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From day 1 to 365, this kid has been all smiles!
This has quite possibly been the fastest year ever for me! Not sure if that is normal with your second kid or not? Or perhaps because when you become a Mom to a child with any type of special need, you’re constantly planning and thinking about what’s to come next. The next surgery, the next milestone, the next meal…
When I think back to our 20 week check-up when the doctor told us there was a high probability of our baby boy (yay!) having a cleft lip, it was hard. Clearly I looked shocked and worried, because she said, “I guess this wasn’t something you were planning to hear.” Really? That’s how you console a parent? Talk about bedside manner, no shit I wasn’t prepared to hear that news.
The immediate mom guilt set in and all I could think about was “what did I do wrong?” I didn’t understand it. I didn’t know what caused cleft lip and palate. I didn’t know if other things could also be going on. It was scary, stressful and I had to do everything I could to fight off severe depression.
Thankfully, my husband is amazing. He’s positive, he’s resourceful and he never once made me feel like this could in any way be something I did to our son. We’re big on facts, research and community. So, I made an appointment with the high risk doctors so they could take a look with a more powerful ultrasound machine, and Brian immediately started reaching out to doctors and nurses he knew and researching parent groups on Facebook. I was contacted by the Cleft Clinic within our health care network within a couple of days, and the wheels were set in motion to start preparing and learning more.
It took me weeks to come to terms, to learn that cleft lip and/or palate is actually a very common birth defect, with nearly 1 in every 1,000 children being affected. That it is caused by genetics and not by anything I could have done in the time leading up to finding out, and that there are more cases than not that go undetected. I don’t think all of that really sunk in until we met with our (amazing!) plastic surgeon who would be doing both of Nolan’s repairs.
While Brian had been chatting with everyone about Nolan’s condition, what the steps were looking like, what we needed to be prepared for, I was much more reserved. I knew the people I wanted to share with would have a lot of questions, just like we did, and I wanted to have some answers. Our first couple of high risk ultrasounds were long and didn’t give us much more info because our little dude had his hands or feet in his face every time. I still didn’t know how severe it was, and it was so hard to share the news, because I couldn’t get past that guilt and would completely fall apart, even though I knew better. The good thing that did come from those appointments was that we learned his central line was healthy. This meant his brain, heart, spine and organs all looked perfectly healthy.
About a month after finding out, I finally got the nerve up to share publicly. Of course, after ensuring all my family and closest friends knew first. I mean really, there’s nothing worse than finding out personal news about your family on Facebook…If you’d like to see what I shared, here you go.
So, we got through the last few months of the my pregnancy meeting doctors, specialists, financial counselors, you name it. Fast forward to the night of January 26th after I had worked out, as usual, and made two pies because we were celebrating my girlfriend’s birthday at work the next day, I started feeling some contractions. By 4:30am I was pretty sure I was in full on labor, but the contractions weren’t too close together, but that all changed within the hour. After getting up and showering, still thinking for some insane reason that I’d be able to go to work, then head over to the hospital, that was only about 5 min away. I decided, it may be best to head to the hospital.
My husband knew there was no way I could drive, so we dropped my daughter off at before-care at school and headed for the hospital. Because he’s smart and knew that we weren’t going to make it in time, he got us as close as he could and into Denver County before we he called 911 (this ensured I’d get to the hospital I wanted to deliver at). Next thing I knew, we were parked next to a dumpster at the corner 7-11 and an ambulance was on site. Perhaps the funniest part (looking back) was that the 911 dispatcher was trying to prepare Brian for me to deliver in the backseat and he was refusing, just telling her to get the first responders there stat. Ha!
While my contractions were really close together, they told me they wouldn’t run lights and sirens until I told them I was sure he was coming. Well, about five minutes more is all I lasted and I knew we had to get to the hospital. Best part of the ride was the paramedic telling me that I needed to call Brian and tell him not to follow them too closely or through any red lights. I laughed, said “good luck” and that he was more than welcome to call my husband and tell him. 😉
I’ll spare you the labor details…needless to say he didn’t come quite as quickly as everyone expected, but by 9:30am our little 5 lbs 15 oz bambino had arrived! As I laid there with him, I was so thankful that we knew what we did in advance. Even though we didn’t know a lot from the limited ultrasound photos, we knew to expect a cleft baby. As much as I hate to say it, I really don’t know how I would have reacted if we had been surprised at birth. Of course there would have been pure joy and love for a healthy baby. But knowing the guilt I had finding out in advance, I can only imagine what it would have been like at delivery. I share that, to say, I have SO much admiration for women who go through the birthing process without knowing and have no guilt, only love. But for this kid, or any other, how could you have anything but love?!
