the Power of Prayer

   I've been keeping notes in my phone after each doctor appointment, which were later used to send updates to my 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 (he is an ER doctor) who is a very religious man has told families to say their goodbyes 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. 

   Monday, May 15th: Emma is measuring 1103 grams today = 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 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 lately.

   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 would 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. 

   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 that's 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!

  

   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 five 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 tonight Michael gave Emma "a talking to". 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. He never told me what he said because it's a secret between them. 

    Thursday, May 25th: Today's appointment 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 (Thanatophoric Dysplasia), 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 happy 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!

Hospital Stay

   Last Monday (May 1st) started like any regular day. I had a doctor appointment at 8:30am which included an ultrasound followed by getting my weight and blood pressure checked, then talking to my OB/GYN. However, that day when she checked my stomach growth with a measuring tape as she had done the past few appointments before, she said I was measuring smaller. The amount of inches is supposed to be close to the amount of weeks I am: 31 and 1 day then. (I'm 32 weeks pregnant today.) So she had the sonogram tech do another ultrasound. Emma's heartbeat was 161 BPM then, compared to 141 BPM fifteen minutes prior, and I joked about her being nervous. My doctor came back and explained that Emma was measuring about a month behind, so I had to go to the hospital to get some more detailed ultrasounds done. I called Michael asking if he could leave work, then I drove to meet him (I couldn't help but cry, thinking about a lot of bad things happening to our baby), then he drove me to the hospital while assuring me that everything would be fine. 

  We got to the hospital around 10:45am. They asked for my ID and insurance card, along with who my doctor was. I said her name, but apparently she is a midwife (?) so I gave the name of the main doctor at her office. His name was on my wristband later. We kept getting switched between waiting rooms. In one I got my weight, blood pressure, and temperature checked again. I got called back from the 2nd waiting room at 12:05 and was asked why they sent me. "My baby is measuring too small." Then went back to first waiting room where a nurse asked if I had any bleeding, leaking or pain - nope. I was called in to a small patient room for my ultrasound at 12:40, waited ten minutes then had the ultrasound/ anatomy scan for 30 minutes, by a girl named Jen. The main nurse Danette had me change into a baggy hospital gown, asked me to give another urine sample, then set up the NST to monitor for at least 3 hours, waiting to see accelerations. NST = Non Stress Test shown below. One monitor with gel on it was to track Emma's heart rate and the other was to pick up any contractions, but I never had any all week.

  Michael was gone from 2:10-3:10 to get his stuff from work. During that time I had to electronically sign papers about agreeing to pay the bills and I met Dr. Gennette. She was one of the Maternal Fetal Medicine doctors who explained emergency procedures like C-Section and asked if I would accept a blood transfusion if I needed one. I said yes. I got blood drawn and steroid shot in the top of my right leg to help develop Emma's lungs in case she has to be born early, which is very likely. I stayed in Triage Room 12 until a Tower 5 room opened, then was taken to my "hotel" via wheelchair around 5:45pm.  Nurse Shana asked more questions, then I updated everyone with the news, including how Emma's BPP was 8 out of 8. BPP = Biological Physical Profile and each category gets two points: her amniotic fluid, her movement, muscle tone, and her heart rate. The less good news was that she was measuring to be only 26 weeks and 3 days, and 913 grams (2.013 pounds) so the whole point of my stay was to find out why she is so small.  

  Michael was gone for another hour later to take our dog Sasha out. I met my Monday night nurse Cecily, ordered dinner (the menu was really good for hospital food -I got chicken parmesan the first night), called my best friend, then our food arrived at 8:15. I had to do the NST test again for 30 minutes at 9:30pm. We met another Maternal Fetal Medicine doctor, Dr. Greaves, who said everything looked good, but wanted to figure out why Emma is so small. We stayed up watching TV til 11pm. The nursing assistant came in at 11:30pm and 4am to take my blood pressure and temperature again (they did that about every four hours all of the days). I checked a blood pressure chart online and mine was normal every time. Michael slept in the Murphy bed since he couldn't get comfortable in the recliner.

