The Fighters Chronicles - A Story of Two
My name is Kate Murray and on new years of 2016, I remember posting a picture of my significant other, Roger, and I and the caption being "I can't wait to see what 2016 brings us" well 6 days later I find out we are going to have another baby!
Our first ultra sound came about and I will never forget googling what a 9 week ultrasound looked like while Google suggested I looked at twin ultrasounds and of course I did. Then when it came time for this first appointment there it was on the screen. TWO sacks which means TWO BABIES. That's right we were having twins and they both were healthy.
As weeks passed and the babies were growing everything was going perfect! I had two healthy baby GIRLS. 35 weeks seemed to take forever but that's when contractions started and to the hospital we went. I had gotten the round of steroids needed for the babies lungs. I felt great, contractions stopped and I got some sleep. Roger and I went home and enjoyed the rest of our evening. The next morning approach and I was awoken by the breaking of my water leading Roger and I on a hour long ambulance ride down to our specialist. Arriving at the hospital I remember being wheeled into our pre-op room and not feeling nervous at all about anything. Roger on the other hand was just his normal quiet worried self. It felt like forever waiting to get into the operating room. When we finally started the process at 1:19 baby A was born and at 1:21 baby B was born and they both came out screaming. I knew their lungs worked and it was a giant relief. I made Roger go with the girls while they finished up on me.
After recovery I finally got to hold my beautiful healthy babies and show big sister her new baby sisters and mama and papa their newest grand daughters. I remember how perfect and little they were! As Roger and I got settled into out room of course we couldn't sleep so at 3 in the morning we went down to see our newest additions and got to feed our babies their first bottles. Everything was perfect until baby A [Brenley Lynn] spit hers back up and hadn't passed the first black poop (maconium) like normal. While baby B [Brixten Jane] continued to eat normally. As days passed and our baby Brenley went through lots of x-rays and enigmas still nothing and she started to look very pail and sick and things just kept getting worse. While blowing veins and IVs not lasting they had to put in a PICC line to continue her IV nutrition and keep her hydrated. Mean while Brixten was uping her feeds and growing slowly but surely.
Then the dread day I was not looking forward to..discharge. Discharge without my babies, not how I pictured this perfect birth was going to go. After getting settled and unpacked at home I couldn't wait to get back to our babies and bring big sister. While running to the NICU to see our babies the look on the face of our daughters Dr said it all. When he started to talk and the "we think transfer your baby [Brenley] to children's will be best and they will decide is surgery is necessary" my heart shattered. I remember every emotion coming over me. I was numb, angry, & confused. They were going to separate my babies. If the NICU world wasn't hard enough this was just a big punch in the stomach. Little did I know it was only the beginning & plenty more to come. Everything was such a blur after kissing my baby and loading her up to be transferred. All I felt was numb. Roger was doing 100 mph I swear on the way to Children's. We got there and of course we beat the ambulance, I remember sitting there waiting and I got a phone call from the doctors. She tells me that our baby needs surgery. SURGERY! She was only 5 days old! So we met with the surgeon and they took her back!
That's when they started talking about CYSTIC FIBROSIS. We have never even heard of it and in order to find out if that's what she has we had to wait days for the newborn screen to come back. So a few days down the line one of the doctors had came in and Roger asks "have we gotton the results" the look at her face said it all. "Yes, BOTH of the girls have CYSTIC FIBROSIS."
I remember those exact feelings. I too have two kids with CF. Cohen(11) & Ruby (10). They knew something was off when Ruby was in utero. But testing showed I was a carrier but Daddy was not…only to find out later its not 100%. Ruby was born with Meconium Ileus and has her first surgery at day 2. To give her body rest she was given an ostomy. That ended up failing. So back to surgery a couple weeks later. 2.5 mos in NICU, 2 surgeries, 2 spinal taps, sepsis, blood transfusion & a final diagnosis of Cystic Fibrosis. Only to be told we needed to get our toddler tested as well. Low and behold, turns out he has CF too. The diagnoses were devastating but 10 yrs later I can tell you that my Dynamic Duo have been doing fantastic & are THE greatest gifts I have EVER been given.
Ps Here’s to hoping, wishing, praying that one day CF will stand for CURE FOUND ;) ???
Brings me right back to when we got my son’s diagnosis. So hard and overwhelming.