Angel Babies part 2

*Madison*
During one of our stays in the Cardiac Stepdown Unit, we were staying in a room down in the “quiet corner” as I like to call it. I loved being in rooms down at that end of the hall because it was away from all of the craziness and was much quieter. The last time we were in the CSU we were staying in the “suite”. It was much bigger than any of the other rooms, had a much larger bathroom, a bigger couch/bed to sleep on, and more shelf space to store things. Of course once we were released to come back to the CSU another family had moved in to that room. Actually, if I’m remembering correctly we might have switched rooms (they were in the suite and we were in their old room). Every evening mom and I would take Josiah on a stroll through the CSU hallway and we would pass our old room and would notice this family along with their little girl. Finally one night I noticed their sliding door was open and I stopped in to introduce myself, and I’m so glad I did. What a sweet and special family they were! We found out that they were originally from North Carolina and had friends that attended the same church that my aunt and uncle attend, what a crazy small world!

What started out as a quick “hello” turned into about a 20 minute conversation where we found out their little girl, Madison needed a heart transplant. In fact, they had moved from Texas where Matt was stationed with the Air Force in order to wait on a new heart for Madison. This precious family had literally spent all but a couple of days of their little girl’s life in the hospital with her.

Over the next several weeks and even when Josiah was sent back to the CICU, we would chat here and there. They were so sweet to always invite me to lunch with them but I would always be by myself at the time and hated leaving Josiah by himself. I did however get to enjoy a beautiful walk one morning with Amanda. I’ll never forget talking about the day we would be able to take our babies home and start our lives outside of the hospital. To be able to enjoy the little things like giving them baths and carrying them around without being hooked up to an IV stand.

After several months of waiting, this family finally got the call they had been waiting for, a heart had come for Madison. I can’t imagine the feelings of excitement and nervousness they must have been feeling all at once. The surgery they had been waiting for for so long was scheduled to take place later that night, and I asked Amanda if I could come visit them on the 3rd floor surgical waiting room for a bit. I can’t remember exactly what time it was, but I’m pretty sure it had to be some time around 10pm or a little later. It was somewhat strange going up to the surgery waiting room at that time of night since we were used to being there during the day with other families. Instead it was just Amanda, Matt, and a few of their family members. I talked with Amanda for a little while, and then decided I should probably head back and get some rest. During a time that should be so exciting, you can’t help but have a good bit of anxiousness awaiting for surgery to be over.

The next morning I remember seeing Amanda and Matt pass by our room several times. I wanted to step out and say “hi” and ask how Madison was doing, but I could tell as they passed by that something wasn’t right. They did not seem like things were going very well. I later came to find out that the new heart Madison had received for whatever reason was not wanting to work properly. Once again, parents had to make the unimaginable decision to let their little one slip into the arms of our Lord. For the next couple of weeks every time I would pass by room 2130 I would expect to see Madison. I remember so often I would go by that room and she would be swinging in her swing or playing with her string of toys that hung over her crib. I would pass by Matt or Amanda in the hall on my way to lunch or go take a shower, but not anymore…the room was empty and lonely. It never again felt the same once another family moved in to that room.

Matt and Amanda, my heart still hurts for you and your families. You two often cross my mind and I am thankful to have met you guys. What wonderful, strong Christians you are. Although I am sure you had your moments or days, you two taught me such a valuable lesson of patience. I always enjoyed getting to see the 3 of you and I pray the Lord continues to give you the comfort you need until the day you are reunited with your sweet Madison.

*David*
After Joshua passed away the room next door was left empty for quite a few days. Then, one afternoon I noticed they had moved another family in. They had decorated his door by posting David’s name along with a few colored pictures on the glass door. I did not get a chance to speak with this family, but we would see each other at the main entrance of the CICU from time to time when we would take Josiah on wagon rides. I remember one day they took family pictures and asked if they could borrow the rocking chair we had been using for Josiah. This family also had a sweet little girl. One day our child life specialist, Stephanie, had stopped by for a quick “hello” but informed me that she had an “emergency manicure” she had to get to next door…how cute! A few days later this family moved to the Stepdown Unit and I figured this was good news. I later learned that the room they had moved to was usually used for families whose children were very sick and would not make it. A few weeks later I realized the room was empty and that could only mean that this precious little boy had not made it. Once again, a family that we were “neighbors” with had had their little one taken away too soon. It wasn’t until after David’s passing that I have had the chance to message with his mother back and forth.

To David’s family- I am so sorry for the loss of your little man. I hate that we did not get a chance to know you while you were here, but please know you are always in our hearts and in our prayers.

