Tuesday, July 31, 2012

Another Calm Day

Another calm day here in the NICU. It's nice to not be updated from the doctor until after noon because our babies are not the critical ones this week. The fact that the doctors are not wanting to talk to me first thing in the morning is a very good thing. Of course we still have the daily alarms and bells with heart rates dropping too low and oxygen levels in the blood dropping down, but over all they a both doing well for their age and size.

Kennedy: She is doing well and I was able to hold her swaddled today for the first time. I love kangaroo time, but this was special too because I was able to see her pretty face the whole time. She is remaining stable on her minimal settings and her feeds are going well also.

Drake: We did not hear back from the ortho about his knee today so hopefully tomorrow morning. The infectious disease doctor that comes by daily (at 5am) said that his knee does not appear to have any kind of infection. His joint does not appear to be affected either, and he still has full range of motion. Drake and I had an earlier kangaroo date today so mommy will be getting in bed a little earlier tonight. The doctor also plans on doing an MRI tomorrow to get a better look at his knee.

Pictures: Kennedy swaddled in mommy's arms, Drake sleeping peacefully, Kennedy sticking out her full belly

Monday, July 30, 2012

Taking It Easy

Once again there is not much to report and we are thankful for that. It was a pretty quiet day except for a few times when Kennedy's heart rate dropped too low. Even after 37 days here in the NICU, it still scares me when that happens. Both babies weighed in at exactly 3 pounds today. We are missing dad today and already can't wait to see him!

Kennedy: She still seems to be tolerating her feeds on the hire amounts and calories. Her heart rate drops today seemed to be associated with passing stools. She got to wear a preemie cap from her auntie and it was adorable (even though too big). She has remained on 21% oxygen and minimal settings. She and I really enjoyed our kangaroo time together.

Drake: He had a quiet day and is looking better every day. He is not requiring significant support on his machines even though he does require more than sister. He is doing a great job with his feeds on the higher calories. The orthopedic did not make it by today so we are hoping to hear from him 1st thing in the morning. I'm looking forward to kangaroo time with Drake in just a few minutes!

Pictures: Kennedy in her new cap, Drake with eyes wide open

Sunday, July 29, 2012

A Quiet Day

We don't really have much to report today. The babies are both doing well and it has been a quiet day. Luckily, Annie's mom was able to spend the day with the babies and ease our minds, because Annie and I had to come back home to Tyler, as I prepare for the upcoming work week. I am very sad to be leaving our babies for the week, but relieved in knowing that Annie will be there with them. I am very thankful for the technology that allows me to see and talk to both Drake and Kennedy on a webcam at any time in their isolettes.

Drake: They did an X-ray and sono of Drake's knee today and the orthopedic doctor will be coming by tomorrow to take a look. We are anxious to see what the doctor has to say. They have upped Drake's food to 20cc and he is receiving extra calories. Last night was his last round of antibiotics.

Kennedy: She is still doing very well. She stays on very low settings with the ventilator and is up to 28cc with her feedings. She is on even higher calories than brother. With Drake losing weight (from the excess fluid) and Kennedy gaining weight, they are about to meet up at the 3# mark! This is a good point for both of them.

Annie will be taking over writing the blog for the daily updates due to me returning for work. We can work on them together on the weekends.

Saturday, July 28, 2012

On A Roll

Overall, we had a good day today. These little ones have been on a roll, and the good days have been keeping our spirits up. There were a few things that had us concerned, but with some precautionary x-rays everything was fine.

Drake had to have 3 X-rays today. The doctor said that through the normal scouting X-ray that they do three times per week, they saw something in his intestines that resembled a blockage. They continued to watch it through several more X-rays throughout the day. Luckily it was just stool. Tomorrow will be the day he will have a sonogram and X-ray on his knee. Then on Monday the orthopedic doctor will come in and take a look. The poor knee is not going down in size while his body continues to lose the fluid weight. Everything else is going really well. Food is increasing, ventilator settings are decreasing and mommy/Drake kangaroo time happens daily!

Kennedy is continuing to move forward. She no longer has any IV's going into her arms or legs. She is only receiving mommy's milk, which is a huge step. Her ventilator settings are remaining low. Her little personality is shining through...and let me tell you there is nothing little about it. We are going to have our hands full! Now that the PIC line is out and she no longer requires IVs, she is wearing her first real preemie outfit...even if it is too big. We were not able to get pictures, but we will definitely have some tomorrow.

Pictures: One of Drake and one of Kennedy doing kangaroo time.

Friday, July 27, 2012

Try, Try Again...

If at first we don't succeed, try, try, again. As you might imagine, we Gilstrap's do not give up. Kennedy tried her best efforts with the CPAP, and we commend her for making it more than 24hours. Her little lungs just weren't quite ready. Don't worry because we will try again soon, and she will be ready.

