The Boswells

The Boswells

Friday, April 1, 2016

8 Months {Davis}

So much has happened this last month! Davis has progressed leaps and bounds since we have been home, and we couldn't be more proud of him. For starters, Davis now has two bottom teeth! He's been teething for months, so it was exciting to see his teeth finally pop through. He is sitting up all by himself without any support, and he is getting better with tummy time. Our goal is ten minutes a day. Sometimes he makes it, but most of the time he fusses. We are working on ways to help him reach that goal, even if that means doing tummy time several times a day till he gets to 10 minutes.

Davis has progressed the most with his feeds! When he came home, he was completely tube dependent. Now there are days when we may only have to do 1-2 tube feeds, and that's really only to supplement what he doesn't take during bottle feeds. He gets 145 mLs a feeding, mixed with 75 ccs of rice cereal to thicken it up. That's pretty thick, and he has to work really hard to get anything out of the bottle, even with a level 4 nipple. We are hoping now that he's taking a bottle consistently, that we can get him another swallow study to see if he can safely swallow a thinner consistency. I think that will help him tremendously. He's also doing well with solid food. When we first came home, he was very aversive to the spoon, but now he has no issues with it being in his mouth at all. He will take about a tablespoon per offering. We are working on increasing the amount of solid food he takes per day.

This month, Davis went to see a kidney specialist to make sure his kidney function was what it needed to be. We know that due to everything that Davis has been through (heart failure, Berlin heart, bypass, ecmo), that his kidneys did have some injury. Thankfully, we received good news about his kidneys! The doctor said that if he were to compare Davis' kidney function with that of a "normal" baby, he wouldn't be able to tell the difference. Due to the medications he's on and everything that's happened to him, he is at risk of having kidney problems down the road, so they will continue to keep an eye on his kidney function, but as of right now, hes doing wonderful.

We have everything set up with Early Intervention, and Davis will begin seeing a physical therapist once a month. After his initial evaluation, we were told that Davis was at about the 5-6 month range as far as physical development goes, and he's right on track for everything else. What a miracle! Davis will also see his speech therapist once a month to help him continue to reach his feeding goals. We are so thankful for all the support and help we have in the Auburn/Opelika area. This truly is a great place to live and raise a family!

 Wild hair, don't care!
We joke he has the most hair of all the Boswell boys!

So thankful for this boy and his sweet smile!

Tucker and I can't take credit for all the progress Davis has made. We pray everyday that God will give us the wisdom we need to help Davis achieve his goals and reach these important milestones. And HE does! I'm in awe of HIS wonderful works.


Friday, March 18, 2016

Discharge Day

Davis was discharged from the hospital on January 8th, but before we went "home" to the apartment, the CVICU and CCU staff threw Davis a going home party. He also participated in the bell ringing ceremony for heart transplant patients. Patients ring the bell, and then their finger print, name, and date of transplant are written on the side. It was so very special and a full circle moment for so many who had been on this journey with us. One of the doctors commented that they had never had that big of a crowd and had never had so many nurses come in to celebrate on their off day. It just showed how much Davis was loved! Once again, we can't say enough wonderful things about the nurses and doctors that took care of Davis. You could see it in their eyes and by the expressions on their faces how much they loved Davis and were thrilled to see him be discharged. Many of them saw Davis fight and come back from what seemed like impossible circumstances, and yet, there he was preparing to go home. It was a truly amazing moment!

 Ringing the bell!

Such a tiny finger print compared to all the others.

 They presented Davis with Dr. Suess' "Oh, The Places You Will Go". 
All of the nurses and doctors wrote the sweetest well wishes!
We will treasure that book for a lifetime, because we know God has big plans for Davis!

"For I know the plans I have for you," says the Lord. "They are plans for good and not for disaster, to give you a future and a hope."
Jeremiah 29:11

These people will never know the impact they have made, not just on us, 
but to the many children and families they have served. God is using
them to administer His healing touch and perform miracles!
We are immensely grateful, and we love every single person in that room!

This was our first family picture taken outside the hospital.
We were nervous and scared, but we put our trust in the Lord. 
He guided us through this journey and never left our sides.

"As I was with Moses, so I will be with you: I will never leave you nor forsake you. 
Be strong and courageous."
Joshua 1:5

We've come so far since that first night "home". While there are still hard days and uncertainties, Tucker and I feel confident in ourselves to take care of Davis. After all, God did hand pick us to be his parents. The gratitude we feel in our hearts is indescribable. I'm brought to tears several times a day just thinking about where we have been, what God has brought us through, and the opportunity to cherish every single day with our boys. 


Thursday, February 25, 2016

7 Months {Davis}

We are thrilled to be HOME! I mean over the moon with bells on thrilled! Davis is doing amazing, and we are enjoying catching up on some much needed family time. We are all adjusting to our new "normal". Everyday is a learning experience, especially with Davis' special needs and managing two kids at the same time. Being a parent is exhausting! Thankfully, I don't have to return to work this school year. My sweet friends and I'm sure people all over the state I don't even know donated enough days to get me through till the end of the year. What a blessing!

Staying home with Davis enables me to really focus on him and his needs. Our main focus is physical therapy and eating. I work everyday with Davis on sitting up, rolling over, and doing tummy time. Tucker and I are working diligently to formulate a plan to help Davis learn to drink form a bottle again so that he doesn't become completely dependent on the feeding tube. At clinic this past Monday, our nutritionist suggested we feed him less during the day so that maybe he will become hungry in between feedings. Davis will take a bottle, he is just so inconsistent. During some feedings he will suck the bottle dry, and sometimes, he won't latch at all. We can't seem to pin point what exactly the problem is, but we aren't giving up! We have also been working with Davis on eating solids. It's a slow process, but like I said, we are not giving up. He has tried several different foods-sweet potatoes, green beans, bananas, avocados. His favorite seems to be the bananas. At least, that's the food we have had the most success with. We have also tried giving him some finger foods. He has been doing really well with puffs.

Davis is doing great sitting up! He can sit unaided for several minutes without falling over. He has also rolled over once by himself, and just yesterday, he rolled from his belly to his back twice by himself! We are so proud of how hard he is working! He weighs 17.47 pounds and is about 27 inches long. He wears a size 3 diaper and size 9 month clothes. He can still wear 6 month onesies, but because of his length, he can't wear 6 month pants or footie pajamas. He's a growing boy! Another blessing!

Tucker and I are loving seeing the boys interact with each other. Davis adores Hudson and thinks everything he does is funny. Hudson is a fabulous big brother! He likes to help us take care of Davis and does a great job doing it. He helps gives baths and soothes his baby brother when he cries. He helps pick out a book to read to Davis every night, and even helps Davis say his prayers. It's the BEST thing ever! I can't tell what he says most of the time, but I know the Lord hears every single word!

My Supermen!
My heart in one picture.

The Lord has blessed us greatly! This is not the journey we would have chosen, but God knows best. HE is using everything that Davis and our family has been through for HIS good. We strive everyday to give HIM all the credit and bring glory and honor to HIS name. Thank you for being on this journey with us. Please continue to pray for Davis and for us. This is only the beginning of the wonderful story God has written just for us!


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.


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" 

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!".