Hard and Soft Palate Repair

I was looking forward to the soft palate repair, which was scheduled to be when my baby was about 18 months old. I was anxious to get another surgery out of the way, and to not have to worry about another for several years (his hard palate wouldn't be until he was 4 years old). Well, life has a funny way of running things, and plans for his surgery changed.

The first trouble we ran into was an occasional cough my baby had for several weeks, and continued on until his surgery date was fast approaching. Unfortunately, with all of the difficulties associated with surgery and recovery, we were told he couldn't have his palate repaired until he'd been free of his cough for SIX ENTIRE WEEKS. So, basically, my baby would never get his surgery, I thought in despair. The cough finally eased up, and I scheduled the surgery for 4 weeks down the road, certain it would give my son plenty of time to recover. However, the cough returned. Frustrated, I took him to the doctor, where we discovered he had an ear infection. We got him on his medicine, and I called the surgeon's office again since surgery was once again around the corner. Luckily, everything was cleared and our appointment was kept.

Around this time, my son decided sucking on the rounded corner of a wire hanger was a good idea. He shocked me with a sudden outburst and I noticed his mouth was quickly filling with blood. On his lap was his prosthesis the hanger had somehow hooked beneath and yanked out. It was horrifying. My baby cried for a total of five minutes, then decided it really hadn't been that bad. I called Dr. Schmelzer in a panic, and was told he'd be just fine to wait for him to put it back in the next week. My baby's hard palate cleft was pretty huge, so I thought it was a totally unreasonable suggestion, until I discovered my baby could eat just fine without his prosthesis. He'd mastered the art of eating and drinking well enough that not having it attached really didn't affect what was coming out of his nose. I decided to put it off until his surgery a couple weeks later.

We awoke early on the morning of surgery, and drove the hour and half trip to Lone Peak Hospital. We checked in and waited for final approval while the nurse went over general health questions and did an evaluation of him. He was cleared and I breathed another sigh of relief. He was changed into a hospital gown, given a blanket and tiny teddy bear, and we waited for when Dr. Schmelzer would be ready to take him back.

I kissed my little boy goodbye when it was time to go, and prepared for the two hour wait. About halfway through the wait time, a nurse came out to give me his progress. Everything was going smoothly, but the prosthesis wasn't fitting in my son's mouth the way Dr. Schmelzer wanted it to. He decided to go on ahead and repair the hard palate while he was already there.

I have to say I was shocked. I knew his timeline was specific for a reason, because hard palate repairs too early can create some problems that require extra orthodontics and possible corrective surgeries down the road. I was mixed between relieved and upset. However, I have complete and total trust in my surgeon; he's always so careful and exact with what he does, so I trusted that all would be okay. Closing the hard palate added an extra hour to the surgery, but I was at peace. 

When the time finally came to go back and see my son, I was anxious to have him in my arms. I didn't know what to expect since his first surgery was so altering. I went up to his recovery room and waited for them to wheel him in in a crib. As soon as he saw me, he burst into tears, anxious to be held. I eagerly waited for them to untangle him from all his cords, and held him against my chest carefully while he calmed in my arms. He was struggling with his oxygen levels, and I was so grateful I'd waited for his cough to clear. We held the oxygen near him for an hour or so until his levels finally got up.

I felt so awful about how difficult this surgery's recovery was. He was absolutely, completely, totally miserable, despite all the meds he was on. He moaned while he was awake, and only slept if I held him in my arms. By the time night came, I desperately needed to lie down and get some rest, but every time I'd lay him in the crib, he'd wake up and scream for me. 

I'd been told that most kids had already started drinking or eating by now, but my baby was just too miserable to even try. I watched a LOT of television that day, and was really sore from being reclined with my large toddler in my arms. Around midnight, my sweet nurses took pity on me. They had a brilliant idea of rolling out his crib, and bringing in a bed for me to sleep in. They lifted the bars so he wouldn't fall out, and I finally got to stretch out and get some sleep. It was the best feeling ever. However, it only lasted about an hour.

Around 1:30 in the morning, my baby suddenly woke up. He'd decided he'd had enough sleep, and a strange burst of energy took over his little body. He was anxious to get moving around, much to my painfully tired chagrin. There was a playroom just outside of our room, so we walked over to it. My baby played on the little slide, threw some balls, and played with magnets for about an hour and a half. I was so exhausted, I thought I was going to die. Why did he want to play NOW? I wanted to be happy and relieved my little boy was back, but gosh darn it, I wanted to sleep!