Both Drake and Kennedy were able to get their PIC lines out of their little arms today. Kennedy has had good results on full feeds, meaning she is receiving her total nutrition from mommy's milk; therefore, she no longer needs additional nutrition through the IV. Drake was not quite ready to have his removed from a nutrition standpoint, but the swelling in his shoulder made the doctor feel removing the PIC would help his shoulder heal. They added a new IV so he can continue to receive the additional nutrition that he needs as well add the other medicines he needs. He has moved up to higher calories in his milk and will be on full feeds like sister in no time.

Today, Kennedy was jealous of Drake because he got to enjoy kangaroo time with mommy and she was not able to because of the CPAP to ventilator change. Truthfully, she was so exhausted from giving all her energy to breathing that once they switched her, she was out. Mommy and daddy were so proud of the effort she gave.

As if we didn't have enough to worry about, the doctors said we have transitioned into the preemie growth stage, but this brings with it the potential for more complications. He was telling us they are watching for Necrotizing Enterocolitis...whoa, what a scary name. Oh, only 5% of preemie babies get this...So the glass is always half full, the odds are in our favor.

Drake's knee is not getting smaller, nor is it changing from the purple/blue coloration it has. This worries the doctors since they do not know what is wrong with it. They are monitoring it closely and will order a sonogram on Monday.

As always, your continued prayers for their health are much needed and appreciated.

Pictures: mommy & Drake, mommy, daddy & Drake, Kennedy looking "Pretty in Pink"

Thursday, July 26, 2012

Smooth Seas

After the storm of fear that plagued us from Drake's health issues two weeks ago, we have had several days without a worried captain and first mate. Annie and I have not been able to experience the happiness that we so desired, until the last few days. We are so filled with joy, it shows through to everyone we talk with. Nurses, parents, friends and strangers all say, " It is great to finally see some smiles." I will admit, it feels great to smile! We continue to pray daily for the storms to stay small and our ship to remain strong.

Today began with some of our good friends visiting from Tyler, we consider them family. They delivered our mail, mostly bills to sort through, and some really nice gifts for Drake and Kennedy. Most importantly, they brought some great friendship for us to enjoy. In return, they had a first hand experience in the kangaroo time mommy snuck in with both Drake and Kennedy before we all went to lunch.

Today's activities for Kennedy included her second attempt at CPAP. The doctor said, "She is doing exceptionally well." We are hopeful this will be her permanent graduation from the breathing tube going down her throat. Even if they do move her back to the ventilator, it is helping her build strong lungs while she is doing the breathing on her own. However, she was a bit annoyed that she has to wear the stylish headgear that inhibits her glamourous photo opportunities. She is still tolerating the higher calorie feeds as long as it is given over a length of time. If this keeps up, she will be able to lose the PIC line in her arm...this means she will be able to wear some of her very own preemie clothes, even if they are still too big.

Drake had an eventful day as well. The doctor said it was time for him to go to a larger diameter tube that he uses for his breathing. He still had the original one from when he was intubated a month ago in Tyler. This means that he is growing and it will provide better airflow to help him receive adequate ventilation. Like his sister, he was quite upset about the whole ordeal. Now, the kangaroo time he had this morning further confirmed my observations on how much he loves it. Like yesterday, once he hit his mommies chest, all movement stops and time seems to come to a halt for both of them. If they would let them do it all day long, there would be no objections from either of them.

Wednesday, July 25, 2012

D&K In The Outback

Wow, today has been amazing! There is a lot to be happy about, with the biggest news being kangaroo time for Drake and Kennedy. That's right, Drake had his time with mommy and Kennedy hung out with me! We enjoyed our first moment as a family, outside of the isolette, in our arms, side by side. In addition to this game winning touchdown, there have been a lot of other first downs made.

We will begin with Kennedy, she has not been first in quite some time. She has made more improvements in her nutrition. She has gone up in volume with minimal spit-ups. In addition, her IV nutrition drip has been transitioned to a different type of IV liquid that has her relying less on the drip and more on the milk. Soon she will not need any nutrition through her IV. The doctors are waiting on the CPAP for tomorrows activity since I was kangarooing with her today. This is because once they move her to CPAP, she cannot be moved for 72 hours. I am thankful they are waiting until tomorrow and gave me a chance to hold my daughter for the first time.

Now for Drake. Through his complete duration of kangaroo time with mommy, he was completely relaxed and hardly moved a muscle. This was so good for him...and mommy too. He finally got a bath last night! He did not like it as much as we did. I'm pretty sure he was confused as to what was going on, but he did eventually settle down. Some additional great news, the doctor let us know that since he has remained on one of the antibiotics since he got sick several weeks back, he will continue the antibiotics a couple more days and there will not be a need for a lumbar puncture! Drake has had a very busy 24 hour period, ventilator change, bath, kangaroo with mommy...and he is staying strong through it all.