*Shane*
I met the mother of this little boy in the ICU waiting room one day. I learned that her little boy was born premature and in the NICU at the time. He was also born with a heart defect and once he was big enough to have his heart repaired, then he would move to the CICU. I did not see this mom for several weeks until one day we ran into her and her little boy in pod 2 during one of Josiah’s wagon rides. I got a chance to take a peak of Mr. Shane from afar and assured his momma that we would continue to pray for Shane. I didn’t know that Shane had passed away until after we came home. Again, Heaven gained another angel much sooner than we would like…

Christina- It was so nice getting to meet you in the waiting room that day at Egleston. I’ll never forget the love you had for your little boy as it showed so much through the way you would talk about him. I loved hearing that you enjoyed singing “Jesus Loves Me” to him. I pray you continue to feel the comfort of our Lord as I can only imagine the hole that has been left in your heart .

*Children whose families I never met*
**Teenage Boy- The second time Josiah was readmitted back into the CICU from the CSU we were put in a bed space about 2 spaces down from a teenage boy who had just had surgery. We ended up getting moved to a different pod, but I later learned that he had come in for what one would have thought would be an “easy” surgery. After being on ECMO, this young man ended up passing away…

**Baby Girl- I didn’t really know much about this little girl, but I know that she was neighbors with Sawyer. Ashlyn talked with this family and she shared with me that the family had to make the decision to take their little girl off of ECMO.

**Teenage Girl- This girl was moved into the room next door to us towards the end of our hospital stay. The room next door had been empty but one afternoon our nurse shared with us that they would be bringing a surgical case up and that we should stay in our room until things got settled. You would probably be surprised at the number of doctors that surround a child as soon as they are brought back from surgery, just to make sure things are going well. So, when I saw several doctors outside of the room next door it didn’t really phase me, until I ended up seeing more and more nurses and doctors show up…I couldn’t hear anything that was said but I could tell that something wasn’t going as planned. A couple nurses even came in just to see Josiah and to take a mental break from what was going on. This young lady ended up passing away not too long after being brought back from surgery…

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I am sure that there were other babies and children that passed away during our stay at Egleston, but these are the ones that I either had the pleasure of meeting or remember hearing about. The first time we were at Egleston after Josiah was born, I don’t think I even remember anyone passing away (although I’m sure there might have been). This go around at the hospital was completely different. My heart was not prepared for the amount of children that were lost. Every time we got a new “neighbor” it seemed as though they would pass away…thinking back I don’t know how I got through that except for the Lord giving me what I needed when I needed it.

“The Lord is my rock, my fortress, and my savior;
my God is my rock, in whom I find protection.
He is my shield, the power that saves me,
and my place of safety.”
~Psalm 18:2

To all the families that lost their child- My heart does not know the pain and sorrow you have felt from losing a child. I only know that the heart ache that I felt every time one went to be with Jesus pales in comparison to what you went through. Please know that all of you are prayed for and thought of often. You have all taught me to enjoy and soak in every second that I have with Josiah, because as we are all too familiar with, things do not always go as they are planned, they can change in an instant…

 

Angel Babies part 1

I have been “writing” this post for quite some time in my head and had been debating whether or not to actually write about this and if so, when to post it. For one reason or another I have had many of the families we met at Egleston, whose children did not make it, on my heart and mind lately and I thought that now would be a good time to remember these heart warrior angels. October is pregnancy and infant loss awareness month. I have also decided to split this post up in to two posts because unfortunately there is a good bit to write about.

*Baby boy with HLHS*
During that first week in the CICU back in April, I noticed a family a few bed spaces down from us. I could tell they had a newborn from the type of bed they had him in. Depending on where I was sitting I would see his family come and go from his bedside. A couple days in to our CICU stay I remember walking back to Josiah’s bed space, but I had not noticed the mother along with another woman walk in to go visit the little baby until I heard the mother let out a loud cry. She continued  crying as the nurse and other woman tried to comfort her. I had no idea what had just happened or what she had been told, but one can only imagine it was not good news. My heart felt for this mother and I prayed for comfort for her as well as for the baby and whatever might be going on with him.

The next day while grabbing some lunch I noticed the husband and wife sitting across from each other at a table and just blankly staring. I could tell they were upset but I knew that then wasn’t the time to go up and start a conversation. Later that evening before going home, Anthony and I stopped by the cafeteria again to grab some dinner. I again saw this couple and felt the urge to go and introduce myself. After introducing ourselves we shared a little about what was wrong with our sons and quickly realized that they both were born with the same heart defect (HLHS). I was not quite ready for what this gentleman said to me next. He went on to tell me that their son had received his Norwood, but was on ECOM (basically life support). He had also developed a brain bleed and could no longer remain on ECMO, and that tomorrow  they would have to make the painful decision to take their baby off of ECMO. You quickly learn that there are no words that you can possibly say to a family when they are experiencing something like this. The only thing one can do is pray for the Lord’s comfort, strength, healing, and ultimately His will. Before Anthony and I headed home for the night I was able to meet the mother of this little boy as well.

