Friday, August 3, 2012

Texas Fetal Center--Houston

Hello!  We just got back from our LONG (1 week) trip to Austin and Houston.  I had my appointments on August 1st but we were gone the whole week visiting family and having a great time.  My pregnancy brain is terrible--so not only am I going to update you all but I will be able to refer back to this when I forget things (all the time).

First appointment (7:15--YUCK)--MRI:  I went in thinking this was going to be a piece of cake; no big deal.  Boy was I wrong!  After getting all scrubbed out and strapped into this machine with stuff taped all over me the very nice gentlemen (thank goodness) slid me into the tube.  I did not make it ONE minute before I started getting dizzy, sweaty, shaky, and panicky.  I have NEVER felt like that in my life and hope to never feel it again.  I pushed the button and started shaking....he pulled me out of there pretty quickly.  It took a good 5 minuted to calm down.  I told him I had to go to the bathroom even though he has asked about 5 times before we had got started.  So I told him I would try again.  He asked me if I thought I was claustrophobic and didn't know it before this.  I didn't know what was going on with me!  So he spent 15 minutes hooking everything back up and slid me in again.  I lasted about 3-5 minutes this time before the SAME thing happened again. OMG!  I was so upset and mad at myself.  I did not know why this was happening.  The guy was super patient and I don't know if he gave up on me or it was his turn to switch but a girl took over from there.  She asked if I wanted to try my side.  I told her that was the very last resort because my back was not going to work.  So she got it all set up and voila!  It was not super comfortable or anything but at least I didn't pass out!  The sonographer later on in the day explained that pregnant people have a lot of weight from the baby pushing on organs and cutting off main veins in your back that carry blood to your head and heart when laying on the back--hence the passing out feeling.  SO--I am SO glad that is over and hope to never ever have to have another MRI as long as I live.  So that took 3 hours and was only supposed to take 1.5 so my appointments had to be backed up because I was already late to the next one.

2nd Appointment: Ultrasound & Evaluation:  This was no different, really, than a normal ultrasound at a normal OB besides they were ALL business and had really good equipment.  I did not get a single picture and she only showed us the profile for a split second and not the face at all.  (Bummer!)  She took a LOT of time looking at every single thing though and measuring anything and everything that could possibly be measured.  She left and went and got the Dr (which is always worrisome) but it ended up that she couldn't find the liver.  The dr (Anthony Johnson) came in and found it immediately and discovered that is was not up (YAY!!)  For you guys that aren't CDH momma's this is usually a very good thing and it means the liver is not up in the chest cavity (yet).  The dr said it was unlikely that it will make its way up there either. (Double YAY!)  After everything was done we were taken to a room--another small,  cold, empty room with a round table and a box of Kleenex.  The dr drew a picture up on the board of a normal baby's chest and then Sunni's.  He did a very good job explaining our situation, typical situations, and possible outcomes.  He explained what the LHR is (Lung to Head Ratio) which is basically a measurement of the head and a measurement of the lungs they somehow manipulate to come up with a number.  I didn't pay attention to what Sunni's number was because I have found out that every case is different and those numbers sometimes do not mean anything at all.  But I do know that he said taking only her LHR into consideration she has about a 40% survival chance.  He did not see anything wrong with the heart but that I was going to have a fetal echo that would tell us more. With all things considered there was only about a 15% chance that Sunni has any chromosomal abnormalities but we couldn't totally rule that out without having an amnio.  He was not going to discuss that with me because he didn't care either way and that a genetics counselor would take care of that end.  Her stomach and some bowels are in her chest cavity that have made their way through the hole (hernia) in her diaphragm.  This means that they are trying to take over and have pushed the lungs and heart to the right side.  Her lungs are small and squished and her heart seems to be doing ok (more info in the echo section).  He told me that he would like me to move to Houston for care between 34-36 weeks.  YIKES!  Thats only 5 weeks away.  I am really hoping its more like 36.  Keep me in your prayers on that.  I need to be here as long as possible for my boys and for work but on the other hand I want to be sure to be there when Sunni decides to make her appearance (or if complications arise).

