The next few days were stressful to say the least. Feeding was a challenge. Initially she was tube fed to make sure she was getting all the nutrients she needed. I wanted to be able to breastfeed however the lactation consultant wasn’t much help and deemed it impossible – so I pumped. In order to take her home she couldn’t lose any weight and she had to be fed through a bottle for 48 consistent hours. Seems like a simple task however, if one of the nurses didn’t have enough patience, they would go back to tube feeding – which eliminated all progress made. The only way we were going to take her home was if I personally fed her every three hours, no matter what. When it came time for us to go home, she was not able to go with. She was a bit jaundice so we had to get those numbers down and ensure she was eating before she could leave. I mentioned earlier the worst day of my life was seeing our little girls cleft for the first time. I was wrong. Going home without your baby is the WORST feeling in the entire world, or at least it seemed like it at the time. Ella was born on a Wednesday and we were forced to leave on Friday. I insisted we go back every 3 hours so we could make sure her feeding success stayed on schedule. There was a lot of stress and very little sleep. Finally, on Sunday November 30th, we were able to bring our little girl home. She was such a tiny little peanut in her car seat. As you can see, her newborn clothes barely fit her.
Home life was a bit challenging. The initial game plan was for Joe to work from home so that we could “figure it out” together. That plan went out the window when he started a new job 6 days before Ella arrived. So, there I was at home, alone, in the middle of winter and no where to go, with a colicky baby who cried 6 straight hours every day. I was struggling to find the time to feed and shower myself, in between pumping, trying to feed her and console her. Whew, being a mom is the toughest job out there.
For the most part Ella defied all the things that we had thought she was going to be based on her cleft. After she got the hang of feeding, it wasn’t that bad. We had our doctors appointments – just like any other newborn. Coincidentally our pediatrician, Dr. Kari Hegeman, had two other new patients with clefts. She was always very impressed with how well Ella was doing and how much weight she was able to gain. At 7 weeks old she weighed in at 8 lbs. 6 oz.
One doctor appointment that was not typical for a new baby was taking Ella to meet the surgeon that would repair her lip and palate, Dr. Ramzi Shehadi. We scheduled our first surgery to repair her lip on March 19th, 2009. Ella was almost 4 months old at the time and we were very nervous and anxious.
In my opinion, the uncertainty of not knowing what to expect is much worse than the surgery itself. The only thing we knew about our first surgery was that it was scheduled for March 19th. We had so many unanswered questions, i.e. what time it would happen, what time we should be there, when should we stop feeding Ella, how long will we be at the hospital, will we be allowed to stay with her, how would we feed her afterward, who would help us, etc.
The night before the surgery we finally got the call to inform us that we needed to be there bright and early in the morning and surgery was scheduled for 8 a.m. We also finally found out that we were to give Ella no food or beverages after midnight. I asked if we should bring our own bottles to make sure she would be able to eat and was told no. They comforted me and said that they would have everything we needed and someone would help us re-learn how to feed Ella. Just in case, Joe and I decided to bring along our bottles...and everything else we could possibly need.
The morning of the surgery we were informed that the anesthesiologist offered parents the opportunity to go in with their child while they were being put under to comfort them. We were forewarned that the children can sometimes do crazy things and reach out for things that may or may not be there. I wanted to be there if Ella needed me, but at the same time, I didn't know if I could handle seeing my little baby lay there reaching for me when I couldn't pick her up and comfort her. The anesthesiologist said most babies that young wouldn't know the difference, so we chose to not go in. When it came time - we walked her down to the double doors and handed her off to a strange nurse. We were way more scared than she was. I thought she would cry and instead she reached out for the nurse and never looked back. What a strong little girl!
Ella came out of surgery at 10:30 a.m. and we were called down to see her. That was a very emotional time. I had grown to love that big bright smile and couldn't even imagine what she would look like after surgery. When we got into the post- surgery area I barely recognized her. She was crying so hard due to the anesthetics that it didn't sound like her and when they turned her over I couldn't tell if she was mine. Her face was so swollen, but I didn't know if it was normal and going to stay that way or if it was truly swollen. Her face still had blood on it from not being fully cleaned up, which was also scary. I held her and tried my best to console her. You could tell as soon as I grabbed her she felt more at ease. I wanted to hold her tight and make all of her pain go away.
After she stabilized we were able to take her to our room where both sets of grandparents anxiously awaited to see their baby girls new face. I think it was hard for everyone to see Ella without a smile on her face. It’s such a permanent fixture on her face, that even during that time, and the extreme pain she was going through, she would still try to smile and forget that it hurt so bad. She ceases to amaze me.
I was dreading feeding her for the first time and no one was coming to help us or tell us what to do, but I knew she had to be starving, so we called in a nurse. She was basically zero help. She proceeded to tell us to just feed her as if it were normal and at home, meaning with our bottles. Thank goodness we were overly prepared. I thought that since her lip was just sewn back together and had stitches and glue holding it together she wouldn’t want to take the bottle but, when I offered it, she latched right on and drank it down. I was so relieved.
We spent one night in the hospital and were sent home the next day armed with our no-no’s to prevent her from touching her face. For the most part, the recovery process went as smooth as could be expected. Ella and I spent the week home together and the following week I returned to work.
Read Part 3: Palate Repair
Read Part 3: Palate Repair