Thursday, May 25, 2017

the Power of Prayer

   I've been keeping notes in my phone after each doctor appointment, used to send updates to family and friends, and since today had much better news than last Thursday, I will post what we have been told so far. Some of the notes are pretty negative, but that's the job of the doctor -to prepare patients for the worst just in case. Even Michael's dad who is a very religious man has told families to say their goodbyes in the ER because he really thought the patient wouldn't make it because of the medical science being presented, only to see them walk out of the hospital a few days later "perfectly fine". 
   Backing up a smidge, here are a couple pictures of a butterfly photo strand Michael hung up next to the frame my mom gave us that will hold a newborn photo with Emma's hospital bracelet. Then a picture from our anniversary when I was at the beginning of "bedrest at home" and Michael picked up lots of stuff that we still had on our Buy Buy Baby registry that we decided was still "needed". We have less money in savings now, haha!
   Monday, May 15th: Emma is measuring 1103 grams today = 2.4 pounds or 2 pounds and 7 ounces, and estimated to be exactly 28 weeks. So that's almost two extra weeks of growth since two weeks ago! But Dr. Greves doesn't want me to go back to work until after whenever she's born. Baby Emma has been gaining an average of 13 grams per day.. So -and aside from doing our monthly budget, I rarely care for math- by 35 weeks she should be 1272 grams = 2.8 pounds (2 pounds, 13oz?) and 1454 = 3.2 pounds (3 pounds, 4oz?) by 37 weeks/ my birthday. I'll keep you posted on if that's how much she grows. My mom said, "Babies don't know math. If you eat, she'll grow." So I have been eating more since she visited for a few days the week before.
   Just a few family photos from recently: Michael is my rock!
    Thursday, May 18th: Today's appointment did not have good news. I was told that Emma's heart structure is "not normal" and her chest is small. It seems like her heart and lungs aren't developing or working as they should. We have to see a pediatric cardiologist about that tomorrow. Dr. Greves said the phrase "not compatible with life" several times this morning.. I cried a lot while he talked to me, thinking of all the cute clothes she may never get to wear. I called Michael after that in case we were able to see the heart specialist that day. The phone reception was bad and with my crying, he later told me that he thought I said they had already delivered her! He got a speeding ticket on the way to the hospital. Being very positive I will say WHEN she is born and survives and we bring her home, it's possible she may have a type of dwarfism because even though overall her body measures 28 weeks, the arm bones between her wrists and elbows, and leg bones from her knees to ankle only measure at around 21 weeks. 
  After this "tragic event", Heather and Kim at VAMP have been super kind about not minding that Michael wants to come to all of my doctor appointments to make sure he doesn't miss any information within "the telephone game". I was taking lots of notes, but he says its not the same, but I really like having him there with me anyway. Heather and Kim have been so great about everything this month too since I had to stay in the hospital for a week and I am so grateful for that. 

