Happy 3rd Birthday Jamison!

Today is my big boy's third birthday! While I'm sad that I'm not there to celebrate with him, I'm hoping and planning to celebrate with him in a few weeks. We love him so much, and are so proud of him!

Here's a picture from February 2007...so precious!


The other picture is of Jamison with a cupcake after dinner tonight...so grown up! We sang and marched to the "Birthday Parade" song on his new (personalized) CD, and gave him a balloon through Skype, which delighted and amused him...until the balloon popped. Oh well...it was fun while it lasted!


Thanks to Colette for this last picture from his birthday party...and thanks to Chris & Lisa, Jeff & Ale, Jackie, Amy, and everyone else who organized his Elmo Birthday Party (and to Nana Bonnie for the idea, supplies, etc.)!

Two weeks! (by Bree)

One of my parents' favorite movies is "Money Pit", a silly 80's flick starring Tom Hanks and Shelly Long about a couple whose relationship barely survives their purchase and remodeling of a poorly-built but beautiful house. Whenever they ask the builders, who seem like shady guys, how long the project is going to take the answer is the same: "Two weeks!" Well, of course, the project drags on for months, and when it's done, it seems that so is their relationship. But the builder reminds them that no matter how much work they had to do on the house, the foundation was good, and that made everything else worthwhile, and in the end they get married, having worked through their conflicts.

So, why am I rambling about this? If I had written this post when the thought crossed my mind the other day, it would have been two weeks until Brad and Jamison's arrival here in Cincinnati, so the phrase, "Two weeks, two weeks..." keeps coming to mind. Of course, the lesson about a solid foundation is also encouraging, as we are reminded that Jesus is our foundation, and that He cannot be moved. At this point I hope that nothing sets back their departure plans, but barring any illnesses we should all be together in LESS than two weeks. YAY! That will bring to a close this chapter of our journey that will have lasted for 3 1/2 months.

I think that one thing that kept me going during those long days in November and early December was the hope that Brad and Jamison would visit us for Christmas, and then the hope that they would visit us in January, and then February. Even though the date of their visit became a moving target, it was good for me to have started this journey not knowing how long this separation would be. But now we're at less than two weeks, and we are all so excited to get back together! When I told Jamison on the phone the other day that he and Daddy were going to come to Ohio to stay with Nathanael and I, and we would all go home together, his response was something like, "Just like the zebra in Madagascar! He left home and his friends went to get him, and they all went home together!" I was sure that Brad or Joyce had made that connection for him when they'd watched the movie a week or two earlier, but after talking with them I realized that the analogy was all his own...I was so proud! He has also started asking for hugs via skype, so I know he's missing me too, and when we finally all see each other next Saturday there will be lots of hugs and plenty of tears.

Please continue to pray for us. Nathanael is doing really well, but we have not been able to decrease his tube-feedings as I had hoped we could, since the tapering of his steriods has adversely affected his appetite. Pray that he would eat well, that he would be well-hydrated, that he would nap and sleep well, and that he would continue to show no signs of Graft vs. Host disease. Pray also for his continued protection from viruses and bacteria, especially with the addition of his big brother to our household. (Kids can manage to find germs anywhere, and generally present the greatest risk to their immuno-compromised siblings.) We also want to be sure that we teach Jamison to wash his hands without creating an OCD-like pattern. We need to find some balance in all of this. :)

Visiting Friends (in the Hospital)

Well, Nathanael must have decided that he missed his friends in the BMT Unit at the hospital, because this week we spent a few days there. It started with him being a little more fussy than usual, then an unplanned visit to "day hospital", the outpatient unit for kids being treated on the Hematology/Oncology floor, and then a visit to the Emergency Department (ED, not ER anymore...) on Sunday, which culminated in our admission back to 5A North, the BMT (Blood/Marrow Transplant) Unit.

