Welcome to our CaringBridge website. We are using it to keep family and friends updated in one place. We are also using it to get our story out there in order to spread awareness to conditions similar to our baby’s and more specifically to the interventions that are available. We appreciate your support and words of hope and encouragement.
(Part 1) Let me start from the beginning. Long post beginning here so bare with me if you have the time.
At 16 weeks gestation, Brian and I went to maternal fetal in Peoria for an ultrasound (US) that had been scheduled because I delivered early with Declan from pre-eclampsia. Not thinking there could be anything wrong with our baby, we were excited to be doing this US because we were hoping to find out the gender of our baby early than expected. Instead, we were told that our baby seemed to have a bladder outlet obstruction as the bladder was very enlarged and looked to not be excreting the urine. At this point, I still had amniotic fluid; however, I was in the low-normal levels. Peoria sent us to Lurie’s children’s in Chicago (associated with Northwestern). Here we had a level 2 ultrasound, a fetal MRI, and a Fetal Echo. I was at 19 weeks gestation at this point. When we met with the doctors after all the tests were performed we found out that I no longer had amniotic fluid. This is when we found out about the kidneys. Without going into too much detail about how the meeting went, we were basically informed that the bladder may or may not be blocked (too small to tell) but it did still have fluid sitting in it. The kidneys were both enlarged to the size of a newborn’s with multiple large cysts and little to no blood flow to the kidneys being seen which meant they were not functioning. Now let me explain a few things about how babies develops and how some of the organs of the body work (Incase you don’t know already). Early on in pregnancy, the mom’s body will produce amniotic fluid; however, the baby takes this over by urinating. The baby will practice breathing and develop the lungs by drinking the amniotic fluid. The kidneys then filter this fluid and make urine. The urine is then sent to the bladder which then excretes this urine back out of the body creating more amniotic fluid (a little gross, I know but also fascinating). Since our baby’s kidneys were no longer functioning, amniotic fluid was being drank but not reproduced which is how I lost the fluid. While in Chicago, we learned of what was to be expected after the baby was born. The biggest fear was lung development since it was so early in the pregnancy and the fluid was already gone. These doctors did give us hope that the baby could make it to birth but of course a lot of factors would go into how the baby would survive after birth. The biggest thing was pulmonary function. If the baby was not considered a pulmonary survivor then no other interventions could be done. (I will talk of these interventions later.) We left Chicago full of sadness and fear. We were determined to get all the information we could and fight to give our baby the best chances of survival. Neither Brian not myself was ready or willing to give up on our precious baby. At this point we began googling (which is very dangerous by the way.) Somehow we came across a procedure called amnioinfusions. I could only find one story about this procedure but it was a happy ending so I was determined to learn more. I phoned our main doctor from Chicago and continued my hunt for more information. While waiting on a call back from the doctor, I came across a support group on Facebook for mom’s in similar situations who have had amnioinfusions. This group has been a life saver! The mom’s on this page helped guide me to Cincinnati Children’s. Our doctor in Chicago finally got back to us and agreed that this was a good route to go for he use to work there and trusted them (I was going to go no matter what—but it was nice to have him reassure me I was making the right choice). So at 24 weeks, my mom and I headed to Cincinnati for more answers. They performed all the same tests that Chicago had performed to see how/if anything progressed or changed. We found out the same information. They gave the diagnosis of Bladder Outlet Obstruction with Bilateral Multicystic Dysplastic Kidneys. After a lot of discussion again about what this means and what can be done after birth, we got into the real reason we came—amnioinfusions. WE WERE CANDIDATES!! I suppose I should explain what this is—a procedure where they take a needle and inject fluid into the sac for the baby. This procedure is strictly for pulmonary function and to give the baby room inside the uterus. There are of course risks associated with this procedure but to us, the benefits outweighed the risks and we decided to start them. The baby is then able to practice breathing and develop the lungs all while having room to wiggle around (and trust me, this baby wiggles!) We had our first amnioinfusion the day after our meetings with the doctors. I received 510cc of fluid which then they drew out 30-40cc for an