We did not make it to the hospital until lunch time the next day so we stopped by the cafeteria before we headed up to the CI. I ended up running in to the dad (and their older toddler aged son) of this precious little boy at the condiment station and hesitantly asked him about their baby. He proceeded to tell me that he went to be with the Lord around 11 o’clock that morning. He seemed to have such a peace about everything. I gave him my sincere condolences and Anthony and I headed on up to go be with Josiah. As soon as we turned the corner to start down the long hallway to the CICU I saw the mother to the baby boy. I walked up to her and wrapped my arms around her and told her how sorry I was. We both shared some tears, and I will never forget what she asked me next. She had been pumping ever since her little boy was born and their nurses had been storing all of her milk for when her son would be able to take it. With tears in her eyes she asked if she could donate her milk to Josiah. I of course said yes, (even though that would not be possible since breast milk has to be screened, tested, etc. before it is donated). But, I could not tell this grieving momma no, knowing that this would bring her heart a little comfort. After talking a few more minutes we parted ways, and Anthony and I walked in thanking the Lord for allowing Josiah to still be with us. I hate I cannot remember any of this family’s names, but I will never ever forget them. They were the first of too many families we met along the way that lost their little one.

*Sawyer*
About a month before I had Josiah, a sweet friend from church contacted me and asked if I would mind reaching out to a couple they knew from a previous church they had attended. This couple’s unborn baby boy had been diagnosed with a congenital heart defect known as tetralogy of fallot with absent pulmonary vavle. I had never heard of that diagnosis (heck, I didn’t really know CHDs existed until we found out about Josiah). So, after work I sent Ashlyn an email introducing myself and what not. From that day forward our entire relationship has been nothing but a God thing. We both went to the same OB/GYN, specialist, and pediatric cardiologist…crazy huh? That however, was about the only thing we had in common as far as our little ones go. Like I’ve said before, everyone’s journey is so completely different that it’s pretty hard to tell someone what to expect because you basically take things day by day. I was blessed to be able to meet up with Ashlyn once we came home with Josiah (after his Norwood). We met for lunch one afternoon at a BBQ joint after talking for several weeks over email/Facebook and it was so nice to meet face-to-face! **Note…if you ever go to Hometown BBQ in Lawrenceville, GA, make sure you bring cash ;)**

Sawyer was not due until May, and when we finally realized Josiah was not going to be able to come home any time soon I texted Ashlyn and told her we would more than likely be at Egleston when Sawyer arrived here. Who would have ever thought that?? Sure enough, Sawyer made his big arrival and we were still at Egleston in the CICU at the time. Josiah was in Pod 2 while Sawyer was in Pod 3. Ashlyn and Josh’s family spent a lot of time at the hospital as did our family and we saw a lot of each other over the next couple of weeks. Actually, Anthony’s mom realized she knew Josh’s dad back from several years ago, another God connection!

Without going into too many crazy details, (because I really could write an entire blog post about this precious family) I will tell you that the short 18 days that Sawyer was here, he touched many, many lives. I was so blessed to have been able to meet this sweet little angel a few times. Although, I cannot even begin to fully understand the emotions and feelings that Josh and Ashlyn experienced while they were there. But, I am thankful that we were there together. There was just something about having a family there that you could go to, count on seeing one or two or three of them sitting in the waiting area anytime you walked past, grab a bite to eat with one another, or just talk/sit with each other.

Ok, I know I said I wasn’t going to go into too many details, but the last couple of days that Sawyer was here had such an impact on me. I still think about these moments and interactions pretty much daily. I am sure I will never forget anything about what I am about to type, but just in case…
I will NEVER, ever forget the last day and a half that Sawyer was here with us. I believe it was the second to last evening before Sawyer went to be with Jesus that Anthony and I went and sat with Josh and Ashlyn down in the cafeteria at 1 in the morning (Sawyer had had his heart surgery, but things didn’t go quite as they were suppose to). I couldn’t tell you what we talked about, I couldn’t tell you what they were feeling as the doctors had not given them much hope for their little man, but I pray that just having us there to sit with them comforted them just a little. The following day I was not prepared for one bit. I remember walking back with Anthony to go see Josiah and we were told to wait for about 5 mins. a few seconds later the doors opened and out came Josh and Ashlyn…who literally fell into my arms. I was not prepared for that one bit, but knew instantly that it couldn’t mean they had received good news. Once again, the Lord had put us at the right place at the right time. At this point Sawyer had been on ECMO a couple of days and had been having seizures. The doctors were not giving much hope to Josh and Ashlyn.