In addition to the symptoms we noticed, the doc who saw us Sunday appreciated that Nathanael's fontanelle, or soft spot, was bulging, so he ordered a head CT to rule out a brain bleed, and a spinal tap (now known as a lumbar puncture, or "LP" for short) to rule out meningitis. UGH! The CT went fine, as the little guy slept through it, but I was really scared of the LP. (As a side note, those of you who know me well know that I have a bit of a fear of nerve damage (previous experience with it has been frustrating), and had hoped to avoid epidural or spinal anesthesia for myself with both of my deliveries, and of course was unable to do so. My experience the first time was not positive, while the second time was not so bad.) HOWEVER, that's all to say that I was NOT in favor of someone sticking a needle into the spine of my baby, for fear of the damage that can occur with such procedures. I prayed silently for strength, and for the doctor to be skillful, and asked questions about the necessity of the test. After being convinced by the doctor and my husband that the test was necessary, I relaxed a bit. Nathanael handled it like a champ - he cried less than he did for the placement of his NJ (feeding) tube! The doctor took a few minutes to find a suitable place, then had an attending come in to get his assessment, and once the nurse and I held Nathanael still for the actual procedure, it was done in a matter of minutes. I was SO THANKFUL!

So the head CT and LP both came back negative, which is to say that he did not have a brain bleed or meningitis. They still decided to admit him, however, to treat him with IV antibiotics and to watch his symptoms more closely. We had noticed over the weekend that despite what we had been told about how his condition (including his behavior/personality) should have improved, he continued to be very fussy, to experience what felt to us like abdominal spasms or dry heaves, and that he was not at all interested in eating. When we called the BMT doctor on call Sunday morning he told us to come in so Nathanael could be seen, and at that time we put our overnight bag in the car (and I took a quick shower!) just in case.

So we ended up staying inpatient from Sunday night through Wednesday around 2:00pm. It wasn't too bad, as I had my mom around to bring food, to come up and watch Nathanael with me during the day, and it was less stressful than our previous experience, in most ways. It was however, tough to get sleep, difficult to have Nathanael's sleep interrupted by hospital routines, and all of a sudden I was not in control of his medications, which was simultaneously liberating and challenging. I could write more about all of this...but for the sake of time I'll cut to the chase: it's good to be back "home" in our apartment. It's lots of work to take care of a baby who needs so many medications, but I would MUCH rather keep him at home than stay in the hospital, and I am SO THANKFUL that the Lord has allowed us to get back home so quickly. Thank you for your prayers!

Oh, and as for the title of the post, it was great to see some of the friends we had made during our earlier extended stay, but we left them with a picture of him, and in the hopes that we'll just visit them sometime when we're in for the day, rather than during another inpatient stay. ;)

Jusi in case you're wonderimg, this picture was taken a home, with Nathanael's new NG tube in place...but that's another story...

The Perfect Storm

If I had written this a week ago I might have titled it "Smooth Sailing...", but this week a number of circumstances came together to create "the perfect storm" that rocked our little boat quite a bit.

We were sailing along - doing well enough that Nathanael's doctor thinks we may be able to go "home home" (to Texas) in early March instead of late March - until our little guy began to eat less and less. His labs showed that his kidney function was somewhat diminished, not enough to normally be of concern, but an issue for him because of the number of medications he still takes every day. The bottom line is that he needs adequate food (fluids) in order for his body to properly flush his kidneys. So when he went from 70+ minutes of nursing each day down to less than 40 minutes, we were obviously concerned.

So what's going on? We suspect that he's been teething for the past month, but that it has gotten much more intense in the last week. Teething often causes babies to nurse or eat less often, and for a normal infant, that's not a big deal...they'll self-regulate and eat as much as they need. However, as I mentioned above, Nathanael doesn't have the luxury of choosing not to eat and being okay. He needs to stay fully hydrated!

We also know that as the doctors wean him off the steroids he's been taking for the past 7 weeks or so his appetite will change. Steroids tend to cause an increase in appetite, so it makes sense that as he has lower levels of steroids in his system he will want to eat less often. My first thought in regards to that was that we should wean the steroids more slowly...but really, why would I want to subject my son to the effects of medications for a moment longer than the doctors deem necessary? Just because nursing is easier for me than tube-feeding? Certainly not.