Tuesday, July 24, 2012

Deep Breaths

The title of this post is meaningful in multiple facets. For one, Annie and I feel like we can quit holding our breath for this moment to celebrate these first downs Drake and Kennedy have been making. Second, Drake is handling the new ventilator settings. And lastly, Kennedy will be trying her hand at CPAP again very soon.

Things really haven't changed much from earlier today. Drake is staying strong, letting everyone know he can do this new ventilator thing...and he is doing well, when you leave him alone. This is ok, he has earned the right to be fussy...have you gone seven days without going to the bathroom? The lumbar puncture has no further update yet. This morning, the doctor told us that it could be today or tomorrow. It will also be dependent on what his back looks like and whether or not they can easily access the vertebrae for the procedure. Best news today, the nurse told us that if he does well on the ventilator tonight and tomorrow then he could kangaroo as early as tomorrow afternoon. There is one excited mommy in the room! Excited daddy too, because that would mean that I could finally get to hold Kennedy.

Kennedy is still eating a lot...and making some dirty diapers for me to change. They decided to give her a little more volume than what she has been getting, but they have a special pump that feeds her over an hour and a half to keep her from spitting up. They said one of the problems they sometimes see, is that once the volumes get high for their weight, it is hard for the babies to keep it down. So far, she seems to be dong very well. Another CPAP attempt will be sometime this week. She is a determined girl and has the "never give up" attitude like her brother, so I feel that she is going to get it this time. Besides, she is getting very strong and may pull her tube out of her mouth anyway.

Pictures: YES, there is a picture of Drake. Drake and Kennedy on their one month stepping stone yesterday.

Drakes CO2 Levels

A quick update on Drake from last night. The doctors and respiratory therapists think that his rapid change in the CO2 saturations may have been caused by the last set of changes they made to his ventilator. The oscillator ventilation system he has been on for the last few weeks, is set at its minimum settings. He is doing well on is oxygen requirements the last couple days so they cut his support way down. It may be too much for the machine to adequately function. They made some adjustments over night, which made some slight changes to his saturation levels. His high temperature may have been just a fluke as he has resumed normal body temp.

They just now moved him to a conventional respirator, one like Kennedy is currently using. This is definitely a first down as he seems to be adjusting to it quite well. A few days on this and it could be kangaroo time for him!!!

Photo: Kennedy showing us she can hold the pacifier all by herself.

Monday, July 23, 2012

One Month Down...Prayers Still Needed for Drake!

Drake and Kennedy are officially one month old today and mommy and daddy have also made it through our first month in the NICU. It has been a rough ride so far but we are so thankful for every day we have with them. This cannot go without thanking everyone out there for the non stop prayers and continued support. Friends, family and complete strangers all coming together for one cause...our precious babies health!

It seems that not one day in the NICU can go by without having some sort of scare. Today's incident was a sonogram on Drake's shoulder. I asked the nurse, "Don't you mean his knee?" Evidently the routine X-ray they do to check his lungs showed what appeared to be an abscess in his shoulder. Fortunately it came back as a false alarm. It still has potential to be joint related, but we have our hopes going in the other direction. Now to the knee, the doctor said they keep going back and forth on wether they are going to drain it or not and they are continuing to monitor it. Due to the infection he had, the doctors still want to do a lumbar puncture to check for signs of meningitis. This was not the news that I wanted to hear this morning as it is a somewhat invasive procedure. This little guy has been through enough! They are planning on doing this once the swelling goes down a bit more. This was all early in the day.

We just got back from dinner expecting to see Drake get his first bath. To our surprise, the nurse said that his blood gas levels "Don't look good." His CO2 was high, his PH was low, and he is also running hot at 100 degrees. All of these things combined and how they drastically changed, worry us a lot. He can't be getting sick again...especially after all he has been through!!!

Kennedy got to wear her very first teeny tiny outfit today...don't be mad but we did not get a picture yet. She has been swaddled in blankies all day and haven't had a good view of it yet. She is continuously moving up on feeds with adequate toleration. Much growth is in her future. Very, very close to the 3 pound mark.

I will provide a quick update in the morning on Drakes status...as you all know by now, a lot can happen in an hour at the NICU!

Sunday, July 22, 2012

Grow Babies Grow

Drake and Kennedy will officially be one month old at 2:32/2:33 am. It is hard to believe it. We started this morning out with good news. Drakes white blood count went down overnight, so they decided not to puncture the knee to look for further infection. Prayers continue to work for these two little fighters.