   Friday, May 19th: Today they did a 2-hour ultrasound at Arnold Palmer just looking at Emma's heart. I was worried I was going to be admitted again because they put another one of those paper bracelets on my wrist! That doctor, Dr. Fleishman, told us that it's not a major heart issue. He did say there is a small issue but not a threat to life and could be fixed when she's a little older, like one or two years old. However, if its a lung issue that would be a different outcome. But thats something we'll have to talk to Dr. Greves and maybe the geneticist, Kristan, on Monday. Her chest is measuring small, hence possibly having dwarfism. Plus short arm and leg bones too, so if her lungs aren't developing properly, or they can't get to a healthy size because of her small chest, it's possible she may not be able to breathe on her own. He says she's fine now because I'm supplying her oxygen. If she has Thanatophoric Dysplasia then that's really bad and she will probably die. (There are only about 12 known cases with short term survival from that.) If she has the "regular" kind of dwarfism called Achondroplasia, then that would be okay, as long as her lungs work well. But the bad one is what Dr. Greves said he thinks it is. When the ultrasound tech measured her head, it averaged at 29 weeks and 4 days. She told us it's just an estimate, but even if it was only 29 weeks, that's a full week of growth in 5 days!
   My mom called me around 8pm to let me know that Grandpa Narles had gone to Heaven around 4am that morning. He was 92 and had also been at the hospital since the beginning of May. I definitely cried a couple days before when I thought about how I wouldn't be able to take Emma out to breakfast with "Papa Narles" as I had been very much looking forward to that. But he'll have forever in Heaven to take Shrimp out to breakfast!  
   The following pictures are ones I really like from July 2010:
   Monday, May 22nd: Today was better. As long as her dopplers and amniotic fluid levels keep looking good and there is no "absence of flow" from the placenta, Emma can stay in until 36- 37 weeks. I told Dr. Greves that 37 weeks is my birthday, so he says we should be able to decide when hers is. She currently has good blood flow through the whole heart, but the heart specialist recommends that Emma get an echocardiogram done shortly after birth. I asked why Dr. Greves thinks she may have TD (thanatophoric dysplasia) vs Achondroplasia. He says its because her chest is smaller than the rest of her body and looks bell shaped. People with Achondroplasia have regular shaped chests, but he can't be sure since she is measuring 5 weeks small in general. The geneticist suggested that Michael and I give blood (after I get a call from my insurance to see if they will cover it since its a test that rarely has to be done) to do a "whole exome sequencing test" that should tell us what type of skeletal dysplasia Emma has, if that's what the short bone issue is. However the test takes four weeks to get results back, so we wouldn't even get the answer until after she's born. Other stats: 151 BPM, AFI (amniotic fluid index) is 13, kidneys are normal. Head & stomach currently measuring at 28 weeks, femur bone 26 weeks, lower leg bones 24 weeks, and lower arm bones at 21 weeks. My stomach- using the measuring tape to vertically check the size of my uterus over my clothes- measured 29 inches.
   (Tuesday, May 23rd) No doctor appointment today, but from my own "research", which Michael does not like me doing much of, I wondered if maybe Emma has Russel Silver Syndrome. That is when a baby or kid grows at half the rate. So a 6 year old is the size of a 3 year old, etc. I've seen that in videos before but didn't know what it was called. That doesn't sound too bad. But Alana keeps saying, "Maybe she's just a small baby!!"
   Tonight Michael gave Emma "a talking to". He kept asking when I was going to come to sleep. When I was taking too long, he asked if I could come lay with him in the bed. When I did he pulled back the covers and lifted my shirt just enough so he could talk to Emma. He whispered to her so I wouldn't hear it, then kissed my stomach a few times. Here are a few silly pictures that we took on May 6th before I was released from the hospital- hence having my regular clothes back on!
    Thursday, May 25th: Today's appt was a lot better -with as good of news as they are allowed to give us! Her chest and abdomen measurements are looking more proportionate than they were before. Plus her bones are straight and she doesn't have a clover shaped head. Curved bones and clover shaped heads are two signs of TD, as well as high levels of amniotic fluid, and Emma has normal/ low levels, which is good. So hopefully her chance of having TD went down just by process of elimination. Of course Dr. Greves had to tell us that she could still have it, but the fact that she doesn't have the main signs of it is very good to us!! So we're back to staying positive with a small baby much more easily as we were at the beginning of the month.  
   On Monday my obstetrician told me that I need to start doing the NST's again (the non stress test via heartbeat and contraction monitors on my stomach), which I was dreading as it could potentially have put me back in the hospital if Emma had any heartbeat "dips". But Dr. Greves said I don't have to do that since I have three appointments each week, so doing the BPP's (Biological Physical Profiles) are enough info they need, and Emma keeps scoring an 8/8 on those each time. Yay! 
   Today he told us that her head estimated at 29 weeks and 5 days, and her femur is showing 26 weeks and 5 days. These are not the exact measurements though- we'll get those with her updated weight on Tuesday. I saw during the ultrasound that her stomach measured around 28 weeks with her chest smaller at 22. Her heart beat was at 141 today and the tech Melissa was able to print out three pictures for us, including one showing her hair flowing in the fluid, and two face profiles. Michael says Emma has his nose and was very smiley about it. He took the pictures to work with him to show his friends! If all keeps going well, she may be delivered on June 13th, since Dr. Greves knows the 11th is my birthday. It seems like 37 weeks and 2 days is the maximum time he wants her in before a C-section delivery. 
   More great news is that my insurance is covering the whole exome genetic testing! So we don't have to pay anything out of pocket for that. Michael and I both gave blood before leaving the office, but those results do take four weeks to get back, which may be about 10 days after Emma is born.
   I found it so interesting that Michael pointed this flower out to me last week. These are the types of flowers that came with the house- in white and light pink. Around January we pulled them all up by the roots because they were dying and planted different flowers a few days later. Somehow this one survived and pushed its way through a foot of dirt to show it's beautiful face. We're trying to take it as a sign that everything is going to be okay and Emma will be strong and push through as well!

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