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!
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