I sent out this update just hours after the Part 1 update. This update covers issues from the middle of January until the 23rd.
I had the Part 1 Update completed a couple of weeks ago, but kept waiting to send it until I had time to get some pictures together. I finally sent it out because so many things have changed in just the past couple of days that we knew that we needed to send out another update right away. I decided to call this Part 2 since it is a continuation of previous problems.
As I mentioned in Part 1, Julie threw up about 2-3 weeks ago. While it’s normal for a baby to throw up from time to time when they are sick, Julie should not be able to throw up at all because of the nissen procedure done to her stomach last June. With only one isolated event, I didn’t think it reasonable to panic. After all, Julie will eventually grow out of the nissen although no one seems to be able to tell us when that will happen.
Since that first incident, Julie has continued to throw up before, during and after feedings. I’m not sure how to describe what is happening without getting gross, so let’s just say it isn’t more than a couple ounces at a time and isn’t the typical consistency one would expect. It is clearly happening more frequently and the bouts can last a long time. Here’s an example:
Sunday, the 22nd, Julie had a really bad fit after her midday feeding. She was sleeping in her bouncer and suddenly woke up crying. Within a few seconds her mouth was full and we were scrambling to release the straps of the bouncer and lay her on her side so she could breathe. After the initial bout, Julie was still miserable, so I got her venting tubes while Sarah cleaned and comforted her. It took about an hour before Julie was feeling better. My back was killing me while I sat uncomfortably on the floor holding the venting tube. Sarah barely had time to take a short potty break because we didn’t know when Julie would need help from both of us. It’s all team work.
Venting is an interesting process – more art than science – that requires us to position the stiff tubing exactly in 3-dimensional space to minimize pulling the mickey button. The nurses in the NICU taught me how to vent her (Sarah had other things on her mind at the time). It was pretty straight-forward in the hospital since their equipment is better. It’s quite a trick at home with a scared, exhausted and flailing child on the other end of the mickey button.
Sarah started today at 4 am with a feeding left over from Sunday. We have had three rounds with Julie – one was a small spit up and two were pretty heavy. Sarah and I have been alternating naps, watching Julie, cleaning up afterwards while, all the time, I’ve been trying to keep up with work. It’s been a full day!
We also went to see the pediatrician today, but he couldn’t find the problem and recommended we contact our GI nurse practitioner. She recommended we take Julie in for an upper GI on Wednesday to examine the state of the nissen and determine if there is any other problem.
In the meantime, we are going back to 5 feedings a day and slowing the pump down to 1 hour per feeding. We’re going to vent Julie immediately after feeding is over for at least 30 minutes to make it impossible for her to throw up. This means that Julie will be confined to her bouncer for at least 90 minutes and we will have only a couple hours between feedings. With all the excitement of the day we’re running behind again on feedings today, so it’s going to be a long night.
If we can manage this situation then maybe we can get back to feeding therapy. Last Thursday, we had a good visit with the oncologist. If Julie’s blood work passes, then we won’t have to see him again – ever! We should know in a day or so. On the way back from the oncologist, we stopped for a milk shake. Sarah offered Julie some of her strawberry shake thinking that she would refuse it as she has refused pretty much everything else we’ve tried. Oh, were we in for a shock! Julie couldn’t get enough of the shake. Sarah spent an hour feeding Julie by mouth. We haven’t seen Julie this excited to eat/drink for months.
After we had made a major breakthrough with the strawberry shake, we were hit with these other problems. Sarah and I have had so many of these reversals over the past year that they don’t seem to throw us anymore. We do what we need to do and fall back on what we learned while Julie was in the NICU. Yet, sometimes we worry that folks won’t understand why we can’t make commitments and we even go back on promises that we make.
I had Sarah take back a promise last week because I didn’t think she would have the time/energy. We agreed to this procedure when we got married based on a passage from the Bible (Numbers 30:6-8). She agreed to honor my wishes if my gut told me something was wrong. I agreed to take the blame for “making her” do it. We both agreed to limit my veto to the day I hear about something (like the example in the Bible says). And, I’ve never refused Sarah the same honor to veto my commitments. Unfortunately, our agreement has irritated some of Sarah’s girlfriends (especially the “liberated” ones) into thinking that I’m mean, cruel, heartless, etc. and that Sarah is a frail, weak, ignorant wife and mother. If they only knew the truth! Given what’s happened this weekend, we’re both relieved how the incident from last week worked out, although there are some hurt feelings out there.
We would love to say that Julie is healed and well and doing great, but she still has some problems that we didn’t anticipate. For example, Julie was taking a bottle fairly well during the summer, but completely shutdown by fall. So, instead of losing the mickey button by Christmas like we had been telling people for months, she got a new one a couple days before Christmas. The folks in the NICU warned us about the potential problems, so we were prepared and have managed to take most everything in stride, but we don’t always get to explain everything to friends and family.
Please continue to pray for us and for Julie as we go through this next round of issues.
Andy and Sarah Horn
Julie’s nausea problems continued to get worse and worse and we didn’t understand why. She had been doing well enough for us to change to 4 feedings a day (about 4 hours apart). Julie had been sleeping through the night since she came home, so we took advantage of this extended time as much as we could. Still, her waking hours meant a lot of work. The difference between 4 and 5 feedings meant about 2 hours saved. Instead of saving those hours, we lost more time by having to vent Julie after feeding.
I mentioned the impact on my work in the update. I had a couple confrontations with my boss during the fall of 2011 – first time I had ever had such problems in my career and first problems with a boss in over a decade. The problems with Julie certainly had an impact, but work presented it’s own problems. My boss put me into the impossible position of trying to convince other groups to take over the work of my group while my group moved on to more “interesting” work. Naturally, everyone made every excuse known to mankind to avoid taking on more responsibility which left me holding the bag. Instead of giving advice, my boss constantly berated me (increasingly in public) for failing to achieve closure. Whenever, I tried to solicit management support to force the other groups to take responsibility, my boss would claim the task too menial for his time and berate me publicly some more.
I only barely got by with school during the fall semester. I had to drive down to DTS for a meeting with my spiritual formation group on Tuesday nights and had other classes on-line. My greatest challenge came from my 1st semester Greek class. I couldn’t memorize the vocabulary with all the distractions at home so I struggled daily. I decided to cut back to just one class – 2nd semester of Greek – to allow me to focus. Unfortunately, Julie’s problems continued to escalate as did my problems at work.
It grew harder and harder to explain these problems to others, so we found ourselves having to withdraw more and more from outside activities and extra commitments. We really wanted some distraction (Sarah especially needed some time away), but we just didn’t have the time or energy. Unfortunately, some of our friends got their feelings hurt as we vacillated between enthusiasm in their activities and withdrawal into our own problems. We couldn’t make any plans because we didn’t know what emergency would come up and how much extra time might be required.