Probably the very first "real" roller coaster I rode on (and last) was the Loch Ness Monster at Busch Gardens. I hate roller coasters! But I feel like this past weekend has been worse than being at Busch Gardens! Friday started out rocky with Claire still not feeling great due to having the replogle still in her nose and no food. Plus I was anxious because I had my month follow up and was going home for the weekend.
Well, Claire was able to have the replogle taken out and her feeds started back by lunch time which was great! I went to my appointment and was told Claire and I were "anomolies" to say the least. I am not sure how much y'all know about all that I went through, but to sum it up a little, I had severe placental hydrops, polyhydramnios, HELLP Syndrome and severe pre-eclampsia. The severe placental hydrops is just part of what was wrong with my placenta. We started out thinking it was a placental mass of cysts, then a placental mass of aneurysms. (Luckily, finding this ended up being the catalyst to see the Tetralogy of Fallot in Claire). Well, turns out when they sent my placenta off to be tested after birth, they came up with lots of things wrong with it. Of course it had the severe hyrops (or large fluid filled cysts). These were not only in the "mass" part that they thought they saw, but all over the placenta. Other words used to describe it by the doctor were gritty, grainy, in pieces, impossible to analyze, etc. It was also extremely large and swollen. My placenta weighed 805 grams at 29 weeks. A normal 40 week placenta weighs about 500 grams. What caused all of this?? They don't know. Will this happen to me every time?? They can't tell me.
The polyhydramnios is basically too much amniotic fluid. The doctorst think this was caused by Claire's cyst. It was so large in-utero, that it was pressing on her stomach and not allowing her to swallow and process the fluid. So it backed up in my belly. The Thursday after I went into labor, they drew over a liter of amniotic fluid out of me. This helped the contractions to stop. This condition only happens in about 1-2% of pregnancies. Yay me!
The HELLP Syndrome is (I think) basically a step worse than severe pre-eclampsia. HELLP stands for (H) Hemolysis, in which red blood cells are destroyed too soon causing low red-blood cell count; (EL) elevated liver enzymes which indicates the liver is functioning poorly and is unable to process toxins in the body efficiently; and (LP) low platelet count which makes it difficult for the blood to form clots. It is life threatening to the mother and the baby. It only occurs in fewer than 1 in 10 preeclamptic or eclamptic pregnancies and fewer than 1 in 500 pregnancies. Yay me again! When I asked if I would have this again, I was told it was likely, but they really can't say. In my book, it says anyone who has had HELLP in a previous pregnancy is likely to have it again.
I also asked if Claire's cyst had anything to do with my placental cysts b/c the sound so much alike. And it wasn't long after we found my cysts that we found Claire's cysts. We were told the week before she was born, that we may have Mirroring Syndrome where our bodies were copying each other. But they don't know for sure if our cysts have anything to do with each other or not.
So after we went through all of that, I was given a clean bill of health! :) For now at least! So I went home to the Claire Scott Ham Dinner Benefit. I had been sent pictures of all of the people there and was just overwhelmed. Then when I got there, I was even more overwhelmed at all of the hard work that so many people had put into this for our daughter. Everyone was exhausted but still working so hard all day long. We were sold out of ham plates by 4:30! They estimated they sold over 1500 plates!! We were amazed. Thank you to everyone involved in the dinner from the start to the finish. We will be doing a separate Thank You post soon....with pictures!! But please know we were and are so grateful!!!!
I also got to spend the entire weekend with my husband! It was so nice. We haven't been able to just be together since September 28th. It was long overdue to spend time together doing our normal things like going out to eat, hunting on the farm, napping on the couch, etc. I even got Claire's crib bedding put together! I love it! Pictures of this to come later too.
Claire's Missy Momma and Great Aunt Doe came to visit her this weekend too. She loved it and so did they! Missy Momma got to hold Claire for the first time. I am sure they both enjoyed it tremendously!!! Claire had a pretty good weekend. She had been eating all weekend and acting like herself.
When I got back tonight, she had a large stool. So I changed her diaper and gave it to the nurse. I even had to change her outfit b/c she had messed it up. I didn't mind though b/c she has the cutest clothes! The nurse came back with her diaper and said there was some blood in it. My heart sank. I knew this meant no food, replogle back in, and IV. I just cried. All of those things happened and Claire is not happy. She just cried and cried - and I just cried and cried right along with her! These nurses and doctors probably think I am the biggest emotional train wreck they have seen. They did another xray and it came back the same as the last one they did last week. They drew blood and the white blood count is ok. Her hemtocrit is 29. They don't think they need to transfuse her yet. I thought they did since last time it was 28 and she became lethargic and sick.
They will do another xray at 4 am. They have no idea where the blood is coming from which is totally stressing us out. I have asked if the cyst could be pressing on her bowels and irritating them and causing the blood. They don't think so. I asked if the cyst could be restricting blood flow to her bowels, causing the inflammation and blood. They don't know. I asked if her heart could not be pumping enough blood to her intestines causing the same issues. They don't know. I have pretty much begged for a liver ultrasound today. The doctor said she would talk to the team in the morning when all of the other doctors and techs and radiologists were here. I am praying they will check it out tomorrow.
It's so overwhelming not knowing what to ask, how far to push, how many times to ask, what is wrong with your child, etc. I am praying the doctors find an answer and that it's a simple fix. It could be something as simple as food irritation. Who knows! We are just ready for Claire to feel good and happy and healthy.
I just talked to the nurse and they are going to do another urine culture tonight to check for a UTI. She is back on the 2 antibiotics and IV fluids tonight. She also had another large stool, but no blood this time.
We have lots of pictures to post, but I left the camera in the car tonight. So I will attempt to post tomorrow depending on how the day goes. Please keep Claire in your prayers as always!!!
Love,
The Scott Family