amniocentesis to perform genetic testing. It was AMAZING how clear the ultrasound pictures had suddenly become when fluid was inside the sac. They were able to get a better look at everything at this point. The heart looked great which was a relief with everything else going on. The kidneys still did not look good. After the infusion, I felt large and in charge. The infusion itself was not a pleasant experience (however if you ask my mom, it went great for her ;) her words!) I was too nervous and didn’t like the pain to open my eyes and watch it all on the US screen but my mom watched the whole thing and was fascinated. You can actually see the needle and the fluid going in and of course the baby reacting to it. This first one took the longest as I had no fluid to begin which makes it harder. The doctor went in by the baby’s foot stating that most babies will retract their foot away from the needle. Of course, my baby was stubborn and just kicked it back. He did have to take the needle out and stick a second time to get a better angle which also took more time. Our first two infusions lasted us 2 weeks. They didn’t expect this to happen so of course we drove back a week after our first one only to be told our levels still looked good and they didn’t want to poke my uterus if they didn’t need to. The doctor felt terrible that we drove all that way for nothing but Brian and I were both ecstatic to hear this news (esp me—no needles that day! Yey!) After the first two infusions, they began to only last one week at a time so we have been going back weekly for them now. They get easier for me each time. I’ve actually been able to open my eyes for parts of it and watch. The first time I opened my eyes was the best! The baby was facing the needle and kept blocking the fluid with his (?) hands and also trying to grab the needle. It was so amazing to see. The next two times, the fluid was going in at the feet and the baby kept trying to kick the needle. This last time I wanted to ground the baby as he(?) kicked the needle THE ENTIRE TIME. By the way, it’s not super pleasant when the needle is kicked. Of course, the doctor was very happy to see all the strong movements from the baby. I received 800cc this last time. Talk about feeling bloated!! I’m a little nervous to see how much I will need tomorrow!...
I am so happy to report that the seizure monster has not returned and he has been seizure free for over 24 hours now! He was a very sleepy boy yesterday while his brain and body recovered. The doctors said that since it was a fox’s seizure, there is less likely damage to the brain. He is up and awake right now after a good nights sleep. So far I haven’t noticed any changes. He’s still our happy active little guy, thank the Lord!
Everett has been on seizure medications for years. His EEGs have always been abnormal putting at risk for seizures. In the past, there have two events related to dialysis and we knew what caused them. Even though we knew he was high risk, we always just sort of thought that it was something he was going to catch a break on. Our previous neurologist had ordered an emergency med incase he ever needed it. We thought we would ever need it. We sort of took pleasure is being able to say “nope” when asked if we had to use it. At least now we can say, “yes and…”. Yes and I panicked a little but yes and I learned from it. Yes and I feel more prepared for next time. Yes and I feel more prepared for being around the children I work with. Yes and Everett is still our happy boy. Yes and we survived.
New plan going forward—know our seizure plan like the back of our hand (yes we did every thing right, we saw what it was, we moved him to the floor, we got him to his side, we called 911 when it wasn’t stopping but it doesn’t hurt to be even more prepared for next time). We will have an increased dose for his emergency medicine. We will probably not only continue to see our neurologist with the CP clinic but add on an epileptologist to our wonderful group of providers. We also pray that whatever caused this particular seizure never comes back again and we can return to saying “no” when asked if we have needed our emergency meds.
Thank you to everyone for all the prayers and support given. Sometimes I second guess putting our experiences on here. I originally started this page to spread awareness for amnioinfusions and to help other families going through similar experiences as it was a caring bridge journal that helped us. This page became so much more than that. Not only is it a place for me to gather thoughts and journal our experiences but it brought us a community that has held us up over these last five years. We are so incredibly thankful for the support you all have shown to our little warrior and to our family.
Now we return to our everyday life with a new experience under our belt. We move forward and learn from this and put a few more tools in our belt. I’m the words of big brother Declan “Everett you’re not sick anymore, get out of the hospital and come on home!
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