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.
Wednesday, March 8, 2017
Wednesday, March 1, 2017
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.
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.
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.
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.
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.
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| After only 2 weeks with the NAM, his premaxilla was already starting to move down and get a little more centered! |
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| 3 months after wearing the NAM |
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.
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