Here is the latest update on our little man. I know I just posted on Wednesday with what was going on and said it would be 3 weeks before we got further information, but we were blessed to get an appointment with the top Pediatric Cardiologist at Seattle Childrens TODAY! That’s right, they got us in 3 weeks early and we had our exam today. We don’t know a lot yet, but here is what we do know.
Baby boy has 3 different cardiac defects that all fall under the umbrella of CAVC – explained below. For those of you who like to Google and know more, here you go: The 1st specialist we saw was right with his suspicion of a VSD – a ventricular septal defect. Basically, that means he has a hole in the septum inside of his heart that separates his right and left ventricles. The second specialist we saw was sadly, also correct that he has CAVC – Complete Atrioventricular Canal Defect meaning that he has a large hole in the middle of his heart so the chambers of his heart are not properly divided and oxygen rich blood pools with oxygen-poor blood from the body and neither are pumped out exactly as they should to the heart and lungs. His valves aren’t connected as they should be because of the missing walls in his heart so they don’t work properly either to keep the right blood going in the right direction. In addition to both of those, the cardiologist today saw an ASD as well, that’s an atrial septal defect meaning that his septum in the top portion of his heart has a hole in it as well. The VSD and ASD are both so large, they pretty much connect and there is an entire wall in his heart that is missing plus a big hole in the center of his heart as well. The biggest concern with all of this is the risk of Downs Syndrome. 1 in 2 babies with this cardiac condition have Downs Syndrome. In addition to that risk, my age greatly increases his risk and his measurements on his last ultra sound from Wednesday also show increased risk of it. That could make him more suseptible to other difficulties and we are hoping he won’t have to deal with that. The major cardiac defect seems like a big enough mountain for him and us to make it over without adding additional challenges for him. Of course, we do believe that God can just move that mountain and heal him completely on His own, but we informed ourselves of what would happen if that doesn’t occur so the doctors can have a plan for us.
So, we are having to transfer care yet again, for the remainder of my pregnancy and his birth. We will switch to either St Joes in Tacoma or Tacoma General because they both have Seattle Childrens Cardiologist teams either on location or on call for the birth of our boy to be standing by in case of emergency. The cardiologist said my pregnancy is fine, we will follow up to have another echocardiogram for baby to make sure there are no other changes (or complete healing!) and another ultra sound with a specialist to monitor his growth but the rest of my pregnancy and our birth should be normal. There is no need for a C-section, unless he doesn’t flip over as he is still breech. We should probably be at a location that has a pediatric cardiac team on location in case something goes sideways. This defect really has no effect on baby in the womb since I’m providing all of his oxygen and he isn’t using his lungs yet. He will be born hopefully naturally as we have done all the rest and should come out pink and screaming like most babies do. The doctor said his o2 sat will likely be in the low 80’s but for babies with these defects, that is normal and it’s ok, nothing to be concerned about. The EMT in me puckered a little bit hearing that. He should be a normal, healthy(ish), regular boy when he is born for at least the first week because the lungs of a newborn are under such pressure, it will force his heart to pump blood adequately. He will have an echo and EKG in the hospital when he is born and likely be released to come home the next day to be a normal newborn with us at home. Between weeks 1-3 after he is born. his lungs will relax lowering his thoracic/cardiac pressure causing blood to back up into his lungs and respiratory difficulty. At that point, they will put him on Lasix (diuretic medication) to help eliminate all the extra fluid from building up and prevent heart failure. He will remain on Lasix for 4-5 months until he is big and strong enough to have open heart surgery.
At 4-5 months, he will have his surgery at Seattle Childrens. They will open him up, put him on heart/lung bypass, open his heart and build a new wall in his heart made out of goretex. That will repair the holes and the missing wall and then they will also repair the valves and connect them to the new heart wall that they put in so they can start functioning properly. He will be in the ICU for 1-2 days where we are welcome to stay with him 24/7 in the same room but we can’t hold him or anything because his chest will be too fragile and he’ll be in an incubator, then be moved for the cardiac floor for the next 7-10 days. He should be able to come home in less than 2 weeks to recover.
The national average for survivability of this surgery is 95%. With the cardiac team at Seattle Childrens, it’s 99%+ . We of course, pray for healing on his own from these defects but we also have peace with the treatment plan if this doesn’t heal on it’s own. We will have a challenging couple of weeks dealing with him in the hospital and the massive surgery he faces all while dealing with our 3 littles at home and trying to minimize the impact on them while we are trying to divide time between living with baby at the hospital and 3 babies at home. I’m so thankful we have about 7 months to prepare for that time so I should have plenty of time to get some meals in the freezer, get some childcare help worked out, maybe some house work help worked out and figure out what else we will need during that time.
Right now, we are ok. We need prayer. Prayer that the heart will heal itself and prayer that there are no other challenges or abnormalities for this little guy to face.
So many of you have offered to help. I’m SO thankful for you all, I can’t even explain how much the support, prayers, encouragement & offers to help mean to us. I even feel bad writing this in a blog to share with you all becuase I would rather call everyone 1 on 1 on the phone and talk to each person voice to voice and heart to heart but I haven’t even regained my composure yet to make those phone calls. I made 1 phone call and cried on the phone and had a hard time explaining it. So please, I hope you understand how much we appreciate you all, our amazing support system and community, prayer partners and helpers, but this seems to be the easiest way to share updates. I am going to find out if there is a way that you can ‘subscribe’ to our blog so you are emailed with updates anytime that I post, I’ll have to ask Bo to help me with that one but I’ll try to keep all baby updates on here so there is only 1 place to look and share it on our FB pages as well. We are a little overwhelmed processing the news ourselves and spending family time together today so we’re turning our phones off to just focus on our family. I look forward to scrolling through the comments on FB and the blog post and messages and texts when I can’t sleep or have more time, but for right now, I wanted to get this update out to you all who are praying and thinking of us so you know what’s going on and we are focusing on the 6 of us right now as we let the news settle.
There likely will be a time when we need more help and I won’t be too stubborn to ask for it. If there is a need, we will make it known, ask for help and take you all up on your offers for various things. We aren’t there right yet though. Our only need at this time is prayer. Prayer for healing and no other complications at all. We will likely need help with childcare after he is born since he will be spending a lot of time at the cardiologist office leading up to and after his surgery if that happens. But for now, please, just pray for us. Pray for COMPLETE healing for this little guy and also for Bo and I. We process very differently and both desire to be there for one another but have such different needs, we are learning how we can help one another in the ways we each need. Our hearts are a little raw and we want to do the best we can for each other, for the 3 big boys and for this little guy inside.
For my sweet friend that showed up on my doorstep today with this beautiful, sweet smelling, bright arrangement of pure cheer and prayer for me, thank you! I so love bright flowers and I never buy them for myself but they are just so pretty! It amazes me that I’ve been thinking of doing this exact thing for you and the words you prayed over us are the exact words that I’ve been praying for you straight to God that just came right back to my heart from you as if God spoke them to you from my heart word for word. I love how He works like that. Thank you for this sweet gesture.
Thank you to everyone for the prayers, encouragement, offers, support and help. We WILL reach out when there is a need even if it’s just for emotional support because we need to talk or something. I will keep updates on this blog and find out about an option to subscribe to it as well and share on FB also.