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…

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

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

Our Wait for the Glenn

Josiah’s Pre-Glenn cath was done on a Wednesday (April17th) and we did not make it to the CSU until Sunday (April 21st). Not because they didn’t have room, not because Josiah wasn’t stable on his milrinone, but because one of his doctors believed he wasn’t tolerating his feeds…I should tell you that he had only thrown up once in 2 days and had retched once. I could go in to a whole long story about how incredibly irritated and frustrated Anthony and I were about that situation, but the good thing was, we finally did make it to the stepdown unit. I do believe that that whole issue was where I began to speak up and let people know what I thought about things so I guess that would be the good thing to take away from that.

The next day (Monday) was our first full day in the CICU and we had Dani for our nurse. This was the first time we had met her, but instantly loved her! She was the one who said we could and should put some clothes on Josiah (duh, I guess I didn’t think we could with his central line in his shoulder area) and the first nurse that ever took us on a field trip! I knew that the hospital always had fun things planned for the kids, but I never thought about taking Josiah to any of them since he was a baby. That morning Dani told me to make sure Josiah took a good nap today because the miniature farm animals would be out in the garden and we were going to take him to see them. I remember saying “we can take him to that?” and she replied with “absolutely, I just have to go with you since he’s on milrinone”. So, at 3:45pm, mom, Josiah, Dani, and myself all made our way to the garden. It was a beautiful day outside and it was so nice to be able to take Josiah out into the sun! I don’t think he cared a thing about the animals but was more interested in just looking around at the flowers and probably breathing in fresh air!

Josiah with the HUGE, fluffy bunny!

The next several days consisted of many walks through the CSU halls (well, really one big continuous hall). Everyone got to know Josiah as we would stroll with our IV stand from one end to the other. Before we were readmitted to the hospital, Josiah hadn’t really learned to do much. He would smile and make a few noises but that was it. While we were in the CSU however, Josiah started to do so many things! He began to “talk”, chew on his fingers, smile a LOT, and was just a lot more interactive. It was so neat to see him learning new things everyday, but sometimes it would make me a little sad that he was learning these things in the hospital and not at home. But, then reality would hit me and I would have to tell myself that I should be thankful and grateful that my child was still here and able learning these things.

Chewing on those fingers!

 

Celebrating our 3 month birthday (about a week late)!!

 

Meeting Izzy in the library for the first time and listening to a story

Strolling a hall other than the CSU hall!
We took a picture with this picture for the simple fact
that it reminded Anthony and I of Garfield!

 

 

The Pre-Glenn Cath and Decision

Once Josiah was admitted to the stepdown, I was feeling much better about where he was as far as being stable goes. I thought he seemed to be doing much better. I mean, being off of oxygen, tolerating his feeds, off of milrinone, etc. were big steps, right? At this point, Josiah was still 2 months old…wow that seems SO long ago! He was originally scheduled for his pre-Glenn cath procedure on April 29th. After our first morning of rounds in the CSU, it was decided that Josiah would go ahead and have his cath done early since we were already here. The findings from the cath would hopefully give us a better idea as to what our next would be. Josiah was put on the list for his cath the next day (April 15th). Like with anything else, you have to sign consent before this procedure is done…signing consent is never fun. One of the fellows came by that same day to go over the possible risks and mentioned that the biggest risk for Josiah would be going under anesthesia. Later on that day, Dr. Anna Kaiser (one of the cardiac anesthesiologists and the one who actually put Josiah to sleep for his stent and Norwood) came by to go over what she would be doing during the cath. She was able to calm my nerves about the risks of the anesthesia (especially with Josiah’s decreased heart function). She said there wasn’t much to worry about (which was the complete opposite of what I was told earlier), and it definitely made me feel better that she had already worked with Josiah before…love Dr. Kaiser!  Unfortunately Josiah was not able to be added on until Wednesday, April 17th….at 4:30 in the afternoon, talk about squeezing him in!

You can never steal too many kisses!

We were told before Josiah had his cath done, that he would recover back in the CICU. This was totally fine with us as it’s better to be on the more cautious side (especially with Mr. Josiah). Dr. Kim was the one to perform Josiah’s cath and he was wonderful, a very nice guy as well. He said that Josiah’s pressures looked “respectable”, they were not terrible but they were not great either. I guess they were a little better than what they were expecting though. Anthony and I got to go and see Josiah right at shift change. They had him in an actual room, 2117 (little did we know that this is one of the rooms we would become very familiar with). He was still intubated and looked a little swollen. He had a new nurse that we had never met before, Jenna, and she was very sweet. I’ll never forget she had placed his pulse ox on his ear lobe…haha, the first time I had ever seen it there!

