And Fetal Intervention is Back On!

So, we’ve had a turn of events. When Boston said no to a fetal intervention, we had two other doors open at University of Michigan (Motts) and Children’s Hospital of Philadelphia (CHOP) to review our baby’s scans and possibly do a fetal intervention. Both of these hospitals have only done 6 or 7 of our specific procedure whereas Boston had done 30, but both hospitals are at the top of the list for pediatric cardiology and are great places for care.

Michigan said yes. I have talked to their surgeon as well as their pediatric cardiologist several times over the phone as well as via email. They have been wonderful so far. They have actually done this specific procedure on a little girl who also had Turner Syndrome (TS) along with the Hypoplastic Left Heart Syndrome (HLHS) and Restrictive Atrial Septum (RAS). I was actually able to get in touch with this little girl’s mom through a TS support group I am a part of through Facebook, and we chatted on the phone a couple nights ago for about an hour. Her little one is 4.5 years old now, and she feels it completely saved her little girl’s life. That’s what we are praying for, too.

CHOP (as well as Boston) basically said no because of her TS. They just don’t do the procedures on babies with chromosomal abnormalities. Since Michigan had success with it, we feel comfortable with doing this with them. We spent a lot of time in prayer, and I know we had lots of people lifting us up in prayer while we were coming to our final decision on whether or not to say yes to this procedure. There is minimal risk for me. I will be given an epidural and will hopefully be discharged the same day. The risk is for our baby. There’s always a chance of fetal demise-whether she just doesn’t handle the procedure well or they by accident nick an artery or something in the heart that causes major problems (which could also happen in any of her surgeries once she is born). Her heart is about the size of a grape right now, and the atrial septum is so very tiny. This is a tricky procedure for sure. They will give our baby a morphine-like medicine for pain as well as another medicine to keep her from moving. In-utero, I supply everything she needs-oxygen, nourishment, etc.-so this procedure actually requires a lot less work for her little body compared to doing it once she is born where she would need to be sustaining herself.

We will be going to Michigan Thursday, July 11. We will have appointments on Friday and Monday, and then the procedure will be on Tuesday, July 16. We will fly home the next day. They will make a small incision in my skin on my belly and then place a needle through my uterus and into the baby’s atrial septum. They will make a hole and then use a balloon to make it as big as they can, all guided by ultrasound. It still won’t be as big of a hole as should normally be there, but it will hopefully be big enough to release some of the pressure in her heart, which will in hopes make her more stable at birth. This is a high-risk procedure, but she is going to be high-risk regardless of whether we do this procedure or not. There’s always a chance that the hole they make could end up closing up down the road, but that’s part of the risk, part of the experimental procedure. They will do the best they can, and then we will just wait and see. There’s also a chance that we could get to Michigan and end up not being able to go through with the procedure. Whether there is something with me OB-related that they aren’t comfortable with or if they can’t get the baby in the right position or her heart rate doesn’t do well, etc. We could get into the procedure and have to stop for various reasons.

We feel God opened these doors and shut the ones that needed to be shut to direct us to the best place for our baby. We prayed a lot about this and definitely played the “what if” game. But, through this whole journey, we have said we will do whatever we can for her that is medically available. This in-utero procedure is going to be a part of her journey. We are praying it goes perfectly, and she sails through it. But, we are also aware of the “what if” of this procedure. What if we lose our baby girl due to this procedure? How will we handle that? Will we blame ourselves? Will others look at us as a baby killer, rolling their eyes for doing a procedure that is still considered experimental? I don’t know. But, I do know that if we don’t give her this chance, I will surely regret it. We did not go into this decision without prayerfully considering it and crying out to God to lead us to the “right” decision. We are doing what we think as her Mom and Dad is the best thing for her right now, to give her a better chance at life once she is born. We are doing everything medically available for her even while she is still inside the womb just as we would do anything medically available to save either of our other two daughters’ lives today. Even though our little one has two severe heart defects and TS, her life still has purpose and value! We want to do all we can to protect her life. We are praying without ceasing that this goes well. Please join us.

