Every day, Mike went to work and I would spend a most of the day at the hospital. Then I would come home, we would have dinner and go back to the hospital so he could have time with his daughter. It was exhausting. The hardest part for me was leaving Emily every day. In the afternoons, I would always leave when she was sleeping. At night that wasn’t always easy. She had some pretty rough nights and I could not bring myself to leave if she was crying. Even if I wasn’t able to calm her, I felt I had to try. I didn’t want to leave my crying baby in the care of someone else. So either I stayed until she was calm or Mike would drag me away because it was getting so late. On those nights, I would cry just about all the way home. I wanted to bring my baby girl home so bad (and the hormones were still raging at that point too).
One other thing that I forgot to mention was our frustration with the hospital staff. Emily had a different nurse just about every day, so she had no consistency in her care. We talked to nursing managers about this and towards the end things were better during the day, but the night nurses still varied quite a bit. It was frustrating to have to start over with someone new just about every day. They all had their own way of doing things and rarely listened to us (we aren't professionals so what do we know?). I bring this up now, because it relates to the next part of our story: Emily’s first few months at home.
When Emily was in the NICU, we were told that she had to get a g-tube or stay in the NICU until she could learn to take all of her nutrition through a bottle. She was barely drinking 2 bottles a day at that point, so we didn’t really see it as a choice. She was going to get a g-tube and we were going home. We figured that she would do well with bottle feeding once she was at home and maybe the tube could be removed later on (looking back now, I can see how naïve we were). The whole time Emily was in the NICU, she had issues with her feedings in one way or another. They tried a couple of different formulas including higher calorie concoctions. Those concoctions did not agree with her and one time even resulted in explosive diarrhea (and I am not exaggerating about the explosive part – that was one time when I was glad to be in the NICU so someone else could clean the wall, the couch, the floor, the bed, etc.).
Whenever we brought up the feeding issues with the staff, we were usually dismissed. She tended to do better when they used a feeding pump because the food went into her stomach at a slower rate. We kept telling the nurses this, but they insisted on feeding her without the pump. We were told that she should not be fed on a pump because we could never have a pump at home. So we should get used to doing bolus feeds (holding the syringe up so gravity would take over or using a plunger to push the formula into her stomach). They said that we may need to do smaller meals more often, but we should get used to doing it that way. Her feeding always took quite a while so we pictured ourselves spending all day every day feeding her (that didn't sound like a very exciting life!). They also had us panicked about Emily gaining weight. She could not go home until she had put on a certain amount of weight.
When we finally went home, Emily had a very rough time with feedings for the first few months. She would scream and cry through just about every feeding. It would take about 45 minutes to an hour to feed her and she would usually cry for about an hour afterwards. It was really wearing on all of us! One other issue she had was retching. When she had her g-tube surgery, she also had a Nissen (where they wrap the stomach around the esophagus to keep her from refluxing). This meant that she could not burp and it caused her to gag and retch all the time. Feeding was becoming a very negative experience for her, so Emily had absolutely no interest in taking a bottle. We couldn’t even put a pacifier in her mouth – she would gag and cry.
We had lots of doctor appointments in the beginning and I would tell every doctor about the feeding issues. Most of them offered no help. I even remember the surgeon telling me he wanted Emily to double her birth weight by 3 months (thus adding to the stress we were already feeling!). Our pediatrician did help us to find the right formula for Emily. That helped, but the person that finally solved our feeding issues was the nutritionist through First Steps. Her first appointment was during Emily’s feeding time so she was able to see firsthand what we were dealing with. From that moment on, she was determined to help us. It was such a relief to feel like someone was finally listening! She helped us to get a feeding pump. That allowed us to give Emily the bulk of her formula at night and smaller bolus feedings throughout the day. It was amazing what a difference that made for Emily! When we came home from the NICU, we were giving her 130 mls (more than 4 oz.) of formula at a time per the doctor's instructions. She was not doing well with that kind of volume going into her tiny little stomach. Our nutritionist also helped us to get over the frantic feeling about Emily’s weight. She told us that her first goal was to get the feedings under control even if that meant Emily’s weight dropped off a bit at first. Her laid back attitude really helped us to relax.
The first few months of Emily’s life were very stressful. There was a lot to deal with and get a handle on:
- Her diagnosis and how that would affect her life and ours
- Sleep Deprivation that comes with having a newborn
- Meeting more doctors and therapists than we ever thought we would in our lifetime
- Frustration of feeling like no one was listening to us
- Feeling totally inept because we could not even feed our child without her screaming
- Raging hormones (for me at least, not so much for Mike)
Looking back over that time, I am amazed at how far we have come. Emily very rarely has pain when we are feeding her now (I cannot even remember the last time we had an issue). As a matter of fact, she was on Prevacid for reflux for a while, but we stopped giving that to her months ago and she has not had any problems. Her tube feedings usually take about 10 or 15 minutes, at the most. She now takes a feeding of 4 oz with no problem (we have had to work our way back up to that number as she grew).
She does eat by mouth now. She still doesn’t eat all that she needs by mouth, but because she has the g-tube we don’t stress about it. We know she is getting what she needs and she will get the hang of eating and drinking in her own time. I remember being so concerned that she didn’t have the opportunity to figure out what flavors she liked and worrying about her turning one and not being able to eat cake. Now I am not even sure why that mattered to me, but it did at the time. Well, she loves apples, pears, bananas, chicken and sweet potatoes, chicken noodle dinner, vegetable stew, and frosting and Cool Whip. She does not like yogurt or raspberries (and probably a few other things I just cannot think of right now). It makes me laugh to think that we were so panicked about her gaining weight back then and now we wish her weight would taper off a little so we can carry her without hurting ourselves.
My how times have changed! God is so good! We know that Emily has challenges ahead of her, and there will be no shortage of things to stress about in the years to come. We also know that God will give us the wisdom we need to make the right choices for her. He created her and knows exactly what she needs and He will provide it in His timing.
Here are a few old shots of Emily eating. It isn't always pretty, but she can get the job done!