Love these pictures of Josiah! Taken on one of the days we
thought he would have his cath but didn’t.

After giving goodbye/good night kisses, Anthony and I ended up coming back home. I called up to the CI that night before we went to bed just to check on our little man. Jenna said he was doing great and that they planned on doing a few c-pap trials to see if they could extubate him. The next morning when I called before we headed back up to the hospital, I was told they were able to extubate Josiah at 5 that morning.  Anthony and I got to the hospital right after rounds were finished so we were able to go right back to see Josiah. His nurse that day was Danielle. This was the first time we had met Danielle, but she soon became another 2nd mommy/hairstylist to Josiah.

The reason for performing Josiah’s pre-Glenn cath a little early was to determine the next steps we should take. A little while after we got to the hospital and visited with Josiah, Anthony and I met with Dr. Wolfe. He went on to tell us that he and Dr. Clabby had met with one another, as well as discussed the different options that they believed to be in Josiah’s best interest, with several of their colleagues. Our 3 options were: 1) Put Josiah back on milrinone to help out his heart a little more, wait in the hospital for about 2 weeks and perform Josiah’s Glenn early. 2) Take Josiah home for a little while, allow him to get a little bigger and hope he can get his Glenn a little farther down the road. 3) Go ahead and list Josiah on the heart transplant list. Both Dr. Wolfe and Dr. Clabby recommended that they felt the best option would be #1. As much as we desperately wanted to bring our boy home, Anthony and I both agreed that option 1 would be in Josiah’s best interest. However, before we set anything in stone I asked if we could speak with Dr. Kanter and I of course planned on talking with Dr. Vidilefsky.

That afternoon I was able to speak with Dr. V on the phone and he agreed that the best thing for Josiah would be for him to go ahead and get his Glenn early. He strongly felt that this surgery would help his heart to not have to work as hard (since it takes a good bit of the workload off of the heart). He also reassured us that he had seen children go on to do ok with moderate heart function.

Around 6:30pm, Anthony and I were getting ready to head home. We figured we would just talk with Dr. Kanter tomorrow since his surgeries seemed to have run a little longer. To my surprise, right as Anthony and I were getting up, here comes Dr. Kanter walking towards our room. We chatted for a few seconds and then I asked him the question that would allow us to make our final decision. I needed to know how Dr. Kanter felt about performing Josiah’s Glenn early. I needed to hear from him that he felt okay and that he felt Josiah had a chance of doing alright. The CICU doctors could tell me all day long that they felt that doing Josiah’s Glenn was the right way to go, but ultimately they are not the ones who were going to be cutting open my son and performing surgery on him. I will never forget that conversation with Dr. Kanter. He told me that “it was a little earlier then he’d like to be doing Josiah’s Glenn”, but that he felt ok with doing it. I remember holding Josiah’s hand while talking to Dr. Kanter, and after he told me that he felt comfortable, I couldn’t help but look at Josiah and start to tear up. There was my little 2 1/2 month old baby, lying there looking up at me. I had one more question for Dr. Kanter and I somehow managed to ask him without losing it. I asked him how he thought Josiah would do. He answered by telling me that he “wished he could tell me Josiah would do fantastic” but he couldn’t tell me that, but he did say “I think think he will do ok”. And with that, Dr. Kanter reached out his arm and gave me a “side hug”…I was kind of shocked, but then I brought it in for the real thing. This conversation gave us a little bit of comfort and allowed us to give the doctors our decision. We would put Josiah back on milrinone, wait for 2 weeks, and then go on to get his Glenn. 

Sweetest little boy ever!

A Week Spent in the CICU

The night Anthony and I spent in the sleep pods (on Friday, April 5th) was probably the longest night of our lives. We were exhausted, emotionally drained, and left wondering how Josiah would do during the night. According to Anthony, the sleep pod we ended up getting that night was much bigger than the one that he and his sister stayed in the night Josiah was born. This pod had a twin bed as well as a pull out chair. To add a little humor to the story, I will tell you that Anthony and I both slept on the twin bed…hah! What a sight. For one, the bed had almost zero support. When Anthony and I both got in we immediately rolled to the middle (or should I say the 1 inch that separated us). I’m sure it would have been a sight to see, and it did kind of give us a little laugh for a split second. Anyhow, we spent the entire night hoping and praying we did not hear either of our phones ring. Any family that has had a child spend any time in the CI, knows how anxious you get any time your phone rings and it's from a “404-785-….” number. A phone call usually does not mean good news. Thankfully we did not receive any calls that night.
The next morning, I called to check on Josiah and to see if rounds had started. Since it was Saturday, rounds didn’t get started until later, so Anthony and I headed down to the cafeteria to grab some breakfast. As soon as we were allowed back, Anthony and I went to go visit our little man.

