Davis {5 months} The Gift of Life

After waiting 116 days, Davis received the gift of life on November 30th, his five month birthday. The night before surgery we received the call about a potential heart. We were told that it was a match according to blood type, but we wouldn't know about the antibodies or antigens till the labs got to the hospital the next morning. Tucker and I immediately prayed together over the phone; he was in Birmingham with Davis, and I was in Auburn with Hudson. Neither one of us got much sleep that night. I continued praying, praying for the donor family, doctors, nurses, all involved. I listened to my praise and worship music, and I cried thanking God for this incredible, beautiful, but heartbreaking life He gave me.

The next morning, the labs looked good and on paper, the heart appeared to be the perfect match for Davis. Of course, we knew there was a chance the surgeon would look at the heart and decide it wasn't the right heart for Davis, and we wouldn't know that till the last minute. Tucker and I spent the day holding Davis and taking his 5 month pictures. We were excited, anxious, and dismayed all at the same time. One thing Tucker and I both struggled with was knowing that in order for Davis to live another baby had to die. That is a hard place to be. Praying for a heart felt like praying for a baby to die. Having nearly lost Davis several times, that's a thought we couldn't even fathom. Since the day Davis was placed on the list, we prayed for the amazing family that would give him a second chance at life.

 Getting some play time in before surgery!

 Snuggling with mommy.

Davis was taken back to the operating room at 7:15 pm. We were sent out to the waiting room for the night. We did our best to nap and try to get some rest, however our efforts were futile. Every so often someone would come out and give us an update. We knew the surgery wold take longer than a typical transplant due to the surgeons also having to remove the Berlin. There was some delay, because there was an accident where the donor heart was located. We were frustrated and anxious, but my thoughts immediately went to the donor family and what they must have been going through. Their sweet babe was enduring yet another procedure, giving life to several other babies. We could wait a little longer.

 Everyone stopped by to cheer for Davis and wish him well!

We LOVE the doctors and nurses on the CVICU!

 Headed to the OR!

We were updated again when the surgeon arrived with the heart. Relief. Was this really happening? This heart was the answer to so many prayers. We thought it would fix everything. Unfortunately, when the heart was transplanted, it had difficulty beating again. Davis had to be put back on the bypass machine three times. The final time the surgeons decided to put Davis on ECMO, which is life support. Again devastation. After everything we have been through- the waiting, the crying, the pleading with God for his life- he still might not make it.

The doctors weren't sure initially what the problem was. Was it acute rejection? They didn't think so- it certainly would be rare that it would occur like that. Was the heart just damaged and tired from everything it had been through? They weren't sure, but everyone hoped for the latter. Fortunately, that was the case. Davis only spent three days on ECMO. Every day that passed, Davs' new heart became stronger and stronger. That was only the first step to recovery. He needed to be able to breathe on his own without assistance. It took Davis awhile for his lungs to get strong enough to be removed from the ventilator. After being extubated a couple of weeks, Davis was breathing room air without any assistance at all.

 Waking up post-transplant. 

 Davis' first smile post-transplant. 

He saved it for mommy!

 "Normal Heart" 

Yipee!!!

They let us keep Davis' Berlin heart. 

This device was Davis' heart for nearly 5 months.

Soon after that, Davis was moved to the step down unit, CCU (Cardiac Care Unit). That meant he was finally doing well enough that he didn't need to be in the CVICU! He had made it! I can't tell you the excitement we felt! This also meant that we were one step closer to being discharged. Since then, that's exactly what we have been working towards. The only thing still keeping Davis in the hospital at this point, is feeding issues. Davis will not consistently take formula from a bottle. We know he has the skill; we know he can do it. One day he will latch every time the bottle is offered and suck the bottle dry, and the next day, he won't have anything to do with it. It's very frustrating. Due to this, it was determined that Davis would need a g-tube (gastrostomy tube). The g-tube will allow Davis to get the calories he needs to grow while we continue to work with him on feeding. It will also make administering his medications easier. Everything will be given in the tube, rather than having to worry about him spitting out the many medicines he needs.

