Please help by donating towards Baby E's medical funds. With all the traveling expenses, medical expenses that are already coming in from tests, ultrasounds, mri's & dr visits, and Baby E's mom needing to move closer to the hospital & not being able to work, any donation to help this family is greatly appreciated!! Lets help take some weight off Baby E's parents & let them enjoy this time as they are preparing for the surgery & long road ahead of their precious little bundle!
Our story started December 15th 2014. The day we found out we were going to be parents!! This is something we have been waiting for since our wedding day. A little over a year later we finally got our wish, we were going to have our first baby. On January 18th we got to see our little miracle on the ultrasound screen! What an amazing thing to see! The months seemed to drag on and on as we patiently waited to meet our own little bundle of joy, and then on April 15th (yes, Tax day) we finally got to find out what our little miracle was!
We sat in the waiting room, impatiently waiting to lay eyes on our baby, finally 1:00 came and my name was called to go back for my first ultrasound! It seemed like it was taking forever for the technician to tell us, is it a Boy or Girl…. I knew in my head and heart it was a boy, but the whole time I said it was a girl, had to keep Daddy on edge! As the technician was finishing up she informed us that she was going to make sure she had all of the pictures she needed, and left the room. We waited as another tech came into the room and repeated what seemed like the entire process over again. Finally, at 2:00 PM on April 15th we found out we were going to be the proud parents of a baby BOY!! We both cried HAPPY tears! We were on cloud 9. Happy as can be! We were getting our little guy and couldn’t be more excited!
We left the ultrasound and went to our Dr. appointment. We were all smiles and happy thoughts until our Dr. came in, the words no one ever wants to hear, “We need to talk”. I instantly knew something was wrong, I was terrified. He then told us our precious little guy has Spina Bifida, hydrocephalus and club foot. Our happiness changed to fear, our smiles to tears, devastating set in. Without really knowing what any of this meant, only that something was wrong and we had a lot of questions.
Our doctor informed us we would need to continue doctoring at Abbott Northwestern Children’s Hospital. Our questions couldn’t be answered from our Doctor in Fergus, we left that day with no answers, feeling very alone and not knowing where to turn to next. We spent the next 6 days waiting for our appointment with our new doctor, six days not knowing what was happening, or what to expect, questions going through my head that I didn’t have answers to.
What is Spina Bifida? I DON’T KNOW
What is Hydrocephalus? I DON’T KNOW.. I didn’t even know how to pronounce it.
What is club foot? I DON’T KNOW
What I do know is that you should never Google anything, you should wait and talk to your doctor to get the answers you need.
Abbott Northwestern Children’s Hospital called us on Friday of that week, shortening the six day long wait to two days and an appointment was set for the following Monday. We drove down to the cities Monday Morning (April 20th) along with my parents. When we arrived at our appointment we had a level 2 ultrasound, met with the Doctor, met with the head of nurses and as well as the genetics counselor. We were given a few options: (1) go to California to have surgery in-utero, which came with many risks, risks which out weighed the pros, we decided against this option. (2) we were given the option to terminate the pregnancy… ABSOLUTLY NOT!!!! This is our child… I can feel him move and kick and he looks so cute on the ultrasound screen, we decided against this option, (3) we can wait and have surgery after he is born. We decided this was the best option of all. We want to let him be where he is for now, where is can stay cozy and warm, he will continue to grow and be content just how he is. Where he should be. Yes, there will still be risks, we know that, but the risks are less and the chances are greater.
I will need to move closer to the hospital in Minneapolis be 36 weeks, this scares me. I will be there without my husband, my mom, my family. And what about my daycare and working, how will we pay the bills. I want to believe it will be fine as everyone has told me, but how? Who is going to make sure it is fine, who is going to make sure we are fine, I am fine, our baby is fine? How can being more than three hours away from my home be fine? These are the things that cross my mind, these are the things I think about.
We are now getting closer, May 14th we made another trip to Abbott for our appointment. We had an MRI, which didn’t show anything new. We now have a name for our son, Austin. We also had an ultrasound and more concerns are raised, baby Austin is not growing as he should be, and there is a good chance he will have scoliosis. On the positive side he has a very healthy heart and we now have a better idea of what to expect when the day arrives. Baby Austin will be delivered by Caesarean, a choice Jake and I made to make sure more damage was not caused by the delivery.
We got to tour the NICU where Austin will be after he is born and where he will stay until he is ready to go home. Meeting the doctors, nurses and other staff who will be there with us every step of the has eased our minds a little, and being able to get the questions we had answered and have a plan in place helps. We left there feeling 100% more comfortable with this whole process. We were also able to see the Ronald McDonald house down the hall where I will be able to stay after discharge, what a nice option for us. I will be close enough to go visit my baby boy whenever I would like while I am there. I can also sleep in his room with him his whole stay!
More recently we were able to meet with the surgeon who will be doing Austin’s surgery and we found out some great news, as long as there isn’t a change in the fluid in his brain doesn’t change, he will not need to put a shunt in! That is the best news we have gotten in 25 weeks, besides finding out we were going to be having a boy.
Our story will continue to change, appointment, by appointment as the delivery date gets closer.