A Glimmer of Hope

Well today provided me with a glimmer of hope. Although small, it is still a glimmer, and when you travel this path, you will take whatever hope you can find.

I had a fetal echo cardiogram done on my babies today. This was something I had asked my maternal fetal medicine (MFM) team for and was denied. They explained that it wouldn't change the fact that Adrian would not live long so there was really no point in doing one. Nice huh? I went along with that decision for quite some time until I finally talked to my OB about possibly having one done. While she understood that decision that MFM made, she explained to me that I was Adrian's mother, and ultimately it was my decision on what tests I wanted to have done. She called that day and got me scheduled for one. Have I mentioned recently how awesome my OB is?

At my last ultrasound MFM thought they had seen not only a VSD (hole between the top and bottom left ventricle) but additional defects that meant Adrian would not get enough oxygen. It was a blow because we were really hoping that all we were looking at was the VSD. Additional heart defects would not do well for Adrian, and since he was going to be born small already, he really won't be able to endure much when it comes to surgeries. So I went into this echo hoping for good news but expecting the worse. It seems that when you are dealing with a child who's probable diagnosis is "fatal", you learn to expect the worse and hope for the best in most situations. Overall my experience was great. The tech and the doctor were so friendly and understanding, and never once made me feel like I was wasting their time. Audrina's heart looked great and when the doctor came in to take a look around, she forgot to change the label from baby A to baby B. Now you are probably wondering why that matters.. Well when the tech caught it, the doctor said, "well its good when you might get the hearts mixed up because there isn't much difference to tell them apart." I immediately got a smile on my face! I don't think I will ever forget her uttering those words! She also asked me if I was planning to deliver at the University Hospital or IHC, and I told her it really depended on the findings today. This is when she told me, "well I don't see any reason you would need to deliver here." Again, another smile. I don't get a lot of smiles at doctors appointments these days and here I am with 2 in less than 10 minutes!!!

After she finished looking around, we met in a small room to go over the diagnosis. She explained to me how a normal heart works. She went through the changes the heart goes through from when the baby is in utero and then when it is born.we had suspected. She explained that the ventricles on She then explained about the VSD that we had been previously aware of, or at least the left side of the heart help pump blood to the body. When there is a hole between the upper and lower chamber, some blood just cycles back into the ventricle instead of going out into the body. When this happens, it causes the heart to have to work harder to compensate for the missing blood and lower pressure. In Adrian's case, it appears there might be a small hole. She said it was really hard to determine size and in some pictures it looked small, in other pictures it appeared to not even be there, and in others it appeared that it may be a moderate size hole. In some cases, these holes will close all on their own. At 31 weeks, the chance of that is pretty slim but that isn't necessarily bad news. If the hole is surrounded by enough muscle, there is a chance that blood won't even be able to pass through the hole, thus never causing an issue. If the hole is big enough, most of the time surgery won't be required until the baby is several months old and starts showing symptoms of cardiac arrest. They usually just wait till the child starts showing symptoms before they worry about doing the surgery. Ultimately an ultrasound after birth will give us a more detailed look at the size of the hole and if it is passing blood or not. At this time it's not something to be overly concerned about.  Such great news.

Adrian's heart was one of my biggest concerns. Children with T18 experience a wide range of heart problems and a lot of times, these problems are what cause the child to pass. As we begin to make plans for the birth of these babies, it was really important to me to have as many facts as I could, to ensure I was making the best decision for my children and our family.  Now this does not mean that Adrian will be without problems, but what this means is that he may need very little intervention at birth to keep him living. This means we may have more time with him than we thought, and has pushed me to start making plans not only for his possible death, but for his possible life as well. And of course there are still no guarantees, but maybe this lil guy will surprise all of us yet.

A quick update on me.. I have dilated a little more since last week and I am now at 2+cm. The good news is that my cervix is still high, which is good and we hope that this slow dilation continues. I will take 1/2cm a week if I have to! I am 31 weeks today and we are hoping for at least 3 more weeks! I will get my booster steroid shots next week. They help the development of the baby's lungs and are good for about 2 -6 weeks depending on who you ask. I have a growth ultrasound on Monday and will probably be scheduling an amnio then. This will help drain off some of Adrian's fluid and possibly help slow down my preterm labor issues! It would be nice to slow down the contractions. Some days my stomach just aches from all the action. There is of course a chance that the amnio could cause me to go into labor, but my OB and I have decided the benefit outweighs the ris,k and honestly, I am looking forward to some possible relief! You try measuring almost 45 weeks when you are only 31 weeks and let me know how ya feel! Haha Ya that would be the equivalent of going 5 weeks over your due date and it's not fun!

So we are still at a "wait and see" standstill but I feel as though I am starting to get some more answers and more possible outcomes than I was  before. I will be meeting with a pediatric surgeon for a consult on Adrian's omphalocele to talk about what the surgery entail,s and if it's something Adrian may be able to endure after birth. This may also determine if I am going to have to have a csection. We are still trying to avoid it if possible since I will be caring for two newborns, but it may be necessary if the surgeon doesn't think Adrian will do well.
I will be sure to update on their growth after my ultrasound on Monday! I hope you all have a wonderful weekend!