After a long labor we finally had our little girl to hold in our arms! Within 10 hours though, our world was turned upside down. The pediatrician came in to do her assessment of Raegan around 11am and as she was looking her over she said the words,
Did they say anything about Raegan after she was born?
Raegan has a cleft palate.
We have been through the ringer to have this baby. We had to do IVF. I went through 28 hours of labor, 8 of which were completely natural on pitocin, and it all still ended in a c-section. Nothing was going according to plan and now you're telling me my baby has a cleft palate?
I cried as I held her, saying over and over "I'm so sorry, I'm so sorry baby." I couldn't protect her anymore. She was no longer inside of me, safe from harm.
The doctor said the birth team must have missed it when she was born because it was far back in her mouth and very small. She showed us with a light and there it was. A tiny little cleft that was literally tearing me up inside. She shared with us that it could be fixed with surgery once she was older.
I honestly don't remember much of what the doctor said after that. I just kept crying and holding her close. Little did I know this was just the beginning.
The pediatrician left and we shared with our family Raegan's diagnosis and knew it was just a small bump in the road. We had been through much worse before. We continued our day of loving on our baby. She got her first bath, Kyle changed his first diaper, and we put her in her first outfit.
After about 30 minutes, I called the nursery and asked them to bring her back to me. The nurse came in, but she didn't have Raegan. She shared with us that they found out she has jaundice and she would need to stay in the nursery overnight to be under the light. They would bring her to me every 3 hours to feed, but she would have to stay there for now.
Alright, cleft palate, and now jaundice. We have to be done right?
They brought her to be every 3 hours and we tried to nurse, but she wasn't catching on. Part of having jaundice is needing adequate nutrition to help your liver flush out the jaundice, but baby girl wasn't eating. So they had to put a feeding tube in. And protocol is if a baby needs more than 2 feedings through a feeding tube, they have to be admitted to the NICU.
So the next time I saw my baby that's where she was. I stood and cried by her crib side as she sat under the lights with a food tube in her nose.
Since Raegan had a cleft palate we found out she couldn't eat from a regular bottle or the breast because the hole in the back of her mouth wasn't covered when she swallowed. She needed to learn to eat from a special bottle that had a long nipple so that when she sucked from it, she would push it up with her tongue and the nipple would cover the cleft palate. But it was going to take time for her to learn.
She started taking small amounts and then she would need the rest of the formula given to her through her feeding tube. She would expend so much energy on eating that she was burning more calories than she was taking in. I was pumping every 3 hours and getting as much as I could, but my milk didn't come in until the day I left the hospital. So we had to supplement with formula until it did.
We continued working with her.
But Wednesday rolled around (my discharge day) and she wasn't where she needed to be, so we had to go home without her.
I walked out of the hospital without my baby. As we left another family was leaving with their baby. I lost it. I cried as we walked to the car knowing that we would be living at the hospital until we could take her home.
We had been home an hour and we got a call from the doctor. They were transferring our baby to a hospital that could adequately take care of her, Medical City of Dallas. This hospital they were sending her to was the best of the best and could help her more than the hospital we were at.
She had her first ambulance ride at a few days old. I rode in the front and arrived at the hospital. We got her settled and continued working with her. We met the doctor who would be doing her surgeries eventually to fix her cleft palate and met with the NICU doctor. He was very optimistic and expected her to only be in the NICU for a week or less. Being at the NICU at Medical City of Dallas was a big change. At Baylor Frisco, where she was born, we had our own private room in the NICU, but now, we had to share a room with another baby. It was very cramped. I wanted my baby out ASAP.
She was admitted to Medical City Dallas on Wednesday and we continued working with her on eating from her special bottle.
She continued to get better and better and by Saturday she was eating her whole bottle without the need of the feeding tub, and the doctor told us, if she continued this for 48 hours we could take her home! As you can tell, Kyle and I were so excited at her progress!
Well girlfriend, stepped up and continued taking her bottles like a champ and we got to take our sweet girl home on Monday, August 3.
|yes, they had to wheel me out in a wheel chair even though I hadn't been in the hospital for almost a week. Protocol apaparently.|
We are enjoying having her home as we get used to being a family of 3.
|Raegan's first meal at home. Allie being a protective big sister.|
|oh those cheeks!|
We see her craniofacial doctor (the doctor that will do her surgery to fix her cleft) today. Praying everything goes well and I will post an update once we know more.