Well, we have had a productive week of doctors appointments to update on!
On Tuesday, we had another ultra sound with Maternal Fetal Medicine. The ultra sound showed good growth. Baby is in the 41% on the growth scale which is a good thing. At 32 weeks, his head and abdomen were measuring 33 weeks but his humerous and femur were measuring at 29 weeks. That’s not so great news but doesn’t say anything definitive at all. (Short long bones are a soft marker for Down Syndrome). He is measuring at about 4 1/2 lbs which is pretty much on target for this time in pregnancy. The placenta looks like it’s as big as he is in the ultra sound pictures. We tried to get a cute pic of his face but due to his position, were unable to. The big praise is that he is head down now so he is no longer breech and will hopefully remain that way!
At Cardiology at the Federal Way Seattle Childrens Clinic where we hope to have most of our visits with the cardiologist.
The echocardiogram we had today with the new cardiologist, who will be his cardiac care provider long term, showed no change with his heart. We did learn a little bit more about his actual defect and the physical construction of his heart which was interesting to learn. Attempting to put it in Kindergarten terms, there is a cross inside of his heart like a + sign that divides the atrium (top chambers) and the ventricles (bottom chambers) as well as the left and right sides. On the vertical wall, he has a hole on the bottom and a hole on the top, they are large holes and may potentially be 1 large hole that spans the whole center of his heart, they can’t tell until they open him up. On the horizontal wall, there should be 1 valve on the left and 1 valve on the right that direct the blood flow from the body into the heart and from the heart back into the lungs. Instead of 1 valve on either side (left and right) of his heart, he has 1 very large valve that spans equally across both the left and right side so his blood is not being directed or pumped in and out of the heart properly. This doesn’t matter at all while he‘s in the womb so the rest of pregnancy, labor & delivery shouldn’t be affected.
Waiting at the doctors office playing our travel backgammon which we are totally addicted to.
The follow up with our doctor went great. We decided to deliver at St Joes for a variety of reasons and are very happy with our decision. We hope to take a birth center tour this weekend so we can go check it out and see where we will be. We modified our birth plan to benefit both baby boy and I to include things like immediate cord clamping and cutting which normally we wouldn’t do, but with his heart defect, we don’t want that extra blood flowing back into his body when he will have a hard time pumping it out already. We also plan to take steps to try to avoid the blood loss that I’ve experienced in the past to make it safer for me as well. The last 8 weeks of pregnancy should go as normal, I’ll keep managing my blood sugar during the day with diet and exercise and take medication at night to help while I sleep. We will deliver at St Joes sometime around the end of January if that’s what baby decides and plan to be in the hospital for around 3 days. They want to monitor his heart and respiratory status for a couple of days and make sure my bleeding isn’t out of control again as well.
After birth, we will have our couple of days in the hospital and expect to go home with a pretty normal baby. He won’t be any more fragile than a normal kid or any more at risk to die of respiratory failure during the night than any normal baby. When I asked the cardiologist about getting an angel care or owlet monitor for him, she asked if I ever wanted to sleep again. I said “YES!” She told me not to get a monitor then. He isn’t at any more risk than any other baby of going into respiratory faiure and dying in his sleep so if I want to sleep, don’t get a monitor and freak myself out. His respiratory rate will normally be higher than a normal kid and his o2 saturation will be much lower than a normal kid but that will be his normal and “healthy” for him. Physically he won’t be any more fragile than most healthy babies, he can scream and cry and it won’t kill him. We talked to her about the sleep training we do with our kids and she fully supports it, getting him on a feeding and sleeping schedule so we can all have some normal sleep and try to live a normal life. As long as he tolerates it, is breathing well and nursing well. All of that of course will change if he isn’t growing well or nursing well, we will adjust if need be.
After we go home, we will see the Ob/Gyn as his pediatrician while he’s a newborn as well as seeing the cardiologist but the cardiologist only wants to see him at birth, 2 weeks, 4-6 weeks and every month up until surgery. We had been planning for the worst case scenario of having to be at the cardiologist office every 3-5 days or at least every week so this was a huge relief to hear. He should be stable enough to not have to be seen constantly if all goes to plan. Surgery will be 4-6 months after he’s born so we’re ballpark guessing it will be June/July’ish but it all depends on how well he is growing and how his respiratory status is while he’s technically in heart failure from having blood back up into his lungs. He may or may not need lasix to help with that until surgery, we won’t know until after he’s here.
We didn’t really get any new news but there were a few blessings, he is head down which is great, his cardiac defect is a balanced defect rather than an unbalanced one which would be worse and we didn’t even know was a thing until today, we know where we will deliver. We hope our current doctor won’t be delivering at that time in Enumclaw so he can come deliver our boy at St Joes so we can still work with him because we are very comfortable with him. If all goes according to best case scenario, labor & birth should be normal and he will be doing fine after delivery, be able to stay in my room with me and have his echocardiogram done in there as well as all other newborn procedures. The NICU team will be there standing by just in case but aren’t expected to be needed and will hopefully be able to just leave without having to do any work.
I’m sure I’ve forgotten a few things but I’ve got 3 kiddos at my feet at after 5pm with no idea what’s for dinner tonight and need to go to the fire station for drill tonight so I need to wrap this up. :)
There is nothing we need right now, we are doing well, we feel very optomistic after all of our appointments and meeting with all of the doctors. We are of course praying for complete healing, no Down Syndrome and a healthy heart when he comes out but will prepare for what may be as well just in case. Please continue to pray for him and we will keep you updated as best we can on the blog here! We may have 1 more echo before birth, that’s not confirmed yet so it may just be routine prenatal care from here on out until he arrives. The doctors and us all agree on our plan and look forward to a healthy next 2 months until he arrives and thereafter!
Thank you so much for the continued prayers!