Prayers warriors Baby Charles needs all that you guys have. This is truly the hardest thing that I've ever had to try to write. The tears fill my phone as I write this, Baby Charles and us are at the U of M children's hospital. Charles was born on May 7th at 9:05pm. On the morning of May 9th we got up at 6:30am to feed and he did great. Then Charles had his circumcision at 8am, He came back and that went perfectly well. Everything with our little Charlie was doing so amazing. We had an amazing birth, tons of visitors, fed so well, and they were even talking discharging us after 12 due to how amazingly well he was doing.. Then, they took him to go do his heart and oxygen screening. While we were just waiting patiently for our healthy baby boy to come back in the room instead of our baby Charles coming back in it was our doctor came in and let us know something wasn't okay and that they had to do some more tests. We went with to nursery to watch them draw blood, then suddenly he started turning color and struggling to breathe and we were kicked out of the nursery. After a while our doctor came in and informed us that the NICU team from Fargo were on their way and would be life flighting to come take our baby to the NICU. Those words...those words... Our baby, my baby boy was hooked up to monitors like crazy they were trying to get samples because something wasn't right. It was so gut wrenching to go from we are being discharged to they are taking him and they don't know what exactly is wrong with him. Charles at Wadena before the NICU team got there went through a lot of tests. While we were waiting we had them get ahold of our Pastors. Pastor Megan came up to be with us. It was Daddy, my parents, and me at first. We started praying even before Pastor Megan arrived, but having her there with us gave us a little more calming. We prayed and prayed.. then we heard the life flight coming in...everytime I've heard that before I've always said prayers, but this time it was for my baby boy... the overwhelming feeling of the unknown is so scary. The NICU team came in and went right to baby Charles who was in the nursery with so many doctors and nurses and technicians. We waited for what seemed like a life time... Finally the head NICU lady came out and told us they still weren't sure what exactly was wrong with Charles, they thought possible infection but were going to treat him for three different things just to be cautious. The three different things they started to treat him were infection, heart problem, and one other thing(we don't remember). From there we told them to do whatever they have to do to help Charles out.
We then watched the helicopter take off and take Charles away. We ran home real quick then headed without any hesitation to Fargo with my parents Craig and Tina following right behind. The car ride there seemed to take forever. We talked about how if it is an infection like they were thinking everything would be okay. When we got to the hospital and went to the NICU going through all the washing of hands, taking off our jewlery, and the experience was just surreal. We walked down the hallway to his room and were immediately sat down by the cardiologist who informed us our baby has some problems with his heart, but its not all bad news as long as transportation goes well and there isn't any unforeseen problems, he believed that the outcome would be good. We were informed that the aorta coming out of his heart that branches going up his body and down his body is not connected like it is suppose to be. As well as one valve in his hear also is undersized and he will be needing surgery. He then said they can not do it there because they didn't have any surgeons there who specialize in this kind of surgery so Charles will be put on a mini plane and sent to the U of M childrens hospital in Minneapolis. After this crushing news we felt so defeated, we didn't know what to think or what to do. Thankfully we had family who came to the hospital and talked to us on the phone to support us and give us strength to continue on. We knew that we had a long drive again ahead of us now to go from Fargo to Minneapolis. Thankfully to our friends Jon and kayleen who called and told us we are meeting you at your house and we are driving you to the cities, because there was no way that we could have physically made that drive with everything we just have been through.
We got to the U of M and Charles was here in stable condition and they had a boarding room in the hospital for us to stay at overnight. We tried to get the best sleep we could with everything that has happened, but it wasn't much. In the morning when we went to check on Charles we were informed that before they got him on medication to stabilize him from the NICU team from Fargo in the Wadena hospital Charles our baby boy went through a period where he had no blood flowing to the bottom half of his body and his kidneys and liver took some damage because of it. He is currently in stable condition and we are waiting for his kidneys and liver to improve so they can handle doing the remaining tests such as a angiogram and possibly a CT scan to get a clear picture of his heart and him to be stable enough to handle heart surgery. It is now just a waiting game on his liver and kidneys to improve before they can take any further steps to save our baby boy. God has answered so many prayers today so far. With him stabilizing he has wet his diaper twice that we know of today which is a really promising sign that there is still some function of his liver and kidneys. He now has been moved to the Pediatric Cardiology Department and that is where he needs to be for when it is time for his heart surgery he will be getting eventually. All of the tests they have been doing and medications being used show that he has been stable and not taking steps back and moving forward in baby steps.
As he moved from the NICU to the Cardiology Department we were no longer allowed to stay at the boarding rooms. Thankfully the AMAZING social worker from the hospital told us we had some options and had made a few calls on our behalf. One was the Ronald McDonald house but that the approval process takes a few days before you are approved and can stay there. The other was that one of the Minnesota Vikings football players pays for a room for families going though these types of things at the Hampton inn and she would be able to get us in there until we got into the Ronald McDonald house. We just want to send a HUGE thank you to this football player who is doing this out of the kindness of his heart whose name we do not even know.
This is where Baby Charles and we are at this time. We are now just in a waiting game for his kidneys and liver to improve so the next steps to be taken on his journey to save his life. We will update as we know more, just all we ask is please pray for our baby boy. God and prayers do wonders.
Charles' cardiologist appointment update from yesterday!👇
GUYS! No heart surgery is needed anytime soon😭🥹❤️💙🙌
The appointment went great!
There were no changes to his echo, and they got a clearer view this time, so all looked good and stable for a while now!🥹💙
We brought up concerns about his chest as he has lots of protruding and talked up about his past scoliosis and pulmonology appointments we had and of course they are all connected!! Which makes sense! His spine curve could be making his chest protrude more! So they are going to ALL talk (cardiologist, pulmonologist, and spine doctor) and more than likely schedule a CT scan to check the size of lung and heart and bones to see if they can intervene with fixing his sternum! The sternum and spine if not fixed can be bad for proper growth of his heart and lungs!
We will probably be hearing from them within a few weeks, but we won't have to come back for cardiology for a YEAR NOW! Also got some meds updated as Charles keeps growing like a WEED!🥹🙌
All was good, I went in thinking oh crud our next heart surgery is going to be sooner than later and I WAS WRONG🙌🥁 Praise The LORD!
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