Oh, and then we spent two days last week in the (outpatient) day hospital that were each 8 hours long...back to back! We normally have a day in between appointments, but the schedule this week was different. That interrupted his sleep, so he did not nap well at all on those days. While I might eat regardless of how tired I am, some people tend not to eat as much when they're tired...so that could have had an impact on his consumption this week.

So, in order to keep him hydrated we have increased the amount of milk he gets each night through his feeding tube, which in turn could cause him to be less interested in nursing. Like everything in the treatment regimen here, the goal is to find a balance between the two types of feeding. For me, this means nursing him as often as he will nurse, and also making/finding time to pump so I have 15 oz. of milk available for him each night. I'm so glad I have my mom here to help with cooking, cleaning, and baby-holding so I can get everything done! (Of course, I'm also thankful for my dad's help each weekend, and for my mother-in-law's help in Texas, as well as the many friends who continue to support us through this time.)

So, for those of you who read my recent Facebook post, I AM thankful for pumps: the feeding pump, the breast pump, and the medication pump, as despite their inconveniences (loud beeping, etc.) they all play a role in my son's recovery, and enable me to care for him at home.

Despite the situation I've described, Nathanael continues to do really well. His blood counts continue to improve, he shows no signs of Graft vs. Host disease, he is doing fantastic with regards to normal developmental milestones, and he is a happy little boy. The doctors expect him to have a fully functional immune system in another year or so, which is really exciting. Praise God as He continues to answer our prayers in ways we could not have imagined!

I've included a few pictures to show how much both of our little boys are growing up! I hope you enjoy them - even the ones that turn sideways, despite my best efforts to fix them.

(Oh, and you also might notice that Nathanael's cheeks are growing, and his eyebrows are getting darker. Both are temporary side effects of his medications.)

Busy Week (by Bree)

Happy New Year! Mom, Nathanael and I enjoyed a long weekend visit from my dad, and we've spent lots of time on Skype talking to Brad and Jamison. I'm including a few pictures taken with the webcam so you can see how much Jamison has grown up in the past two months. He even likes to play "doctor" with Elmo, and sometimes with Daddy!

Nathanael is doing well...we've been "home" for almost 3 weeks now! Medical care and cleaning keep us busy, and my newest challenge is dealing with some cold sores (mine). Sounds minor, but since they're caused by an underlying virus (probably one I've had since childhood) they could be very dangerous to Nathanael, so for over a week I've been wearing a mask when I hold him. It reminds me not to kiss him, and keeps me from touching my face and then touching him. Not fun, but necessary to keep him safe. Doctors tell us that viruses are very dangerous to him, as they're so difficult to treat.

This week will be busy, as we have appointments at the hospital three days instead of two. Next week we should go back to a schedule of Wednesdays and Fridays at the hospital, with visiting nurses coming to the apartment on Monday and Thursday mornings to draw blood for labs. Days at home are easier for us, and allow Nathanael to sleep whenever he needs to, rather than have his sleep interrupted, and that makes those days much nicer for everyone!

Thanks for your continued prayers! Also, thanks for the letters, emails and cards - we love to hear from you, and I'm trying to improve my communication with others...not making any official new year's resolutions though... ;)

Going "Home"! (by Bree)

We're out of the hospital! In fact, we've been "home" (at our rental place in Cincinnati) for almost a week now, and have been so busy taking care of Nathanael that I haven't taken time to update this page. Of course, I've also taken a little time to sleep, eat, and rest a little. :) It has been great to have a live-in support-system/housekeeper/cook/baby-holder. Since I was on my own with the little guy for 5 weeks in the hospital (don't get me wrong, the staff was great, and many of them helped me out by staying with Nathanael while I ate a meal in the kitchen just down the hall) I have enjoyed the change to a situation with a 2 to 1 caregiver to baby ratio!

