After two long weeks of worrying over whether we’d get good news or bad news regarding Abbi’s growth, the day of our next growth scan had finally arrived. I was anxious for this ultrasound, maybe as much as I was for the first one. I had barely gotten any sleep the night before, despite having counted a bazillion sheep.
An OB I had seen briefly after receiving Abbi’s diagnosis of IUGR had mentioned that a higher protein diet may help to put weight on her. And after some intense research on the Almighty Internet, I realized that there may be some merit to this. I did not know (despite already having given birth to a full term healthy baby boy), that the “average” pregnant woman should be consuming 60-70 grams of protein every day.
That’s a LOT of protein! And given that I had never really paid much attention to the protein content of my food (I’ve always been more concerned with the fat and fiber content), I am convinced that I haven’t been getting enough protein! Looking deeper into the correspondence between a high protein diet and increased fetal growth in babies with IUGR, it seems that women in my position should be getting close to 100 grams of protein daily!! That’s nuts! Luckily, there’s protein in many different foods, some of which contain more than others.
Armed with the knowledge that increased protein may help Abbi pack on a few extra pounds, my loving husband has been cramming protein into me at every chance he gets; he’s even started having me drink at least one Muscle Milk® Protein Smoothie (I have to admit, they’re really good) every day. His thinking (and honestly I tend to agree with him, although you’d never get me to admit that to him), was that even if it didn’t help any at all, that it couldn’t hurt. So through the teeth, over the gums, lookout stomach, here it comes!
We FINALLY get back into the ultrasound room (after an hour and a half long wait), and the sonographer gets started measuring. Like usual, my daughter was asleep at the beginning of the scan and by about halfway through she was tossing a huge fit and squirming like a maggot in hot ashes. (I’m sure the sonographers at the MFMs office absolutely dread scanning me, due to Miss Thang’s attitude problem and the fact that we have to damn near chase her around to get correct measurements.)
The best part of the scan was when we were able to get a 3D glimpse of her sweet little face! She just melted my heart like butter, and I am now 100% convinced that neither of my children will ever look a thing like me – she looks JUST like her brother!
At the end of the scan, the sonographer gives her report to the doctor (this week we’re seeing Dr DeStefano’s partner, Dr McDonald), who then comes in to give us this week’s news, whether good or bad. So after watching my husband snooze in the chair for the 15 or so minutes we were waiting for the doctor, she comes in and he wakes up.
Dr McDonald tells us that little miss Abbi Mae has finally decided to play ball, and has put on 8 oz in the two week span between growth scans! She has gone from beneath the 5th percentile mark and is now at the ‘almost’ respectable 7th percentile! She was finally weighing in at a smidge above 2 pounds!
That’s definitely some GREAT news!! We left the office with more hope in our hearts than we’d had since we found out at 23 weeks that there was a problem. I can’t remember being as proud of anyone as I was of my little girl at that moment! Looks like all the extra protein I’d been dumping into my diet was paying off! I was a little concerned that the measurements could’ve been off by a little bit given that the sonographer was measuring so quickly (trying to get back on schedule since the office was so backed up), but even if that was the case, there’s no WAY it could’ve been off by enough to have made that much of a difference! So whether or not it was 100% accurate, there was no mistaking the fact that she had grown!!
The very next day Matthew and I traveled to Austin to see the pediatric cardiologist. While we had already been told by the MFM that we were most likely dealing with a diagnosis of Tetralogy of Fallot, she referred us to the pediatric cardiologist’s office to confirm that diagnosis and to make sure that was the only heart abnormality we were dealing with. So we dropped John off with my mother and headed south. The office was relatively easy to find (it’s actually located right across the street from the hospital where I’ll be delivering, so I was able to kill two birds with one stone), and although the office staff wasn’t supremely friendly, the doctor was and we didn’t have to wait long.
We followed the doctor out of one building and into the smaller building directly behind it where they kept the ultrasound machine. We were the only ones in there, so she told us to make ourselves comfortable while she got ready for our scan. She gave me the opportunity to go to the bathroom, which was amazing since the sonographers at the MFMs office usually want me to have a full bladder! Dr McCoy (that was her name) informed us that this would be likely be a relatively lengthy scan, so I hopped up on the table (as much as my big ass can hop these days) and away we went.
The first thing I noticed was that this woman gave the most GENTLE ultrasound scan I’d ever had in my life!! The second thing that struck me as odd (which I wouldn’t have even known had the doctor not told me) was that for the first time – in ALL the scans I’d ever had – Abbi wasn’t head down. She wasn’t exactly ‘breech’ considering that she wasn’t head up; she was more cockeyed than anything, with her head off to the side.
