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.
Sunday, January 26, 2014
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