That evening around 10 o’clock I packed up my things to get ready to head home. Right as I stepped out of Josiah’s room our nurse mentioned that it might be best if I went the back way. I started to ask why but then I noticed that the curtains were drawn around Sawyer’s bed space…my heart sank and I knew that Josh and Ashlyn had made the decision that absolutely NO parent should ever have to make. Before leaving I asked our nurse a few questions and right before I started to head out, Josh and Ashlyn stepped out from behind the curtain that surrounded where their precious little Sawyer was. Ashlyn noticed that I was still there and she walked over to see me. My heart hurt so deeply for these two as they had literally seconds before just said goodbye to their baby. The first thing Ashlyn said to me will forever replay in my mind, “Well, Sawyer’s with Jesus”…a couple days later, I was able to attend the viewing of this sweet boy. Ashlyn had done the unimaginable and had setup what I guess you would call a memory table of Sawyer. She did such a wonderful job and it displayed those short 18 days Sawyer was with us in such a precious way. It was good to be able to see Ashlyn, Josh and their families as I would often pass the ICU waiting room back at the hospital and expect to see them there, only see empty chairs since Sawyer’s passing. Before leaving I went to go see Sawyer. I had debated whether or not I wanted to as I didn’t know how well I would hold it together, but I am so glad I did. For the first time I got to see Sawyer without any tubes and he looked like an absolute little angel! What a sweet little face he had and the cutest little nose. Before leaving I said goodbye to the family that had been such a comfort to us for the past 2 weeks, and then headed back to the place where I’m sure they probably longed to still be.  

Josh and Ashlyn, please know how much your little boy was loved (I know you already do), how many lives he touched, and how much of a blessing it was for me to have met your little angel. He will forever be in my heart and I although I truly wish the outcome would have been different, I am so thankful that our paths crossed along this journey.

*Joshua*
Josiah and Joshua go “way back”. In fact, Joshua was born in January (a day after Josiah was born) and we were at Egleston at the same time. I remember seeing his mom, Karen, a good bit in the hallway and at Joshua’s bedside but we never got the chance to talk. We did however take discharge class together (one of the many mandatory classes you must take before being discharged from the hospital). Josiah was discharged about a week and a half after I took the discharge class and I assumed that Joshua followed shortly after.

When we were first readmitted back in April, I was surprised to see Joshua’s mom in the CICU. However, if there’s one thing I’ve learned, these heart babies sure have a way of keeping you on your feet. So, I assumed Joshua and his family had to be readmitted at some point like we were. I learned a couple of weeks later that Joshua had never left the CI. We ended up becoming neighbors with Joshua and his family (I think this happened the 3rd time we were sent back to the CI from the CSU). Josiah and Joshua were paired, meaning they shared the same nurse during the day and/or night shift, for several days. A couple days before Joshua earned his angel wings, I ran into his mom before going to get something to eat. She told me that they were going to take Joshua to the Cath Lab but they weren’t giving them much hope for Josh…Once again I scrambled for the right words to say and assured her that we would be praying for a quick, safe Cath and for answers and healing for Josh.

After spending about 3 weeks in the hospital time somehow has a way of getting lost. You tend to only know what day it is based on what’s going on, ie: if there’s dressing changes going on, you know its Monday, and if rounds are late and you find a great parking spot, you know it’s the weekend! I can’t remember when this actually took place, but I remember it was some time after Joshua’s cath lab, that lots of family had gathered in Joshua’s room and they looked to be enjoying some family time together. Deep down I wanted this to be a wonderful celebration of Joshua being able to go home, but I knew in my heart that it more than likely wasn’t. The next day I walked past a room that had become so familiar to me (especially the crib full of Beads of Courage) only to find it empty. My heart ached for Joshua’s family and I couldn’t help but start to question why yet another baby had to pass away during our stay in the CI. I will never forget late one evening while scrolling through Facebook, I came across a picture of Karen holding Joshua up against her chest the evening he passed away. She posted a comment below stating, “I finally got to hold him to my heart…” What a beautiful moment captured in time, that still bring tears to my eyes when I think about it. It is one thing to have a baby that has to have heart surgery and stay at the hospital for a few weeks, but it is another thing to have a baby that has heart surgery and never gets the chance to go home. There is nothing right about that and it breaks my heart for any mother who has had that happen to them…

Karen I still pray for you and your family. I love keeping up with your precious little girl. I will never forget how well mannered and behaved she was at one of the Tuesday night Kids at Heart dinners. Joshua was such a little warrior, and I am glad we were able to meet him and spend a little time as “neighbors”.

…..to be continued