From Horrid Screams to Sweet Dreams
by Chelsea Jones
This journey has been very difficult to talk about, but if this story helps at least one mom or dad then it is worth it.
Quinn Aidan Jones's journey to life was planned from the moment my husband and I got married back in 2011. Both of us always wanted kids, but we had no idea what a tumultuous journey it would be to get there.
Unfortunately, we struggled with fertility issues for five years. Countless procedures, drugs, and surgeries I endured in order to conceive. Finally through IVF Brandon and I conceived our little miracle on July 15, 2015. The amount of joy and excitement and instant love we felt was insurmountable. After five hard years, we were finally blessed with our very own baby.
My pregnancy wasn't easy. I suffered from hyperemesis gravidarum which is an extreme form of morning sickness. I threw up every day multiple times a day from week eight up until delivery. By week 30, I was diagnosed with gestational hypertension. I had never suffered from blood pressure issues before so this was very scary. My blood pressure was so labile and with me being on my feet twelve hours a day for work would not work. I went on maternity leave at 32 weeks for strict bed rest. I had to see the gynecologist every 2 days for sonograms and weekly lab work for preeclampsia signs. I also was admitted and discharged from the hospital 4 separate times due to complications.
Finally at 35 weeks my preeclampsia labs showed I was in severe preeclampsia and Quinn was coming no matter what by emergency c section. During the c section I suffered from a seizure and Quinn wasn't breathing upon birth. He had to be resuscitated for what seemed like forever. Quinn spent 6 days in the NICU. he did so well that he went home with us at 4 pounds 5 ounces.
I wanted to be a mom my whole life and now I was with this tiny little human being depending on me for everything.
The first week went great and he started gaining weight like a champ. Almost a pound a week! Then by week two I started seeing some signs of struggling with eating. He started showing signs of arching is back, getting very stiff at feedings, holding is breath, signs of congestion, and of course the horrid screams. The screams and the crying were absolutely horrible. They wouldn't stop no matter what I did.
Visit after visit to the pediatrician I was told this is normal. Your child has colic and he is gaining weight fine. Each time that doctor made me feel like I was the one causing Quinn to scream and not eat. He even told my husband that as much as we are calling that I need to be calling my doctors too because I have Postpartum. (That was the last straw and day with that doctor.) I switched doctors and the new doctor begrudgingly gave me a prescription for Zantac and a referral to a pediatric GI. The GI Doctor said all of Quinn's symptoms were not colic and indeed he had severe GERD and was allergic to milk. He showed positive for blood in his stool.
After trying what seemed like every formula under the son and a hospitalization for refusal to eat, Quinn started to tolerate puramino. The GI doctor put him on nexium 5mg packets twice a day. These did nothing for him and actually made all of his symptoms worse. The doctor then put Quinn on Prevacid solutabs and Mylanta six times a day. Nothing was working. I was at my wits end and that's when I started to research for hours on end for answers for my sweet boy. That is when I came across the facebook group Infant Acid Reflux Solutions.
I read and reread everything on this website and then read it again. I read the studies that Dr. P. (Jeffrey Phillips Pharm. D) performed. I understood the pharmokinetics of PPIs and how its metabolized quicker in babies. But, that still didn't take away my fears of going rogue. No doctor had ever mentioned MarciKids dosing to me and my child was severely under-dosed. I knew in my gut this was the answer but I was scared and needed as much help and guidance as possible. The moms in the Facebook group helped me so selflessly. They even gave me their phone numbers and just let me cry to them and told me they understood exactly what I was going through.
Kira was so kind and tried to answer all the questions I had. During this time Dr. P was on vacation in the Bahamas on a sailboat where cell and internet connection was dicey at best. But, this man helped me at every chance he got reception and answered my questions and subsided my fears. He never once seemed irritated or upset that I was interfering on his vacation. He was just so compassionate and sympathetic to me. I was finally convinced and had TummyCare Max overnighted to me.
When the package arrived, it all seemed so daunting. How was I going to follow these instructions exactly to make sure I wasn't messing up this medication for my baby? It took me what seemed like forever to mix the stuff up and transfer every little particle out of the grinder and into the bottle, but I did. And then began the acid battle. It was horrible. All Quinn's symptoms intensified tenfold. His screams were unbearable to listen to. All the mommy guilt creeped into my head during these 14 days. I made my baby worse. He is suffering worse because of me, how could I have done something like this? Then by day 14 things started to change. The screams became less and less and he started not fighting the bottle as much. My sweet boy started to smile yes smile at me. He even started to coo and not cry at all hours of the day. I was finally getting to see my baby's personality.
We have been on TCM. With Prevacid for 6 months now and it has been a true lifesaver. His symptoms are controlled about 85% and we still have bad days. But without TCM I don't know where we would be. We would have probably ended up with a feeding tube and only Gosh knows what else. If you are questioning TCM don't. Take the plunge and do it. I am forever grateful for Dr. P, Kira, and all the mommies that are always there to answer my questions. Dr. P you will always be our angel and there is no way ever to repay you. We can only say thank you and that just doesn't seem like enough.