Mr. Josiah with his monkey

Looking back at our stay in the CICU when Josiah was first born, I have to say it was actually a little easier to see him intubated, sedated, etc. I’ll tell you why…the first time we were there, I didn’t really “know” Josiah. I didn’t know what he really liked or didn’t like, the way he liked to be held in order to calm him down, or how to bounce him when he had gas…I didn’t know any of those little things. This time, I knew every one and couldn’t do any of them in order to comfort him. He was much more active and liked to grab things, and therefore he had to have little wrist restraints put on so he didn’t try to yank out his breathing tube. Talk about heart wrenching…Thankfully he was kept pretty sleepy and as long as I was beside his bed then I could take them off.

Josiah ended up being intubated for a total of about 3 days. It wasn’t until the 8th, that Josiah was extubated. I remember mom and I leaving for lunch that Monday (Josiah had been awake a good bit of the time and was HATING the breathing tube) and coming back to Breanna (his nurse) and Susie (his respiratory therapist) standing next to each other and smiling like they were up to something. It took me a couple of seconds until I realized that Susie had pulled his tube! What a great feeling =) Not only did I know Josiah had to be feeling much better, but it also meant I could hold my little guy!

Before getting extubated..

 

…and after!

Over the next several days there was much discussion as to why the doctors thought Josiah’s heart had started to “pooped-out” on him and what the road ahead might look like. There was talk about potentially going to the cath lab to rule out a possible reason for decreased heart function, talk about potentially needing and being listed on the heart transplant list, the possibility of performing the Glenn early, and talk about possibly going home if Josiah could bounce back in order to grow a little bigger. Although, for the time being all we could really do was play a the waiting game to see how Josiah would do.

Unfortunately I was not as good about keeping up with what happened every single day like I was during out first stay, but I did take pictures and I do know that we ended up staying in the CICU for a week. After being unexpectedly admitted into the CICU on April 5th, Josiah was moved to the Stepdown Unit on April 14th. Most of the time this move means you are a step closer to being able to go home, and of course that’s what we were thinking…boy how things change…

Best feeling ever! And, this is the day we switched to a Nuk paci

Josiah loves his daddy!!

This picture makes me smile every time

“Many are the plans in a person’s heart,
but it is the Lord’s purpose that prevails.”~Proverbs 19:21

It’s Been a While…Like 5 Months!

I’m sure most of you we're probably thinking we fell off the face of the earth…but we didn’t =) It has however, been a heck of a few (several) months. I had to go back and see what the last thing I even wrote was about. If you thought those 24 days at Egleston were a journey, hold on to your seats as I attempt to catch you all up with what’s been going on with our family since the beginning of April…

I should probably start with a post about what happened after Josiah’s Norwood surgery, as I said it would require a separate post. However, I have all of that written down and I can go back and write about it a little later. Instead I’m going to make this post to try and explain why it’s taken me almost 5 months to update the blog.

Rewind all the way back to the end of March. The weather was still cold out and Josiah had just turned 2 months old. Things at home were going pretty well. Josiah was taking half of an ounce of milk by bottle about 4 times a day and LOVED it. We had about 1-2 doctors appointments a week, and were just enjoying life at home (minus being hooked up to an IV stand with a feeding pump 24/7….little did I know how much I would miss that IV stand with ONLY the feeding pump on it).

Our little heart warrior

On March 28th, Josiah had his 2 month old check-up with his first set of vaccines. I’ll never forget both the doctor and the nurse asking if I came prepared for him to get shots. I had to laugh and say to them, that if I can handle seeing my child’s chest open and literally see his heart beating, then I think I can handle watching him get shots =). After a great check-up we headed home to get ready to enjoy the weekend. Not that we had much to look forward to (except getting to spend time as a family) because we didn’t take Josiah anywhere once we got home from the hospital. With it being flu season and cold outside, we did not want to risk him getting sick.

Starting some time over the weekend I noticed Josiah only wanted to take a little over half of his bottle. I found it kind of strange seeing as how he loved his bottle, so I mentioned it to his home nurse when she came to check on him Monday morning. She said she figured he probably just wasn’t very hungry (since he was on feeds 24 hours a day). It made sense so I figured I would just keep trying and mention it to Dr. Vidilefsky at our appointment the next day.