  Tuesday 5/2: We woke up at 7am, met Tuesday nurse Marti, ordered breakfast, then Michael left to take Sasha out. My regular doctor/ midwife came in and told me to ask the MFM (Maternal Fetal Medicine) doctors about staying on bedrest and not working. And if Emma isn't growing enough I might have to have a C-section in 3 weeks if she's still breeched! Another NST was done at 9:30 after breakfast. More blood drawn at 10am. Ordered lunch, got second steroid shot at 3:20 (in my butt). That shot made me sore both times for about 30 minutes and they said it's because they are having to push liquid into a muscle that doesn't have a hole for it. Dr. Greaves and Dr. Gennette came in at 4pm, they said they wanted me to stay until Thursday for more blood tests. I called my supervisor at work about missing those days. The doctors told me that if Emma doesn't grow by two weeks from now she might have to be delivered around May 15th! I met my Tuesday night nurse, Tammy, who checked my heartbeat. I ordered dinner for us at 8pm when Michael came back from getting me stuff to stay occupied, since he had to go back to work on Wednesday and Thursday. We watched "Passengers" on the TV movie channel. Another NST at 9:30. Michael left around 10:10pm.

   Wednesday 5/3: Michael came and snuggled on the hospital bed with me from 6:30-7:15am before work. I had to have Emma on NST all day (starting at 10am) because she kept moving so the monitor couldn't detect her heartbeat. I got food at 10:30am, doctors came in at 11:10. I neatly wrote their notes down in my journal. One of my best friends visited for almost four hours in the afternoon and at 5pm I was able to finally take a glorious shower. I was hooked back up to the NST at 5:45. Michael stayed with me from 7 to 10pm.  The thing in my arm had to be flushed daily with a half syringe of saline. They asked if I could taste it. No, but I could smell it.

   Thursday 5/4: At 5am Emma's heart rate dropped too much and four nurses rushed in. One said, "Get me some gauze." And I immediately asked, "Am I bleeding?" (Even though I wasn't when I had gone to the bathroom about 30 minutes before.) But she said no. Phew! I had an oxygen mask & an IV hooked in my arm from 5:15-5:45am. I was later told the gauze was for the IV? I talked to the geneticist and my MFM doctors again, who said they will do an ultrasound tomorrow and an amniocentesis if needed. Michael and his dad said it would be the best for Emma now, although I was super against doing an amniocentesis around 12 weeks in December, due to the risk of miscarriage. But at this point it could give the doctors (and us) the answers we are looking for and help her after delivery if they know what is "wrong". They had to schedule the procedure for the next day since after the 5am "scare", they wanted to make sure Emma's heart rate doesn't have any more "dips" for 24 hours. I still wore the NST all day and napped when I could. Michael was there from 6:30-9:30pm. Emma did well this night, but was moving a lot (which is also good) so the night nurse had to adjust the monitors on my stomach every two hours.

   Friday 5/5: Michael got here at 7am (he was able to take this day off too which I was really happy about), ordered breakfast, watched "Legend of Tarzan", then he napped. Emma was moving around a lot. Dr. Greaves came in at 11:45 and said we will get the ultrasound and amniocentesis done "this afternoon". I was not allowed to eat or drink until after that. I had an antibodies blood test done at 12:50, and we talked with an extra friendly nurse, Mariann, for 20 minutes. She said she really liked our relationship and pointed to Michael and I saying, "This is good!" because of how much I was laughing while being stuck in the hospital. She said I look like someone who doesn't get upset about things. Then Michael and I both laughed, but I said he's great about keeping me positive. My ultrasound & BPP started at 3:15 (20 mins) and Emma got an 8 out of 8 again. 

   The amniocentesis started at 4pm. I was nervous and praying the whole time, asking God for this to be the right decision and for our baby to not move at all once the needle was in to extract some of the amniotic fluid. I had to sign a waiver before hand that mentioned the risks including miscarriage, and preterm labor. I prayed hard that none of that would happen and Michael held my hand the whole time. Although after the procedure (and everything was fine!) Michael said he really thought he was going to throw up or pass out, but he didn't stop holding my hand until Dr. Greaves took the needle out. It was pokey, and he had to slowly "shake" the needle to get it past fat and muscle. I could definitely feel the long needle (thinner than one used to draw blood) going through my stomach. I say it didn't hurt too much because my eyes didn't water, plus I always imagine it being worse than it is. They told me that a side effect can be cramping, but I didn't feel that. For 30 minutes after it kind of felt like the needle was still sitting in me. Dr. Greaves took three viles of fluid. He showed me after and said, "That's your baby's pee". She must stay nicely hydrated since it was almost clear. Michael left to get some air and brought me back some food from Chick Fil A! Nurse Mariann was able to take Emma off the NST monitors at 7pm because she was doing so well! Michael came back from 7:30-10pm and brought me flowers. He's such a sweet man. We ordered dinner and at one point I joked that we were only there for the good food!

