Wow! Well, I have never been one to take the boring, easy road. Come on, what fun would that be? My life is the epitome of “life is what happens when you’re busy making plans.”
On Wednesday, February 12th, on the brink of a huge snowstorm, John and I made our way to the hospital to have my labor induced. Long, but fairly uneventful story short, after 39 hours of trying to get things going, we cried uncle and agreed to the one thing that I insisted I DID. NOT. WANT. Duhn, Duhn, Duhn…a c-section.
Interestingly enough, when I held my baby for the first time, I suddenly no longer cared how he made his way to my arms. I was just completely in love like I’ve never imagined I could be and grateful to have him in my arms safely and healthy.
“Healthy”. My sister and I recently had this conversation and I experienced it first hand that weekend. She is experiencing her own version of this, you can read about it at IansInfantry.com. Healthy is really nice and we all hope for healthy, but guess what, my baby has a health concern and I was still over the moon happy and in love with him.
John Conor (“Jack”), named for his daddy and uncle, (yes, we know about the terminator character) was brought into the world at 1:55PM on Valentine’s Day. What a special Valentine! He is honestly one of the most beautiful babies I’ve ever set eyes on. He’s tall and handsome, like his dad and has the most easy-going and pleasant demeanor, even his little cry is cute.
Our first day with Jack was magical. Grandparents and friends made their way after the monster storm to visit and share our complete joy over Jack.
As the day went on, I was trying to get him to nurse and he was not really having it. I just figured he needed time and asked to have the lactation consultant spend some time with us. I had gestational diabetes and the stress of 39 hours of trying to induce labor gave my blood sugar a spike, which in turn made Jacks blood sugar drop after birth. As a result, we were all really concerned about him eating so that he could stabilize his blood sugar. After hours of trying nursing, we all agreed to give him a little bit of formula, just to get the blood sugar under control. What we found out is that he didn’t want that either.
Still, we were patient with him and not stressing too much about it. Sometimes newborns need a little bit of time to figure things out. I was sitting in my room with John and our nurse and looked at that chart on his bassinet that tracks his diapers. I realized at that moment that in almost 36 hours I had not changed a diaper. John had and the nurses had, but I was the one who was spending the most time with Jack and I hadn’t had to do a diaper change. I asked the nurse about it and if it was normal. What we discovered is that Jack was not pooping. Again, it had only been 36 hours-ish, so we figured give it time.
Later that night, Jack threw up all over his bassinet and it was yellow. He had done the same thing in the morning, but I didn’t think much of it because someone earlier had told me that c-section babies spit up a lot and that he would probably spit up a bit for a day or two. Well, our night nurse was thankfully with us when this happened, because yes spit up is normal, but yellow spit up is not.
Jack spent the rest of the night in the NICU. John and I spent it in our room staring at the ceiling and worrying. The hospital team at Chester County was fantastic and we were transported to CHOP first thing in the morning.
After a few days of tests and observation, Jack was diagnosed with Hirschsprung’s Disease. Basically, there is a section of his colon that did not develop ganglion cells, which are the nerve cells that are responsible for creating contractions that move the bowel. This was causing a blockage in his bowel and such discomfort that he had no interest in eating. When they looked at Jack’s intestines via fluoroscopy, they discovered that his bowel was severely dilated/inflamed. This can be life threatening if it is not discovered and treated.
To treat Jack’s condition, the surgeons performed a colostomy. The ostomy will allow for Jack’s intestines to heal and grow. He will have to have the ostomy for a few months; the plan is about 6 months or 15-20 lbs. Once Jack has reached one or both of those milestones, as long as his bowels are in good shape they will do another surgery to remove the bad section of colon, pull through the good colon to create a healthy pathway and reverse the ostomy. At that point, Jack’s bowel function should be fully restored for the most part, he will lead a “normal” life and never remember his early ordeal. We spent almost the first 2 weeks at CHOP.
I am happy to report that at the time of writing this post, Jack is home. He is now 9 weeks old and thriving. Being his mom is the best job I’ve ever had in my life…even though he sometimes keeps me up all night 🙂 Most people would never know to see him that he has an ostomy and for the most part he is a perfectly normal baby. He loves to kick his legs. He’s bopping the hanging rattles and toys on his playmat. He knows his mommy and daddy now and loves snuggling, smiling and singing songs. He is even giggling and it’s hilarious!
The last 9 weeks have been the best 9 weeks of my life. At the same time, they’ve also been the most challenging, especially dealing with a special circumstance and learning to care for an ostomy along with my baby.
I found when we started this journey that information for moms and dads on Hirschprung’s and infant ostomy care is very limited on the internet and what is out there is very institutional vs. real life. John and I were lucky enough to connect with another mom who my sister has met through her experience whose son has an ostomy. Our health insurance thankfully covered home nursing visits for the first 2 weeks, which was incredibly helpful. We spent our first few weeks nervously learning the ropes of caring for Jack and did a lot of trial and error.
I am going to write a few posts in the coming weeks in hopes of sharing what we’ve learned and building some information out there for other bleary eyed, exhausted, nervous moms and dads who find themselves learning new nursing skills along with parenthood.
I’ll also add a little sugar and share some of Jack’s stories here. 10 weeks ago, I had left my full-time job, planning to start a blank slate after Jack’s arrival. Who knew the direction it would take. I have honestly never had such an honor and I am so grateful to be this beautiful little boys mom!