The rest of the day Josiah continued to only want about half of his bottle. So, on Tuesday I mentioned it to Dr. V and he believed that Josiah was probably not as hungry either (plus it’s a lot of work for heart babies to suck, swallow, and breath). Josiah’s appointment went well and the only thing we decided to do was try to slowly begin to move Josiah on to a bolus feeding schedule (where he would eat for a while and then be able to take a break, eat for a while and then take a break, etc.) We began this feeding schedule on Wednesday and Josiah did wonderful!! Throughout the day Josiah would eat for 2 hours and then take an hour break and then he would be back on continuous feeds throughout the night. Thursday morning around 6:30 am Anthony came out to the living room to tell me Josiah had puked all over him. This didn’t really surprise me since Josiah did have some reflux issues and was pretty volume sensitive (and he had just gotten his 6am meds). The rest of the day was fine without any spitting up so we continued with our new eating schedule.

Friday morning was a different story. I woke up to Josiah not just puking, but projectile vomiting, completely emptying his stomach. There was no going back to sleep after that so we got all cleaned up and started our day. Around 9:30am I had Josiah in his bouncy seat (that I had just put together the night before). He loved it and enjoyed looking at the toys hanging from it. About 10 minutes later Josiah had another big vomit. Now, before we were discharged from Egleston, we went through a specific one-on-one shunt teaching discharge class. I am SO thankful for this class as we learned when it was important to call if certain things happened. Throwing up twice in 24 hours was one of those times to call. I picked up the phone and called Dr. V. After talking to him, he thought it would be a good idea to take Josiah down to the emergency room at Egleston in order to get a stomach ultrasound done to rule out any stomach issues. By this time my parents had made it to the house (just like they did every day during the week to help). So, I hopped in the shower, got ready and we were in the car about 30 minutes later. We got about 10 minutes down the road and Josiah began to puke again. By this time it was starting to concern me as he didn’t really have much left to throw up and it’s not a good thing for shunt babies to become dehydrated. I called Dr. V’s office back and asked if he thought we should stop off at Gwinnett Medical since we were almost to the exit. Since they would end up taking Josiah down to Egleston anyway, Dr. V said to try and make it to Egleston, but if his color changed or if we felt worried, then to pull over and call 911. We made it safely to Egleston, but not without one or two more times of puking, well by this point dry heaving/throwing up stomach bile.

Taken about 10 minutes before he threw up for a second time the morning of April 5th

Once we made it into the emergency room, I checked in Josiah and told them he was a cardiac shunt patient. We were told that if we ever had to come back to the ER with Josiah that he would be taken back almost immediately because he had a shunt, and boy were they right. I don’t even think we sat down for 30 seconds when they called us back to take us to a room. After getting to room 18, it took about another 10 minutes and we were greeted by 2 of the doctors from the CICU, Dr. Chinani and George. After taking a listen to Josiah and noticing that he looked like he was breathing a little harder than normal they said that they were going to admit him to the CSU and probably get an echo done to see how his heart and shunt looked. Another 30 minutes went by until we were taken to a room in the Cardiac Stepdown and by that time they had started Josiah on some Pedialyte.

Going back to a room in the CSU brought back a rush of memories from the 2 days we spent there before we were sent home after Josiah’s Norwood operation. It was the first place I had spent the night by myself with my baby, the place where I learned to become Josiah’s “nurse”, and where I almost had a nervous breakdown because of how many things I had to remember. It was nice to be greeted by a familiar face as well. I ended up going back about twice throughout the day to talk to this specific nurse to just “let it all out”. I am beyond thankful for this lady (I hope she knows who she is if she is reading this…you might remember putting our Medela bottles and meds in the fridge only to find out later someone had thrown them away. No worries though, Josiah refuses to take a bottle now anyway, lol love you friend!).

Waiting on our echo in the CSU

By this time, Josiah was half naked, in his diaper (the way he prefers to be actually) and they had hooked him up to the heart monitor and pulse ox. You could definitely tell he wasn’t feeling too great. A short time later a lady came by with an echo machine and began to take some pictures and video of Josiah’s heart. Before she was finished George came by to take a look at the echo himself (if my memory is correct I believe Chinani might have come back to take a look at the echo as well). I was not prepared to hear what he had to say after the echo was finished. George began to explain to me that Josiah’s heart function looked to have significantly decreased and that they were pretty worried about him. Even more worried because the echo didn’t show a specific reason as to why it had decreased so much.

He went on to tell me they were going to admit Josiah to the Cardiac Intensive Care unit in order to keep an eye in him and to more than likely put in a central line to start him on some milrinone. What??? I thought we were just coming in for an ultrasound of his stomach..not get readmitted to the CICU. Josiah seemed perfectly fine this morning besides throwing up, although by now he did seem a little puny. A million questions began to flood my mind and George was patient enough to listen and answer each one. I wish I could remember everything he told me in those few moments, but all I can remember was it took all that I had to hold back my tears. Actually I don’t think I was successful at that, I’m pretty sure one of the nurses handed me a box of tissues. After George left, I immediately called Anthony to let him know what was going on. For all he knew, I was probably calling him to let him know we were on our way home. As soon as he answered I burst into tears…again I can’t recall what exactly was mentioned over the phone, all I know is that I told him Josiah wasn’t doing very well, he was being admitted to the CICU, and he should probably try and come down as soon as he could.

