Little N's First Year, Part Two: The first few months

We made it home from the hospital, with a whole folder of instructions on how to care for Little N; a whole bag full of cleft palate bottles, syringes, tubes, and pacifiers; about 100 oz of ready-made formula to use until my milk came in; and later that night, a Medela double electric breast pump was delivered to our door. The doctors all agreed I should pump exclusively so he could still get the best nutrition possible. Seemed easy and logical to me, at the time. I had planned on nursing him before I knew about the cleft, so why not?

The first few nights were of course brutal, one of them even more so, since one by one (including my mom who was here to help) we all caught some type of stomach bug. Somehow Little N was still cared for, despite our sickness, and about 5 days after he was born, my milk was finally coming in. It was a time-consuming process, as I first had to feed him, which took about 30-45 minutes because I was still learning the new method. Then I hoped he would sleep long enough for me to pump more milk for him. Forget about naps--those never happened because I was either feeding or pumping. But to me it was worth it--I had plenty of milk for him.

The doctors continued to call and check in on him, and when he was only 6 days old, the nearest craniofacial team wanted to see him. Routine for them. My husband was already back at work, older kids in school, mom back home, so it was just me. The drive was 30 minutes one way, and it was a morning appointment, so I assumed I'd only be there for about an hour. Now remember, I am not getting naps, or sleeping well, so partway into the drive, I realized, wow, I just might fall asleep! Luckily I didn't, but did come close several times.

I am no stranger to seeing specialists...J-babe has seen countless doctors over the years, but I was not prepared for the craniofacial team. Let me just educate you on who this teams consists of: 1) a clinical director/pediatrician, 2) plastic surgeon, 3) geneticist, 4) pediatric psychologist, 5) orthodontist, 6) social worker, 7) speech-language pathologist, 8) specialized nurse, 9) nutritionist, 10) ear, nose, throat (ENT), 11) developmental psychologist, 12) dentist. Twelve specialists, all working with Little N (and that's not even the whole team yet)! At each visit, they would schedule about 3 or 4 specialists to come see you, one after the other. So my "hour long" appointment turned into an entire school day affair. I didn't bring enough milk, no one had formula (why did they not have formula???), Little N was crying and hungry, so one of the nurses who was also a lactation specialist had to come show me how to hand express milk (which I have never done since, thankfully!) What most impressed upon me at that first visit was that I already had a whole team of very smart people aware of my Little N, ready and willing to help with any need that I had, giving me so much information that I was overwhelmed by it all! I didn't have to go searching for help...it was all right there. This greatly increased my level of confidence in caring for Little N. With that many people behind me, any question I had would be answered. And believe me, I called them a LOT during those early weeks.

The one thing that all the doctors were most concerned with was his weight gain. Little N was a big baby, born at 8 lb 15 oz. They wanted to see him continue to gain weight steadily. So each week I had to bring him into his local pedatrician for a weight check. Even after feeling like I'd gotten the hang of his feedings, and having plenty of milk, it took a month for him to regain his birthweight, whereas most babies regain it in 2 weeks. Soon this whole weight gain thing was all I could think about. I began taking it personally when I would bring him in, and see his weight percentile slowly slipping down, and down. But I really was doing everything I could! They told me to start supplementing with formula, so I had to put a little teaspoon in each bottle. Then they would tell me to make sure I wasn't spending too long feeding him, because he would actually burn calories if the feeding took longer than 30 minutes. Wonderful! So now I had to time each feeding, and then get a pumping in, and round and round the clock I went. When he was 6 weeks old, it finally hit me--I can pump and feed him at the same time! I found a way to do this, and I felt like I suddenly had all the time in the world! I even took a few naps.

The other thing they emphasized at those early visits was the high probability of Little N having any type of delay, whether it be gross motor, fine motor, or social. So I spent a lot of time watching and worrying about his development. But then he started smiling at just a month old. He rolled over for the first time at a month old, too. I could see in his eyes that he was all there, he was alert, and strong. I stopped worrying about that part and focused on the weight gain.

I think what I learned most in those early months is that this precious little baby was no doubt sent to our family for a reason. He brought us all together and increased the love in our family, despite how challenging it was. And it showed me that if I was faithful and prayerful, I would have the help I needed to care for him, whether it be through the medical team or my own instincts. Being his mom was going to be great.

Some thoughts on receiving a diagnosis

Recently I shared this quote on The Special Reds community page on Facebook:

 

I had some comment on how important the diagnosis is to be able to receive the right help for your child. This is true. I believe it now. But 8 1/2 years ago if you showed me this quote, I would feel even more lost, concerned, and hopeless about my little girl Julianna, who was then just 18 months old. This is when I began wondering, questioning, but all the while, supressing those thoughts that something just wasn't right about my child.

