Updated: Apr 30
We weren't out of the weeds just yet.
When we left Northside, we quickly had worried that we had more issues than we intended with our son. As I walked to the parking lot, alone on my way to my car, crying over my son, I couldn't help but just plead to those I knew to pray despite my lack of religion.
"He's going to need surgery"
The first of major thing we had done to our son was a biopsy. At this point, he had already underwent A Barium Enema, a Cardio Echo, an X-ray, Radiology visits, Bilirubin Lights, a feeding tube, and an enormous amount of blood draws from his little heals.
A Barium Enema is when Barium is injected in the anus to via a small tube to enhance to images of the small colon during an X-ray. This is also called a Colon Xray. Why they wouldn't just call it that for the sake of very scared and emotional parents is beyond me. But alas, I feel like I am gaining tons of medical knowledge that I never knew before.
His results weren't as we had hoped. The doctor informed me that she was nervous that he had Hirschsprungs Disease.
Scottish Rite- Childrens Hospital of Atlanta
We never thought we would be in this position let alone here on day three; in a hospital with tubes and cords attached to our new baby. Scottish Rite did everything they could to accommodate parents. The nurse had me fill out some paperwork, as in information regarding our contact. I remember her asking how we liked to learn. I found this an odd but necessary question for medical staff to ask you. We told her "hands on" is the best approach for us. I want to know everything and anything I can to help assist my son in getting better. After his X-ray, we waited for the results of Hirshsprungs and had a few doctors come by and chat with us about his results. First was the confirmation of Hirshsprungs.
Hirshsprungs, as I have described previously, is the absence of nerve endings in the small colon making passing gas and stool difficult to do. This can be corrected by simple surgery. According to some research I did on my own, this condition is rare but can be associated with Down Syndrome. I was nervous to get the diagnoses but was relieved once the Registered Nurse for his surgery explained it to us. I did my own research but I obviously still asked as many questions as I could regarding the surgery and his care. To correct his small bowels, they would Laproscopically enter his small bowels with a scope to determine how extensive the damage was and how far the Hirshsprungs was. Once they find out the exact length, they would then cut out the "dead zone" where the never endings end. Once that section is removed, they do whats called a Pull Through procedure. They take the healthy part of the bowels and attach it to the intestines making the entire tract functional.
I've had laparoscopic surgery myself to remove my Gallbladder after my first child, so I know that it isn't a crazy stressful surgery. It's minimally invasive and a very nice and easy recovery. I asked how long we could expect him to recover and aside from the surgery itself, we were told it could take possibly four to seven days of healing for the intestines to "recover from shock". I was also told I couldn't nurse him during his recovery to assure that his tract can heal properly. So, he unfortunately has to be fed through his feeding tube or just IV Fluids. They scheduled his surgery for Tuesday morning and we are slowly yet quickly approaching that day and time. My nerves are a wreck but I know that he is in the best possible place and getting the best care he can. As much as I'd like him to be home, I told my husband "could you image him being home right now with all these issues and us be unaware?" and that really helped me a lot more than I intended it to. I couldn't imagine him being in pain passing gas and barely pooping because he had Hirshsprung and I didn't know. This surgery will only do good and get him closer and closer to being discharged. Because right now, he has nothing else holding him back from being snuggled in my arms, in my home, in my bed, with the rest of his family. In order to be discharge, there is a small checklist of things that have to be done. As parents, Scottish Rite makes you attend three classes and watch a video; Car Seat Safety, CPR, and NICU Transition class as well as a DVD called "Purple Cry" which Im assuming regards to getting a child to cry when they aren't breathing. We will have to get a repeat X-ray to ensure there are no issues as well as a repeat Echo before he gets discharged to check on those heart issues. To say we were out of the weeds would be a gross understatement. We were just getting started.
I knew it would be a challenge to get Ollie to breast feed. The first two days I couldn't produce a thing. Not even .5 of an ounce. I was defeated, upset, and worried that I wouldn't be able to enjoy this amazing experience with my son like I did my daughter. Before we got transferred, Ollie and mostly myself were working with a lactation consultant. She was wildly helpful and really resourceful. She told me that I was doing everything right and that my milk supply would come. I remember the second she left the room that I cried. I just wanted one thing to go right. In the last three days we hadn't been able to hold him as much, nurse him, comfort him, without cords and machines attached to him. I just wanted one thing to go right.
After two days of hard work, waking up every three hours to pump, it finally came through and it came through with a force! I was able to pump more and more each time. Moving from just a combined .5 oz to a 2 oz, to now pumping 5 oz per side. After the transfer, I was able to get him to latch on immediately. He knew what he was doing and knew he was in control. But the issue was that outside of this huge accomplishment, they had to put him on NPO, which means no feeding, a few different times. Going from nursing him to not nursing back to nursing was a challenge as well as nursing him via a bottle and breast milk. For a while they had to supplement with formula through an NG tube, a feeding tube, because he wasn't getting enough from me or nursing very long.
The thing with Down Syndrome babies is that nursing can be very difficult. They also don't have the jaw strength that most normal babies have. So I had to do a lot of work to wake him up, get him to latch down and express milk, as well as staying on. I've started to finally breast feed him as he progressed more and more in the hospital . It was hard to establish his milk supply when I primarily am using a pump and desperately trying to get enough for him to have this in his feeding tube/ bottles at the hospital. Now, he nurses like a champ. He latches, he drinks and swallows, and he LOVES nesting and rooting. There are times I walk in and talk to him and he starts looking around with his mouth wide open, hands going towards his mouth so he can nestle in and nurse! He mostly drains one side and then promptly falls asleep during his burping. But lately he's wanting to get on the boob and eat three times versus the two we were doing, its like he wants a snack! With constant work, and exhaustion from pumping every 2-3 hours at home, my milk has come in more and more. I knew my breast feeding adventure wasn't going to be as easy as it was the first time, and that Ollie was going to have to work to make sure he does his part in learning how to nurse.