I took him back to the room, and the nurses brought in some grape juice. He drained his cup! I was so excited. He wasn't ready to eat yet, but it was a fantastic start. The rest of the night was a haze. I'm sure I got some sleep, but certain it wasn't a whole lot. When the morning finally came, we tried again with food and drinks. He took a melted popcicle, and seemed to regress. He refused anything. The morning was passing us by, and I was terrified I'd be staying another day. I was so exhausted, and my son refused to nap in the bed. I didn't know how I was supposed to survive on such little sleep.

Lunch time was approaching, and I decided I needed to try his favorite food: macaroni and cheese. The nurses brought in some store-bought, microwaveable mac and cheese (how sweet was that???!!), and he devoured about half of it! I couldn't believe it. We tried some water, and he drank. He saw the can of grape juice, and took some juice, too. It was truly a miracle how quickly he'd turned the corner. 

Cutest little diaper bum!

With my past knowledge of recovery, even though my son was doing great, I didn't ease up on any of his medication. We kept right on top of it, and he stayed happy and energetic, even smiling and running around. We made good use of that playroom. I still wasn't certain if we were going to be spending a second night, but a nurse told us we were free to go after Dr. Schmelzer signed the discharge papers! I couldn't believe our luck. It was a great day.

Recovery continued to go smoothly at home, until night came, that is. I ended up sleeping with him on the living room floor or couch the next several nights. He refused to sleep in his own room, and if he did fall asleep, it only lasted a couple hours before he'd wake up screaming and crying. When he finally managed to sleep in his own bed again, it took a good couple of weeks before he felt safe again to sleep through the night. Even now, about a month and a half later, we're dealing with some late, late nights. 

During the three weeks of a soft-food diet only, my baby did really well. He definitely missed his Goldfish crackers, but settled well with plenty of applesauce and chocolate pudding. He ate tons of macaroni and we made it easily enough. 

Overall, this was by far the roughest recovery. His face didn't take such a beating as his lip repair surgery, but the affects of surgery were longer lasting. He had an audiology appointment, a doctor appointment, and a dentist appointment all within a few weeks of his surgery, and he definitely decided he was all doctored out. Hopefully, as time passes, he'll warm back up to them again. Overall, the surgery was great, and his mouth looks excellent. Some scar tissue was removed from his upper lip, and he's looking fantastic. 

Our next appointment with our surgeon will be a Team meeting in September, where we will once again meet with Dr. Schmelzer, his orthodontist, Dr. Jones, his audiologist, and a speech therapist.

So many appointments!

Having a new baby is hard work. Having a baby with a disability sometimes seems like an impossible job. For the first few months of my baby's life, we worried about how well he ate. And then we noticed he was favoring one side of his head. Great. I'd already had two babies who had torticollis. Babies in helmets, while heart-warmingly adorable, is extremely hard to deal with in the summer months. The last thing I wanted for my son was yet ANOTHER add-on, another thing to worry about, another thing to stay up at night and stress about. We went to physical therapy to get his head measured, and we got to work immediately. He had a significantly flat side, but if we were diligent with his therapy, we might avoid the helmet. So, every month, we worked on keeping a rice sock beneath him while he slept, while he played on his back, and made sure all of his toys were to his left. Some days he dealt with it well, and others, well, I was too exhausted to keep worrying about it, and let him be stubborn. Every time we returned to therapy, we re-measured, and the difference was going down. But one growth spurt got to him before I was fully committed, and the round side of his head grew much more than the flat side. His therapist said we had one more month to work with him before we needed to talk helmets. However, she also said he was due for another growth spurt. I needed to stay 100% on top of this, even if it meant waking him up to roll over onto his side to keep off the flat spot. I worked and worried...and finally, when the last appointment came, we saw that he was in the green! It was such an enormous relief...but it wasn't the end of our difficulties.