Drake is looking better and better each day. He is beginning to get back to the size he is supposed to be. It has been so difficult to see him suffer, swelling to the point where he could not move his arms. He is now able to flail about like his sister which is so exciting to see. He is still holding approximately 8-10 ounces of unwanted fluids, but is still urinating at exceptional rates. He is now completely off of ALL the diuretics and pain meds, and is currently not showing any signs of withdrawals from the medicines either. As with his body, his knee is still enlarged and bruised. Thankfully, it is slowly getting better. He had to have another blood transfusion today so he did not get to eat. He will resume feedings this evening.

Little Kennedy is growing like a weed, she is 1 oz shy of the 3 pound mark. She is currently maxed out on the volume of milk she can get, which is 16cc every three hours, so they are beginning to fortify it with additional calories. This is definitely a movement in the right direction. The doctors and nurses said that once she is handling the fortified milk well, they can take out the central PIC line that she has in her arm. She is absolutely enjoying her kangaroo time with mommy and a look of complete relaxation overtakes her body...until they take her away!

Pictures: The most stylish isolette covers in the NICU. Proudly made by their uncle Aaron.

Saturday, July 21, 2012

4 Weeks Old

Today has been another day with little to report & we are beyond thankful for that.

Drake is looking better and better every day! He has been completely weened off of his diuretics and pain meds. They are watching him really closely as it is possible for him to go into withdrawals from the pain meds. Hopefully, he was weened off slowly & will not have problems with withdrawals , otherwise he will have to go on some methadone. They are watching his white blood cell count closely because it was elevated. If it remains elevated on tomorrow mornings test, they will need to drain a sample of fluid from his knee to check for infection. We pray that his white blood count is back down tomorrow and a new infection is not a battle we will face.

Kennedy has moved up to big girl diapers...woohoo! (Well, now she is in small preemie rather than xs-preemie). She got to have kangaroo time with mommy again today! They were both happy campers!

Pictures: kangaroo time, helping weigh Kennedy, diapers and bootees, Kennedy and her beautiful eyes

Friday, July 20, 2012

The Good Keeps Going

We can check another day off with favorable results. Annie and I are so relieved, we actually have time to breathe. Annie can get some time to rest and I can get a quick workout in without worrying about every second of the day.

The nurse actually said Drake has had a stellar day. For the last week and a half, he has been so sick that he had to have a dedicated nurse. Usually each baby will share a nurse with another baby in the same room. Today, Drake is doing so much better that he and Kennedy will share the same nurse tonight. That is good news. He is now completely off of one of the diuretics and is 3/4 weened off of the pain medication drip he was on. He will still be given something periodically for sedation to keep him calm. He gets aggravated that he cannot move around very well and also doesn't like the nurses touching him....I would feel the same way since the last 2 weeks every time they touch him he got poked or stuck with something. He did lose another 5 ounces since yesterday which makes a total of 1 pound over the last two days. He is starting to look so much better.

Kennedy has been rather touchy the last two days, not sure why she is acting up. We hope so much that this is not a prelude to another infection. She just finished her antibiotics from the infection she had, so a new one would be unlikely. As long as she is left alone, she is fine...so we leave her alone.

Thursday, July 19, 2012

Remaining Stable

Since both Drake and Kennedy are doing ok, I have changed my blog frequency to once per day. This is a great thing since it means there is little to report. A calm day definitely gives us relief; however, after seeing what Drake is trying to get over, the constant threat of more infections continue to weigh on our minds.

Drake is continuing to do better and better each day. He lost 11 ounces of weight last night...all fluid from his body. It is nice to actually see his forehead again. He still has a lot more to lose, but is is going to be a slow process. They decided not to drain his knee as it would be too risky due to another potential infection where they drain it. The doctor said it should eventually go down. He is currently up to 6ml of milk every 3 hours. His body is tolerating the food very well and they will continue to go up every day. He also seems to be handling the small changes they made in his medication doses which helps with his electrolyte levels to make sure they do not get too low.

Kennedy had some issues today with her breathing tubes and kept losing oxygen saturation and dropping her heart rate. She kept the nurses busy all day. They eventually changed placement of her tubes and it seemed to help fix things. She is going up and up on her feedings but they are having to pay close attention to her digestive rate so they don't feed her more than she can handle in a short time.

Wednesday, July 18, 2012

A Good Night's Rest

It is looking like Drake and Kennedy might get a good night's worth of rest in following a non eventful day. This is something we have not seen in a while. We have to take advantage of these days because we are going to be here for quite a while. Their gestational age is 29 weeks today and we have been here in the NICU for 25 days. Tomorrow may start out a different day as a they said they need to do a procedure on Drake's knee.

