Life went on. Make doctor's appointments. Schedule in-home nurse visits three days a week. Pump. Feed. Inject. Make contact with our cardiologist. Find a pediatrician. Schedule Sam's first well check with his new pediatrician. Call the emergency number again because Sam is throwing up- even though he's on both Zantac and Prilosec for reflux. Put his cute G Diapers on thinking that this is ONE thing that I planned that I can still do. I eventually learned that cloth diapers are not a great idea when a baby is on Lasix. Sam was still on diuretics to flush excess fluid from his system. I had no idea a baby could pee so much. After the first month of being home, I gave up on cloth diapering because Sam was soaking through them every hour. It was interfering with his napping, his nighttime sleeping, and eliminating any possibility of my getting any sleep.
We had something scheduled virtually every day and it all revolved around Sam. Molly was a champion sister. Whenever I had a free moment, not pumping or feeding or doing laundry (which I did in order to keep from being buried alive) or driving to one of Sam's numerous appointments, I tried to spend it with Molly. I strove to make those free moments as close to "normal" as I could- close to the normal that we used to enjoy on a regular basis.
She took the above photo as part of a photo shoot that she was doing with her dolls. She was making a movie on our laptop about a day in the life of Jon and Barbara, her Bitty Twins. Barbara is just below my right elbow. Hi, Barbara!
All the expectations I had cherished while I was pregnant with Sam: I had to let them go, one by one. Even the things that I hadn't consciously thought about, things I had taken for granted while I anticipated being a mother of two: one by one, they fell away. The baby wrap didn't work well for Sam. I was afraid it would squish his incision and it was difficult to use with his feeding tube taped to his face. The Ergo was just a joke. I gave it my best effort, but it didn't please him. One of my big concerns was that Sam continued to vomit with nearly every feeding and his vomit contained large chunks of undigested formula. I took photos of it, I documented it in my notebook, (I quickly realized after we brought Sam home that my brain couldn't handle keeping track of his meds, feedings, wet and dirty diapers and my pumping schedule- I needed a written log.) I even took samples of it to the doctor. They were disturbed, but there were no solutions except to wait until I could safely wean him from formula onto the breastmilk. We'd only been home about two weeks when Sam sneezed and his tube shot out his nose. It was completely caked with and encased in coagulated formula. I was done. No more tube for Sam. We would have to make it work with a bottle. I started slowly integrating the breastmilk while decreasing the formula.
We went once every two weeks to have Sam's blood drawn to check his heparin levels. We did not have one successful blood draw after we left Duke. Not one. Every single experience was an epic fail and caused Sam a lot of trauma. When they did get enough blood, his heparin levels never measured correctly. They were always crazy high and the doctors couldn't make sense of it. So after we'd been home about two months, we went back to Duke to keep an appointment with a hematologist to determine what our plan of action would be. The doctor was extremely pleased with Sam's progress and decided to take Sam off the heparin even though we couldn't get an accurate reading of his levels. No more injections!
We had a respite after we initially came home from Duke, but I didn't know that it was a respite. Things were hard, but I didn't know that they would get harder. (Harder? Are you kidding me? Yes, things can get harder.) I learned to travel with a feeding pump and a breastpump. I learned that burp cloths are ridiculous and that receiving blankets do a much better job with you have a baby with severe reflux. Amazing how a tiny baby can throw up so MUCH. My husband had resumed his regular obligations as work. He worked a 16 hour day and had one weekend off a month. He's in the military. And his assignment required him to work that schedule for about two years.
One big thing that was affected by Sam's birth was Molly's schooling. Prior to having Sam, I had utilized an a la carte method in selecting her curriculum. That's what I watched my mom do growing up: pick the best of the best. Spend months, days and hours researching different publishers and programs and lesson plans. The main issue with this method was that the curriculum I ended up with demanded a lot of hands on time from me as a teacher. Don't misunderstand- I LOVE hands on time with my kids. But I didn't have a lot of time to spare and I hated spending all of my spare time in "school mode." Molly needed me to spend time with her- just With her- not teaching or "doing school," but just Being Us. When Sam was born (flash bang) we were suddenly and unexpectedly apart for a month and when we finally got home, things were not what any of us had anticipated. All new babies are time consuming. But Sam was definitely different and very needy. At the risk of being judged (go ahead, I don't mind) I'm going to share my super secret ultra special solution to this problem of school vs loving quality time. It is this: we took some time off from school. Yup. And it didn't hurt her one bit. After we'd been home for a little while, I found a different curriculum. We started using Switched on Schoolhouse by Alpha and Omega, a computer based curriculum. Once Molly learned how to navigate it, she could get her school done independantly, even if I was stuck in Sam's room cleaning up vomit or battling him over a bottle. Molly's education didn't suffer for her time off. She's back on track and right on schedule at present time. But taking that time off was hugely beneficial to our relationship. It allowed me to invest in my daughter.