 

She was my first, and I was only 21 when she was born. The oldest grandchild on both sides. No health concerns from either side of the family that could help solve the puzzle. But even though inside I was questioning, on the outside, I wanted her to be just fine. I dismissed her behaviors. I overlooked her gross and fine motor delays. I didn't want anything to define her. I didn't want her to have a diagnosis at all. I just wanted her to be J-babe, and that's all.

 

I know that people who reached out to me in those early years only did it out of concern. I mentioned before that my neighbor in student housing knocked on my door and sat me down, telling me she thought my daughter had autism. Hearing those words brought a little clarity to my brain, but pain to my heart. They made me feel like all those thoughts I had inside weren't crazy, but at the same time, on the outside, I didn't want to believe it. Back then, I really didn't think any diagnosis would help me. Maybe that's because I was only thinking about me, and not my precious daughter. My daughter who needed to be understood, figured out, helped tremendously. But also my beautiful daughter whom I didn't want to be treated differently because she had a diagnosis.

 

I remember just before we left Utah, our pediatrician told me about a playgroup for kids who are delayed. She was 16 months old. As far as I wanted to believe at that point, she just had a delay in gross motor skills, because that's all the doctor would point out. So I went to this playgroup, and I wanted to leave as soon as I arrived. I saw children with serious needs, much more than my little girl's. Everyone there welcomed me and asked about my daughter. They included her in the activities. Looking back there was such a good feeling in that room, a feeling of support, love, and understanding. The only problem was, in my mind at the time, that I didn't belong. J-babe didn't belong there. She couldn't be grouped with those kids. Why did her pediatrician tell us to come? Did he think there was more to J-babe than just a delay in walking? So I didn't even stay for the entire meeting. I made up some excuse and left. This was my mentality in the beginning. I didn't want anything to make her different, to define her, to separate her from the norm.

 

I hadn't yet realized that she was different, but different is okay. That her needs, thought they didn't match the severity of those in the room, were still needs, challenges, that needed to be addressed and solved.

 

It took a few more years, but the moment I finally realized that it was okay for her to have a diagnosis was the moment I felt free again as a mom, free from all the questioning and concerns racing in my mind, and free of the pain in my heart, too. It was such a good feeling. That moment was when my mom called when J-babe was 3 years old and told me about something called Sensory Processing Disorder, something she heard about from a good friend in our old ward in church (you know who you are) because she was going through it with her own child. As soon as I read about it, I knew that's what my J-babe was struggling with. It was a starting point for me that led to meeting amazing therapists, teachers, and friends who have guided me all these years.

 

So, when you think about it, a diagnosis isn't all that bad. After all, other children get diagnosed with cancer, or the flu, or any other health problem, and in most cases, they can be cured. I guess the hard thing about a diagnosis when it deals with special needs is that the diagnosis stays, at least in this lifetime. It doesn't get "cured", in most cases (though some would like to believe that). But what the diagnosis does is give you the knowledge and tools to move forward, to get answers. And at times it does feel "limiting" when you don't know what the future holds. You have no idea how far your child will go with their diagnosis. All you can do is hope that what you are doing to help, now that you know what the problem is, will actually bring some change and growth. J-babe has been diagnosed with so many things over the years, and each one, while they have been a slap in the face, have helped me and others understand her better. And I wouldn't change that for anything.

Little N's First Year, Part 1: His Birth Story

Little N was born a day before J-babe's 9th birthday, and a few weeks after Big B's 6th birthday. Needless to say, it had been a while since I'd had a baby. Naturally that would make any mother nervous, or feel like she was starting all over again. For me this was true, but for an even bigger reason: my first two kids both have health issues that greatly affect (or affected) their life. I was two for two. Not very good odds. But all the ultrasounds showed everything looked great, except for one BIG surprise at 36 weeks: our "girl" actually wasn't a girl, it was a boy. So after having a girly baby shower, I found out we were having a boy, and there was no mistaking it by the ultrasound pictures. But HE looked great, and was measuring big, so we tried to change our mindset to "boy" in the last month of the pregnancy.

When he was born, he looked small to me, but when they put him on the scale, he was 8 lb 15 oz. He looked so perfect. But I still couldn't shake my fears, knowing that there was a chance something could be wrong, considering our history. And when he didn't come right back after the nurses took him to be suctioned, I just knew something wasn't right. Why were they keeping our baby for so long? I wanted to try nursing him, and hold him. So when we saw two nurses come into the room with very somber faces, I braced myself for the worst. They simply said that while they were suctioning him, they found a bilateral cleft palate in his mouth. And they continued explaining the condition, but I'm not sure how much I really heard, because all I heard in the beginning was "cleft palate." Wait, wasn't that when babies have the lips that need to be repaired? Those babies on those commercials where they are asking people to donate for their surgeries? I knew nothing about this birth defect. Our baby had a birth defect. How did this happen? What did I do wrong in my pregnancy? But above all, why were we given another child with some type of need? How was I going to do this? So many thoughts and fears ran through my mind.