His knee is so swollen and bruised, the doctor wants to drain all the fluid in it tomorrow. Im not quite sure how this is done, but will get all the details before they do. Drake is finally beginning to lose some of the fluid in his body...not very quickly but we can tell a difference in his hands and chest. We can't wait until he is back to normal and we can share some pictures of the little guy. It is amazing what his body is going through. A little boy who is supposed to weigh just over 2 pounds gained close to 3 pounds of fluid in the body; this was extremely sad to see for mommy and me. Keep praying that this urine output continues as they reduce the diuretics he is on. That Drake is one tough dude!

Kennedy's food increase has gone up and her body is so tiny that they have to use a special pump to feed it to her over a 30 minute period. They tried to give it to her all at once, but her belly could not handle the volume and it made her very uncomfortable. Probably like I get when I eat too much. She enjoys being swaddled in her new blankets her uncle Aaron made her...keeps her stylish in the NICU.

The Sun Is Shining On Us Today

Consistency in the NICU is the best thing you can wish for. They continue to tell us that "No news is good news"...I am fortunate to say that today comes with little news.

Drake had a goal of 50 cc of urine last night, he got 82cc! He continues to defy all expectations set forth for him. The X-ray on his knee did not show any fractures or breaks, that is such great news! It is pretty black and blue so they are going to continue to monitor it for potential ligament damage. He is getting to go up slightly on his feeds, this is so much better than the IV drip nutrition he has been getting. He will be slowly weened off of the diuretics as he is beginning to get too low on some of the valuable electrolytes that were life threateningly high last week.

Kennedy is up to 9cc of milk and she is continuing to grow quickly. I actually enjoy changing her diaper, for now, because it gives me an opportunity to get in there and interact with her. She is such a sweet baby and has beautiful eyes.

In the next few weeks, Drake's swelling should go down. We can't hardly wait to be able to get in there and interact with him again. It is so difficult when the only interaction is from the outside looking in.

Tuesday, July 17, 2012

The Ride Continues

As I sit here writing this blog, I reflect back on all that has happened over the last 23 days here in the NICU. Wow...that pretty much sums it up. They say we're going to be here until at least mid September...and everyone keeps saying it will continue to be a roller coaster ride. What a ride we have already been on! We hope and pray that we started with the worst ride in the theme park and all that are left are the "Kiddie Rides".

Drake and Kennedy are definitely celebrities at the NICU, Drake is a record holder here for longest to hold their bladder (7 days). Kennedy is his cheerleader, every time we look at her she is waving her hands in the air.

Tomorrows roller coaster will begin with X-rays of Drake's knee. It is extremely swollen and badly bruised. The doctors were telling me that one of the risks and side affects of the diuretics is calcium loss which could make their bones brittle. They are worried that he might have a fracture in his little knee. All the heel pricks they do for blood work, four times per day, result in them bending their little legs up to get the blood. They were telling me stories of some that fractured their foots with light touching. This would be adding so much more stress to an already traumatized little boy. If it is fractured or broken he would have to have a splint on it until it heals. My heart absolutely breaks to think he would have a fractured knee or bone. I will be praying extra hard that the X-ray comes back negative, please join me in doing the same.

He is still continuing to produce really good amounts of urine and it is over the minimum they would like to see. As I mentioned earlier, the fight he must put up will continue. They are continually watching his electrolyte levels; some are rising some are falling, give him this, take away that. It's a never ending process with his blood work and medicine changes. Please continue too pray that his kidneys are not too damaged and they continue to function when they begin to ween him off of the diuretics.

Kennedy is doing well and resting from her continued feedings...2# 10oz now! The nurse just called me over to see a first for Kennedy...She was sucking on her thumb. She is absolutely adorable and has completely melted herself into my heart. She can have a bit of an attitude at times, but she quickly makes you forget about that when she looks you in the eyes. She is beautiful!

Picture: It is dark, but Kennedy is sucking her thumb and enjoying her evening.

Recharging the Body

Last night was the first night Annie and I actually slept well. The stress and anxiety we have been through this past week was excruciating. Annie and I have not stepped foot out of the NICU level for over a week since last Friday night. Today, we are going out for lunch. I know, we have been told over and over that we need to get out of here for a little while...but there was no way we could leave them while Drake was literally clinging on to his life.

After what the doctor told us last week about Drake only having 24 hours if he doesn't have any urine, we learned that we have to take it with a grain of salt. We spoke to the doctor this morning and he said we still don't know if his kidneys are functioning properly or if its the medicines...they won't know until they ween him off of them. The doctor said again that they don't know what made him begin producing urine, but they are not changing anything right now. Annie and I looked at each other at that moment, because we know the power of prayer and God's healing hands were at work.