Eating was extremely difficult for him. Drinking from a bottle had never been a problem, but he couldn't figure out the spoon technique, and he had no desire to learn. He was drinking 7-8 ounces of milk every 3 hours, I could only pump 4 ounces, and was supplementing and pumping like crazy just to keep up. We started with oatmeal cereal. I made it extremely thin, and the first time he tried it, it seemed like he did okay, but every time after that, it drizzled down his chin. I tried feeding him orange vegetables to get him interested in eating again, like his pediatrician recommended, but failed. I broke and tried fruits, but to no avail. It was so frustrating, to say the least. Feeding my babies in their high chairs has always been such an exciting phase for me, but this was ridiculous. I dreaded feeding times, and honestly, grew resentful of his inability. I finally broke down and called to make an appointment with a feeding specialist. I guess he decided to rebel, because soon after the call, something clicked, and he FINALLY started eating. Most of it came out his nose--sometimes even becoming a game for him, but at least he was eating. I cancelled our appointment, and breathed easier...until I realized he needed to see the physical therapist AGAIN.

My baby has always hated tummy time. I figured he'd outgrow it, because he was going to be learning to crawl soon, but that wasn't in the cards for him. He rolled over only a handful of times by the time he was 7 months old, and still hated being on his stomach. So...we went back. He's finally learned how to roll over, and it's a good thing too, because he's now 9 months old. While having a mobile baby is not easy, having a stationary one who gets bored and upset is even harder. We're still working on getting him to transition from sitting to knees. I'm anxious for him to move around on his own so I can have a little bit more freedom.

Last month, he had surgery for tubes, and he's had a couple of appointments with his audiologist and ENT since then. Some days, it feels like I live in the hospital.

Update:
It's been about a month, and my baby still is not crawling. Two weeks ago, he learned to stand, although he is incapable of pulling himself up. We're still working on getting him to crawl, or to get himself into a sitting position from his tummy. We're making baby steps, but it's been slow enough that I finally broke down and called the Up-to-3 people for yet another set of appointments. I'm anxious to have this little guy learn to do things on his own, and our bi-monthly physical therapy appointments just aren't quite cutting it yet.

It's been exhausting and frustrating, but then he smiles at me with that precious little gummy smile, and it feels like I can go on for another day.

Lip Repair Surgery

About a month before my son's surgery, he figured out how to take the NAM out. Oh my word, it was soooo infuriating!!  Putting it in once a day was hard enough, but now, we were dealing with it 4-5 times a day. I finally figured out it was pointless putting the Fixodent on, because it was going to be ripped out anyway.
Putting the NAM back in just got a WHOLE lot easier, especially when I quit stressing about that and the prolabium tape. I finally put everything on right before bedtime, and it worked out so long as he fell asleep quickly. There were a few times where I woke up to find the NAM resting on his cheek, though. It freaked me out the first time I saw it, but thought it was the funniest thing after it kept happening.

Preparing for surgery was the hardest part for me. I hated the idea that the world thought this precious

little face needed "fixing." I resented my parents for being excited for the surgery I myself was dreading. I hated that they kept reminding me that it was going to look like he never had a cleft, and resented the fact that they never loved him the way I did. Up until the night before surgery, I felt extremely angry. All I wanted was for everyone to understand what was going to be taken away: the world's biggest, most beautiful smile.

There were tons of things that worried me about surgery day. I hated that my baby wouldn't be able to drink after midnight. What would I do when he woke up, screaming in hungry anger? My drive down to Primary Children's was about an hour and a half away. Would he scream the entire drive? Would I get caught in rush hour traffic and be late? How was I supposed to pump? Where would I eat? How did everything work out? I was so scared for all the little details, I forgot to be scared for the actual surgery...until the night before, I realized that my surgeon's life affected mine. What if he got into a fight with his wife the night before, and went to work angry? What if he was feeling sick, or had a bad drive to work? I was a mess.

Only through grace was my baby able to sleep through the night. I woke him up to eat at about 11:30 pm, and put him back to bed easily. I woke him up early for the big drive, and he slept on the ride down. There was no traffic, and when we arrived at the hospital, he was in a good mood. It was such an immense relief. We got checked in, and met with a nurse for his exam, then he got changed into the cutest little hospital gown. The longest wait was with meeting our surgeon and anesthesiologist. My husband and I took turns pacing the halls when he started getting fussy. He cheered right up, and eventually grew sleepy.  When Dr. Schmelzer finally came to discuss the procedure, our baby had peacefully fallen asleep.

After Dr. Schmelzer left, the anesthesiologist came a few minutes later. We signed a form, picked up our baby, and walked together down the hall. We reached the doors to surgery right as a patient was being rolled out in a bed. My husband and I nervously looked at each other as the bed was accidentally slammed into the door. The doctor reached out and took our son from us, and then as he left, I realized I forgot to give the cutest little cleftie one last kiss.  That was the last time I would see that smile.

