This past week has been a whirlwind! If you are a Facebook friend some of this will be old news but I am going to try to be a little more detailed although I cant remember 90% of whats happened. Crazy, I know.
First of all---SHE'S HERE!!! Sunni Nicole was born on October 6th at 12:25am. She was 6 lbs. 9 oz. and 19.5 inches long. She came out crying. They swept here away to a little room connected to mine and immediately intubated her. Daddy got to watch while I was still trying to figure out what was going on. Miss Sunni was supposed to wait til Monday to come when I was supposed to be induced but she had other plans. I went from an 8 to a 10 in minutes so there was no time for an epidural. OUCH! That's all I have to say about that.
We waited til about 3:30 am to see her. There were nurses, drs, and medical teams all over her. It was very scary. I was halfway delirious so honestly I do not remember much other than she was one of the 3 most beautiful things I have ever seen. They said she was doing pretty good considering. We saw her again around 7 that morning and they had put her on an oscillator which was supposed to be more gentle but it was loud and kind of scary (it went really fast--Shawn says 100 pumps per minute but I cant verify). They said her heart was having some issues and they weren't getting it to squeeze hard enough and the echo looked like her aorta was narrow and one of the valves was not functioning properly. She was on Nitric Oxide and many, many, many drugs. That first day they basically played with her numbers using drugs and different setting on vents and said they were going to try to keep from going on ECMO but her body was not oxygenating the bottom portion of her body and she was working really hard to keep up with everything so it was still a big possibility.
Day 2--Sunday, October 7th.
ECMO Day. I was still in the hospital just waking up when the phone rang. The nurse told me that Sunni had to be put on ECMO because she was working herself too hard and her heart and lungs needed a rest. We needed to get up there right away to see her before they started. We walked in to once again a whole medical team, a HUGE machine, and my baby girl. I am glad Shawn was there to hear anything they had to say because I couldn't stop bawling. I did not want this to happen because while ECMO saves lives it is also very risky. ECMO is a heart/lung bypass machine that takes blood out of the body, takes carbon dioxide out of the blood, puts oxygen into the blood, and circulates it back into your body. They have to cut into the carotid artery in your neck and stick tubes all the way down to your heart. This scared me to death! Thankfully the surgery to cannulate went well and she was stable for the rest of the day. Her numbers improved immediately and she was able to rest.
Day 3--Monday, October 8th. Sunni was very stable today. She rested most of the day. I was discharged and we left the hospital for the first time. I hated leaving without my baby. That was really hard. We did get to spend time with our boys though. The were in town all week with my mom and I was glad to get to see them. Sunni had an "uneventful" day which was really nice.
Day 4--Tuesday, October 9th. Today was more of the same "uneventfulness" that we are growing to love. She was having some blood pressure issues but they were able to control it with medication. We found out that she would be having surgery early in the morning the next day so that gave us something to worry about. We also met a lady named Julie that had a 4 week old daughter in the same room with us that also had CDH and a similar story to ours. It was really nice and comforting to talk to her the night before surgery and she helped calm a lot of our fears. Her baby is doing really well.
Day 5--Wednesday, October 10th. REPAIR SURGERY We woke up early to see Miss Sunni before her surgery started. I was mostly nervous about bleeding since she was on so much blood thinners (the ECMO machine gets clots which can be very very bad). The surgery had to be done bedside because moving the ECMO machine would be too risky. Soo.....after surgery we found out that her hernia was pretty large (on the left side) and abnormally shaped. They had to put a big patch in and had to get real creative on stitching it in. They could not fit all the contents that were in her chest into her abdomen so they had to put them in a cone like thing called a silo and that was on the outside of her body. The plan was to let her body do its thing (fluid levels even out and swelling to go down) and in a few days see if the intestines would fit in the abdomen to where they could close her up. The dr said she will most likely have really bad acid reflux because her diaphragm was gone around the part that keeps acid from going up. They were not able to put everything back in the right spots (like a normal bodies anatomy) because her liver had shifted and took over. She did pretty well for the rest of this day. She was very sedated and seemed to be resting comfortably.
Day 6--Thursday, October 11. SURGERY #3 That morning we walked in and the surgeon had just made her rounds. She was checking out the incision and silo and "irritated" it (squeezed it). They could not get it to stop bleeding (blood thinners) so they ended up having to do an emergency type surgery. Her spleen had been damaged and that was what was causing the bleeding. They called on the team to decide whether they should remove it or repair it. I was scared to death. I know you can live without your spleen but generally people get sick a lot easier without it because it produced anti-bodies. I know she is already going to be more susceptible to getting sick because she will have lung issues. I was praying for a repair. Praise God---our prayers were answered. They ended up repairing her spleen and got all her intestines back in and she was sewn all up. That poor baby is going to be SOO tough! She had been through so much in 6 days. She did get to rest that day and all was more peaceful after that. I was relieved to have her insides back on the inside. I believe that happened for a reason.....not sure why, but I do.
Day 7--Friday, October 12. They trialed Sunni off ECMO today. They were impressed by the numbers they got and were thinking they may take her off but the head surgeon made the final call to let the poor baby rest since she has had 2 big days right in a row. I agreed 100% with that choice. She got to rest on this day!
Day 8--Saturday, October 13. She was trialed off ECMO twice this day and had alright numbers but not good enough to come off for good. She had a good day but I could tell she was starting to feel pain. She screams but no sound comes out because the tubes down her mouth are between her vocal cords. It is the most heartbreaking thing for me. I cant hold her or comfort her. All I can do is watch. We really can not even touch her much because it makes her blood pressure go crazy. They gave morphine to her every 2 hours or as needed if she went longer. She was very alert today and we got a lot of good pictures of her pretty eyes. I am in love!
Day 9--Sunday, October 14. OFF ECMO She trialed off ecmo and her numbers were good except her co2 levels. They had an echo on her heart done at the same time as the trial off to see how it was working. It looked great. The head surgeon said if co2 was all they were concerned about that it was time to take her off ECMO. She was successfully decanulated by 12:45. We had to leave for that of course. When we came back in that HUGE machine was gone, the tubes out of her neck were gone, and I could see my baby much better. She has had a pretty good day today after getting off ecmo other than the co2 but they are working on that and the numbers are getting much better. YAY! Her dr said we might get to hold her in a couple of days.
I hope most of that made sense. I know the grammar and wording could use some help but I am SO tired and exhausted but I knew I better update and get this written or me myself would forget. I am definitely leaving out the details. This has been the craziest roller coaster of my life. Just when you think you can breathe something happens. Shawn and I are doing ok. We are finally staying in the big Ronald McDonald House here in Houston and it is really nice. The one in the hospital is not all that bad but you have to check in and check out everyday and not really know if you will have a room for sure that night. But here at the big one we can stay 45 consecutive days and we have out own space (that locks!). You can not drink in your room--which totally stinks---thats my gripe. Shawn's gripe is that we have chores! lol We have to sweep the dining room floor, which is huge, and wipe all the tables. But all in all I like it here so far. In the very distant future I would like to become involved somehow with the one in Amarillo. You never think about places like this until you need it! Its a great place!
 |
| A few hours old |
 |
| First pic after going on ECMO (swollen) |
 |
| My Pretty Princess with a Mohawk |
 |
| Already got daddy wrapped around her fingers |
 |
| Coop, Daddy, & Sunni |
 |
| So alert! My fav pic to date! |
 |
| Beautiful |
 |
| After ECMO |
Anyway---now that I have Internet access and a laptop I will be able to update more often. Hopefully after 3 surgeries Sunni will decide to take it a little more easy and we will be on the road to recovery!