Kennedy got moved back onto the respirator from the CPAP... She gave it her ALL. The doctor said that a bad day on the CPAP is better than a good day on the respirator because it forces the lungs to develop since they have to do the work instead of the machine. She was trying to breath too fast and shallow which didn't allow her to exhale the CO2. She would get so tired from the rapid breaths she would stop breathing for a little while. We are understanding and accepting of this because sometimes they just aren't ready...you don't know if you don't try. The unfortunate deal is that she doesn't get to do kangaroo time for a couple days since she had to be re-intubated.

Photos: Kennedy back on the respirator, Annie making a baby blanket

Monday, July 16, 2012


Yesterday at this time, we were incessantly watching a catheter like it was a good movie...I couldn't close my eyes. It was such good news that was long overdue. We were so happy. We now are at 24 hours of regular urine output.

During the 12 hour day shift, Drake had 33 ml of output which was a little more than double the minimum they were looking for. That's my boy, over achieving; I just wish he didn't wait so long and put me and Annie through So much stress and anticipation. We are still at risk that his kidneys shut down again because he is on high levels of pain medication. They are trying to cut it back but he is in such discomfort and pain that he tenses his whole body and it almost stops his heart. I cannot see him in pain...they are having to keep him right on the edge with the pain meds to hopefully keep the kidneys going. Please continue to pray for Drake and him getting restful healing.

Kennedy was moved to the CPAP this afternoon. She is still trying to figure it all out...she forgets to breath and they have to go remind her often. The nurses said we give her some privacy for a day or two so we don't overstimulate her. This is tough, as we like to constantly peer into her isolette to stare and talk to her. Please pray that she finds the strength to adapt to her breathing.

Picture: the split second that you could get a good view of Kennedy's face.


1. Occurring through divine or supernatural intervention.
2. Highly improbable and extraordinary and bringing very welcome consequences.

Upon meeting with the doctor this morning he said, "We had more urine. What a miracle, this is nothing short of miraculous." This coming from a doctor and witnessing it first hand, the definition above explains it all. A nurse through our conversation said that she had not ever seen a baby go this long without urination, the longest she had seen was four days...Drake went seven! Thanks be.

Drake continued to meet just over minimum expectations of 1 ml of urine per hour. He is very touchy, as I would be too, where his heart rate and oxygen levels drop very low whenever they get in there to touch him or change his diaper. Mommy and I are able to caress his head to calm him down and talk to him when they do this, it really helps a lot. We rarely leave his side...we are fortunate that my parents take night duty from 12:30am to 6:00am so we can get some rest. It allows us to sleep knowing he has family watching over, coaching from my dad and singing from my mom, to help him through these tough times.

He will maintain all levels of medications for now and slowly begin to take him off of the diuretics. Since what they have been giving him for the last few days is rare and non-conventional medicine, one of the doctors referred to it as "Witches Brew." As my posts have indicated before and the definition of miraculous states, this is a miracle involving divine intervention...Four words; seven days no pee!!!

Annie is finishing up her kangaroo treatment with Kennedy right now. When they are done and she calms down from the fit she has when they take her away, they are going to put her on CPAP. This is a "First down" for her. We know that it comes with risks, as does everything at the NICU, and if she does not do well on it she will go back on ventilator.

Then Jesus said to him, Unless you see signs and miracles happen, you never will believe. John 4: 48

Sunday, July 15, 2012

Liquid Gold

Today's good news was the game changer within our emotions. We have been on the edge of our seats for right at seven days to the hour when Drake got really sick, desperately hoping and praying for a miracle. I mentioned earlier that we are witnessing one in real life. If you have determination and stick to your beliefs, you will understand that all things happen for a reason. You cannot control them, you can only look for support through Him.

Earlier today, we were so excited to have urine in the catheter tube. We have reached another milestone...it has reached the end of the line where it drops into the collection tube. We even had some in the diaper! We are hoping and praying for a continuation and increase in volume. Drake is extremely swollen still and the doctors said that the activity in output needs to increase before this starts to go down. Medicine wise, everything is going to stay the same except they are adding something for his thyroid...good news is the side affect is, an increased need to pee.

Kennedy is still doing good from the earlier report, growing in length and weight. 2# 6oz, 14.5" long which is 1.5" longer than when she was born. She loves kangaroo time with mommy and gets pretty mad when they take her away and put her back in the isolette.

Drake is nowhere close to being out of the woods, it is simply a stepping stone along the path toward wellness. Please keep up the faith for him and continued prayers for his kidneys.

Pictures: Liquid Gold, Kennedy sleeping, Kennedy holding mommies thumb

Clearer skies

Yesterday's rainbows in our lives definitely have provided a brighter day of hope; our bodies emotional weather forecast has been quite rainy the last few days. Until we received the message of the rainbows, we felt our forecast was quite gloomy.