The nurses reassured us by saying the cleft was only in his mouth, but it was pretty wide compared to others they'd seen, and amazingly, a baby born just the day before had one, too. So it's very common, the most common birth defect, in fact, but mostly for those that had the cleft lip/palate together. But not common for our family--it's never happened in our family, on both sides! How did it happen to us? They said he would need surgery to repair it. Surgery. On a baby. Our baby. I tried to push that thought aside for now. They told me he would not be able to nurse without very specialized care. I nursed both my older children for over a year and loved the experience. Because he can't nurse, they would help me use special bottles to feed him, and he might have trouble thriving and gaining weight. They said he might have issues with speech. Well, I've been there with J-babe. But they even said he might have other genetic abnormalities because of the cleft, and he would need to be seen by a team of specialists right away to determine his potential for development in all areas. A whole team of specialists. Within hours of his birth, we had learned some astonishing facts: our baby boy had a birth defect. Our baby cannot nurse. Our baby might have speech or development issues. Our baby would need a team of doctors.

Now to a first-time mom, or any mom at all, this would be so much to take in. But if I'm being completely honest, I never felt overwhelmed. Not once. I never felt scared, or worried, never lacked confidence in my ability to care for him, even in those first days in the hospital. I knew, without a doubt, that this very special baby had come to me at exactly the right time in my journey as a mom. This beautiful boy with bright red hair would be just fine. The strength I had gained up to that point from all the previous trials with my older kids was enough to get me through. My Father in Heaven knew I was up for the job, no matter how difficult or new it would be. In fact, his little challenge seemed easy compared to what I had been through. I was comforted immediately after speaking with the nurses, and I knew everything would be okay. I'm his mom...I can do this.

So we forged ahead...we met with a team of doctors just soon after we received the word from the nurses. They showed us the inside of his mouth. He had all his gum line, but from right behind the gums all the way back there was an opening about 1/8 in wide. He had no uvula. But it didn't matter to me...he was the most beautiful baby, inside and out. You couldn't see his imperfection on the outside at all.

We first tried nursing, just to see if it would even work. After trying every method and position, we all knew it would not work because of how wide his cleft was. So we had to come up with a way of feeding him. He wasn't ready to take the Mead Johnson bottle, with special nipples for cleft lip/palate babies. So as we sat brainstorming with a neonatologist, lactation specialists, and other nurses, I noticed that someone had placed a pacifier in his mouth, and he was actually keeping it in. He was somehow using enough suction to keep it in his mouth and soothe him. So I asked the team if we could get him to eat while sucking on the pacifier. One of the nurses suggested using a syringe connected to a small tube that was inserted through the hole on the pacifier and then into his mouth. Amazingly, it worked. He started swallowing formula as I slowly pushed it through the syringe. To all of us, it was a miracle. The first night they wanted to keep him in the nursery, but allowed me to come try feeding him with our new method. He continued to eat that night, and all the next day. The second night, they let us keep him in our room, and all night he would wake, and I would ready the syringe and pacifier. He was eating. I can do this.

The next day the doctors told me I had to make sure he kept eating consistently in order for him to come home that afternoon, but then one doctor remarked how well I was handling this new baby, and how well he was eating. He said many mothers faced with this challenge really struggle and end up staying in the hospital much longer until they can figure it out. So they were surprised how well everything was going with Little N. All I could say was that I just figured it out, that I was his mom, and even in those first days, I felt a strong bond with him and knew we would be fine.

The last hurdle to get through in the hospital was his hearing test. Something they told us from the beginning was that his hearing could be affected by the cleft. It turned out that his test ended up being done as we were getting ready to go home. Now usually a hearing test is pretty quick, so when an hour went by, I began to get nervous again. What if they've found something out? What if they're calling in more specialists right now? I know I can handle his feedings with the cleft now, but can I handle a hearing loss as well? So I called the nurses, and finally one came back with Little N, and said he passed the hearing test just fine--but he did cry too much during the test, and because of his cleft, she wanted to be extra thorough, so she had to start the test over multiple times. Huge relief for us. No hearing issues. In the first three days of his life, we learned how to feed him, and we learned that he could hear. We didn't have all the answers, but it was enough to go forward, trusting that things would be okay, for now. Little did I know how many doctor visits awaited me...