 5th night here at Medical City Children's Hospital. We are both ready to be discharged and reunited with Kennedy and Brian. Brian had planned on spending the night with us at the hospital tonight but he is feeling a little under the weather. He's pretty sure it's just allergies, but that's not a chance we can take. We'll just have to wait a little while longer before we get to see him. At least we have FaceTime.

We are beyond fortunate to have Drake's At-Home nurse! She has gone above and beyond for us this week like she always does. She arrived every morning at 7am with coffee and stayed with us until 9pm M-Th. She even came up here this afternoon on her day off and brought lunch to spend some time with us. She has made our hospital stay much more bearable.

Drake is doing so much better! This is absolutely wonderful and makes me incredibly happy. I'm frustrated at the same time because I know he is ready to be home where he can get some much needed rest, but they are not ready to release him. I completely understand where the doctors are coming from, but they don't know our little Drake on a good day. He has CLD (Chronic Lung Disease), paralyzed vocal chord and a nasally breathing sound. 100% for Drake is never going to sound like 100% in your average baby. Drake's pediatrician called to consult with his hospital doctors and I think they have a better understanding now. I haven't been told that we will be discharged tomorrow, but I have been told it is possible.

Drake has been getting quite a workout in each day as he puts up a fight against every nurse, respiratory therapist and PCA who come into his room. Each new person is taken by surprise when they realize just how strong he is for a baby. I think he is constantly on the lookout for medical staff, but because of this his head and neck control have really improved! I wish this had improved under different circumstances; regardless, I am still happy for this milestone. He has also getting better control using his hands, especially his right hand. When he was in the bouncy seat last night, he was using his hand to interact with the toys. Earlier tonight when I was fixing his cannula on his little nose, he reached up and grabbed my hand to move it away. This is definitely a 1st!!! I have also seen him swat at the RTs when they are giving him treatments. He's definitely our little fighter.

Kennedy is continuing to improve every day at Gran and Poppy's. They said she is really missing Drake and me. When Gran said she was playing with her bottle, she wasn't kidding. She blew bubbles into her bottle yesterday. This was a 1st for her, and I'm pretty sure this is not a typical behavior for a baby. We sure seem to have some unique babies!

Below is a picture of Kennedy in a little chef hat surrounded by groceries. We entered this picture into the Brookshires Baby Club photo contest. The winner gets a $10,000 savings bond so we thought it was worth a shot. Her photo has been chosen as a finalist! You can vote from the link below. One vote per day is allowed through May 3rd. You have to create a brookshires username and password in order to vote, but it only takes a second :)

http://brookshires.promo.eprize.com/babyclub/




















Tuesday, April 23, 2013

10 Months Old & In the Hospital

Drake and Kennedy are 10 months old today! It is bittersweet because I am not able to enjoy this day with them at home together. On Monday our pediatrician sent us from her office in Tyler on to Medical City Children's Hospital in Dallas. Gran met us at he hospital to pick up Kennedy before Drake was admitted. They did a 4hr breathing treatment on him and followed that with breathing treatments every 2hrs. Maybe by tomorrow he will be able to move to treatments every 3hrs. He is currently being giving 2 types of breathing treatments, steroids, nose drops and they added an inhaler today.

Overall Drake had a better day today than he did yesterday. Only one poke for blood this morning and his CBC looked great! This confirms that he is battling a viral infection and it has been tough on his little lungs. On a bright note...they were able to wean his oxygen support down from 2L to 1L! I am hopeful tomorrow will bring even more progress with weaning him down closer to his normal level of 1/8L.

We are praying for this to be a short hospital stay! It is hard on both of us to adjust to hospital life again after becoming accustom to being at home. I'm back to holding my precious baby boy with a tangled mess if wires, tubes and leads. This feels like déjà vu...a rewind to last summer. I know that "this too shall pass." Praying for that to be sooner rather than later.

This virus is tough on our little fighter and his lungs, but we know we are in good hands. Kennedy is battling the same virus but it looks very different on her. Gran and Poppy are giving her breathing treatments and alternating Tylenol and Motrin. I'm glad that this seems to be helping. I'm ready for two happy and healthy babies again!

Gran brought Kennedy down to Dallas for a cranial appointment this morning. Since our sweet At-Home nurse was here with us in Drake's hospital room, she stayed with him while I went down to grab a quick hug and kiss from my baby girl. She was very surprised when she saw me! I can't wait to be back at home with both of my sweet babies...oh, and with Brian too!



















Friday, April 19, 2013

Marching On...