Even more frustrating is the fact that this procedure has been pushed back twice. Davis has reflux, and we have been aware of that for quite some time. The day before he was first scheduled to have surgery (December 23), the stomach doctor wanted to determine if Davis did, in fact, have reflux, and if so, to what degree. If a child has reflux, a g-tube can make it worse, and they would need to do a bigger procedure called a fundoplication, where they wrap the stomach around the esophagus which prevents reflux from occurring. A ph probe would be able to give him that information. The only issue was that Davis needed to be off all his stomach meds (Zantac and Prilosec) for a WEEK! That meant we would be spending Christmas at the hospital. We were crushed. Immediately, we started making plans to have Hudson in Birmingham with us. We have the most amazing and supportive family, and they did EVERYTHING to make sure our Christmas was special. I can tell you, it was a Christmas we will NEVER forget! (I'll write another post about Christmas soon!)

Davis had the ph probe put in Monday morning and taken out Tuesday morning. The results are that he has severe reflux. That also meant he would need the fundo in addition to the g-tube. He was on the surgery schedule for Wednesday (December 30), when another doctor came in Tuesday afternoon to let us know that they couldn't do the surgery again, because Davis was on aspirin. Aspirin is a platelet inhibitor (blood thinner), and there is a risk of bleeding. He would need to be off aspirin for a WEEK! We were HOT! I swear I saw red. How in the world they missed that I'll never know. It's obvious that there was a miscommunication between our doctors and the stomach doctors. We hope and pray that this will be last delay. We are looking at it as positively as we can. It will give us both time to go home and spend time with Hudson, and Phyllis can finally go home and get some much needed rest. This additional time will also allow Davis to get off more of his medication, which is less that we will have to give after discharge. We are looking at the glass half full and counting our many blessings.

On Tuesday, we also found out that Davis has a heart murmur. This is being caused by a narrowing of the aorta where Davis' aorta and the donor aorta meet. This is causing the left side of his heart to work harder, and the muscle on that side is becoming thicker.The good news is, this can be corrected by catherization, They will put in a balloon that will open the aorta to where it needs to be. They also said this shouldn't delay us being able to be home in Auburn in 4-6 weeks after discharge. It's typically an out patient procedure, but because Davis is so little, they will want to keep him overnight to observe him.

At this moment, I believe we are fighting a spiritual battle. The Devil is throwing everything he's got at us just trying to get us to turn our backs on God. We will not let him win! We know God is still in control and fighting on our behalf! We will take Davis home again, and it's going to be soon! We thank God everyday for the wonderful family that chose to give life during their darkest hour. We thank God for the heart that is beating in Davis' chest. The first time I heard his new heart beating, I cried tears of joy, just like when I heard his heart beating at our first ultrasound. Thank you all for being with us on this journey and fighting this spiritual battle with us.

Four Months {Davis}

Davis is four months old! On one hand, I can't believe time has flown by, and on the other hand, I can't believe it's only been four months. There are times when time seems to stand still, the wait never ending, and then in a blink, a week has gone by. I am thankful for the strength that God gives us to journey through each day. He gives us just enough manna for today, allowing us to fully depend on him to get us through this.

Davis weighs 14 pounds 3 ounces and is wearing size six month clothes. He's in the 30th percentile for weight and the 3rd percentile for height. Proportionally, he's in the 87th percentile. That's a nice way to say he's short and chunky. He's gaining weight at the appropriate rate, even gaining too much despite the nutritionist reducing the calories to 27 per ounce. His nutritionist has since reduced the calorie count to 24 per ounce. The reduced calories also make it easier for him to tolerate his feeds.

As mentioned in a previous post, Davis received his two month vaccines. Shortly after receiving his shots, he had the typical fever and fussiness, but because of his cardiac output, it lasted a little bit longer and even required going back on oxygen for a few days. The doctors decided it would be best to increase Davis' cardiac output, so they increased the rate of his Berlin from 80 to 85. Additionally, he started throwing up more frequently. Not tolerating feeds is a common sign of heart failure. The body sends blood to all the major organs (brain, kidneys, liver), meaning the stomach does not have the blood flow it needs to do it's job. The nutritionist switched his formula from Enfamil Gentlease to Simulac Alimentum, which is easier on the stomach. They also put him on Prilosec and Zantac to help with reflux. All of these changes have helped; Davis has the typical normal baby spit ups with occasional vomiting.