We were making progress. Sam was growing and putting on weight. We had fewer doctor's appointments. I was able to discontinue the nursing service three times a week. The nursing service was something that didn't prove to be helpful and I had grown to dread the visits. Our nurse was very nice, but she didn't seem to completely understand our situation and I really felt more like I was being investigated by social services. She had a lot of questions about the bruising on Sam's legs and always redocumented it every time she visited. The bruising was from the injections, but she seemed suspicious of that at first. Around the first of December, Sam tested positive for MRSA in his nose. So we had to add an antibiotic and nasal swab to his daily list of medications. At that time he was receiving: aspirin, zantac, lasixs, clindomycin and a nose swab of antibiotic ointment. We had to discontinue the prilosec because it caused severe stomach upset. He continued to vomit, though. I could hear his stomach rumble everytime he drank. For a short time, even with the vomiting, he ate well. He consistently ate a significant amount on a daily basis and the amount that he threw up wasn't hurting his totals too much. Unfortunately, that didn't last long.
We went once every two weeks to have Sam's blood drawn to check his heparin levels. We did not have one successful blood draw after we left Duke. Not one. Every single experience was an epic fail and caused Sam a lot of trauma. When they did get enough blood, his heparin levels never measured correctly. They were always crazy high and the doctors couldn't make sense of it. So after we'd been home about two months, we went back to Duke to keep an appointment with a hematologist to determine what our plan of action would be. The doctor was extremely pleased with Sam's progress and decided to take Sam off the heparin even though we couldn't get an accurate reading of his levels. No more injections!
We had a respite after we initially came home from Duke, but I didn't know that it was a respite. Things were hard, but I didn't know that they would get harder. (Harder? Are you kidding me? Yes, things can get harder.) I learned to travel with a feeding pump and a breastpump. I learned that burp cloths are ridiculous and that receiving blankets do a much better job with you have a baby with severe reflux. Amazing how a tiny baby can throw up so MUCH. My husband had resumed his regular obligations as work. He worked a 16 hour day and had one weekend off a month. He's in the military. And his assignment required him to work that schedule for about two years.
One big thing that was affected by Sam's birth was Molly's schooling. Prior to having Sam, I had utilized an a la carte method in selecting her curriculum. That's what I watched my mom do growing up: pick the best of the best. Spend months, days and hours researching different publishers and programs and lesson plans. The main issue with this method was that the curriculum I ended up with demanded a lot of hands on time from me as a teacher. Don't misunderstand- I LOVE hands on time with my kids. But I didn't have a lot of time to spare and I hated spending all of my spare time in "school mode." Molly needed me to spend time with her- just With her- not teaching or "doing school," but just Being Us. When Sam was born (flash bang) we were suddenly and unexpectedly apart for a month and when we finally got home, things were not what any of us had anticipated. All new babies are time consuming. But Sam was definitely different and very needy. At the risk of being judged (go ahead, I don't mind) I'm going to share my super secret ultra special solution to this problem of school vs loving quality time. It is this: we took some time off from school. Yup. And it didn't hurt her one bit. After we'd been home for a little while, I found a different curriculum. We started using Switched on Schoolhouse by Alpha and Omega, a computer based curriculum. Once Molly learned how to navigate it, she could get her school done independantly, even if I was stuck in Sam's room cleaning up vomit or battling him over a bottle. Molly's education didn't suffer for her time off. She's back on track and right on schedule at present time. But taking that time off was hugely beneficial to our relationship. It allowed me to invest in my daughter.
We were making progress. Sam was growing and putting on weight. We had fewer doctor's appointments. I was able to discontinue the nursing service three times a week. The nursing service was something that didn't prove to be helpful and I had grown to dread the visits. Our nurse was very nice, but she didn't seem to completely understand our situation and I really felt more like I was being investigated by social services. She had a lot of questions about the bruising on Sam's legs and always redocumented it every time she visited. The bruising was from the injections, but she seemed suspicious of that at first. Around the first of December, Sam tested positive for MRSA in his nose. So we had to add an antibiotic and nasal swab to his daily list of medications. At that time he was receiving: aspirin, zantac, lasixs, clindomycin and a nose swab of antibiotic ointment. We had to discontinue the prilosec because it caused severe stomach upset. He continued to vomit, though. I could hear his stomach rumble everytime he drank. For a short time, even with the vomiting, he ate well. He consistently ate a significant amount on a daily basis and the amount that he threw up wasn't hurting his totals too much. Unfortunately, that didn't last long.
I read your words -- so many surprises (unexpected expectations), obligations, requirements of you and your whole family (Molly sounds amazing!), disappointments, exhaustion, living at the end of your rope, loosing it, falling apart, expressing normal human emotions (anger, tears...), judgement by others -- but between the lines I see such wisdom! Really, the decisions you made are filled with so much care and thought for your family and yourself. It's really inspiring. I am in awe that you continued to pump and that you integrated breast milk with his formula. After struggles like this (and often much less than this), so many moms assume that breast milk just won't work and won't make a difference. Your schooling choice for Molly was perfect! I think it shows such insight when moms realize that "less is more" for their family and make the decision to do less despite what others think or our culture that constantly tells us "more is more".
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