So, we are in the process of working with Motts to get our travel arrangements all set up, and we even have some of our best friends in the whole world planning on making the trip to come spend time with us while we are in Ann Arbor!

New info from recent appointments:

1. We think her restrictive atrial septum (restrictive meaning it’s not closed off just much smaller than needed) may actually have turned into an intact atrial septum (intact meaning the hole no longer seems to be present at all).

2. My amniotic fluid level is on the high end.

3. My scheduled c-section will fall sometime between September 9-12, depending on the coordination of doctor schedules. Even if this fetal intervention is successful, she may still need immediate intervention, but she will hopefully be more stable and have a better chance at surviving what’s ahead. Again, we just have to wait and see once she gets here.

Ways to pray for us:

1. Continued peace about our choice for fetal intervention and that God would calm our nerves.

2. Our baby girl would make it through the fetal intervention just fine.

3. Mark’s work would continue to be understanding and would help work his schedule around all our appointments, Michigan, the delivery and our little girl’s hospital stay(s).

4. A name for our baby girl! LOL! We are still nowhere with a name. Sigh. I really didn’t expect it to be this hard!

5. Praising God for our new church family who has taken us in with open arms and are stepping up in ways I couldn’t have imagined to help us through this time. They have been a huge blessing to us.

Again, sorry for the length... I should probably start blogging more frequently to avoid getting so wordy! Special thanks to those of you who stick it out and read to the very end!

God's Plan Remains Unchanged

It’s been awhile since we’ve updated everyone, and there are several new things involving our little girl. I haven’t had a good chance lately to update the blog because we just moved into our new house a little over a week ago (yea!), and we just had internet set up at the house yesterday. No way was I going to try and put this post together while staring at my hubby’s tiny iPhone screen!

A couple weeks ago we had appointments at Children’s Mercy Hospital (CMH) basically all day long. I switched all my OB and MFM care to CMH to make it easier on Mark and I as well as my great friends who have been taking care of our kiddos for us while we are at appointments so we can take everything in. Now, instead of three different places, three different days, we can do all our appointments in one place, on one day, one right after another. Since I have no emotional ties to any of the doctors I started with since we just moved here, the switch was no big deal for me.

We had been hoping we would get the opportunity to go to Boston Children’s Hospital for a rare (they have only done 30 of these ever) in-utero procedure to open up our baby girl’s atrial septum. The point of this would be to allow more blood flow through to be pumped out into her body in hopes that the release of all the pressure would help save her lungs and make her more stable at birth. Because our baby battled hydrops early on, still has a cystic hygroma and a dilated kidney, they decided they wanted me to have an amniocentesis to confirm whether or not something was going on chromosomally. Depending on what they found would influence their decision on whether or not they thought the procedure would be worth the risk.

We went in for the amniocentesis. I was terrified of what it was going to be like and because I hate needles. This makes me laugh because I have labored and delivered without any medication/epidural, yet I am scared of the pain of a needle going through my belly! Well, the amniocentesis was not nearly as bad as I was imagining. It felt like a shot with a quick shot of pain as the needle went through my uterus (which is a big muscle). They took out some of my amniotic fluid. Our baby stayed safely away from the needle and held pretty still (we watched by ultrasound), which was surprising because she’s usually bouncing all over the place! They did end up hooking me up to a monitor afterwards to see if I was having any contractions because I did feel some different sensations on the side of my belly, which was not where they went through. In the end, I was fine. If something bad were to happen due to an amniocentesis, they said it would happen within the first couple days. We are well past that timeframe now.