Our days are busy: we give 2 medications by IV twice a day (and that process takes about 90 minutes total), four medications twice daily through his NJ (feeding) tube, three more meds three times daily through his NJ tube, and two meds orally (mouthwashes, given on little sponges in his mouth - wish I could catch those facial expressions on camera!). Oh, and we also give him about 24 oz of milk over 12 hours each night through his NJ tube (that means getting up once or twice overnight to add milk to the feeding bag). Did I mention that in between we need to wash syringes for his oral meds, clean pumping supplies and milk storage bottles, do laundry, dishes, cook, eat and sleep? No wonder I need a helper!

Of course we do find time each day to play with Nathanael, and he is a delightful little boy. He is starting to "talk" a little more, he loves to sit up (supported), grab toys, and watch things and people. When we go to the hospital (2-3 days/week) the nurses love to see him. He seems interested in everything around him, and in most ways is growing, healthy, and thriving. The doctors are very pleased with his progress.

Here are a few recent pictures: going home from the hospital, posing for a picture at home with Santa (Uncle Jeff), who came in from Columbus for the afternoon/evening to help us move. It was great to have help with all the stuff we had accumulated in our room. It was also really nice just to order carry-out Chinese for dinner - we ate while Nathanael slept in his car seat. My parents arrived later that night while the visiting nurse was here, and both of them spent the weekend with us. We decided that we didn't want my dad to leave, as we had dubbed him the best baby-soother around - every time he held Nathanael sleep came quickly...sometimes for both of them!

In other good news, Nathanael has remembered how to eat! He is now nursing half a dozen times a day, and doing well! Of course, we continue to feed him milk through his NJ tube, but have reduced his tube-feeding time from 24 hours two weeks ago, down to 16 hours last week, to 12 hours now...yea! Thanks for your prayers! :)

We still miss Brad and Jamison like crazy, and try to talk with them by phone or skype every day, but so far things are going fairly well. God's goodness has been so clearly demonstrated to us in many ways: gifts, letters, packages, prayers, phone calls, good lab reports, strength through tiring days, etc.

We do love to hear from you, and enjoy knowing what is going on in your lives as well. I am thankful that even from a distance we are able to share - even in some small way - this leg of the journey together. Just think of us when you hug your loved ones, and remember to be thankful for them even when they drive you crazy...it's good to have them close enough to hug! I look forward to having that problem again!

Our other good news is that we've had two birthdays and an engagement in our family this week! Joyce's birthday is today (Happy Birthday Nana Joyce!), and Jeff celebrated his birthday on Monday by asking Julie to marry him! We had all been waiting and wondering when this day would come, so we're very excited, and hope to be together to celebrate their wedding day sometime in the next year or so. :)

Recovering well...and planning to go home soon!

"Sleepy Santa" is the talk of the unit this afternoon. As word spread from one nurse to another that he looked so cute sleeping in here, many have stopped by to peek in and look. I love that he is able to make them smile. :) Isn't he precious?

The plan, for now, is to go home (well, back to our Cincinnati apartment) on Thursday! I didn't think I'd feel comfortable enough taking on his care to WANT to leave, but by now I feel I NEED to leave the hospital. Five weeks has been long enough! I also have to keep in mind that 97% of kids from this unit are readmitted at least temporarily. Most likely in the coming weeks or months he will develop a fever and need to come in for a few days. It could happen more than once. Some kids come back long term, but the ones whose parents I've met have different diagnoses than WAS. (In fact, I haven't met any other WAS parents at all.)

Please pray that Nathanael would nurse well. His weight went down two days in a row as we stopped tube feeds during the day in order for him to feel hungry so we could try to return to nursing. His weight came back up a little today, but we want to see it back up just a little more, and we'd like to see him eating better, before we give him so many hours off tube feeding again. He seems to remember how to nurse, I just think his little tummy doesn't have much room, as it has been empty for almost four weeks. The adjustment should take time. So we will go home with the feeding tube still in, and a special pump system to deliver mommy's milk at a rate of 2oz. per hour for 12-16 hours a day/night.

Please pray for a smooth transition out of the hospital. Jeff will be coming from Columbus to help us move, then my parents will come in for the weekend to help me, and when my dad goes back to work my mom will stay.

Would love to write more, but "Santa" just woke up... :)