Rather than pushing Josiah in a crib back to the CICU, I carried him and placed him in the crib in bed space 2114. He didn’t last too long until he started crying again, so I picked him up. I remember looking over and seeing one of our second mommies aka Breanna coming to see us. She asked what in the world we were doing back and I wish I could have told her we were only visiting. I explained what little I knew and let her hold him for a bit. A few minutes later Dr. Wolfe came up with Dr. Hurst and said that they were going to try and get central access on Josiah and that I would have to leave while they did this. By this time Josiah was not a happy camper and was pretty much screaming/crying. I laid him down in the crib and they proceeded to give him a shot of Ketamine in his leg in order to calm him down and slightly sedate him. I remember his crying going from a scream to more of a soft whine, and when I looked back over they had taped him down to a little board thing in order to keep him from moving, that was when I knew I needed to go…Before I left, I asked when they thought I would be able to come back to see him. The nurse told me to call in about 30-45 minutes to check and make sure I was ok to head back.

I headed back to the waiting room that is shared by both the CICU and the NICU to find my parents. We waited and Anthony arrived about 30 minutes later. I ended up calling back to the CICU to see how things were going and if we would be ok to come back and see Josiah. The secretary transferred me to our nurse and I immediately knew  something wasn’t right when she answered the phone. She began by saying “well, things didn’t go as we planned….”. She went on to tell me that while they were trying to put in a central line, Josiah’s breathing and heart rate began to drop. He ended up coding, doing compressions on him for about 45 seconds and they ended up having to intubate him…WHAT!?!? I think I was in too much shock to hear the rest. I asked when we could come see him and she told me that we should be alright to come back in about 15 minutes. And that’s exactly what we did. For 15 minutes we sat in the waiting room waiting anxiously until we could go back to see our boy, not too many words were spoken.

How Mr. Josiah looked when we got to go back and see him

We spent a little while with Josiah once we were allowed back, but unfortunately it was almost time for shift change and we couldn’t stay for too awful long. The doctors and nurse explained that they were pretty worried about Josiah. His nurse suggested that we stay close by that night (of course we weren’t going anywhere). After kissing Josiah, we once again headed back to the waiting room. We reserved a pod room for that night and Anthony and I both went back to try and gather ourselves and make sense as to what had just gone on the past few hours. I hadn’t pumped for almost 7 hours and somehow brought myself to do so through the tears that didn’t seem to go away. About 30 minutes later there was a knock at our door. Anthony opened it and there was George. We invited him in and he took a “seat” on the little night stand table. He began by saying how much bigger...and I use that term loosely…our room was than the room they get to sleep in while they are on call. I appreciated him trying to lighten the mood and mustered up a little laugh. We had always enjoyed talking to George the first time we were at Egleston, but that night I think it’s safe to say he became my favorite fellow in the CICU. He had just gotten off and wanted to stop by to check on us, see how we were doing, and to answer any questions we might have. Did I mention he had just spent 30 min. in the waiting room talking to my parents about everything that was going on? I could go on and on about how soft spoken, kind, and patient that man is, but you’d probably get tired of that.

Anthony and I went to visit Josiah one more time before we tried to get some sleep that night. Of course they were keeping him pretty well drugged up and he just slept the whole time. We ended up making our way back to our sleeping pod and talked a bit about what this whole day had consisted of. Never in a million years would I have thought this was going to happen to Josiah. Not after he had done SOO incredibly well from the time he was born and all the way through the placing of his stent and his Norwood operation. But it had happened. His heart function had severely decreased, and we were left wondering whether or not he would make it through the night.

Little did I know what kind of a roller coaster ride we were in for…

24 Days at Egleston

To recap: Josiah was born with a severe heart defect called hypoplastic left heart syndrome his left ventricle never fully developed) as well as a restrictive atrial septum. He will have a total of 3 open heart surgeries in order to reroute how blood flows to and from his heart (essentially the right side of his heart will do all of the work). Unfortunately these surgeries do not cure him, but they will allow his heart to function in a new way.

I was pretty sure once Josiah arrived I wouldn't have much time to keep the blog updated, and I was right! The little stinker keeps me busy, but that's perfectly alright =) I wanted to be able to keep up with different things that went on throughtout Josiah's hospital journey so I ended up jotting importants things down everyday in bullet form (because I knew there would be no way I would be able to remember specific things from 24 days worth of being at Egleston). I had made a binder for Josiah before he was born. I had planned on (and now do) keep all of his medical information in it and it goes with us EVERYWHERE. It has become my lifesaver and has kept us organized. However, before we came home I used it as my little journal and that's where I kept all of my daily updates. Rather than posting 24 different posts about each day, I've decided to include all 24 days in this post in kind of a diary format. So here it goes...you might want to grab a snack, this might take a while!

