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…
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