What was most difficult about transplant for me?

So the boys and I got together with a new friend the other day (yay!) and we were talking about the whole transplant experience, the challenges of having your baby in the NICU, and I got to thinking: what was most difficult for me about transplant? I'm not trying to complain here, but I find it therapeutic to get my thoughts out and share them, so here goes:

What has been most difficult for me in the past 21 months is the loneliness/isolation, and great responsibility. What do I mean? Despite lots (and lots and lots) of people praying for me, it feels like only a very few have truly understood what our life has been like. I was used to having a group of friends who could relate to where I was in life, whether that was being home with a small child, having a job that could at times drive me crazy, making a long commute every day, or dealing with relational challenges in my immediate and extended family. Since so few friends have been through transplant (and the BMT world is unlike anything I've known, EVEN with my rather extensive personal experience) it does feel lonely. I also noticed that it was easier for me to have another adult around all the time (like when Mom was living with me in Cincinnati) than to be at home on my own with two little ones all day. The difference that the conversation and company of another adult makes is incredible! I know we tried to limit visitors in the past, and our caution probably made lots of our friends nervous about coming near the boys. Now we just need to move forward out of our isolation, and it really is harder than I though it would be. I see germs everywhere I go. I do look forward to church every week though, and that helps a lot as I get used to germ exposure again.

The "great responsibility" to which I referred was for the bulk of Nathanael's medical care. From birth to three months he required no extra care, and was an "easy" baby who ate well, slept well, and tolerated just being around us while I played with Jamison and prepared for our temporary relocation. However, once treatment started he required LOTS of very specialized care. During our 5.5 week hospital stay the nurses took care of all of this for me, but once we went home I was giving IV meds twice a day, flushing his central line and hep-locking it, giving a dozen or so oral meds (through the NG tube at first, then later by mouth), and running milk through the feeding pump for 8-12 hours every night (oh, and pumping the milk for that purpose, in addition to trying to get him to feed by mouth so we could do less tube-feeding). We also spent two days a week in the outpatient unit, "day hospital" for other infusions, bloodwork, dressing and cap changes for his central lines, and doctor/nurse visits. It was pretty intense for several months. I'm really thankful that my mom was able to stay with us for the first 8 weeks (and my dad came down on weekends to be the designated "baby holder") and then I had another friend come in for a week, and finally Brad and Jamison came back.

Once we moved home quite a few things changed, and we had to readjust to a new system. All of a sudden I had to do much of the same medical care (minus the tube-feeding - yay!) while managing two little boys on my own AND trying to maintain my sanity. We had new nurses, new medical supplies to work with, and a new medical team at a different hospital whose protocols were different. And I don't normally do well with change. Since I felt I had been well-trained I insisted on doing more things myself, and asked others to assist me. It was good, but also stressful. Every week for 8 months or so I personally removed the dressings from his central lines, scrubbed his chest with chlorahexidine and alcohol, placed the BioPatches on his lines, and secured the catheters under new dressings. (I should say I could not have done this without the help of our home health nurses, who were very patient with me, helped me problem-solve through many situations and while using new supplies, and helped me learn a lot.) That ordeal used to take about 30 minutes, during which time everyone in the room had to wear a mask, and Nathanael normally screamed and wailed. Afterward I'd feel exhausted. I used to say that if I drank, THAT would be the perfect time for a beer. (Incidentally, I just don't like the taste of beer...except in other foods.) Compared to that, giving IV meds and flushing his lines was EASY.

The other thing that was stressful, depending on how Nathanael was feeling at a given time, was his oral medications. It used to take about an hour each morning and evening to get all twelve of them into him. When he got sick last fall I think he began to associate his stomach irritation with the meds, and began to fight them. At one point it was taking me THREE hours, both morning and night, to get his medications in. I really, seriously considered putting down a new NG tube just for medications, but the doctors talked me down several times, citing possible harm to him for little discernible benefit. (I did argue that a sane mother was not just a small benefit to my kids.) A few times I did go ahead and put one in, but he'd normally pull it out before I'd get to use it again. Once he felt better it began to take less time, and eventually, as he got older, I could distract him with videos (we love Veggie Tales!) and he would swallow whatever nasty-tasting meds I'd squirt into his mouth. We still use videos (we're now into Kipper the Dog) for taking vitamins and brushing teeth, but now we don't take any more medicines!!! :)

Okay, so this post has been a little depressing, so I have to include some pictures of my boys. I've been told many times this week how adorable they are...and I agree! :)