January 23-
Josiah Truitt Barfield made is debut at 6:14 pm weighing 7 lbs. 6 oz. and was 20 1/2 in. long. He was transported via ambulance to Egleston somewhere around 7:00pm.



On his way to Egleston!

January 24-
Josiah had a cath procedure done to place a stent in his heart in order to open up the PFO to allow blood to flow between his left and right atrium. The stent will hopefully improve the blood flow and allow his lungs to improve.

The day after his stent was placed

January 25-
Josiah had his best chest x-ray since we've been here! He is still on the ventilator but they are beginning to turn it down (started at 22 (breaths the machine was taking for him) and was down to 14 when we left). They started Josiah on a good bit of meds:
-Lasix (a diuretic to make help him pee to get the fluid off of his lungs)
-Dopamine (to raise his blood pressure)
-Milrinone (to help the squeeze of his heart)
-Pain meds
Anthony and I both got to change Josiah's diaper for the first time! And, I got the pleasure of being peed on =)


Daddy and Josiah

January 26-
Josiah is still on the vent but they started C-pap trials (where they turn off the vent and let Josiah breath on his own). He was still too groggy for them to feel comfortable extubating him, but he did well.

One of our favorite nurses made this sign for Josiah!
You can also see the first of 3 strings of beads
Josiah received while he was at Egleston!

January 27-
Josiah was EXTUBATED today!! Finally no more breathing tube until surgery! We finally got to hear some squeaks and tiny little cries. We also began working with him on taking a pacifier so he can keep up his sucking reflex. He wasn't too sure about having it in his mouth at the beginning of the day but was doing much better by evening with it!

Look at that round little face!

January 28-
They put Josiah under the bili lights at the end of the day yesterday because his bilirubin levels were somewhat high. His count had gone down slightly from 14.7 to 14.1 so they are keeping them on him again today. He's been a little fussy (probably because he's beginning to realize he's hungry and having those stinkin lights on him 24/7 doesn't help either). Josiah's night nurse got the evening round doctors to write and order for me to hold him!! First time I've been able to hold my baby!!!

Should have brought our own shades for thhe day!

Best feeling to finally be able to hold him!

January 29-
They were able to take him off of the bili lights finally! He is still on the same meds (milrinone, prostaglandins, lasix, and heparin). He had a VERY good day and daddy even got to hold him! We both changed diapers as well =) Starting to suck on his paci great (he likes to hold it in by himself).

My two guys! Love this picture!!

January 30-
***HAPPY 1 WEEK OLD, JOSIAH!***
He had another good night, surgery is scheduled for tomorrow morning!

"May the God of hope fill you with all joy and peace as you trust in him,

so that you may overflow with hope by the power of the Holy Spirit"

~Romans 15:13

Resting up before our big day tomorrow!

January 31-

Surgery day! This requires a separate blog post!

February 1-

Today was a good day. He also had a good night once they got the bleeding and his blood pressure under control (around 2:00am). He is peeing good and his chest tubes are still draining a little bit. They increased his sedation and pain medication so he would sleep and not be so fidgety. He doesn't look nearly as swollen as I was thinking he would (nurses said they tend to get more swollen and it peaks at around 12 hours after surgery). His chest x-ray looked a little hazy/wet, but they said that is to be expected after major surgery. We will be out of the critical 24 hours after surgery period around 7:00pm tonight.

*We've chosen not to post any pictures of Josiah right after his surgery. It was hard for us to see, so we can only imagine what it would be like for you all to look at. I will tell you that he did come back with his chest open (as do the majority of babies when they have the Norwood), was very swollen, and had 3 big chest tube, a small chest tube, pacing wires, 2 heart lines, a catheter, breathing tube, and arterial line in his leg, as well as all of the other IVs he was hooked up to before surgery. So, it was quite a lot to take in.

February 2-

Had a good night and he is doing well for only being 2 days out from surgery. His chets x-ray looked a little more hazy but they said it could be the exposure of the x-ray. Dr. Kogon (the other heart surgeon) came by today and said Josiah looks good enough to have his chest closed!! He plans to do this tomorrow himself since Dr. Kanter is out of town.

Swelling almost all gone after only 2 days!

