Sunday, September 30, 2012

Busy Week

I've had some sad moments for the past two days, and...well...I'm human and that is ok. We have two amazing children who have already defied a multitude of odds, and we are extremely grateful for both of them. All we can do now is be there for our children, continue to hope & pray, and move forward from here.

This is a busy week ahead here in Special Care. Tomorrow morning Drake will have his swallow study. He absolutely loves to take a bottle so I hope that the test goes well so that he can move on to infant driven feeds. Tuesday, Kennedy will be having a brain sono, and as you can imagine we are a little nervous. Back in June, both of their brain sonos were picture perfect, and now we know the lasting effects of an infection in these tiny babies is devastating. We will be meeting with the developmental doctor on Friday to discuss Drake and what we can do for him. Also, this week our neonatologist will be consulting with a neurologist. We have decided to go ahead and hear what they have to say and use it as a baseline. Through our love and support we will let Drake let us know what he can do, which I know will surpass doctors expectations.

1) Kennedy
2) Drake & uncle Matt
3) Daddy holding Kennedy while rocking Drake
4) Family photo
5) Drake with a bottle
6) Together for the 1st time!
7) Daddy & Drake
8) Drake
9) Together after 99 days
10) Daddy & Kennedy
11) Drake snuggling with Daddy

Saturday, September 29, 2012

Rainy Day

Today the weather has been rainy outside with scattered showers inside as well. The news we received yesterday is still hanging over our heads like a dark storm. The comments from yesterday's blog have really helped us more than you can know. Drake and Kennedy chose us to be their parents, we are here to do a job. Drake has already defied the odds once in his life; it is our sole duty to provide him with everything he needs to continue his pursuit in conquering the unconquerable. With the support that Team Drake and Kennedy have, along with the power of prayer and our loving support, Drake will prevail!!

The doctor came in to speak with us today; we still have so many unanswered questions that can only be told with time. She is going to speak with a developmental doctor on Monday and hopefully we can begin a routine for his therapy. The doctors confirmed with us that they were caught off guard just as much as we were. By looking at him he is doing the things that he should be doing; he tracks with his eyes, moves his arms and legs, and even gets fussy. We have opted not to see a neurologist quite yet, as they will only tell us statistical data we don't want to hear. Our focus is on praying for his health, a lot of love, and dedication to his developmental therapy.

Kennedy is still doing great. She is 6# 10oz...can you believe it. She is right at 5 pounds heavier than when she got here. They both will be 40 weeks gestation this coming Wednesday. This is the time period that they do the standard brain scan. Kennedy will be having hers on Tuesday. As you can imagine, we are definitely on edge. I know we shouldn't worry, but we have let our guard down once with Drake...and his news hit us hard.

I got to spend quality time with both of them today. Drake and I watched some football for a little while and then I rocked Kennedy in the chair. My father came in town this morning, having not seen him in over two months due to his hear attack. He got to hold his grandchildren for the first time; how great is that?

I wrote a quote when Drake was at his sickest moment. I constantly reflect back to it, as it provides me with the strength for my family.
"Keep the Faith, Never Lose Hope, Continue Moving Forward"

1) Drake's bath
2) Drake with Papa
3) Kennedy with Daddy
4) Drake and Daddy watching football
5) Kennedy & Mommy
6) Kennedy's bath

Friday, September 28, 2012

The BAD News...

Life comes at you with everything it's got; constantly throwing curve balls to catch you off guard. Things have been going so smoothly for so long that we were caught off guard so bad that we were hit right in the gut.

Drake went for his MRI this morning to see if his cerebral nerve was inhibiting him from swallowing. We knew this was just going to be routine, because he was taking his bottles so well. This evening, I asked the nurse to see if the doctor had the official results as it was getting close to shift change. When she said the doctor would be in shortly to discuss them with us, Annie immediately knew something was wrong. If everything was ok, he would have just told the nurse over the phone. When the doctor entered the room bringing a chair with him, I knew I should prepare myself for a drastic swing in our momentum. It seemed like an eternity before he said a word while he pulled up the images on the computer. He said the results of what they went in there for were normal; however, there has been a substantial change in the images they saw at the end of June. Drake has something called encephalomalacia. Unfortunately, it is just as scary as it sounds. This was caused by the massive amounts of swelling and inflamation his entire body endured, when he got so sick from the infection that nearly killed him. He said a large portion of his brain has dilapidated and is irreparable. What does this mean? He said it is too early to tell how disabled Drake will be. They dont even know whether it is progressing or has stopped. He compared this to someone who has had a stroke; when they lose motor skills, they never come back. Only with Drake, we don't know which ones he will ever have.

We don't really know what to do, other than continue to support our children and keep the faith. There is just such an immeasurable amount of weight on our hearts right now.

Please keep this little guy in your hearts and prayers!

Thursday, September 27, 2012

Drake's 1st Bottle

I had the anticipation level of a child on Christmas this morning when I found out Drake would attempt a bottle for the very 1st time. His occupational therapist wanted to work with him bedside prior to the swallow test which has been scheduled for Monday morning. As Drake began his bottle, we all knew choking or aspirating could be possible because of his partial vocal cord paralysis. There is also the worry of Brady's and de-sats with these preemies as they learn. I was hoping for the completion of 10mL out of 50mL, but Drake had bigger plans. He looked like a pro as he drank half of the bottle, 25mL. We were all impressed, and he did this without having a single Brady or de-sat. It was as if he was telling us that he has been patiently awaiting this for weeks. He was completely tuckered out after his 1/2 bottle because he just does not have the stamina yet. Tomorrow is another big day for Drake because he will try another bottle in the morning, then go for his MRI, followed by baby stretches in the afternoon.