My husband and I checked into the waiting room. We were told we would receive an update after one hour. Once we got settled, I found a room to FINALLY pump. I was grateful I had brought my own, because the one in the room was finicky and wouldn't work for me. I took my milk to the milk bank on the 2nd floor, then returned to the waiting room. I was so surprised to see that my new friend (whose own cleftie had surgery a few weeks earlier) had sent a stuffed animal to us in the waiting room!  It felt soo good knowing we were loved. The time passed quickly, and eventually, after about 2 hours, Dr. Schmelzer approached us. He told us surgery went well, and showed us pictures of our new boy!

I was grateful he did, because I never would have recognized him in a million years. He had a new nose, new mouth, and a completely different face. He stayed in recovery until he woke up, and then a nurse came and led us to him. I stared at him, trying to decide if it was actually my baby. I searched his tired eyes, puffy face, and even tried recognizing his hair. I had to go off trust that they led me to the right child. When I picked him up, he even smelled different. He smelled like blood, mixed with several different types of medical solutions. I only knew it was him because of an unseen bond every mother has with her child. As I held him, the nurse said how impressed she was with how calm he was. He was recovering really well so far, which brought me immense peace. I held him for several minutes before we took him up to his room.

Once he was situated, my husband and I left to go find the Ronald McDonald Family Room. There were huge refrigerators there, filled with food for the family of patients. There were computers,

showers down the hall, and rooms to nap in if we needed them. I breathed easily, knowing we were going to be taken care of. When we came back, there was a wonderful surprise waiting for us!  Dr. Jones, our amazing orthodontist, had sent a stuffed animal, along with a balloon! Again, I felt so loved, knowing that we had such a huge support group. It made this experience more bearable, knowing that so many people loved my son and were rooting for him.

I later learned how LUCKY we were to have our own room, because most patients had to share their rooms. I stopped feeling bad for myself, and tried enjoying our stay better. Our nurses were FANTASTIC, and Julie, the nurse pictured here, just LOVED him. It made me sooooo happy, knowing that they genuinely cared for his well-being. I felt comfortable leaving my room to go eat, because I knew they'd be watching him and caring for him if he needed anyone. Once, when I came back from eating, some sweet nurse thought of sitting him up in his bed for a change. He was soooo happy...and GAVE HIS FIRST SMILE!!!  To be honest, before surgery, I wasn't thrilled about his new smile, because it always looks forced and so small, and doesn't reach the eyes. But knowing the immense pain my child had just gone through (and probably was still feeling) made his new smile so much sweeter and wonderful. And I was wrong. It reached all the way up to his eyes. I was so, so happy!!!

The no-no's (or arm restraints) he had to wear didn't bother him at all. Several times, he slipped out of them. Eventually, one of the nurses just took him out of them, and he didn't even try touching his face. I never put them back on, because it was pointless anyway. After the first night, he seemed to be doing a little bit better, so we started weaning him off his oxycodon. He wasn't eating yet (still had his IV, though), but his eyes looked more alert. I was feeling good about maybe going home the next day. As the day wore on, he was more and more unhappy, and I realized he desperately needed his medication. We got it, and after several minutes, it kicked in. I realized I didn't want to risk it again, and told the nurses my plan to just keep him on it on a regular schedule until Saturday. Dr. Schmelzer's assistant, Dr. Wong, said it was perfectly fine to keep them on it for several days since their mouths have been through so much trauma, so I didn't feel bad about keeping up on his pain management.  After the THIRD night, I was getting antsy and grumpy. I asked Julie if I could unhook my son, and take him for a small walk down the halls. She one-upped me, and said I was welcome to take him around the HOSPITAL. She was wanting to turn down his IV so he could start feeling hungry, so everything got unhooked. It was such a liberating feeling! We were gone for a while, and when we came back, she kept him unhooked from everything. His little feet kept kicking the monitors off, which constantly sent the alarms off. With him being medicated, he was a lot more alert, and FINALLY started drinking! The feeding goal was equivalent to one ounce per hour, and it didn't take long before he succeeded. We were able to finally leave that afternoon.

