Weary & Burdened Ep. 005: A Long and Bumpy Road

It’s odd to look back on our story. Our journey. The road we traversed together. Hindsight leads me to wish I could jump back in time and warn myself of the dangers up ahead; To convey to 30 year old Michelle that the road wasn’t just unstable, it was treacherous. As we walked along, we saw the hazards but we believed everyone would be okay. We thought health, safety and family would be at the end of the path. Yet, little did we know there would be a fatality and five wounded souls. We ventured forward and sojourned on a long and bumpy road. Here are some of the things we encountered. This is what most of our days were like.

On Nov 22 we made our way back to the hospital for a nice visit. Just before we went home one of the extremely blunt doctors (the bedside manner of a post one) came in. She asked if we wanted to see David's x-rays. We agreed. Really, what were we thinking? We went with her and she, again, told us all the negative things about our little man. Then she dropped a bomb. He may never walk, talk or smile. I couldn't hold it together any longer. I left crying and was pretty angry. I was upset all evening thinking, "Are we putting our child through an unnecessary amount of discomfort? Do people think we are being unreasonable?

On November 23rd It was the day for David’s GI surgery. We met with the surgeon. He was an extremely tall man with GIANT hands. He said, "Don't worry, I'm not putting these hands in your baby. I have magnifying glasses and tiny little instruments." Such a nice guy. He explained his intentions and made us fully aware of all the possibilities. He was confident in the surgery but was more leery of the anesthetic. He also said that he would only perform the surgery during day hours because he wanted everyone to be at their best. No tired eyes. No "skeleton staff," as he worded it. 3 o'clock was likely the time. At 2:00 they started prepping David. They changed his ventilation mode to conventional because the oscillator shook his body and that was not ideal for surgery for obvious reasons. I was very emotional and read David a bible verse out of Psalms. Three o'clock came and went and we thought we had missed our window. At 3:30 the anesthesiologist came in to discuss with us the procedure. He was having surgery after all. But by 4:30 we were told it was a no-go. They wouldn't be able to get him in until 7-9pm so the surgeon nixed it.

We stayed with David and were approached by our primary nurse as she had heard we'd had a rough night the previous day. I guess word travels fast. I told her what happened with the blunt doctor. She seemed surprised by the news. I said, "I think the reason me and the doctor have different views is that we both see David enduring an awful lot for such a small person. The difference lies in the fact that she sees his days here ending in catastrophe; I see him leaving fully recovered. Therefore; I can justify the process to get there. She cannot. I'm okay with that." That ended my anger about it. We were just different.

Nov 24

Back at the hospital we had been told David would have surgery at 2:30 or 3:00. At 12:30 we were sitting looking into the incubator when over the loudspeaker, "Nurse for bed 4?" "Yes" the nurse said. "OR will be ready for baby at 1:00pm." Reuben and I looked at one another. What? Now? But we weren’t ready! We stood up and all hands were on deck. Lots needed to be done to get him ready. I read David Psalm 86 (if you've never read it, you should).

Then our doctor "friend" came over. Reuben and I were emotional and she said, "Have you spoke with the surgeons?" We said we had. She then said, "Then you know how worried the surgeons are?" Really? Is this the time? In that moment, I hoped David ended up as a 6'4", 250 pound football player just so we could bring him back to show her that "all things are possible through God."

As they walked him to the OR Reuben and I followed them. That was tough. So sterile, surgical and clinical. I quickly walked to his incubator. "Mommy love you. Good luck little baby." The same thing I said to him every time I left him. Then I cried all the way back to the family lounge. We waited.

Hours later the surgeon walked in with a smile on his face. Praise the Lord! They took out a part of his bowel (which was attached to his appendix so he lost that too). But his bowel and all his other organs looked good. In fact, his bowel wasn't just good it looked VERY good. Whoo! He was given a stoma and a mucous fistula which meant two pieces of his bowel were outside of his stomach to heal and would be joined and placed inside at a later date (likely May). I was so ecstatic and couldn’t wait to see my little man.

After a short time we were able to visit with our beautiful little baby. The nurses had their thumbs up. Everyone was super excited. Seeing him allowed me to breath a huge sigh of relief. He looked great. A little pale and exhausted but his tummy was no longer huge and shiny. We were shown his wound. He had battle scars to show to his future friends!

There were many other moms who had babes going through surgery. We were calling that week "bowel week." All the babies had successful days which meant a lot of hugs and smiles occurred in the family lounge. As I walked to the milk fridge where I stored my milk, there was the charge nurse with 4 women, all of whom were home support workers and had just been inside to see David. I was greeted with, "Here's the mom." The charge nurse said David was her star patient and said he's like David from David and Goliath. Then she got all teary-eyed and gave me a hug. David really was special. To see him was to love him.

Later our primary nurse was heading in for her shift. We gave her the thumbs up. She was all smiles and said she had been waking up to pray for him. She later told us that our other nurse had been praying for him too! How lucky were we? We felt so blessed to have the staffing we did.

One of the neonatologists said David did super well and was one tough cookie. She asked where he got his strength from. I smiled and said it's from Reuben's stubbornness but I figure it must not hurt to have some fiery Portuguese in him, too.

We were able to visit with family and friends. It was great to have visitors right after his surgery. Things could have easily been much different. One of our guests got a bit of a scare though. David's respiratory tube was too long so the respiratory therapists decided to cut it down. Unfortunately, it wouldn't reattach so the alarms started to sound and David's stats were plummeting. The RT's called for a doctor STAT. Within 30 seconds a nurse, an RT and 2 doctors had stormed the bed. But by the time they arrived the nurse had fixed the problem. Our friend almost stroked out. Reuben and I didn't bat an eye. You wouldn't believe how used to the environment you get. Sad but true. Our guest was still freaking out 30 minutes later. The NICU can be a very frightening place.

Another note on the nurse on schedule. She was kind enough to give us hair from David's "first" haircut. We were really thankful she had done that for us because by the time she got to David he was almost bald and we had yet to receive any hair. I might also add, that before his head was shaved I touched his hair and it was unbelievably soft.

November 25th was first day post-op (I went totally Grey's Anatomy...without all the baby daddy drama.) David's tummy looked good, his stats were slightly bouncy but they were able to get everything under control. An x-ray was done and his lungs looked better than they did prior to surgery. Good job little man. We spoke with the morning doctor, who was absolutely wonderful, and aired our grievances a bit about our doctor friend Miss. Blunt. Shortly after we met with one of the neonatologists (they're kind of the big dogs around there) and she explained a lot of what was going on. She also mentioned she had heard of our goings-on with our doctor "friend." We explained our position and she said the word would be passed on that the message had been received and no follow-up was necessary. Hopefully everything would be put to rest.

We were later approached by a nutritionist about David’s nutritional needs. They were working to help him gain weight because his lack of progress was quite concerning to them. Rightfully so, he was extremely wee. I figure they should’ve made his IV drip out of Coke and malasadas and I'm sure his genetics would have kicked in and he'd balloon right up!