February 3-

Dr. Kogon closed Josiah's chest this morning!! Apparently it took a good bit of sedation and pain meds to knock him out to close so he slept basically all day. He looks like a little old man, poor thing! They've made him pee just about everything out...pretty sure he doesn't have much left to pee! They started him back on TPN and lipids for his nutrition (this is what he was on before surgery as well). They may start to wean him off of the vent tonight if he starts waking up.

My poor little man...looks exhausted!

February 4-

Had a good night last night. They took out his 3 big chest tubes this morning!! They also took him completely off of the fentanyl and sedation med. They are continuing to wean him off of the vent, so far we've gone from: 24, 22, 18, 15, 12... he is still on 2 diuretics and other meds.

4 days out from surgery

February 5-

Josiah did well with the 2 C-pap trials they did last night. This morning they removed: his last small chest tube, catheter, and his breathing tube!! I got to change his diaper today. They also brought a mobile to hang over his bed for him to look at (he enjoys watching it). He's been very alert today!

No more breathing tube!

February 6-

Today was a BUSY day! I took the 3 classes that were mandatory to take before they will discharge Josiah. They were: a discharge class, CPR, and a carseat class). I was in class from 10-2 and barely had time to have lunch! Josiah was awake pretty much all day and a little irritated (not a good thing since he barely slept yesterday or last night). He wouldn't really take his paci, it would make him gag. They started his feeds today through his NJ tube (start out at 10mLs per hour and increase every 6 hours until he reaches his goal of 18mLs per hour). They started him on a very small dose of ativan just in case he is having some withdrawal from the fentanyl. It seemed to help as he fell asleep within 30 minutes. I went home for the first time since Josiah's surgery (about a week).

Happy boy!

February 7-

Much better night with sleeping! The night nurse swaddled him and he seemed to really like it. They removed one of his heart lines at noon and that means I get to hold him, finally! He is up to 15 mLs on his feeds and should be at full feeds by 6:00 tonight! Apparently, it's not necessarily the recovery from the heart surgery that keeps you in the CICU, it's the feeding! The speech therapist also came by and worked with him on his paci. We were not there when she came but he's starting to do better with it again!

What a great feeling...I'm sure it was mutual!

February 8-
This morning we came in and noticed he had been moved to a crib!! He had a decent night last night minus the fact that he had a be vomit. They stopped his feeds and pushed them back to 10mLs again. They also switched his reflux medication from zantac to prevacid. We met with the speech therapist and we got to try feeding him a bottle. He took a total of about 5 sucks! he did alright, but he did gag a couple of times. They also took out the arterial line in his leg and they are still weaning down the oxygen he is getting from the nasal cannula.

Big boy crib!

February 9-
Josiah had a pretty calm night. He must have gotten a bath as well, because I could smell baby lotion on him =) He did throw up again this morning. They discovered his NJ tube was a little tangled so they took it out and put another one back down. He is back up to 15 mLs again! He has been a little fussy today, but we are thinking he might have thrown up his ativan. We got to put clothes on him for the first time!! He actually had on a 6 month old side snap shirt on when we came in. The nurse said Dr. Kanter had come by that morning and made a comment about how skinny his legs were and told her to cover them up, hah! Good thing I still had his diaper bag in the car (the one I had packed when I was induced). I had packed a couple longsleeve sidesnap onesies. We put his dinosaur one on him!
***This is the night we got called to come back up to Egleston, and it was our one big set back of this journey. I think it might require a separate blog post as well...***

First time having clothes on!

February 10-
Today was pretty uneventful. They kept the breathing tube and small chest tube in him for today. They just wanted him to rest after what went on last night. Josiah pretty much slept all day, but we did get to change a diaper!

Resting up

February 11-
Josiah had a good night and did well on the C-pap trials they started. He was extubated and they took out his chest tube and IV in his right leg! His chest X-ray looked good and his echocardiogram showed the fluid had left his left side/lung had gone away. They stopped his milrinone at 5:30pm and also restarted his feeds!..one step closer to the stepdown unit!!

Resting some more..

February 12-
Josiah had the same night nurse that got the order for me to hold him for the first time (she always gets him cute matching blankets). His chest x-ray looked a little wet so they started him back on diuril (diuretic). They took out the arterial line in his leg (only thing left in him is his NJ tube and his subclavian central line. He is back in a big boy crib and I also got to hold him =) He should be back up to full feeds by 11pm!

Hey Momma!

February 13-
Another good night! We were moved back to pod 3 (where we originally started). I like this pod much better, as it is so much quieter! Josiah did well with his continuous full feeds last night. They pulled his NJ tube back into his stomach so now he has an NG tube! They also switched his heparin over to aspirin and his lasix is now being given through his NG tube. He also got his subclavian line out and an IV put into his right arm...this means if all goes well we get to go to the STEPDOWN UNIT tomorrow!!