Let's Talk Pumping

When I found out my baby probably wouldn't be able to nurse, I was really disappointed.  This was going to be my last baby, and I wanted to be able to enjoy one last time those sweet, quiet moments in a back room, gently rocking in my chair while my baby was latched on to me and quietly drinking.  Parenting a new little one is hard, a time where there is hardly any sleep and a whole lot of crying, but those quiet moments of providing nourishment for an eager little mouth brings a calm satisfaction that makes it all worth it.  Was I really going to be denied this?  There was still a sliver of hope since other moms of cleft babies had been able to nurse, but just in case, I was able to get a double electric breast pump.  I was told that if I went to Alpine Home Medical, my insurance would provide a free pump.  It was a pleasant surprise that would save me well over $100.  I went for the Rumble Tuff brand.

After I had delivered, I tried nursing, but it was fruitless.  His cleft was far too severe to even hope for a shadow of a suck.  I was going to be bound to a cold machine that would extract my milk for an entire year instead of the warm suckle of my baby's mouth.  I had planned on rooming in with my child, but ended up returning by myself since he was whisked away to the NICU.  It was lonely in there, and I was left alone with the pump.  For fifteen minutes, I was squeezed painfully, and when I finished, I anxiously looked to see how much colostrum I had produced.  Tears welled in my eyes when I saw the pathetic amount.

I determined to be diligent at pumping every 2-3 hours, but reality hit hard.  I was going about every 5 hours, between trying to find time to visit my baby, shower, eat, talk with different hospital staff, and make those phone calls to family and friends.  And each time I pumped, I got less and less.  I burst into tears on day two, when 15 minutes of pumping produced only 2-3 DROPS.  It felt absolutely, completely hopeless.  I told one of my nurses how pointless it felt, but she assured me that if I kept at it, my milk would eventually come in.  So there I was, sitting at my machine 6-8 times a day, and pumping practically nothing.  I hated it.  It wasn't fair.  My baby was downstairs in the NICU, eating formula that I wasn't producing, and not getting any of my colostrum.

By the time I came home, my milk had come in, but my son refused it.  I tried mixing it half and half with the formula he had been used to, and he ate that.  Talk about a slap in the face.  It took about two weeks before I was able to wean him completely off the formula, and get him on my own milk.  The good thing about my pump was that it was strong enough to only take 15 minutes.  Add on the fact that my baby was a champ at eating from his bottle (takes less than 10 minutes), I was actually saving time by pumping instead of nursing. With 6 kids, any time saved is a big bonus.

Again, with thirty-five kids--oops, I mean six--it was hard to stay consistent with pumping.  I still had to take kids to school, feed my toddler, make my OWN meals, feed the baby, change the toddler's diaper, change the baby's diaper, visit the bathroom MYSELF (if I'm LUCKY), shower (talk about low odds!), pick the kids up from school, fix dinner--eek!--clean out baby's blowouts, wash my OWN clothes, feed the cats, change their litter box, help kids with homework, carve out 3 hours once a week for orthodontist visits, change the NAM, comfort my screaming baby, comfort my needy toddler, pediatrician visits, parent teacher conferences,...and STILL try to find time to pump.  There are days I only manage to pump like 5 times.

Pumping is just HARD.  The first four months were excruciating.  My husband wasn't even ALLOWED to look at me "there" because I could feel his eyes, and it hurt.  My machine might be efficient, but it was painfully so.  Once I finally got used to the suction, it wasn't so bad, but that's just physically.  Emotionally, it's exhausting.  After running around, trying to stay on top of all of my regular duties, I'll catch myself thinking, "Hey!  I can finally bake some cookies, or read, or play the piano!  HEY!  I can SHOWER!!" and then my eyes rest on my pump gear, and I groan in annoyance, because, NO, I CAN'T DO ANYTHING until I pump.  But by the time I finish, the baby's awake again!  I'll sometimes plop onto the sofa for some down time, only to be reminded by the pump that is resting on the arm, and honestly, I get so mad sometimes, because it feels like my life is round-the-clock pumping.  It's all I ever do, I feel like.

And then there's the money.  Besides wanting to give my son the milk I can produce myself, let's be honest.  It's a lot about saving money.  But that's just not so.  I buy milk storage bags maybe twice a month.  Do you have any idea how much they cost?  It's about $24 for a case of 100, which comes to about $50 a month.  Formula costs about $35 for a huge canister, which babies go through in what, a week?  Anyway, so pumping doesn't actually save a whole lot.  Add in the fact that my inconsistent pumping has caused my milk supply to REALLY drop, so now I have to supplement with formula, which I'm now buying milk storage bags AND formula!  It's really just frustrating all around.