   Saturday 5/6: Nurse Mariann put me back on the NST monitors at 8:45am, Michael got there at 9:30am. I was able to get off the monitors at 11:30, started my discharge procedures, and got the IV taken out of my arm while my release papers were being printed. I was officially free at 1:20. Woohoo! I told Michael he needed to take a picture of me kissing the ground outside. Ha! I'm using a week medical leave and staying on bedrest until after my next ultrasounds. At that point I will go back to work or Emma will have to be delivered, then stay in the NICU until July. Stay tuned, and keep praying!

Emma's Story

This post was written by my husband:

   Welcome to Emma's Story.  My wife and I wanted to start this blog to share our story with those who are interested or want more information on similar cases with their children.  This will be talked about through the eyes of myself and my wife.  This is our experience and feelings with our beautiful little girl, Emma.

   I guess I'll start from the beginning with how we got here.  In October 2015 my wife, Rachel, came to me and said she wanted to start trying to have a baby.  At first I was a little hesitant but for Christmas that year I told her we would start trying.  We tried for a couple months and one day in March 2016 I woke up to Rachel saying she was pregnant. I was ecstatic. I couldn't believe that was real. We were so excited and couldn't wait to tell the family.  I told Rachel that I wanted to get the sonogram first before we told anyone.  We had already had one appointment and couldn't wait to see the first images of our little one.  About 8 weeks in Rachel started to have some cramping.  I told her that we needed to see what the doctors say.  They said it can happen from time to time and to not worry.  The next day I woke up to Rachel crying my name.  I jumped out of bed so fast to see what was wrong, but deep in my heart I knew what was wrong before I even got to the bathroom.  She had a miscarriage.  I held Rachel and told her things would be okay.  I took her away from the bathroom and we sat together on the couch and cried together.  It's not something that we ever wanted, but in some way I think it brought us closer together.  We later went to the doctor the next day and they confirmed it was a "clean" miscarriage.  We were both heart broken, but knew that for whatever reason God had allowed this to happen and that it was in His plan.  We took a few weeks to grieve and then talked about trying again.

   On October 26th Rachel told me she was pregnant.  I was so happy and couldn't believe it.  I will say I was a little hesitant to be too excited just because I knew how the last one went.  I just had to keep telling myself this one would be the one.  That this child would take and not leave us too soon.  We went to the doctors and they again confirmed she was pregnant.  It was a long time waiting around to see our baby on the sonogram.  I kept saying if we can just get past the 8 week mark we would be good.  Well 8 weeks came and went and she was still pregnant.  I started to relax a bit and started to get more and more excited.  November 2nd was the first time we saw our little baby in an ultrasound.  Still growing and looking beautiful even if it did look like a little bean.

   Our doctor appointments came and went and everything seemed to be going as planned.  We started to decorate the baby room.  I painted it and started to decorate it more of a neutral color and decided we would add pops of color to make it gender specific.  I surprised Rachel with brand new baby furniture we had looked at weeks prior.  We were so excited to get things together.  Then came the gender reveal.  We had been trying for months to find out what our baby was going to be.  The doctors said that our baby was probably shy and wouldn't show us the "goods."  Well, one day we walked in for another appointment.  I was expecting the usual, "We can't tell today.  Sorry."  But today was different.  The lady said it's a girl!!!!  We were so excited!!!  My little girl.  Just what we were secretly hoping for.  We could not wait to go and register for a baby girl.  We ran to the stores and started to register for all the beautiful baby girl stuff.  Slowly over time we started to piece together the baby room and all the clothes, equipment, and such.  Rachel and I decided to name our beautiful girl Emma McKenzie.  It was the perfect name for the perfect girl.  Everything was going normal, until one day Rachel went in for her routine appointment.   


*** I will be using this blog now to document everything Baby Emma related. If you would like to read and see things from our life before May 2017 when I was just having a regular healthy pregnacy, plus the 5 documented years before that, please visit my original blog: ☆ Wild Photography ☆.