Today I had what will probably be my final visit with the pediatric cardiologist until after the baby is born. He reiterated today what he told us before: he is not overly concerned about the baby’s heart condition. In fact, the baby won’t even necessarily need the surgery right away because there isn’t too much leakage going on from the holes. So there will be time for the baby to grow outside the womb until the surgery can be done. If the holes were in other places besides the AV Canal, it would be more serious, but thankfully, the heart condition is very fixable.
He saw a tiny amount of fluid outside the heart, but he said he was not concerned about it, and it is something he sees a lot. He said he hesitated to even tell me because he didn’t want me to worry about it. He did confirm what the ultrasound tech said on Wed. – the heart is taking up most of the chest cavity because there isn’t as much lung tissue as there normally would be. Unfortunately, there really is no way of being able to tell whether a baby will be able to breathe by looking at how much lung tissue there is – each baby is different.
Finally, he told me the heart condition should not cause me to need a c-section. It sounds like as long as things continue to look good (meaning no signs of fetal distress) they will let me deliver through labor instead of having to do a c-section. The baby is in the right position for it, and as long as the baby doesn’t start showing any distress, they said there is no real reason to do a c-section. I think the baby has surprised them – most of the time babies with so little fluid do have distress, which is why a c-section is usually needed.
Next week I’ll have a fluid check and the 26th will be my next growth scan. If the baby grows, I will stay pregnant, if not, they will probably go ahead and plan to deliver. As long as the baby doesn’t go into distress until then, we will have made it to 34 weeks, which was our original goal, and one they told me not to get to hopeful about. So I feel like our baby has already beat the odds. If we make it past 34 weeks, that will be an added bonus, but even getting to 34 weeks is huge. In fact, getting as far as I am now (32 weeks) without any problems is quite the accomplishment. God has looked after our baby this long, and I know He will continue to do so.
For those who are praying for our baby, I would ask that you pray for the lungs, as the baby’s ability to breathe is crucial to survival. Regardless of what else could be wrong, if the baby can’t breathe, nothing else matters. Of course, if the baby is able to manage on the small amount of lung tissue he/she has, other things will definitely matter, and we are praying about those things too. But the first hurdle once the baby comes into the world is being able to breathe.
It’s Amanda (ManderMommy – from BabyCenter) and I was just curious, my docs in NY wouldn’t even dream of letting me go through labor because they said that with low fluid levels the chances of the umbilical cord becoming compressed and cutting off oxygen to the baby was too great. They also said that with premature and preterm deliveries, the babies tended to be smaller and that anything under five pounds the cord could prolapse and come out before the baby (which is super bad) because the baby doesn’t take up the entire birth canal. Have any of your docs mentioned this? …My newest docs here in PA are all about natural childbirth, but my docs in NY spent MONTHS terrifying me into understanding a C-section is the baby’s best shot at surviving delivery unscathed. I’m wondering if it’s a matter of different doctors having different birth philosophies or if it’s something really serious to consider…
Hm – it must vary according to each doctor’s labor philosophy. In looking at some of your other posts, it does seem your NY doctors were very cautious. I actually haven’t had many discussions with my doctors yet on the subject – I’m sure before we set a date we’ll have the opportunity to sit down with them and they will, I’m sure, let us know every risk involved, etc. both to help us and protect themselves in the event something were to go wrong. Thanks for sharing the information from your doctors with me. I am curious about one thing though – if a mom’s water breaks, then her baby has pretty much no fluid either, right? It’s something I plan to ask my doctor.