Davis had another swallow study this month, and finally, he passed! I was quite nervous that he wouldn't even participate this time, because he had not shown any interest in a pacifier, but once he figured out something was coming out of that bottle, he figured it out real quick. It was such a relief to see him sucking from a bottle! Davis did not pass for the thinnest consistency, but he did pass for solids, and we can thicken his formula with rice, so he can take it from a bottle. I was disappointed he didn't pass for the thin consistency, but was so proud to see how far he has come. Passing any part of the swallow study meant he was one step closer to being a "normal" baby. This mama cried tears of joy!

Davis loves sitting in his recliner!

His favorite part is visiting with all his friends who stop by to chat!

Unfortunately, bottle feeding has been somewhat of a struggle. Davis did great in the beginning, taking nearly an ounce and sucking the bottle dry. Then he just quit. Flat out refused to take a bottle, a paci, anything. In fact, it was almost like he had developed an aversion to the spoon, nipple, or paci. He could have his whole hand in his mouth, but gag if you touch his lip with the paci. It was very frustrating. Solid foods have been about the same as bottle feeding; it's hit or miss. He's tried avocados, bananas, and sweet potatoes. His favorite so far has been bananas. We were able to get him to take about 8 mLs at one point. Right now, we are taking a step back and just focusing on getting him to take the pacifier again.

 It's already Christmas at Children's! 

I couldn't resist a snap in front of the tree!

This kiddo thinks it's funny to pull out his feeding tube!

It's not so funny when his nurse has to put it back in! :(

The good news is we are moving up on the transplant list! We actually had an offer last week, but we were unable to accept. Davis has only three percent antibodies, which is great, but this particular heart had a particular antigen that one of those antibodies would have attacked, making the risk of rejection higher. Our bodies don't develop antibodies until we are about a year old, which is why Davis can accept a heart of any blood type. So how did Davis develop these antibodies? The doctors think he probably received the antibodies from the blood products (blood transfusions, platelets) he received earlier on. The doctors knew this was a risk, but he needed the blood and platelets to save his life. They told us they would have accepted the heart and gone through with the transplant if Davis had been sick in an effort to save his life. As hard as it was to turn down this heart, we knew it was not the heart for Davis. We are thankful that God has given Davis strength and has kept him healthy and infection free, so that the doctors don't have to consider performing a risky procedure. When we pray, yes, we pray for a heart, but we also pray for the perfect heart for Davis. We know God is working on that, and we thank him for answering our prayers and keeping Davis safe. Sometimes God has to say "No", because He's working on a bigger "Yes!".

Amanda

Halloween

Hudson absolutely loved Halloween this year! Last year, he was still too young to trick or treat, and he wasn't quiet old enough to eat candy. Fast forward to this year, and he was ready! Our little ninja turtle had a blast, and even got to have twice the fun, because he got to trick or treat twice!

The weekend before Halloween, we carved our pumpkins. Tucker spent the morning with us to help, and then he headed back to Birmingham to stay with Davis. I say WE carved pumpkins, but it was really mostly Tucker. Hudson wasn't really interested. He didn't even want to touch the pumpkin guts and seeds. Tucker and I were calling it pumpkin guts. Hudson couldn't say it right, so it came out "pumpkin butts". We couldn't help but giggle each time he said it. Needless to say, Hudson and I played while Daddy did all the hard work. I did help him clean out the "pumpkin butts" though!

 Pumpkin carving fun and the finished product!

Tucker did an excellent job!

