Yes- wowzers. Praise the Lord we have a little fighter on our hands.
So far, Cohen has been through a LOT. I can’t believe he is only 6 days old. I’ve not even held him as many times as he has had surgery. I’ve held him once and in the past 5 days, he has had 4 surgeries.
We are hoping he has a few peaceful days and then maybe they can close his little chest.
As a refresher:
Cohen was born at 8:55am on Monday. His birthday is June 7, 2010. That is also known as 6-7-10. I just wanted to say it a few times since I hadn’t yet;) I honestly didn’t realize today was Saturday (well now Sunday) until a few hours ago. He was 7 pounds and 6 ounces and 20 inches long. He looks bigger…to most people who have seen him. The nurses tell us he has big feet and long fingers. I think his hair grows daily. His sideburns and the hair on his shoulders are both hilariously cute.
Monday afternoon – He was born with a smooth delivery and taken to the NICU. He even got to meet the friends and family on the way. He remained at Parkland (where he was born) for a few hours). He then headed to Children’s. First though, he stopped by my hospital room for me to hold him He came over to Children’s where he was hooked up to monitors and intubated. His daddy stayed the night with him as I was still in the hospital. Cohen got his first little bath and Brent took some video. It pretty much melts my heart. (make sure you listen to volume)
Tuesday – I got to come see Cohen for a few hours at Children’s. He had a lot of tests run and by the end of the day they were thinking he may need to go into surgery that night. I found this out and it was pretty miserable being at a different hospital. The doctors decided to hold off and go ahead and do a heart cath. The heart cath went good and they were able to get some questions answered about Cohen’s heart. They decided Wednesday would probably be the day for his BT Shunt and TAPVR repair and they went forward with the heart cath on Tuesday night.
Wednesday – He was stable and getting tests run for his surgery. His little foot and leg had an issue with circulation due to the heart cath procedure.They couldn’t find a pulse in one of his feet. It was purple. Finally, they did get a pulse via doppler and were able not to be quite as concerned but to keep an eye on it. I got to come to Children’s in the morning thinking his surgery would be a little after lunch. It was a hard few hours watching him, talking to him and thinking about him going into a big surgery and having just had a surgery the night before. He went into surgery on Wednesday about 3:30pm and you can read more about those updates HERE. The doctor was able to accomplish what he was wanting. The shunt has been working properly as well as the repair of the arteries. Everything else just needs to work now, along with them : /
Wednesday night – He did good most of the night but early morning he started having Atrial Tachycardia. His little heart got up to about 300 beats per minute and they basically had to save his little life with manual pumping and CPR. Scary morning and you can read more about that HERE. This incident set him back majorly the doctor informed us. I think it was around this time when part of his lung also collapsed. They have said this really isn’t a big deal though, and it will repair. It’s also probably because he is on a vent so his lungs haven’t been having to work as they normally would.
Thursday – he did pretty good during the day and night. He had several medications added early morning because of the Atrial Tachycardia incident. It was Thursday morning when we met with the doctor and he told us that out of about 19 babies in the cardiac ICU, our baby was the sickest…also the terms “dodging a bullet” and “not out of the woods” were things we learned to come to reality with.
Friday – His vitals started having some troubles staying where they needed to be. His pressures were off and the doctor did not feel comfortable with what was going on. They decided to take him into surgery and wash out the fluid building up around his heart. Since his chest was already open, they could see where the build up was. They were concerned there could have been a clot under the heart. It is imperative that he not get a clot where the shunt is. He is on Heparin to hopefully prevent this. Dr.Forbess said he was glad he did the surgery and he was able to remove a lot of fluid in the wash that would hopefully help some issues going on. I’ve had several people email and ask about his meds and such. He is on a LOT. If you want specific details, email me and I can let you know. As I’ve mentioned before, Brent is amazing at learning and knowing all of this stuff. He carries around a spiral notebook and writes down some vitals when we want to monitor and ask questions. He writes when we have questions about anything and he writes a lot of the things that we hear from the nurses and doctors. The staff encourages us to do this so we know what is going on. Anytime something happens, they tell us and ask us if we have questions about it.
The staff has been wonderful to us here at Children’s.