Drake has been given every medicine known and even some unknown including some unconventional tricks on the body to get his kidneys to produce...Drake has had more urine output in the last 5 hours than he has had in the last 6 days!!! We are not at the point of a steady flow that we need to get him out of the critical edema and electrolyte overload, but we are making pee!!! (never thought I would be so excited about urine, but I am ecstatic.)

I feel confident that we have been and still are witnessing a miracle in action; being performed right before our eyes. Yes medical science is dong it's part...but speaking directly to everyone reading this, it is our belief and prayers which are allowing Drake to fight on and giving him the ability and strength to heal. Thank you, thank you, thank you! He will continue to get 1 cc of mommies milk every 6 hours and another round of the oral diuretic/protein mixture this afternoon.

Kennedy is continuing to move forward. Her breathing and ventilator settings are doing great. She will be receiving caffeine for stimulation, and she should be moving to the CPAP soon. It is the ventilator that simply provides airflow in the two small tubes under the nose...she will have to do all the breathing on her own. Unfortunately, she will not get kangaroo time for three days. This is because moving them can be traumatic for short periods and they want to give her time for her lungs to adjust and breathe on her own.

"Keep the faith, never lose hope, continue moving forward"

Picture: This is the picture of Drake and mommies finger before he got sick. It has been photoshopped to have him amidst rays of light.

Saturday, July 14, 2012

Shining Lights of Hope

This afternoon and evening have continued to go without any additional flow of urine after the 1cc we got last night. I feel very strongly about a message that was meant to shine some light of hope upon us.

Almost to the second, I received a text message picture from my mother while Annie received one from a dear friend. Both pictures were of Double Rainbows...one set was shining down over the hospital and the other shining down near our home 90 miles away. These two pictures have to represent how the almighty is looking down upon us, both at the hospital where we are and simultaneously where we live. Both messages we received said "A double rainbow for Drake and Kennedy." This has to be a message of hope and not sheer coincidence.

Drake is remaining stable and continuing to fight very hard. His vitals are staying in check, however the swelling continues throughout his body. The doctors keep fighting for Drake, putting their heads together they have come up with a combination of things. They are going to give him some of mommy's milk, some other proteins, and higher doses of the the two diuretics. This should trick his body into drawing more blood into his vascular system and into the kidneys. Confusing to me, but then again I'm not a doctor. If there is no urine by tomorrow morning, there is still the oral diuretic they can try.

Kennedy had her first bath tonight. This was quite an experience for her and mommy both...arms and legs were going in all different directions. She was not too excited about the bath until they got to her head. She completely relaxed once she was wrapped in a warm blanket. See that wasn't so bad.

We are surrounded by such great people. Starting with the doctors and nurses, everyone cares about their well being. Nurses that have had a shift with them continually come in checking in on them even when they are with a different patient. The doctors call on their day off to see how they are and there is even a doctor that will be coming in on Monday during her day off just to see how they are.

Then there is family...What more can we say. Both sides go way out of their way to do anything and everything, just to make sure we can spend as much time with our babies as possible.

Friends...our other family. We have such great friends that drive long distances just to bring care packages and mail all to help us out and catch a few minutes to say they care.

Strangers...wow! What a wonderful world it can be when everyone comes together to support a family and sick children. The kind words, prayers, and ideas you all send are wonderful.

You all shine a light of hope into our lives...Thank you to everyone!

Having What It Takes

"Keep the faith, never lose hope, continue moving forward" -Brian Gilstrap

Again waking up early this morning expecting to see the catheter filling up, I rubbed the sleep out of my eyes to see there had not been any further progress. Though this is discouraging Drake woke up, looked me into the eyes and let me know he is still in the game.

The quote I wrote at the beginning of this blog entry is something I wrote last week, when Drake made his hastened descent in health. It is through this thought process that reminds me of my faith, fight, and determination and helps me remain the rock within this family.

The doctor has definitely shown her commitment to us and our babies. She has the "never give up" attitude as well. She talks about being up until midnight and up at four in the morning researching and reviewing all possibilities. They are increasing the amount of the "Old School" meds in hopes it will do the trick. She has ordered an ultrasound to see if the bladder is full...we are anxiously anticipating the results. It is the weekend, and it may be a little while before they get a team together. They are going to give Drake a tiny bit of milk in hopes of getting digestion going because the next step is a much more powerful diuretic that can only be taken orally. To me, this shows that the doctors really are exhausting all efforts.

Kennedy is still doing very well, continuing to increase feedings with favorable results. She is receiving another blood transfusion this morning, which was expected, but it has pushed back mommy's kangaroo time. Since she has been without sedation for several days now, we are beginning to see some of her personality. She is definitely mine and Annie's child...just a little feisty.