The city of Auburn did their trick or treating on Thursday night this year. Auburn High had a game on Friday night, and Auburn University played Ole Miss at home on Saturday. It broke my heart to miss Hudson's first real trick or treat experience, but I was holding down the fort with Davis. Daddy and Shug did a great job of getting him ready for his Halloween party at daycare and for trick or treating that night. He had so much fun that he didn't want it to end! Tucker sent me a video at the end of the night of him at the door crying, begging to trick or treat more. 

 Michelangelo

 Ready to get some candy!

Checking out his loot!

Children's Hospital held all of their festivities on Friday. Davis can't leave the unit without a team of people, and the machine that makes his Berlin function weighs about 250 pounds and has a battery life of about an hour. Due to this, he wasn't able to take part in the Halloween festivities, but that didn't stop us from celebrating! He dressed up like the Tin Man from The Wizard of Oz. It was the perfect costume for him, because like the Tin Man, Davis also needs a heart. 

 This little Tin Man needs a heart!

Saturday morning, Tucker and Hudson headed to Birmingham. Hudson was able to spend some time with his little brother, and we had an opportunity to spend time together as a family, something that rarely happens these days. 

 My heart swells seeing these cuties  together!

These are the moments that help us to persevere in this wait.

Later that night, Hudson got to trick or treat again with his cousin Prudence. It was cool and rainy, but they didn't care. And neither did I. I was so thankful to have the opportunity to spend time with my biggest making memories. We are looking forward to taking both of our boys trick or treating next year!

Amanda

 

Pumpkin Patch 2015

Every year we take Hudson to a pumpkin patch. Last year, we went to Jack-o Lantern Lane in Lafayette. It's a legit pumpkin patch, meaning they actually grow the pumpkins there on the farm. There are so many fun family activities to do there including the hayride, inflatables, train ride, and a petting zoo. No, they didn't pay me to write this, it's just that awesome! Hudson loved it last year, so we decided to go again this year.

Going to the pumpkin patch meant a morning away from Davis, but Tucker and I feel that it's important to continue to do normal family things with Hudson. We are especially grateful for the doctors and nurses at Children's of Alabama for the excellent care that Davis receives. We felt completely confident leaving Davis in their very capable hands, so that we could have some much needed family time together. Of course, it was bittersweet. We enjoyed watching Hudson run, play, and giggle, but there is always something missing. Without Davis there, our little family is incomplete. We look forward to next year when the four of us can go together. 

 Selfie on the hayride!

 Hudson loved petting the rabbits!

 Checking out the horses.

 Last year, Hudson was too small to slide down this thing. 

This year, he was just the right size!

 Picking the perfect pumpkin takes time. 

You can't rush perfection!

 Trying to get a two year old to pose for a picture is nearly impossible!

 These silly Boswell boys!

 Happy Fall!

We miss Davis!

 You know we had to ride Thomas the Train!

This boy steals my heart everyday!

The cutest pumpkin in the patch is Davis! 

I had to include a picture of him in his pumpkin pajamas!

Amanda

Three Months {Davis}

Our miracle baby is three months old! I am so grateful for everyday that we have with him. I don't want to ever take these days for granted ever again, with Davis or Hudson. Each day we have with both boys is a treasured gift. Tucker and I are so thankful God chose us to be these amazing boys' parents. We just want to soak up every hour, every minute, and every second. Soon they will be big boys, and we will miss these crazy, full, and tiresome baby and toddler days.

The day Davis turned three months old, he weighed 12 pounds and 8 ounces. He weighs about a pound more than that now. They take his weight daily to make sure he's following a growth curve. In order to get him to gain more weight, they were adding micro-lipids to his formula. He was getting 95mLs, which is a little over three ounces per feeding. The mirco-lipids increased the calorie count per ounce to 32. He started to gain too much weight, about 60 grams per day, so they reduced the calorie count to 30. He was still gaining too much weight, so they stopped adding the micro-lipids all together. They increased his feeds to 100 mLs at a regular calorie count of 27 calories per ounce. He's now gaining the appropriate amount of weight, about 20 grams daily. Davis is growing so fast! He is now wearing size 6 months clothes and size two diapers.

