I just need you all to know how much your kind words, thoughts and prayers have meant to Ben and I. We are deeply touched and thank God for all of you. Please continue to pray for our family, we're facing a very long road ahead.
As many of you know, I've recently found out that I'm having some heart issues. On the 28th of Dec, after my echo, we found out I have a Patent Forman Ovale (PFO) which is a hole between my atriums. I have blood mixing from the left atrium to the right atrium, and the right side of my heart is enlarged. Because of the pressure from the PFO, my ventricles are contracting before they're supposed to which is causing some different rhythms and dizzy/light headedness. Right now I'm stable but they are concerned that the pressure will increase in my heart, cause enough PVC's to cause me to pass out, and possibly Pulmonary Hypertension (super bad). It's at that point that it poses a sever risk to the baby. Given the news we got yesterday, it would extremely bad for our precious little one.
Yesterday morning we had our first appointment with the high risk OB department, Maternal Fetal Medicine. It's by the grace of God that we were seen by them because the baby condition may never had been caught. We went in, super excited to see our baby #2 for a whole hour! We went it, had an amazing tech, and loved every second of the ultrasound. I can't tell you what it was, and don't think I could have put a finger on it being something serious but I know in my heart that something was different. In fact, I told my Mom a few days ago that there's just something different with this kiddo and I don't know what it is.
During the ultrasound, the baby was just wild! haha No surprise there given our first wild child was the same way! After doing all the scans of the baby's head, brain, and measurements the tech went to the baby's heart. The little was all over the place, we could see that. The arms were just a going and crossing the chest, making the tech's job a difficult one. So she spent 45minutes on the heart alone. After awhile, I knew something wasn't quite right. She did her job beautifully, talking to us, staying calm, she was great, and I'm soo thankful for her. Her name was Haley and I don't think I'll ever forget her.
After the scan, the doctor who was watching the screen in her office came in and did some scans of her own, just like Haley said she would. She said the doctor was very particular. So a few minutes into the scan she said I'm just going back over the heart, then we have some things to talk about. Ben and I looked at each and knew. He took my hand and kept it. After awhile of her scanning and looking and studying she said this is what I'm seeing. The baby has a VSD, a hole between the ventricules and some problems with where the aorta and pulmonary arteries are coming out and crossing. We said okay, we understood and I thought, VSD, not too big of deal. Our Dr then said bare with me, I want to look some more with Haley and I'll talk through it.
Dr. McCullough and Haley scanned for awhile longer and I looked over at her while she was looking at her screen and I heard her say, it's Tet. I said, as in Tetralogy of Fallot??? She stopped, looking surprised and said yes, how do you know that's what I meant? I then told her I was a NICU nurse. She shook her head and was like oh man. She said, so you know what this means? I answered yes but my husband has no idea what this is, please go over it for him. I was instantly overwhelmed trying to wrap my mine around what this means. All I could think about was the image that popped into my mind of a kiddo I took care of in the NICU with Tetralogy of Fallot following his open heart surgery. Here is a picture of what a heart is to look like compared with what our little one has:
I'm sorry it's blurry, I tried to blow it up a little bit so you could see it better. The following description is from http://www.pediatriccardiacinquest.mb.ca/ch02/tetralogy.html:
"Tetralogy of Fallot involves four defects within the heart. The first is a hole in the ventricular septum or a VSD. Second, the aorta, which is normally attached to the left ventricle, is wrongly positioned overtop the ventricular septum (and is termed an overriding aorta). Third, there is thickening (in medical terms, hypertrophy) of the muscle of the right ventricle (referred to as right ventricular hypertrophy). The fourth condition is a partial or complete obstruction of blood flow from the right ventricle (also termed RVOT-right ventricular outflow tract obstruction). This most often results from pulmonary narrowing (or, in medical terms, stenosis). Pulmonary stenosis is a narrowing of the vessels carrying blood from the right ventricle to the lungs. This narrowing is caused by an underdevelopment of the area around the lung valve and along the pulmonary arteries, and can range from a blockage at the valve to thickening below the valve. There can also be narrowing of the pulmonary artery above the valve, and the vessel can narrow into both of the branches that go to the lungs."
