The Boswells

The Boswells

Tuesday, February 2, 2016

A Different Kind of Christmas {Davis 6 Months}

At first, we were disappointed at the thought of spending Christmas with Davis in the hospital. As it turns out, it was one of the most special Christmases we will ever celebrate! Not only was it Davis' first Christmas, but it was extra special, because he was still with us and doing so well. It was truly a Christmas miracle!

Due to delays with the stomach doctors, Davis was unable to get his g-tube right away. First, they told us they wanted to do the ph probe to determine the severity of his reflux. Turns out it was pretty severe, but that wasn't anything we didn't already suspect. Davis would need a fundolication to help prevent reflux in addition to the g-tube. A fundolication is where they wrap the top part of the stomach around the esophagus, making the opening into the stomach smaller. Before they could do the ph probe, Davis would need to be off of his stomach meds for a week. This meant we were spending Christmas at the hospital.

On Christmas Eve, the whole family came to celebrate with us at the hospital! Emily (Tucker's sister), cooked a delicious Christmas Eve dinner, and they brought everything to us. We had a grand time in the 8th floor waiting area! There was a Christmas tree at the end cap of the 8th floor, and we opened presents there. Phyllis and Al stayed with Davis that night, so that Tucker and I could spend Christmas Eve and Christmas morning with Hudson at the apartment. After Hudson opened his presents, we headed to the hospital to celebrate Christmas with Davis. Phyllis made homemade waffles in the waiting room. She even made waffles for some of the other parents spending Christmas with their babies at the hospital.

 Hudson standing in front of our tree at home.
It was pajama day at daycare.

 Davis loved being able to stroll in the waiting room!

 Christmas Eve fun!
Daddy helping Huddy slam dunk!

 When you spend Christmas at the hospital, 
you find ways to make it fun!

 Auny Honey, Mymama, Kate and Will with Davis

 Uncle Andy, Aunt Honey, Mymama, Will, Aunt Emmy, 
Hudson and Prudence with Davis

 Shug, Aunt Honey, and Mymama with their favorite baby!

 Shug and Big Al with the grands!

 Hudson checking out what Santa Claus brought him Christmas morning.

 Thanks to Red Mountain Grace, our boys had the best Christmas!
Not only did they provide an apartment for us for six months, 
they also bought our boys Christmas presents.
Hudson loves his Ninja Turtle gear!

 Sitting with both of my boys Christmas morning!

 Shug making her famous waffles!

 Breakfast in the waiting area Christmas morning!

 Davis adores his big brother, Hudson!

 Davis with his Christmas loot from Santa Claus!

 This was our attempt to get a family picture Christmas morning.
What a blessed day!!!

 This picture was taken on Thanksgiving day, pretransplant.
This was our Christmas card picture for 2015.

 My babies.
The love I feel for them is overwhelming!

With celebrating Christmas, that week went by pretty quickly. The day before Davis was scheduled to have the fundoplication and g-tube surgery, the stomach doctor told us he would also need to be off aspirin for a week before they could do the surgery. Many heart patients are on aspirin, because it's a blood thinner. Performing the surgery with Davis on aspirin increased the risk of bleeding.  We were extremely upset to say the least! It was obvious that the two teams of doctors weren't communicating. Our cardiac doctors told us they didn't know Davis needed to be off aspirin. They had certainly had patients before that were on aspirin and had the surgery. However, they didn't know in order to do the fundolication, he would need to be off aspirin. We used that week to continue to work on feeding by mouth, in hopes that Davis wouldn't need the surgery.

On January 5th, he finally had the g-tube and fundolication procedure. As much as we didn't want him to have to have a g-tube, it has turned out to be such a blessing. All of his meds are given through the tube. We don't have to worry about whether he spits them out or not, and because of the fundolication surgery, we don't have to worry about him throwing up his meds. He can still get sick with the fundo, but it makes it much harder. It has also taken the pressure off as far as getting him to eat by mouth. It's something we are still working on daily, but we certainly don't stress about it like we did before.

Finally, on January 8th, after spending six months of his life in a hospital, Davis was discharged. What a wonderful day it was!!! We celebrated with a party hosted by the cardiac team at Children's. Many of our family and friends came to celebrate that joyous day with us. All of our doctors, nurses, and therapists came. Many even came to celebrate with us on their off day! We are so thankful to the staff at Children's. God has used them to administer His healing touch, not only to Davis, but to many others as well.

I cannot end this post, without thanking the family that made this possible. We were able to spend Christmas with Davis because of our donor family's precious gift. The gift of life. I can't even begin to imagine how difficult Christmas must have been for them without their sweet babe. Please join us in continuing to pray for them. There's not a day that goes by that we aren't overwhelmed with gratitude for the heart that is beating inside Davis' chest.

Amanda

Thursday, December 31, 2015

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.

Tuesday, November 17, 2015

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

Monday, November 2, 2015

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


 

Monday, October 26, 2015

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