Unfortunately, Davis is still being fed by a tube that runs to his stomach. He's had two swallow studies, and he failed them both. The first time, he failed right away. He had the second swallow study two weeks after the first one, and while he had definitely gotten stronger, he still aspirated after 8-9 swallows. He gets tired quickly, and when he becomes tired, it's hard for him to coordinate sucking, swallowing, and breathing all at the same time. We are allowed to dip his pacifier in formula at the start of a feed, so he still associates the taste of formula and the action of sucking with feeling full. His speech therapist said they probably won't do another swallow study until after transplant.

They have also started giving Davis his two month vaccines. He will get a monthly shot of an antibody that prevents RSV. He had his first round last week. He also received his DTAP vaccine last week, and I know he's scheduled to get another vaccine this week. Being at the hospital means there is a greater risk he could get sick. Hopefully, getting his vaccines will help prevent him from getting sick before and after transplant.

Last week, we were told that the average wait time is three months. Davis has been active on the list a little over two months now. We are hoping that Davis will get the gift of life he so desperately needs, soon. However, we are trusting in God's plan and in His perfect timing. We know he has it all planned out. Sometimes I wish he would let me in on his plan, but that's not how it works. In the book of Isaiah chapter 55 verses 8-9 it says "For my thoughts are not your thoughts, neither are your ways my ways. As the heavens are higher than the earth, so are my ways higher than your ways and my thoughts than your thoughts." I also believe that God is on my side, fighting for our family. Romans 8:28 tells us "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." This means that in this season of darkness, there will be light. God is doing something BIG here, we just need to trust Him and have faith. The Bible tells us "Now faith is confidence in what we hope for and assurance about what we do not see." Hebrews 11:1. Now is the time to persevere in this wait, and watch what God does in and through Davis. He is evidence of a mighty God!

 The nurses at Children's are amazing!

 One of his sweet nurses made this for Davis on his three month birthday.

Please continue to be in prayer for Davis and for us. We had to come up with a new schedule, so Hudson could be home more. This means that Tucker and I don't get to see each other very much, and it only gives us one night a week to be together as a family. It's hard on Tucker and I, but we feel we are making the best decision for both our boys. We also know that this is not forever; it's just one chapter in our book. We believe it won't be too much longer till we are all together again!

Continue to be in prayer for the donor family, as well. We always want them to be included in our prayers. Their tough decision and loss will be our greatest blessing. We will be forever grateful.

Amanda

Hudson

Many of you may be wondering how Hudson is handling all of this. The truth is, being two is a blessing. He doesn't really understand what's going on,why his schedule has changed, or why his little brother can't come home. He knows when Tucker or I are away that we are with Davis. He will say "Davis at the hospital to get better.", and he will often ask to go see him, "See Davis?". We do take him to the hospital for short visits. He gets to talk to Davis, hold his hand, and pat his back during tummy time. If anyone has sacrificed the most during all of this, it has to be Hudson.

Because of this, we do everything we can to do fun stuff while Hudson is in Birmingham with us. He has been to the McWane Science Center, the Birmingham Zoo, and a Birmingham Barons baseball game. We also go to Railroad Park a lot. Hudson loves to watch the trains as they pass. I can't tell you what it means to us to have that time together as a family. We can't wait to do all of these fun things with Davis!

 Fun at Railroad Park

 Hudson loved playing with the trains at the McWane Science Center. 

 The water station was a blast!

 Playing the piano just like in the movie "Big".

 He didn't want to leave.

 Checking out the "elepants" at the zoo.

 Train ride at the zoo.

 His favorite part of our zoo trip was feeding the Lorikeets.

 Birmingham Barons game

Celebrating the first game of the season with Davis.

Another blessing in all of this, is that neither Hudson or Davis will remember any of this. We do our best to keep Hudson's schedule as normal as possible. Even while here in Birmingham, his routine is pretty much the same except he's not at his house.  He has adjusted better than any of us. The good thing is, we know that this season of waiting will not last forever. We will eventually get to go home, and when we do, Davis will be with us. We look forward to that joyous day!

Amanda