The next day we received the preliminary results (we are still currently waiting on the full results). I had a maternity 21 blood test done at 12.5 weeks which came back negative for Down’s and Turner Syndromes. Well, our doctor informed us that the amnio came back positive for Turner Syndrome (TS). I was shocked just because I thought we had pretty much ruled that out. Only 1% of babies make it to birth with TS, but I’ve been told most of the babies who do not make it to birth are lost very early in pregnancy. Our doctors do seem to think we should make it to term, though they do say we are definitely still at risk for stillbirth with the TS and all the other issues piled on top of that. I won’t lie. I got off the phone and bawled. I just felt like our baby girl already has so many issues stacked up against her, I was hoping to not add to the list. You never want anything to be wrong with your child. The good news is that girls with TS can live pretty normal lives. Mentally they are fine (though they can face some learning disabilities); most of the issues come physically. Heart defects usually accompany TS (though it’s not usually something like Hypoplastic Left Heart Syndrome). Kidney issues are common, too (we have found out that not only is one of our little girl’s kidneys dilated, it’s also cystic). They have stunted growth and require hormone growth therapy to get to a normal height as well as go through puberty. They are usually sterile. There can also be other physical features that go along with TS, but every girl is different. We believe she has classic TS.

The preliminary results and ultrasound pictures of her cystic kidney were sent to Boston to review and make a decision. I got the call from Boston last Friday. I could tell as soon as the doctor started talking that he was about to break my heart and tell me it was a no. They basically just felt there were too many issues to go through with the procedure. I was completely devastated. We (us and my local doctors) had banked on this Boston procedure to be a big part of helping our little girl be able to win this battle. I felt like the medical hope I had was crushed. Thank goodness I have a God who works miracles! It’s hard because I do know this is all in God’s hands, and there’s nothing He can’t do for her. He can heal her if He wants to, or He may not. Though I was in tears for quite some time after that phone call, I still have to believe that God’s plan remains unchanged. Going to Boston or not going to Boston does not change God’s will for my baby’s life. So, I hold on to that. Boston wasn’t God. God is so much bigger.

We have appointments this Thursday. We will be re-grouping, I guess you can say, with our cardiology doctors to start putting a plan in place of where to go from here since we will not be going to Boston and how all the new information we have recently received (TS and cystic kidney) will affect our baby once she gets here. The main issue is still the two defects in her heart, then the cystic kidney then the TS.

Many people tell me, “I don’t know how you handle this” or “God won’t give you more than you can handle.” I do think God gives us more than we can handle. I cannot handle this alone. It would be way too crushing, and I would probably never make it out of my bed or stop crying. This is too much for one person, but God does not leave us crushed by our circumstances. He lifts us up not by our own strength but through His strength alone. He cares for us. He has given me an amazing husband to walk this path with, a support group of close friends, family and church family who are praying for us and helping us out in every way they can, an active and amazing support network of CHD (Congenital Heart Defect) moms who I email back and forth with and ask all my questions, a great staff of doctors and nurses who are always available for my questions – never once have I had to talk to an answering machine – and, most importantly, He’s given me Himself. He has truly carried us through this and has stuck so close to my side. I don’t know how anyone gets through something like this without the love and comfort of our Savior. He knew we couldn’t handle this alone, and He’s put in place a great support network for us, to lift us up and to continually pray and encourage us. We are surely not walking this path alone. The support we’ve received has been amazing, from friends and family we know well, to friends and family we’ve not talked to in awhile but who have reached out to us, and the new friends I’ve met now as a “heart mama.”

My baby girl and everything going on with her medically is constantly on my mind in some way. I have to learn about all these issues my child will be facing once she gets here so I can be her advocate and know what to do. I do not want to go into this blinded. I have been researching and reading blogs of other moms who have gone through similar situations to help prepare myself for what this journey will look like and what I should expect to feel emotionally once she gets here. I do pretty well emotionally right now, but there are days when reality sets in, and it just crushes me. I watch my two heart healthy little girls playing and wonder if we will get to this point with our unborn baby girl. Will we be looking at a miracle baby in a year or will we be mourning? I try not to dwell in these thoughts, but they creep in often. But, God picks me back up and puts me back together to keep on going. I am 25 weeks and 3 days today. We still have quite some time to wait patiently (and pray!) and do the best we can to prepare ourselves for what’s to come.

Thanks to all who are praying for us, and thanks for taking time to read our blog J