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 30^th, 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 19^th, 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

On July 15th, 2008 we had our first ultrasound, which was the most amazing thing I had ever experienced at that point of my life. We were able to see her little feet and hands and all four chambers of her heart. Sadly, we had just switched insurance providers, which meant we also had to switch my OB, whom I had never met. Since the appointment was rushed, we didn’t get to meet her the day of the ultrasound either. Even though we were excited about our new bambina and adventure ahead, I had a weird feeling as we were leaving. Maybe it was how eerily silent the technician was or how she wouldn’t answer any of my questions. When she handed us our printed picture I remember saying, “Her upper lip sticks out farther than her little nose.”

The next day I was finally able to meet (via phone) my new OB, Dr. Kristine Bathke, when she called me at work. I could tell by the tone of her voice that something was wrong and she felt guilty that our first interaction would be over bad news. She went on to say that the ultrasound had detected a cleft lip but, she didn’t think it was the palate. When I hung up, I didn’t really know what to do. I went to Google and began to search cleft lip, just hoping to find some promising information. I didn’t find it, so I called Joe.  Since that phone call, we have spent numerous hours researching in order to better prepare ourselves. Unfortunately, that process was not as easy as we had hoped.

We had a follow up doctor appointment on July 18^th, where we had a 4D ultrasound with the paranatologist, so we could get a better look. I think it’s safe to say, that was the worst day of our lives. As I lay on the table, Joe held my hand and the tears strolled down my face. The doctors were so cold and insensitive. We were first time parents, so we were scared and nervous as it was. They acted as if this was an every day thing and just grazed over her face, when it was the first time we were meeting her. Once we were able to get a better view of her face and then were informed that she not only had the cleft lip but the palate as well.

We were then rushed out to meet with the genetics specialist, who tried to offer some explanations, what our options were and a ton of information. Due to the circumstances we had JUST went through, I could barely process all of the things she was saying. She asked if either of us had any history of birth defects in our family. Birth defects? What was she talking about? I was so upset I just wanted out of the room. I was trying to be strong and listen to the important stuff but all I wanted to do was scream and cry. She went on to say that a cleft lip and palate is often an indicator that something else could be wrong with the baby. Which meant tests, and LOTS of them. She asked if we were interested in conducting an amniocentesis in order to determine if there were other complications that we would need to be aware of. I knew there was a risk of miscarrying if we did it and I didn’t want to lose our baby.  I thought we would have time to think about it – go home, talk it out. Wrong. We were told if we were going to do the test we had to do it, right then, right there, no time.  We knew that almost nothing was going to stop us from having that baby, but we also knew that we needed to be as prepared as possible. So, we did it. We were rushed into a separate room where I lay on the bed, AGAIN – and a nurse stuck a needle the size of a ruler into my stomach and withdrew the fluid. At the time, it didn’t hurt that badly, maybe it was because I was overly worried about so many other things. Afterwards, it hurt – like a bitch. We elected to find out the sex during that appointment as well. For some reason, I felt it would be easier for the baby if it were a boy.  If there was a scar from surgery, he could grow a mustache. I was willing it to be a boy. Nonetheless, my magical powers did not work, and we found out we were having a girl. This was at least something we could focus on versus the birth defect.

So, we went home. I was supposed to go back to work, but couldn’t. We cried the entire way home. When we got there, we lay in bed and cried some more. Joe is always so positive and hopes for the best but, I just needed a day to be angry, to wonder why life isn’t fair – so he let me, and we cried.

We then waited, 14 days for the results. To our relief, everything came back normal and the cleft was an isolated incident. We met our surgeon, Dr. Shehadi to get a better idea of his plan. For the most part, the appointment was a waste of time. The hardest part of our entire journey has been the, “wait and see” mentality. I am not a wait and see person. I believe you need to be educated and prepared in order to make the end result the best possible outcome. I asked SO many questions and received zero answers.

Besides having more ultrasounds than a normal pregnancy and the weekly stress tests, the rest of our pregnancy was smooth sailing. We took all the necessary classes to make us responsible parents, childbirth education, CPR and even prenatal yoga. We focused on our little girl and prepared for her arrival. The more time that went on the less we remembered the hardships she would have to endure once she came into the world.

Read Part 2: Birth & Lip Surgery