Our long awaited March for Babies is tomorrow morning in Dallas. We have been looking forward to this walk for months! This week we reached our Team goal of $3,000!!! Way to go Team Drake & Kennedy!!! Two weeks ago we were cleared by our doctor to participate in the walk, and all of our plans were set. Finally, our 1st BIG outing! I should have learned by now that things with Drake and Kennedy never go as I have planned. Drake developed a cough on Wednesday and then started running a fever on Thursday. The pediatrician said we could come in on Thursday or Friday morning, it was my call. I decided we couldn't take any chances, so we drove back to Tyler from McKinney and went straight to the doctor's office.

His temperature was 101.5 at the doctor, and we gave him another dose of fever medicine. She ran a CBC (Complete Blood Count), did a flu test and an RSV test. The CBC results were in before we left and everything was good! Since Drake's absolutely wonderful nurse followed us to Tyler and was staying the night with us, our doctor let us come home rather than admitting him. She gave us strict instructions that if his respirations went over 60x minute for longer than a 1/2 hour, then we would have to admit him. Drake's nurse and I took shifts with him during the night, and he rested peacefully. He slept in his swing in the living room hooked up to his pulse-oximeter. This was the first time he slept in a different room than Kennedy, and she definitely noticed. Once she goes to bed at night, she sleeps until morning...but not last night. She woke up about 1am, and she knew she was alone in her room. When I went in to get her, she had alligator tears and she clung to me like glue. I rocked her until she fell back to sleep. I know waking up crying and wanting to be rocked back to sleep is typical for some babies, but this is not at all like her.

This mornings visit to the doctor brought some much needed good news...both the flu test and RSV test were negative! It is wonderful that he does not have either of those but he does have a virus, and he is very sick. I know, I know, babies get sick...but the way a virus effects a micro-preemie is quite different than a virus on a full term baby. Yes, even an almost 10month old micro-preemie is still plagued by the effects of being born too early. We have added a steroid twice a day to his meds, are continuing with breathing treatments every 3-4hours and alternating Tylenol and Motrin every 3-4hrs as well. We were sent to get chest x-rays because his chest had a crackling sound, but luckily the X-rays looked great and his lungs are clear! This means it is not pneumonia!

We are sad that we will be missing our 1st March for Babies, but we will just anticipate our walk next year together, and it will be even more special! A BIG thank you to everyone who contributed to helping us reach our goal! Also, we are thankful for our family members who will be representing Team Drake & Kennedy tomorrow at the walk in our absence.











Tuesday, April 16, 2013

Warmer Weather

Even though our weekends at home are short, the warmer weather has made them even more enjoyable! Although any time we are able to be together at home as a family is truly a blessing warm, cold, rain or shine. Brian and I took Drake and Kennedy on their first walk down our road to the marina. It wasn't busy when we were there, so our anxiety level of being in public with them wasn't quite off of the charts. We even sat for a little bit under the covered seating area and enjoyed being by the water. Drake was content in the stroller hooked up to the rest of his feed; although, he was wide awake and very alert taking in his new surroundings. Once the stroller stopped, Kennedy wanted to get out and look around...she doesn't miss a beat!

We headed back to Gran & Poppy's on Sunday so that I could attend a baby shower for a childhood friend. I'm happy that I was able to attend and visit with friends who have been such a wonderful support system for our family. I wish we had been able to spend more time with Brian, but we will soon! On May 1st Brian will be switching markets from Houston to Dallas! After 2 & 1/2 years of him working in Houston during the week and home on the weekends, we are ecstatic about being closer to home!!!

Drake's amazing nurse moved to Dallas at the end of March to be with her husband, which is completely understandable...she is a newlywed as of December 2012. We were sad to be losing her, but things have worked out with our schedule so that we can keep her! Since Drake and Kennedy have weekly appointments in Dallas, we are continuing with our weeks in McKinney (Monday morning - Thursday afternoon) and our weekends at home (Thursday evening - Monday morning). Drake's nurse is with us Monday - Thursday in McKinney. I have rescheduled Drake's weekly OT appointments to Fridays at our home in Tyler.

Drake has been interacting more with his toys, and he has been doing a wonderful job of letting us know what he likes and does not like. He is very aware of his surroundings and wants to be around us. If he thinks he has been left alone in a room, he will get upset and pouty until he can see or hear someone and know he isn't alone. Kennedy is all over the place! She is very close to crawling, and we are in trouble once that happens. She sets her sights on something and consecutively rolls until she reaches her goal!

Saturday will be our 1st walk for The March of Dimes as our Family Team - Team Drake & Kennedy! Only 4 days left to help us reach our goal!

http://www.marchforbabies.org/s_team_page.asp?seid=2031392&bt=15