So as you read our story of this little blip of time within our lives, please keep praying, hoping and continuation of all the support you have for us. It is definitely working and means so much to Annie, myself and Team Drake & Kennedy!

Friday, July 13, 2012

A Step in The Right Direction

Someone I look up to taught me the lesson about the importance of celebrating the small wins. I am Drake and Kennedy's coach in the game of life so I had a long discussion with him and told him to focus on the small wins. In the game of football, you want to focus on celebrating the three yard plays. If every time you snap the ball you get three yards, you are guaranteed to get a first down. With enough three yard plays, you will eventually get a touchdown.

Team Drake got a first down today...about 1cc of urine out of the catheter!!!! This is not the touchdown we ultimately want to help us win the game, but it is a huge step in the right direction.

Like all of our days so far in the NICU, today was still a very long day. My fatherly duties, knowing that I am the advocate for my helpless children, I continue to drive my determination to make sure Drake is getting everything that medical science has to offer. I spoke to the doctors letting them know that I am requesting a consultation visit with the nephrologist of my choice, I asked them to set this up. That nephrologist happens to be on vacation until next week and they said we could set something up then. I pushed the fact that we needed someone to talk to today. Don't get me wrong, the doctors here are wonderful and very smart, Annie and I just need to know that we have exhausted all resources. Finally getting to speak to someone, we had a long conversation about what specifically is going on with his kidneys. They reassured us that the NICU doctors are doing everything in their power and all the right things. We just have to keep hope that the kidneys will start working before we run out of time.

The small amount of urine gives us a new spark of hope that I cannot explain. It means the kidneys actually did filter something...which is a whole lot more than nothing. The new medicine seems to have helped kickstart something. Instead of giving him another one time dose, they are beginning a consistent drip through the IV to provide sustained release.

Tonight could actually be the winning TOUCHDOWN!

Pictures: Kennedy and mommy with our wedding rings, Annie and her dad with Drake, Mommy and daddy during kangaroo treatment

Patience Quietly Awaits!

We were sent a message from a friend last night.

God makes a promise.
Faith believes it.
Hope anticipates it.
Patience quietly awaits it.

These four short sentences seem to completely summarize our entire experience thus far, here at the NICU.

There is still no urine output, but the fight Drake is continuing to demonstrate is absolutely remarkable. We met with the doctor this morning and it shows that he has impacted them as well. The doctor said she was driving in this morning and thinking about us, putting all her concentration and thought into what else we can do. She said she had another trick up her sleeve, it is kind of "Old School." She didn't even have it out of her mouth and we were on board. She ordered another diuretic that is used to reduce the swelling and fluid retention caused by various medical problems. It causes the kidneys to get rid of unneeded water and salt from the body into the urine.

Let's do this Drake...Friday the 13th is a LUCKY day!!!!

Kennedy and mommy are doing another kangaroo treatment...it looks like they will have a date at 11:30 every day to do this. I'm pretty sure neither of them will be late for this...Kennedy and mommy absolutely love this. A sense of calmness completely takes over both of them.

Picture: Kennedy holding my wedding ring. (I think I spent 5 minutes scrubbing it with sterile wipes, I am now a father you know,)

Thursday, July 12, 2012

The Best of Times, The Worst of Times

We truly felt the meaning of the Charles Dickens quote "It was the best of times, it was the worst of times."

It started out when I asked about his eligibility for dialysis. I began having discussions with multiple doctors regarding his options and the procedure and actually felt I was getting somewhere. This glimmer of hope was quickly shot down by multiple hospitals and nephrologists, there were no doctor's or hospitals that would accept his case. There is a dialysis procedure that can be done for babies this young and delicate, but only on rare occasions when renal failure is their only problem. Unfortunately, his body is so oedemic (swollen) that the procedure would be impossible. Adding to the problem, he has blood pressure issues due to the infection; this would not allow his heart to make it through the procedure. This is not to go without mention that he is so unstable that physically moving him to a special dialysis center is not possible.

As Drake lay there fighting for his life, I was compelled to keep pushing. I continued to ask questions to explore all options...bring in a special team, urologists, surgical procedures, and the list went on. The conversation was ended where we originally started..."We are doing all we can, his kidneys will have to start working to produce urine." I do not feel defeated because I will not give up on him!!!

This afternoon, mommy got some great news about Kennedy. She was told that Kennedy was ready for a kangaroo treatment...She got to hold her for the VERY 1st time. This is something she has been yearning to do for the last 19 days. The nurses carefully placed Kennedy on Annie's bare chest, mommy to baby contact. I have never seen two beautiful women in such a relaxed state. I was so happy that we were able to do this...it was so long overdue.

Having a great day with Kennedy and a sad day with Drake bring happiness and sadness simultaneously. The fight for Team Drake and Kennedy will not cease.