Friday evening – Things were still a little shaky because of the recent surgery and them trying to regulate things. It’s a constant game of increasing drips (meds) and decreasing in order to get the vitals where they want them. Brent and I decided we wanted to be back in his room with him Friday night. We hadn’t stayed in the room during the night yet because things had been so hectic. Well, let me tell you, my anxiety was through the roof. I just had a bad feeling. Sure enough, through the night, the nurses and doctors just kept having issues. Cohen wouldn’t tinkle. He was on lasix and still nothing was happening. The staff became concerned that something was going on with his kidneys.
About 9am Saturday, the doctors decided he needed to go into surgery in order to have peritoneal catheter put it. They determined that more than likely, there was fluid around the kidneys making them too tight to work properly. I was a mess before surgery when talking to the doctors. They basically told us with low pressure (which he had for a good 12 hours), the kidneys are the first thing to shut down. This catheter is meant to drain the fluid around the kidneys so that they can start working and he will start to tinkle. They told us that for Cohen to have a chance, his kidneys would have to kick in. If the urine output doesn’t improve in 24-48 hours, they will have to do dialysis. I asked if he can recover from dialysis. Doctor said he could but he would pretty much need nothing else to go wrong during (I believe) the dialysis.
The also told us the ECMO machine wasn’t really a viable option anymore.
He wasn’t really stable before the surgery today, but the doctor said as soon as they began, he kind of got to where he needed to be. He did get a little bit of SVT during surgery but snapped out quickly. He made it through the surgery and most of his vitals have been good. His pressure if at a pretty good point right now. The urine output is still not where they want it to be but the new cath is pulling out a lot of fluid around the kidneys. We hope it keeps doing this and then the urine will hopefully start to come. He is having bouts of acidosis. His heart is working too hard to get oxygen other places when it doesn’t really need to. They have come down on some of his meds and his oxygen level in the past few hours so those things are good things.
So, now we are pretty much waiting and praying.
Poor little guy. I’m sure my description of all of this does not even compare to what it actually entails as far as the actual procedures and what Cohen is having to go through
Brent and I are full of emotions. Constant doctors approaching us tell us ALL kind of things. We can basically sit and watch doctors and nurses evaluate and adjust things with Cohen all day. We don’t. We can’t. We watch a lot but we would go crazy if we did sit by his side 24/7. Though I want to be by his side, he needs the doctors and nurses more right now. I still get to see him, talk to him and touch him anytime I want…minus the 15 +hours of his life he has spent in surgery.
So, we are having staff tell us a surgery may be approaching sometimes only 30 minutes before. How amazing to have a staff so ready to always be doing what needs to be done. It’s a huge blessing for Cohen. We are waiting in waiting rooms for hourly phone calls during surgery. Then, we wait for the doctors to come out from surgeries to let us know how they went. We are on the edge of our seats every time we hear a footstep or a door crack. We have had to run down hallways to get to doctors waiting to talk to us. We have Chaplains, Priests, etc meeting to talk with us. It is 100% minute by minute with our little baby and it is the most uneasy feeling in the world. We know he is in good hands here at Children’s. He is also in the good hands of God. God does have a plan and though the waiting is miserable, there is some reason. The waiting hurts. Thank God Cohen has been such a trooper. I don’t care how unbelievably scared we have been within seconds of feeling a little peace, it’s all worth it. I know I come off as being strong but I promise you I have many moments were I’m not. I can’t count all the moments this week. Is my baby going to make it through the hour? ICK!
Lots of people have emailed and texted and asked how I am doing. I kind of described that above. I’m about as good as I can be. I’m happy to be by my baby all the time but just sad for all he is having to go through. I’m still having lots of the burning c-section pain as my nerves, tissue, etc heals. I had really been slacking on my pain meds but I’ve now been trying to stay on top of them. I’m not use to not showering everyday…and sleeping in a waiting room…in my flip flops… in a recliner. At least Brent is in a recliner on one side of me and my mom is in one on the other. I feel a bit bad about neglecting emails, calls, etc.. but I figure most people will understand. I do appreciate them.
As I type this, I saw two doctors running by. I said I didn’t like it and Brent jumped out and ran out to make sure it wasn’t Cohen. It wasn’t. He is doing good. However, his lactic acid levels need to stop going up and he needs to tinkle! They are going to call us in the waiting room with any major changes. Hopefully there won’t be any.
As soon as I find out about a situation or surgery, I’ve been tweeting and posting it on Facebook. There is such an amazing group of prayers warriors out there. We greatly appreciate everyone!