Our little one's case isn't the worst it could be but it's not mild either. The VSD is not real large and while there is a great deal of obstruction from the right ventricle (stenosis), it's not completely obstructed. It's open about 2.5mm. Also, the anatomy is a little different on our little one. When the aorta comes out of the heart it crosses the pulmonary artery right away. But in our little one, it comes out and runs parallel then crosses higher up. As long as baby is inside of me, the little one is okay. Once baby is born, open heart surgery will happen along with a few other surgeries throughout baby's first and second years. Baby is stable, they are just concerned that if my heart deiced to turn for the worse, baby will have to be born early- very bad for a Tetralogy of Fallot kiddo, very bad. But it's in God's hands, not ours and we will be faithful.
Our hour long ultrasound turned into over 2 hours. We both were soo excited to have spent that time "with our baby" Our Dr then told us what was going to happen next. We told here we were planning to go to the States anyways and where I was going to go. She said no, I want you at either Walter Reed in DC or Wilford Hall in TX. She said she knew of the surgeons at both places and if she had her say, it would be Walter Reed. She asked where our family was and we said PA. She said that DC was where we were going. I said I respected her decision and wanted her honest opinion about military hospital compared to Children's of Pittsburgh or Philly. She said that those both were amazing hospitals for pediatric cardio but DC would be just as good and she knew the programs there.
We talked about that for while and Ben and I were okay with DC. Next she asked about doing an amniocentesis to test for other syndromes that are linked with Tetralogy of Fallot including but not limited to Trisomy 21 (Down Syndrome), 18 and 13, and DiGeorge Syndrome. She asked us if the results would have any effect on the decision of the rest of the pregnancy and we said absolutely not. She didn't push or make any judgments. She said okay now that we've established that, it would help with the preparation of the staff at Walter Reed and for you if there were any other syndromes present that could be detected. At first I wasn't about it and asked if I could wait until later. She said waiting until later would put baby at a greater risk. Ben and I talked and agreed that it would probably be the best to do now. She cleared her morning and said to come in right at 0730 the next day (today) and she would take care of it.
We then moved onto time line. I said Mam, we are supposed to leave here (PCS) in about 1 1/2 yrs. She said, well, that changes things. I love this doctor and how she just laid it out and said what was going to happen. We got more info about it today, which is part of the reason why we thought it would be best to wait to post something until we had more info.
SO, while I lay in bed on bedrest, Ben is running around submitting paper work so we can (BY THE GRACE AND MIRACLE OF GOD) be leaving Germany for good and moving to the DC area in FOUR WEEKS. I'm not sure what base we would get assigned to. We have four weeks for this to go through because I have to been in place, set up by 24 wks. I'm 20 wks and 1 day. They also have a back up plan because things are 90% sure to take a lot longer than 4wks with all the military stuff. That is if by the 23wk, 15 Feb, we have not moved they will medi-vac me to DC, forcing the Military to send Ben TDY to accompany me and to pick up the tab. The only bad thing about that is we will have to buy a ticket for Audrey, a one way commercial ticket last minute...$$$. But, if it comes to that, we can deal with it. One way of another, we will be in DC, ready to been seen in 4 wks.
Some very big praises are happening because of this. We won't be separated, we all will be together for this, we will be PCS'ing early, Ben most likely won't be deploying as originally thought would happen right before baby is born (HUGE PRAISE), we will be within 5 hours of both our families for support and help, we found this early and have the process started, and this is fixable.
I had my amnio a few hours ago and am on bedrest. We have the best friends who are keeping Aud for her nap and this afternoon so Ben and talk to his Command and get paperwork turned in. Our church family is taking care of us as well with meals and help. We're so grateful. It's been a tough 24hrs, but we know God has a plan and we will be faithful. We ask that you pray for our paperwork to go through in 4wks so Ben won't have to come back to Germany to PCS us, our house and all that. It's a big prayer but know that it's in God hands and He can do anything. Everything is up in the air and everything we know, you all know now. When we get any info, I'll put in on here so you all can be informed. We love you all and thank you again for you prayers and support.
Jaim, Ben, the wild woman, and the sweet little one.