Can you tell he's excited to move to the floor!?

February 14-

Today we get to move to the STEPDOWN UNIT!!! What a Valentine's Day present =) His nurse removed his pacing wires this morning (the last things to go before getting moved). We were transfered at 2:00pm and the only things Josiah had were the IV they put in his right arm (just in case they were to need it) and his oxygen (still on 30% through a slow flow nasal cannula). Once we were there I met with lots of doctors and nurses! They also hooked him up to a pulse ox and a heart monitor (but at least this one is portable). I'm thrilled we are close to going home, but I'm not so sure I'm a big fan of the stepdown unit, only because you don't have a nurse with you 24/7 (since they're preparing you to go home) and it's almost too quiet!
Anthony came up to visit tonight! He was dressed up and brought me a gift for Valentine's Day! Josiah and I also made daddy a gift while we were waiting to get moved to the floor. I had gone and printed out 2 pictures of Josiah (one of Anthony holding him and another of just Josiah) and bought a frame to put one of them in. Once I got to the hospital, a child life specialist asked if I'd like to decorate a frame for the other picture. I did, and that's what killed the time while we waited to be moved =)

One of the pictures I used for Anthony's Valentine's Day gift
(it was one of his favorites)!

February 15 and 16-
I actually just noticed I don't have anything written down for these 2 days! That should give you can idea of just how CRAZY those 2 days really were! So I'll try to do this from memory...
15th-
I know this day was full of learning how to do different things! I learned how to draw up his meds with a syringe and how to push them through his NG tube. I also had to watch a video about the NG tube, how to take care of it and how to insert it. Then came the actual test! I first practiced on a baby doll and then I had to put a new one down Josiah! Definitely not something I'd like to do everyday, it certainly wasn't fun for either of us, but I got it down on my first try! His pump for his feeds was also delivered and we went over how to work it. Walgreens came and delivered his meds, and Anthony and I had to sit through a private "1 on 1" shunt teaching class. A nurse came to our room and pretty much taught us all about Josiah's shunt and everything to look for in case it were to get clogged and what to do about it. That took about an hour and our heads were spinning afterwards (SO MUCH INFO...are they sure we're qualified to take this little guy home?!!). Speech came by again to see how he would take a bottle (still gagged a little, so for now he is only allowed to have a paci dipped in breastmilk to practice). Next we met with the physical therapist. She showed us a couple of different exercises we could do with Josiah. She showed us how he would do his "tummy time" on my chest and also an exercise on how to strengthen his core muscles. Josiah was getting a sponge bath right before she showed up, and was not liking it I might add! So, before she left she mentioned how she would recommend giving him a bath. Let me say, I will never give a newborn a bath any other way! Josiah has not once cried during bath time since we've been home, he actually loves it! We strip him down, swaddle him in a blanket and I get in the bathtub with him. Then, you just take out each body part one at a time, wash it, and then wrap it back up. Anthony is in charge of using a cup and pouring water over the blanket to keep him warm =). I'm sure there might be a few other things we went over and people we saw (I'm pretty sure Dr. Kogon and some staff came by as well as a cardiologist).

Catching some Zzzs (no more oxygen either)!

16th-

Today we got to GO HOME!! However, we didn't actually leave the hospital until about 4:00pm. He had his carseat test this morning and did great (he had to sit in it for at least an hour without his oxygen levels dropping)! We talked with a nurtition specialist and she taught me how to fortify my breast milk to make it 24 calories by adding some formula. Josiah also had his hearing test done and one last echocardiogram (actually that might have been done yesterday, not sure). My aunt and uncle were driving back to Ohio from Florida and had gotten to my parents house yesterday. Since we don't get to see them too often, we invited them to come by the hospital with my parents to see Josiah. It was great seeing them and I know they enjoyed getting to meet our little man. Right before they left we wanted to get a picture (since we were also about to be dismissed) Josiah decided to spit up a ton...which pushed things back a little bit. After that was all situated, we started the process of getting packed up! We had the same 2 day nurses for the two days we were in the stepdown and they were great! I remember right before we left the head nurse came in and talked to me and told me how great of a job I was going to do once I got home, and that is where I lost it! I think the past two days finally sunk in and I realized we were actually GOING HOME! Talk about an emotional, crazy, hectic, but exciting time! The craziness of this roller coaster had finally come to a hault (at least for our hospital journey).

This picture still makes me laugh!..Doing his carseat test!

All ready to go home!

I appologize for such a long post, but this was the best way i could think of to document our 24 days at Egleston! Anthony and I both want to say thank you from the bottom of our hearts for all the many prayers that were sent up on Josiah's behalf! We ask that you continue to pray for our little guy as his journey is far from over!!