Lets not scare her she is already worried about enough already! Columbia is a great hospital full of many doctors that are not going to leave things unnoticed. Heather what you are going through sounds like deja vu to me totally. My name is Brette Orr (ask the nurses if they remember me!) and I was living what you are going through 3 years ago. I was on bed rest for almost 3 months in Columbia before I gave birth to my premature baby Kegan at 30 weeks. Throughout my pregnancy I had extremely low fluid- 4cm at the most and at times it even got down to 1cm. They had labled me Oligohydrominosis or something like that. Due to the lack of fluid my placenta kept tearing away causing me to bleed and almost go into early labor about 6 or 7 times while I was in the hospital. They kept telling me that Kegan had heart problems and was experiencing an enlarged heart that could lead to congestive heart faliure and she had fluid surrounding her heart as well. Her biggest concern (as well as yours) was her lungs though because they cant grow well without fluid. Well after all of my heartache and constant prayers during my pregnancy kegan was born at 30 weeks because we just couldn’t stop the labor that time. We were aiming for 32-34 weeks as well! I was sooo scared because of all the things that we expected to be wrong with her. Well let me tell you that with enough prayer and focus God creates miracles in those little babies!! When Kegan was born the NICU doctors found nothing wrong with her heart-no fluid, or congestive heart failure- like they had warned me about. She did have a valve that wouldn’t shut but they fixed it with Neoprofin and she did not require surgery cause the medicine did the trick. And although she had a tough time with her lungs- she was intebated (sp?) twice, had c-pap and si-pap machines, and at the end just nasal canula- she really did much better than some of the other babies in the NICU that I saw that were born between 24-27 weeks. So keep in mind that the doctors have to tell you the worst case scenario to cover their own behinds, and looking through that ultrasound has a fishbowl effect that can cause things to look like they are there when they are not. Things could appear to look the same every time because she’s not moving very much due to the lack of fluid. Someone told me a story when I was on bedrest of a mother who was expecting her baby to be missing part of his brain, and when he was born, he had the whole thing and was fine. Try not to worry to much grl- puts stress on your baby- and pray for your baby to be given a chance at life so he/she can maby one day change the world! You are in good hands- your gonna love the NICU doctors and the social worker and your already in the safe zone week wise! They say that 30 weeks + do the best in the NICU. I have been praying alot for you and so you know- I’m heather fuqua’s cousin by marriage she told me about your situation and I felt the need to tell you my story. We are a definite success story. Kegan is almost 3 now and has required hardly any therapy to catch her up to date developmentally. She has breathing treatments but she hardley needs them at all now and its hard to imagine that we were where you are now 3 years ago. There is a bright light at the end of your road, I just know it! Keep praying, God really does listen. I hope that my story gives you hope and strength to face your road ahead. Sounds like you got a fighter like I did, Kegan’s strength continues to blow me away still to this day. I truely belive that we had so much prayer for her strength that it is still working and she is where she is today because of all the people that prayed for her. God bless you, your husband and especially your baby. You guys are going through alot.
Brette, thanks for your comment and for sharing your story. I love hearing about others’ success stories, which remind me that miracles DO happen. We have been so blessed to have made it THIS far. One of the perinatologists did mention that he wished my water had broken, because that would reassure them there was nothing wrong with the baby’s kidneys/bladder. I really hope this is all some fluke and all of the organs will be ok. We, as you were, are most concerned about the lungs, since our baby had zero fluid for so long, and the most we’ve ever measured was 1.8 cm at this past appointment. The fluid levels have generally been less than 1 cm though, so it really is scary! But all we can do is leave it in the hands of God and hope and pray for the best. I am sure it is all the prayers that have kept our baby going strong this long. I’ve been amazed at the number of people – even people we don’t even know – who have been willing to mention our baby in prayer. By the way, I’m actually at St. John’s Mercy in St. Louis and not Columbia. Heather told me she thought I might’ve been at Columbia at first. Anyway, they also seem to have good doctors here that know what they are doing, and I know the NICU is supposed to be really good. So I do feel like we are at least in good hands. Thanks again for your comment!
You’re little one is a great fighter! I think that s/he will do good which ever way s/he is delivered. You know we will be praying for the lungs. Only three more days until 33 weeks! Way to go Baby Mohr and thank you GOD!