At 28 weeks gestation, the vast majority of babies have already assumed a ‘head down’ position, and will pretty much stay there for the duration of the pregnancy. They might twist and turn, rolling from once side to another, but for the most part they are pretty much where they’re gonna stay. That’s not necessarily true for all babies, and even those who are classically ‘breech’ still have plenty of time to flip before birth.
I tried desperately to make sense of what Dr McCoy was looking at/for as she scanned Abbi’s heart, but try as I might … it didn’t look any different to me than any other baby’s heart that I had ever seen via ultrasound. I am so glad there are specialists in this world who can make heads or tails of this type of thing, because I sure as hell can’t!
So after about an hour of scanning (she had me roll onto my side a couple times to allow her to see the heart clearly since Miss Squirmy Pants woke up halfway through the scan and decided that she was gonna play hardball), Dr McCoy states that she believes she has enough pictures and while I clean the gel off my belly, pee, and recompose myself, she would do some measuring and be right with us.
About 15 minutes (and a much happier bladder) later, the doctor comes back in. She begins by telling us that she does not believe that Abbi has a Tetralogy of Fallot; she believes that she has what is called a Double Outlet Right Ventricle (DORV) instead. She tells us that both ToF and DORV have almost identical clinical presentations, in that the result from both conditions is that non-oxygenated blood mixes with oxygenated blood inside the heart, and can make it difficult for the baby to stay oxygenated well enough.
The main difference between a ToF and a DORV is the positioning of the aorta. In normal (and ToF) hearts, the outlet for the aorta is located in the left ventricle, whereas the outlet for the pulmonary artery is located in the right ventricle. This isn’t the case in DORV. As the name might suggest, with a Double Outlet Right Ventricle heart, both the outlet for the aorta and the pulmonary artery are located in the right ventricle.
Now you might notice that the above image features a label called a Ventricular Septal Defect (VSD). The VSD is essentially a hole between the two ventricles of the heart (which is where the mixing of the oxygenated and non-oxygenated blood happens), which isn’t supposed to be there. All DORV hearts have them. And yes, Abbi Mae has one too. We’ve known about it since the original ToF diagnosis. It’s actually the only way life can be supported before the DORV heart is repaired, since if it wasn’t for this hole, blood wouldn’t be able to reach the aorta at all. So this part is technically old news.
The other new news, is that in addition to this new DORV with a VSD diagnosis, Little Miss also has what’s called Pulmonary Stenosis (PS). Essentially it’s where the pulmonary artery and it’s opening is considerably too small. This makes it even harder for oxygenated blood to make it to the rest of the body.
While these pictures are colored in all purdy like, what the hell does this mean for my baby? Well, buckle up because there’s more info to take in.
Up to this point, we had been clinging to the hope that our little girl would need only one major surgery, and that the repair would last her a lifetime. As we talked to Dr McCoy, we were informed that this would no longer be a possibility. Our sweet Abbi would now be looking at a minimum of 3 surgeries, with two of them being major open heart ordeals.
Oh my gosh.
The first of her procedures will need to be done within the first week or two after delivery. It will be a minor procedure (although to a Mommy and Daddy listening to this before their baby isn’t even here yet, it doesn’t FEEL very minor) that can be done in the Cath Lab. What they will do is go in through the arteries in her thighs and run a stent up through them into her heart. Once there, they will place the stent into her pulmonary artery, which will allow for more oxygenated blood to reach the rest of the body. While it’s not actually repairing anything, it is providing a band-aid to allow her to grow some before her first major open heart surgery.
So when will that take place?
Once Abbi has reached 3-6 months old, she’ll be big enough (and strong enough) to have her first surgery. At that time, the surgeons at Dell Children’s Hospital in Austin will crack open her chest, go into her heart, and repair the defects. They will move the aorta over to the left ventricle where it should be, close the VSD, and place a more permanent stent into the pulmonary artery. Once that is done (assuming that there’s no residual defects that couldn’t be repaired at that time), Abbi should be right as rain after she has fully healed and recovered. She should be able to do everything that any other 3-6 month old baby can, developing normally from there on out.
Then why should she even need another surgery?!
Simple. Because she’ll outgrow the repairs done during infancy. While Abbi will continue to grow, the repairs to her heart will not. When will she need them replaced? It’s hard to say. Maybe not until early middle school; maybe later on in grade school. It will all depend on how quickly she grows.
What we do know however, is that the first year of our daughter’s life will not be an easy one for any of us. At this stage, Mommy and Daddy are fighting simply to get her here safely. But once she has joined the ranks of this world, there’s only so much we can do to fight the battle for her to stay here.
The rest will be up to her.