I guess the only reason I still pump is that I'm hoping it will create a bond with my son.  I want to know that I am still capable of providing for him, and even though it is hard, I'm going to keep doing it.  I pump because I love him, and it's the best I can give him.  I pump, because I can do hard things.

Getting the NAM

Part of my plastic surgeon's procedure for fixing a cleft lip and palate is through a device called a  NAM (pronounced how it looks).  It is a Nasoaveolar Molding device, or, in other words, a retainer.  When I first learned about this, I was horrified.  No way was I going to stick this awful looking monster into my baby's mouth, put tape all over his sweet little face, only to rip it out every single day!  These heartless doctors obviously didn't have children of their own.

Despite my unwillingness to try it, I grudgingly drove an hour away to meet with the orthodontist when my son was about 2 weeks old.  When I got there, I met the orthodontist, Dr. Jones, and was relieved that he was so warm and friendly.  He explained that once the NAM was put into my son's mouth, I needed to come back EVERY WEEK for it to be adjusted.  Again, I was filled with dread, and REALLY didn't want to commit to such a huge commute.  I thought of all the excuses I'd come up with to cancel as frequently as I could, because two hours of driving every single week was a little much.

During that first visit, Dr. Jones made a mouth mold using putty.  It took a couple of tries, but when it was perfect, we were good to go.  Surprisingly, it wasn't a traumatic experience.  In fact, my son SLEPT during that process.  We were told to come back the next week, and the NAM would be ready to go.

 The day before my baby received his NAM, his premaxilla was turned and going up into his right nostril.  I'm pretty sure he wasn't able to breathe out of it.  His hard and soft palate had an extremely wide cleft, and rather than seeing the roof of his mouth, there was a gaping hole where his nasal septum was.  The NAM was going to act as a temporary roof to his mouth, which was going to make feeding him a whole heck of a lot easier.

Getting the NAM put in totally freaked me out.  My son's mouth was stretched out as the device was placed in.  It was a two person job, the orthodontist said, and again, I was overwhelmed with stress.  My husband worked all day long.  What if it accidentally came out while he was gone?!  I couldn't do this!!  I watched as Dr. Jones attached rubber bands to the retention buttons (the things that look like little walrus tusks, my husband jokes), and pull them tightly against his cheeks.  I needed to take it out every day to clean, and then to reattach it all over again.  I was handed a bag full of the supplies I would need:  base tape, retention tape, Fixodent, rubber bands, little gauze pads...seriously?  They expected me to do this EVERY DAY?!  I just wanted to go home and cry.  It might have been because I was still totally pumped full of post-pregnancy hormones topped off with hardly any sleep, but either way, it was too much.  I couldn't do it.  Maybe I'd just keep the thing in until my next appointment next week.
It might have worked, too, except that later that night, and I mean late, something happened, and the NAM came out.  NOOOOOOOOOOOOOO!!!!!  My husband had fallen asleep (his shift would start in a couple of hours), and I didn't have the heart to wake him.  It looked like I was on my own.  I laid my son down on the floor, and attached the teeny, tiny rubber bands to the retention tape by squishing them and then sliding them down each tape strip.  I used Vaseline to remove the previous retention tape, which luckily came off easily.  After cleaning off the NAM, I put the Fixodent on it (not too much, Dr. Jones advised), carefully dried off the inside of his mouth, then slid the NAM into place.  Whew!  It actually wasn't nearly as bad as it had looked earlier that day.  In fact, it reminded me of the retainer I had in junior high.  I attached the rubber bands (which were still attached to the retention tape) onto the retention buttons, and I pulled until the rubber bands were stretched to twice their original side.  It was official.  I had just put the NAM in all by myself!  I breathed deeply in great relief, and wiped my sweaty hands dry on my pajama pants.  Maybe I could do this, after all.

It took about a day before my baby was used to wearing the NAM.  He wasn't terribly fussy, but enough so that I spent the majority of the day cuddling with him.  After that, I don't think he really noticed he was wearing it.  Feeding suddenly got a whole lot easier on my part.  And the cutest part?  He puts himself to sleep sucking on it, almost as if it's his binkie.

After only 2 weeks with the NAM, his premaxilla was already starting to move down and get a little more centered!

