Please Pray for our Boy

I am sending out an urgent request for everyone who still checks this blog to PLEASE PRAY FOR HENRY! He was admitted to the hospital 9 days ago for symptoms of dehydration due to vomiting. Fever and a rash persisted and worsened over the course of a week. By day six, Henry was fighting for his life. He is in the PICU and continues to fight. There is a raging infection in his lungs and his blood, in addition to a staph infection in his trachea. Henry is only 9 months old. He is the joy of our lives. His brothers adore him. We are devastated at the thought of losing our precious boy. PLEASE PRAY! Last night, Henry showed some small improvements. We are clinging to hope that this might mean that he is on the road to recovery, but the doctors are being very cautious and have reminded us often that he is not out of the woods.

I will try to update here if people seem to be reading the blog.

The photo above was taken about 24 hours before we ended up in the ER.

New Mama

Please, please go read this beautifully written (and photographed) blog about a new Mom of a child with Down Syndrome:

http://enjoyingthesmallthings.blogspot.com/2010/01/nella-cordelia-birth-story.html

Touring Europe

Surprise! I finally have something to say today because this week has been a bit overwhelming.

Another mom from the online Down syndrome community posted a status on Facebook this afternoon saying she wished she could leave "Holland" for a few days. The Holland reference is a common one in DS circles because of a poem by Emily Perl Kingsley which compares the journey of parenting a child with disabilities to a trip to Holland (when you were expecting to be in Italy).

I haven't felt like Henry's Down syndrome has been a source of stress for us, and admittedly we are some of the lucky ones. So far, he is in excellent health with no heart problems, vision, hearing or gastrointestinal issues. He is meeting most of his milestones and is by far the easiest baby I've had. But this week, I can definitely understand this other mom's sentiment that Holland can be a bit too much sometimes!

It's not just Holland -- I'm juggling too much. People ask me how I do it all (working from home, going to job interviews, and trying to keep my kids happy and healthy while caring for our home, bills, meals and mounds of laundry) and I often fear that I just don't do it all WELL. I know I'm in good company -- most of you moms out there can relate to all of this, right?

Despite my background and experience as a Special Ed teacher, my busy mom brain starts to spin when a therapist is giving me a verbal list of 100 things to try this week when I'm playing with Henry. It spins again when his doctor asks me exactly how much he is eating and whether we've followed up with the feeding clinic and the developmental clinic (I could barely get to his well visit on time today, let alone consider making appointments anywhere else!). Again when we arrived late this morning for OT because our visit to the pediatrician ran over due to health concerns with one of the other boys. Again when therapists are giving me differing opinions and advice. Again when I realize I've missed a Kindergarten event because I never went through the pile of papers. And again and again and again.

How do I do it all? I don't! Some things just get set aside. I'll catch up this weekend on bills and laundry and cleaning. I'll say yes to more play dates even when we don't have time, because I need time with other moms as much as my kids need time with friends. I'll allow myself the luxury of therapeutically blogging to get it all out. I'll give myself some grace and try to slow down and enjoy this trip to Holland and Italy and all the stops along the way.

Boring, In a Good Way

I've been trying to think of what to blog about now that the dust (both literal and figurative) has settled a bit around here. I set out to create a blog in order to share my journey, tell my story . . . but I have to be honest with you . . . there isn't much to tell! Henry is 4 1/2 months old, healthy and wonderful! He's rolling over, grasping his hands together, cooing and laughing. It's normal babyhood around here. I wake up, change a lot of diapers, do a lot of laundry, clean a lot of messes.

Boring, right? What a blessing. I wouldn't have it any other way!

Halloween Pics

Two Months Old

Still too busy to blog these days, but I thought I would add some fall photos of the kings. Henry is two months old today and is just wonderful. He has increased his intake and gained some weight, so the feeding clinic "graduated" him. With our hectic days, I was happy to scratch that off the list! He was recently evaluated by Early Intervention and qualified for OT services, which should be starting that next week (with a focus on feeding and head control). He has the sweetest disposition and still doesn't cry or fuss much unless it's tummy time, but if William is there talking to him, he tolerates it much longer! :) I do hope to be able to write more here as we settle into our new routine and am even considering posting some of the activities we do at home as a part of the blog. Til then. . .enjoy the photos!

Catching Up

What ever gave me the idea that I would have time to blog while taking care of three kids, a house and a part time job? I am realizing that some things just won’t fit into my day, and blogging (if you haven’t noticed) has had to get in line behind other, more pressing duties. Still, I would love to post updates whenever I get a free moment, and I happen to have one little moment this morning (thanks, Diego)!

Believe it or not, Henry is already one month old!! As you can see from the recent photos, he has changed so much already (along with everything else in our daily lives, it seems).

It was quite a surprise arrival! Scott was out of town serving as the best man in a wedding. I was nervously trying to just get through the weekend without him, hoping I wouldn’t go into labor (but never really thinking it would happen!!). When he left on Thursday, I packed a hospital bag for myself and an overnight bag for the boys in case they needed to stay with someone. I was reassured when my friend Alison joked, “You’re prepared, so it won’t happen!” By Saturday night, I was breathing a sigh of relief that we had gotten past the wedding and Scott would be returning the following evening. I spoke to him around midnight, told him I’d see him at the airport, and went to bed. Just three hours later, I woke up and immediately realized that my water had broken. Panicking for a split second, I reminded myself that I had rehearsed this scenario in my mind and was as prepared as I could be. I called Scott in New Hampshire, my parents in Ohio, and Alison who lives just a few minutes away – all of them knew it had to be me when their phones rang at 3 am! Alison took me to the hospital while her husband Josh watched 5 boys (my two and their three)!

Despite our best efforts to wait for Scott (who managed to get an early flight and would arrive around noon), Henry was born at 9:07 am. I am so grateful for a friend like Alison, who stayed with me and was even there at the birth to welcome Henry and be the first to hold him (apart from the doctors and nurses) and videotape his first moments. Since I had a c-section, I didn’t get to hold him right away, but got to see him and kiss his sweet face before they took him to the nursery.

It was a LONG day after that. Scott arrived around noon as expected, but Henry still wasn’t with us. Late that afternoon, our pediatrician came in and told us he was having trouble transitioning (he had low heart and breathing rates), and they wanted him to be stabilized a bit more (they were deciding whether or not to send him to the NICU). Fortunately, he improved and they brought him to us at 5:30 pm. He stayed on the heart/apnea monitor during our 5 day stay at the hospital, but improved every day and was able to come home without the monitor. Apart from that tiny scare, the only problems we have had are some feeding issues. Henry never got the hang of nursing and was rapidly losing weight after we got home. He is now on a high calorie formula and is finally gaining weight (though still only takes about 1 - 2 oz at a time on average).

He is a wonderful sleeper and a really easy baby! He doesn’t cry much, and his cry isn’t very loud (though I’m sure his brothers will teach him how to speak up for himself). Every minute with him is a JOY! There is much more to say, but this is a long post already . . . and little people are getting hungry for lunch! ☺