Jessica's Story: Carrying On When the Unexpected Hits Hard
Carrying On When the Unexpected Hits Hard
Jessica’s story may be hard for some people to read, especially moms who are still pregnant with polyhydramnios and worry about the unknowns. But, if you are brave enough, this story is well worth reading, especially when you make it all the way to the end. Jessica’s family has been through quite a journey, but the touching tribute she shares about her sweet baby girl is a beautiful testament that we can all take to heart. I hope that you find the courage to read this story and are inspired by Jessica and Lila to move the mountains in your own lives.
Jessica doesn’t mention it in her story, but her AFI was 38 when her poly was discovered and went down before she delivered.
I do not want to induce panic for any mamas to be, but I share my story to urge the importance of advocating for yourselves and your baby to make sure you both are thoroughly monitored and taken seriously. ♥
My polyhydramnios story begins at 34 weeks pregnant. I was told that I was measuring 36 weeks and sent to schedule an ultrasound to see how big baby girl was. I couldn’t get in until I was 36 weeks and this is the appointment where I got my diagnosis. A doctor never came in to talk to us, the tech informed us it means that there is too much amniotic fluid, that it usually is idiopathic (no cause), and to schedule weekly ultrasounds to monitor the baby. Anxiety and panic kicked in as I deep dove into google and support groups on Facebook. At every ultrasound we went to, the employees would mention how short-staffed they were, that there was someone else covering for the typical physician, and our last appointment we only saw a tech who was in training, but we were always told “the baby looks great!” This is where I feel we were failed the greatest. I feel that my baby was not monitored close enough and that we could have prepared for what our lives would soon be like.
The next couple of weeks were a rollercoaster of emotions all while enduring the grueling physical effects of poly. I felt like it was impossible for my stomach to stretch any bigger and I could barely move due to severe abdominal and back pain. I was so used to hearing, “Are you having twins?” that I almost just said yes a few times from hearing it so often. I was terribly uncomfortable and had a toddler and school-aged kid at home as well. My husband was amazing during this time. He has been/is amazing ALL the time, a true partner in this crazy life and I am beyond blessed! Anyway, I expressed my concerns for the risk of labor and delivery as well as the health of my baby with multiple doctors all of whom I felt brushed me off because “the baby looks fine” and I wasn’t experiencing severe shortness of breath or premature contractions frequently. At one appointment, in particular, I was full-on ugly crying in the doctor’s office because I had to go through this another 2 weeks. I had gone into labor on my own and early with both of my previous pregnancies so I was terrified of this pregnancy due to the risk of cord prolapse or placental abruption outside of the hospital setting. I felt like I needed to be induced sooner due to the risks but induction was set for 39 weeks.
Fast forward to induction night – July 4th evening. We were so excited to meet our little firecracker soon, have her safe in our arms, and put this nightmare behind us. That fantasy faded quickly after our birthing experience. Before she came into the world, my water broke on its own after a dose and a half of Cytotec. It felt like a balloon popped and seemed like I flooded the room! Labor was pretty speedy after that. Lila was pushed against my pelvic bone and came out sunny side up with abrasions and bruises all over her sweet little head at 8:24 a.m. weighing 8 lbs 12 oz! I myself had no scary complications during labor or delivery thankfully. I was in my glory doing skin-to-skin with her when she turned purple and was taken from my arms due to respiratory distress. My husband and I waited for them to bring our baby back but that didn’t happen and I knew something wasn’t right. She stayed in the nursery for a few hours to try and manage her oxygen levels, then our pediatrician told us that she had to be transferred downtown to the children’s hospital NICU. A piece of my heart was leaving me and I had to go be with her. My OB agreed to discharge me and my husband and I started our hour drive to where would be “home” for the next 47 days.
Once we got to the NICU, a doctor met us in her room and told us Lila has hypotonia (low muscle tone) affecting her breathing and swallowing as well as making her “floppy”. This explains the polyhydramnios as Lila couldn’t swallow the amniotic fluid to regulate the levels. How can my active little soccer player in my belly be “floppy” with low muscle tone outside the womb? She also told us that Lila has a recessed jaw/chin, called micrognathia. Lila had to be on CPAP (continuous positive airway pressure) to maintain oxygen levels. She saw several specialists throughout her NICU journey and underwent a multitude of tests, scopes, lab draws, 24 hr EEG, an MRI of the brain, renal ultrasound, an echo, unsuccessful needle sticks for IV’s/PICC lines, and surgery to place a g-tube. The NICU days were hard, trying to recover postpartum while constantly on the go, emotions were always all over the place with constant worry and fear and mentally I had dark days that I’ve never experienced before. I had to stay strong for my family at home and most importantly for my little Lila bean. We had a lot of support at the hospital and at home and I will forever be grateful for everyone that helped us. Lila eventually was weaned off of CPAP and then oxygen all together and we were able to come home with oxygen as needed, a suction machine, medications to manage her secretions, a nebulizer, her feeding pump, and no answers.
She still has many unknowns to her medical issues to this day and we have had outpatient appointments weekly with various specialists including Genetic, Neurology, ENT, Audiology, Endocrinology, Neonatal clinic, Pediatric surgery team, and Orthopedics, as well as teams such as homecare physical, speech, and occupational therapy. What we do know is that she has a condition called Pierre Robin Syndrome clinically based on her micrognathia and very high palate, but this does not explain the hypotonia issues. She also has hypocortisolism. when her body is stressed (fever, sickness, after surgery) her adrenal glands don’t make enough cortisol to fight it. So we have stress doses of steroids to give her when she gets sick.
Our road has not been and will not be an easy one as more complications come up to tackle. Reflux has been the scariest yet. Drowning in her own reflux is a very scary reality that we are trying to manage with various doctors. Also, an ortho doctor confirmed congenital subluxation of the left hip with an x-ray. So closed reduction hip surgery with a spica cast is in our near future.
No matter what hurdles pop up in her life I know that we will get through them together. She has progressed so much already and we are so proud of our beautiful and sweet little fighter. We love and adore her with all our hearts and are so blessed to have her complete our family!
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Jessica's story is brand new!
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