 Every week, Dr. Jones would shave off a little bit of the NAM, and add some stuff to other parts of it, which slowly allowed the premaxilla to shift.  When it was finally centered after about 2 months, nasal stents were added, along with prolabium tape.  The prolabium is that flap of skin over the premaxilla, and pulling it down with tape was going to assist with lengthening the columella, or the little column that separates the nostrils.  If we didn't lengthen it, then my son's nose would remain flat.  The nasal stents were used to push his nostrils up, which would add shape to his nose.  I came home totally depressed, because now, instead of looking like a loveable little walrus, he now distinctly looked like a pig.  I was NOT okay with this change.  I missed his adorable, flat nose.  I avoided posting any pictures of his new look on facebook.  It was just too much to deal with.

3 months after wearing the NAM

After three months of the NAM, I finally figured some things out that would have been helpful earlier.  One of the most obvious ones is that when changing it daily, if the retention tape is tight enough, I DO NOT have to replace it!  Secondly, the base tape doesn't need to be all fancy.  We used a blister bandage, and I just cut it down the center length-wise so each cheek had a long, slender piece.  I just rounded off the edges to make it look nice.  Third, by attaching the rubber bands ahead of time to the retention tape, I could save a lot of time.  And fourth, I learned that when my baby suddenly became extremely fussy and refused to eat, there was most likely a sore in his mouth from the NAM.  I was told to look in his mouth and see where the sore was (a white bump where the NAM was hitting it wrong), and then to line it up against the NAM.  By identifying which part was causing the pain, I was able to feel it with my finger, and if it was a little sharp, I was able to file it down a little with my nail file. Dr. Jones instructed me to keep it out for several hours to allow the sore to heal, but we only made it a couple of hours since my son won't eat unless his NAM is in.

Today, we are four months in with the NAM.  His surgery is scheduled for the beginning of next month.  Typically, unilateral babies have their first lip surgery around 3 months, and bilateral babies have it between 4-6 months.  He will be nearly 6 months old for his first surgery.  One year after that, his soft palate will be repaired.  The road with the NAM hasn't necessarily been hard, but it has required a TON of patience. From start to finish on days I replace all of his tapes, it takes about 20 minutes. It's been getting a little harder lately since my baby has started to roll, and yanks his NAM out of his mouth at least once a day.  As long as the tape is tight and at a good angle, I don't always have to take it out.  Sometimes, it just pushes back into place.  Taping the prolabium has been difficult with the added materials to the nasal stents, so I have to thread it through the NAM before taping it to the rubber bands. My baby hates it, and I feel awful, like I'm torturing him. It's definitely become a 2-person job some days.  Sometimes, he just looks like a ridiculous tape face, and I get so frustrated at all the work that goes in to making him ready for surgery.  But aside from all of the annoyances, I know it's worth it, because it will lessen the scarring, and I know it's going to make surgery that much easier on him.  

In the NICU

I'd read about a lot of moms whose cleft babies had been whisked away to the NICU following birth, because the hospitals were unprepared for them, uneducated, and uncomfortable having them room-in with them.  But I knew it wasn't the case with us, because my hospital was informed and well-educated with clefts.  However, soon after giving birth, they told me he had to go to the NICU, because not only was there meconium in the amniotic fluid, but I'd had a fever during labor, and they needed to monitor him for a possible infection.  I was devastated.  I wasn't prepared for that at all.  It was such a huge disappointment.  After all of those months of worrying, I was finally going to get my chance to really bond with my baby, and that was now getting taken away from me.

I got to hold him for a couple of hours before they took him away.  One of my fears was that he would be neglected in the NICU, because how could a baby with a deformity be loved by anyone but his own parents?  It was such an incredible relief to learn how very wrong I was.  The nurses there adored him.  They would carry him around, dote on him, and cuddle him when I wasn't there.

 One nurse, after bathing him, offered to put a bow into that incredible hair of his, laughing as she held up a dark blue one.  She finally decided she'd better not since she suspected my husband probably wouldn't love that idea.  I loved how they loved him.  Another nurse devoted a lot of time into learning how the bottle would work best.  She would practice, then show me so that I could feed him easily.  He always had the biggest burps, and she would proudly announce it to everyone who would come by for a visit.  Being there was such a positive experience.