Pediatric Surgeon--(Dr. Kevin Lally)--This was the guy that kind of got the ball rolling (the first person I emailed there that replied within an hour) so I was super glad that it was him we got to meet with.  He was very optimistic and made the comment that "Some dr.'s might see certain cases like this and give up hope right away---but that is not how I am."  He was very reassuring but at the same time kept us grounded and knowledgeable of the possibilities.  I really liked him.  He explained some of the same things that I already knew about ECMO and the surgery.  He confirmed that the baby has to be stable before the procedure can be done and that the repair of the hernia is not the most critical thing after birth (the function of the heart and lungs is).  I am very confident in him and so glad to have him for Sunni's surgeon.

Genetics Counseling:  (Rebecca Carter)--Her job was to let us know the things that *could* have caused the hernia (like chromosomal abnormalities etc).  She was very good at explaining it and ended with what I knew was coming the entire time.  Did I want an amnio and explained the risks.  When I said no she was totally understanding (which meant a lot considering the Lubbock experience).  I asked her about the blood test that a few of you have told me  about and she filled me in.  She gave me the names of the two labs in Houston that do it and instructed me to call them that evening along with insurance to see which one to go with.  The downside was that the blood tests only tests for 3 things: Trisomy 21, 18, &13 (the worst ones).  The upside is is that its not an amnio and no risks are involved.

My appointments ran so far over that I ended up having to go the next day as well--and we had planned on driving back halfway that night.  Oh Well!

So  August 2nd---Day 2

Blood Work---I had called and figured out which test/lab to go with for the Trisomy testing and had my blood drawn so they could send it over.  Like I said--it only tests for the 3 Trisomy's so please be praying that they all come back NEGATIVE!  I will know in 10 business days.

Fetal Echo cardiogram---If you have never had one of these its kind of like an ultrasound but lasts about 45 minutes and they are focusing mainly on the heart, blood vessels, and arteries.  After the test the Dr came in to talk to me about it (Dr. Gurur Biliciler-Denktas).  Sunni's heart is normal right now.  Everything looks pretty good and is a good size for the most part.  Since it has been moved to the right side and is being squished from the left--the left side is a bit smaller than the right.  She said the blood seems to be pumping find and all the veins seems to be strong and working fine right now.  She said she would like to see me again in 6 weeks and that most problems with CDH babies hearts occur after birth rather than in utero.  One case being pulmonary hypertension where the lungs make the heart work really hard due to high blood pressure.

So that is the summary of my appointments.  They will get my case all together to discuss it and make a plan.  They will contact my dr so that I can get more regular ultrasounds to keep a close eye on Miss Sunni while I am still here.  I still have some unanswered questions that I plain on emailing back to them.  Overall the Texas Fetal Center, UT Health, and Children's Memorial Hermann was a GREAT experience and I am so thankful we went all 11 hours to see them so that Sunni can get the best care possible.  I am so thankful for the people that have prayed and are praying for us.  And I am SO thankful for the people that have helped us so far and the many people that will help us in the (near) future.

I know this journey has barely started and there are many bumps and ups and downs that are to come.  I am so much better prepared mentally.  I did not think there would be a day that I wasn't bitter/mad/upset but I have some a long way.  I am at peace knowing that God has a plan for Sunni.  I already love that little girl more than words.  That doesn't mean that I am not sad and do not wish I could have a "normal" baby girl.  I see pregnant people now and wonder if they are having a normal baby and what burdens they are hiding.  I see pictures of newborn babies and get a bit jealous that their momma's got to cuddle and swaddle them right after birth.

People ask me what I am having and when I say girl I do not have that same excitement I once had and that hurts.  I haven't bought a single thing for Sunni since I found out she has CDH and that hurts.  People ask the boys if they are ready to have a sister and knowing theres a possibility they will never meet her hurts.  I pray there is one day I can bring her home and none of these things will matter anymore.  I will love her more than I already do.  I will be more thankful for her now that I ever would have before.  And I will be more appreciative of small things than I ever have before.  I will never take anything for granted again.  Life is precious and Sunni has proven that to me no matter the outcome.

1 comment:

  1. I am glad that you came away from such a busy week feeling more prepared to face this. Sounds like you have a wonderful team taking good care of you and Sunni! Hang in there, mama. You're in the home stretch, but I know how hard it is to have that big cloud of uncertainty following you around. Sending lots of prayers for you!