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Nothin’ but love for my bambino!
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Proud Big Sis and Dada!
Just over 24 hours later, we’re discharged and on our way home! Big Sis is ready to rock here “helper” duties and I am BEYOND grateful that my husband banked enough vaca and PTO to be home for the first month with me!
Now of course the real work begins. Because a cleft lip and palate baby can’t nurse for nourishment I committed to pumping exclusively and boy, does it ever put into perspective how much time and energy goes into nursing. Amen to the Mama’s who nurse for the full first year! I’ll tell ya, pumping is exhausting, not only physically, but mentally. Just getting hooked up to a machine multiple times a day, when you know that could have been precious bonding and critical skin-to-skin time with your little one, is hard. However, I wanted to do my best and give Nolan all I could to help his development so I never resented it, I just multi-tasked and made the most of every session.
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An incredible bond!
As we prepared for Nolan’s lip repair surgery, our plastic surgeon wanted him to be at least ten pounds. Well, obstacle number one with my milk production at about week 5, when my milk all but quit, after I was producing like crazy and stocking the freezer. Ugh. Multiple trips to see my awesome lactation consultant, trying every trick, supplement and cookie in the book, I finally had to resort to meds to get my milk back. Because of the postpartum depression I was already starting to have, I was really worried about taking meds that passed the brain barrier, which of course are the only meds approved in the U.S. That was not an option for me. Thankfully, my LC recommended a great med that I was able to order from Thailand. Yep, you read that right. Thankfully they worked, and within a few weeks we were back on track.
So, at month three we were ready for Nolan’s lip repair. It’s pretty crazy to think about sending your 12 week old in for surgery that will completely change how they look. But we were ready, but man, we were not ready for him to come out looking so great!
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Morning of lip repair. It was early…
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Bright eyed post surgery in the recovery room. Yep, arm braces.
Oh, this kid. No issues coming out of surgery, but those “no-no’s” (arm braces), they are torture on the parents as much as they are the kids, but he did great with them. The surgery is no-joke. It’s a three layer repair, as they bring everything together through the muscle, tissue and top skin. He’s healed up great!
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A few days post-op…still all smiles!
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Feedings were interesting.
I massaged his lip daily to help soften the scar tissue, but overall, he just healed up beautifully!
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This kid!
His recovery time was two weeks, and from there we just had to live life as normally as possible. The only real hiccup we ran into was his weight gain. I basically produced skim milk so our doctor had us move to a 50/50 formula to milk plan. It’s tough when you are working so hard to produce for your little one, only to determine that you can’t give him everything he needs. Once I got past my initial guilt about my nutrition and what I wasn’t providing him and we got going on the formula plan, his weight picked up and all was good. He’s still barely on the curve, but something tells me he’s bound to have a major growth spurt.
Fast forward through all the awesome “firsts” and onto February 2017 and it’s time for palate repair. This is also a three layer repair, from the nasal passage, to placing the muscles properly and then the tissue repair. Which is basically like stitching through tissue paper according to our surgeon. We also had his ear tubes replaced (forgot to mention that with the lip repair).
On the day of surgery, I made the decision to go into the OR and be with him as they put him under. I know he’ll never know I was there, and maybe it seems silly, but I hoped it would give him some peace as they got him placed on the operating table.
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Look at that cute tush…just flirting with the nurses!
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Resting post-op
I suppose the hardest part of surgery for any parent is the waiting game. All-in-all, this surgery took about two hours starting with new tubes then the palate repair. For the next week, it was all about managing pain, drinking from a syringe again, and as our luck would have it, everyone in the house came down with a cold also. Uhg. Week two, it’s continuing to ensure he keeps his hands out of his mouth and eating more. He had a great report at his two week check-up and we go back in two months to ensure all the long-term stitches (in the muscles) have healed up!
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Surgery? What surgery?
Now, it’s the first week of March, and it’s back to reality. The two big surgeries are behind us and now, baring any small tears in the palate that would need to be repaired again. But, I have full faith that we’re done with surgery for a few years! Now we get to see this dude, aka Captain Adventure, grow-up and be every bit the fun loving kiddo he is!
I can’t thank you all enough for your thoughts, prayers, cards, sweet messages and emails over the past year. They have kept our spirits high during the tough times, and made me realize more than ever the power of love!
xo, Tiff & Nolan
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My handsome!
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