I still wasn't totally comfortable with feeding him, and they decided they'd keep him there one more day for my sake.  I was really annoyed by that, but at the same time, grateful that they were anxious for me to feel comfortable.  We used the Johnson-Mead squeeze bottle with the pigeon nipple.  We would line the notch up with his nasal septum (since he had a cleft palate), and then we would squeeze the bottle gently, letting him swallow about five times, and then letting go so he could catch his breath.  This worked the best,

and allowed him to drink his bottle with ease.  He was such a great eater, and I am truly grateful for one less thing I had to worry about.

My mom came to meet him, even though I was hesitant since I was still hurt from her cold shoulder.  I wanted to keep him away from anyone who wouldn't love him, and I didn't feel ready to face another rejection to my child.  Before she saw his face, I told her that he had her same chin (ironically, a cleft chin).  As soon as she saw him (and that he shared her chin), she grabbed for him, and all the coldness melted away.  She was absolutely in love.  I understand now the fear and confusion and questions she had, but at the time, it was very difficult for me to deal with.  I mean, if there should be one person who's going to love your children besides you and your spouse, shouldn't your own mother be it?  Anyway, once she met him, all of her fears disappeared, and she was ready to completely love him and let him in.  I know that not all family members are able to brace the cleft, however.  I've heard of other grandparents not being either able to or willing to bond with their grandchildren until after the surgery, but again, I think it's just the fear of the unknown.  It's scary not knowing what to expect, and knowing that eventually, the face is going to change after surgery.  It doesn't make it any less painful to deal with, but there it is.  I guess understanding an outsider's point of view makes it easier to move on, because that's why we have these babies, to teach us a love and tolerance we might not have had otherwise.  All that's really and truly important from the moment after birth is that you love your baby with a deeper love you ever could have imagined, and that you're there to be their advocate in a world that may or may not be quite ready for them.

Birth

My due date was two weeks away, but I had an overwhelming urge to pack my hospital bag.  I shoved the thought away, because the rate I do laundry, I didn't want to have my clothes packed for two entire weeks and be out.  Instead, I chose to shower and shave my legs, and I even painted my nails.  You know, just in case something were to happen.  I even started sleeping on top of a towel with the hopes of my water breaking.

I woke up on October 12th, and got ready for another ultrasound and weekly OB appointment.  I had hoped to maybe catch a glimpse of my baby's face in this one, to prepare myself for what was to come, but he was stubborn, and was facing away.  There wasn't a shot of even getting a peek.  Everything was looking great, except that when the ultrasound tech measured my amniotic fluid, it wasn't where it was supposed to be.  He asked if my water had broken, but I hadn't noticed.  Would I have noticed it?  I had developed a cough over the past several days, and, well, any experienced mother knows that coughing can have a...dampening effect.  Could that have been it?  Could I have lost some fluid during one of my coughing spells?  I'd noticed that over the past few days, my pregnancy was suddenly very uncomfortable, and I had really limited my walking.  Luckily, I had listened to my body and had taken it easy.  My ultrasound tech warned me that my doctor was probably going to have me induced that day.

I met with her immediately after, and sure enough, she asked if I was ready, because I needed to give birth that day.  I couldn't believe it.  I wasn't ready!  Not emotionally, and of course, my bags weren't packed.  But at least I had showered.  I was given permission to go home and pack, and to immediately come back.  There was an incredible amount of chaos and stress as we tried figuring out the whole babysitting thing, as well as my husband's work situation.  It was the worst day to be induced, because my mother-in-law was out of town on a bus trip (she was the designated babysitter), and some of my kids were in school and would need to be picked up later that day.

Normally, lying in the hospital and waiting for contractions to speed up was thrilling, but I still hadn't fully come to terms with my baby's cleft.  I wasn't ready to meet him.  There was still fear and uncertainty, and I dreaded each contraction I suffered through.  A day that was supposed to be beautiful and exciting was dark and sad.

At last, the time to push had arrived.  I was terror-stricken.  I didn't want to push.  I really didn't.  But I didn't have a choice.  When I finally heard the cry of my newborn son, every ounce of fear and dread disappeared.  Love, excitement and peace washed over me, and I grabbed for my child.  I looked at his face, and fell in love with the sweetest, most beautiful baby.

I couldn't believe I had wasted so many months worrying and scared of what he would look like, because in that moment, he was the most perfect looking baby I had ever seen.  I couldn't believe just how much I loved him!  The roller coaster had finally come to a stop, and at last, I was on the top.