Kennedy is still working on her feeds. When she is ready to take a bottle, she does really well and usually finishes. But when she is not interested in a bottle, that is a different story. They both had a bath tonight and are currently zonked out in their cribs. We are all three looking forward to spending the weekend in our new room with daddy in town.

1) Kennedy
2) Drake
3) Kennedy
4) Drake
5) Drake
6) Drake
7) Kennedy
8) Drake

Wednesday, September 26, 2012

ENT Visit

Another successful day here in Special Care, and I spend my time going back and forth between Drake's crib and Kennedy's crib. This is very similar to how I spent my days in the NICU, but here I am allowed to hold them whenever I would like. It's really nice when my mom is here during the day, because she can hold one baby while I hold the other.

Drake had his visit with the ENT (ear, nose & throat) doctor today. He was not a happy camper during the exam, but the doctor was able to determine the diagnosis. Drake has partial paralysis of his right vocal cord. This is a complication from being intubated for such a long time. He said that usually they see complete paralysis of one or both sides, and Drake only has partial on one side. This may or may not cause problems when we introduce feeds. Our next steps will be for the occupational therapist to conduct a swallow study test to make sure nothing goes down his wind pipe, and then have an MRI of his head to rule out a problem with the nerve that controls the cords. These should be completed within the week, and his neonatologist does not expect to see anything abnormal with the MRI. If Drake does not have any problems with his swallow test, then the ENT will just want to follow up with him every few months. Both doctors feel this partial paralysis is something that he could resolve on his own.

Kennedy is consistently doing well with her feeds. She doesn't have the stamina or endurance yet for full feeds, but she will in time. I do feel like the Enfamil AR is helping with her reflux, but her little body is still adjusting to the change in her diet which has caused a few tummy aches. However, we have found that a warm blanket and being held by mommy or Gran seem to help.

1) Drake
2) Kennedy
3) Kennedy
4) Kennedy
5) Drake
6) Drake
7) Kennedy
8) Drake
9) Drake with Gran
10) Drake

Tuesday, September 25, 2012

Settling In Together

Both Drake and Kennedy rested well on our first night in our new room, and I wish that I could say the same for me. Hopefully tonight mommy will be able to get some rest, too. I absolutely love having them together in the same room! This is better than being in the nursery together because it is just us in our own private room. Not having to juggle my time between the NICU and Special Care anymore allows me some time to fit in a few meals.

Kennedy has really taken off with her bottle feeding, and she has attempted most of her feeds today. The doctor weaned her cannula flow down to 1/2 L at 21% oxygen and Drake was weaned down to 0.1 L at 100% oxygen. If necessary, he could still be on this once we go home. So far the Enfamil AR seems to be helping with Kennedy's reflux and this is also something that she can still be on once we go home. The ENT (ear, nose & throat) doctor has been consulted and he should be coming by in the next couple of days to take a look at Drake's vocal cords. We are praying everything will be ok with his cords and that he does not have any sustained damage from intubation.

I had been told a very long time ago that I might be able to hold both babies at the same time once we were in Special Care. I was excited about this possibility, but sadly I found out today that it will not be possible. Since Drake is on isolation for the serratia he had back in July and Kennedy is on isolation for the MRSA, holding them together while here in the hospital will not be possible. Their lack of immune systems will unfortunately force us to keep them separated for a while in order to protect them. The day when I am able to hold them both at the same time will be just that much sweeter. It may take longer than I would have hoped, but I know one day my dream will come.

1) Drake in the bouncy chair
2) Kennedy during exercises
3) Uncle Mikey came after work
4) Drake
5) Drake's 1st time in a bouncy chair
6) Kennedy with a bottle
7) Drake
8) Kennedy

Monday, September 24, 2012

The Move

Early this morning, Special Care told me that Drake would be joining us today. As excited as I was to hear this, I was skeptical. I headed over to confirm this glorious rumor with the NICU and his doctor. To my surprise, confirmation was made...he would be joining us and we would be moving into a twin room; however, we would have to wait for the triplets to move out and the room to be cleaned first. My mom and I patiently waited and spent a typical day going back and forth between Special Care and the NICU. Around 7pm Drake was moved over to Special Care and he was moved into our small room because the larger twin room was not yet ready. Crowded would be an understatement for our small room with two babies and their accoutrements, but we were just happy to all be together. Around 9pm we were ready for the move to our larger twin room. This was like moving from a small hotel room to a luxury suite. We have only been together for a few hours at this point, but I am loving it! The only way to make it better will be having Brian here this weekend to join us.

Kennedy took a bottle this morning with the occupational therapist, part of a bottle with me at 3pm, and another entire bottle with me at 9pm. She is doing so good with her bottles, and I hope Drake does well when he begins. He will be giving drinking out of a bottle a try later this week. Their doctor made a change to their feedings today. Instead of adding fortifier, they will be adding Enfamil AR. This should help with the reflux issues that Kennedy has been having.

It has been a very long day, and I am ready for our first night together in our own room. Twice the bells and twice the alarms but very well worth it. I'm going to try my best to get a little bit of sleep, and I am praying for a smooth first night together.

1) Kennedy
2) Drake
3) Drake
4) Drake
5) Kennedy
6) Drake