Reflections on the Year of the Pig

As the Chinese Lunar New Year approaches, I have been reflecting on the last year and all the miracles we have witnessed, along with all the forgiving I need to prepare to do to clear my emotional register for the new year. Forgiving myself for being too hard on us for not being perfect. Forgiving of the U of M doctors for operating from a place of sobriety due to experience, instead of soaring hope (what we needed). Forgiving of Bo for being so cute that we are spoiling him out of control. Forgiving of Murray the Cat for getting sick amidst all the Bo frenzy.

Now that Bo is stable and developing, it is hard to remember how terrifying it was walking into the NICU every morning those first few weeks. Wondering if he would still be in his crib, or if his room would be empty. Wondering if we would still have a need for the carseat sitting empty in our back seat, and how I would have the strength to remove it, if I no longer had a Bo to seat in it. Wondering who else would have the strength to pack up all the baby gifts and clothes and furniture, because I knew if it came to that, I wouldn't. Those were the longest, darkest nights. And I know our stays in the hospital are far from over, but none will contain the mind-crushing terror of those mornings.

I am so grateful to have Bo with us for another amazing day. I am so grateful that we had those mornings to remind me to be grateful. I am grateful I never had to take the carseat out, or find someone to pack the nursery. And grateful it was only 5 weeks in the hospital and not 5 months, like a lot of other short gut kids, or 5 years, like the older MVID kids. And as I pray that Bo does not develop additional pathologies, I am still grateful for these last eight months. And I know that now I do have the strength to face the future, whatever darkness or sweetness the days ahead hold for us.

I just cover his big chubby head in kisses till it stinks from my saliva. I kiss and smooch and blow raspberries until he yells. And I noticed I only just started doing this after Christmas. I don't think I really kissed him all that much before then. I think all those terrible nights and terror-filled mornings just made me try to harden my heart. Those early months, we just did not know if he would actually make it to his hundred day birthday, or Christmas, or January 1st, or his first birthday. We are actually planning his first birthday. What a miracle.

Thank you for joining us on this new path that Bo has led us towards. Thanks for reading.

A New Hat! Thanks, Tung!

Although it hasn't made it even close to freezing today, and I had to fight to get into my car because the doors were frozen shut, we had a great day together. Jose built a fire at noon, and Bo and I played tummy time games, sitting up games, and ate cereal.

Bo loves his new hat. My sister in Hawaii made it for him. He looks like a little goblin in it with two puffy ears on top. I had to include a goblin-face expression. We are so lucky to have another great day with our little goblin.

PS thanks for the comments; this love and support helps me be the best mom for Bo, and Bo and I really appreciate it

Eat This, U of M

Finally, fresh new pix. We have tentatively started Bo on solids these last 2 weeks. UMich docs threatened us with increased diarrhea to the point of dehydration. No such thing has occurred. In fact, ever since we left their care in September, I have been regularly breastfeeding him, albeit in much smaller volumes than his peer group eats, but breastfeeding, nonetheless.

And, his WBCs were in the normal range today (16.7). Though his bilirubin was up slightly, 0.1 is still awesome, and pretty darn close to last week's 0.0. Another great day with our new best friend, Bo. We are so lucky.

All Text Update

Apologies to all Bo fans everywhere, but I haven't had a chance to upload new pix, so you just get text today. All the drs visits went well and without incident, thank goodness. Bo was showing off for Dr. Page (pediatrician), and sitting up like a big boy. Then with Dr. Cloney (GI) he was talking and talking with his new favorite words, "dadadadada, brrrrrrrrr (big saliva-y raspberry), dadadananana, yeeeeeeeee!" Since we got approved for 180 hrs of respite care through the end of August, we are going on our first nurse-supported date tonight! Thank you, State of Michigan, Department of Community Health!

Aloha!

WBC's are dropping (21.1) much closer to normal levels (19 is the high end of normal). Tomorrow is our well-baby visit, and Friday is our monthly check-up with the GI specialist. Not only has Bo been doing great with the rice cereal; no adverse events, but he really wants to start drinking out of a cup! And, drum-roll please, his direct bilirubin was 0.0 today!

Why Elevated White Blood Count?

Again, he has elevated WBC, but no other physical or clinical signs of infection. My guess is that he either has or is fighting off one or both of Jose and my colds. We are both, thankfully on the mend, but pretty wiped out.

And if you're sending us good vibes, please send some to our friends in Maine. Mallory has an infection. And my friend (and mother of 4 in Atlanta- the baby was just born in November); she is fighting stage 4 colon cancer.

Looks Like Jose Here!

Bo finally has a picture where he looks like Jose. He also had rice cereal for the second day in a row. He is a good eater! Ooooh, good boy!

Rave Till Dusk(?)

Bo spun himself 180' around in his exercauser for the first time yesterday. His head is getting too big for most of the hats he has, which I've noticed only really go up to 6 months at the baby clothing stores anyway. As you can see here, this hat is on its way to being a skullcap and strangulating his giant egg.

Are You Talkin' ta Me?

Rinse, lather, repeat. The fever has not returned from Saturday, but due to what doctor and I believe was a contaminated blood sample of Bo's from Saturday, they insisted on another blood culture today. And since I am working and Jose is sick, we really needed help to get him to the doctor's and the hospital. Thank god for Jose's family. His mom came this morning to pinch hit for us and it has made all the difference. This is what family is for: to shower us with their grace and presence, to alleviate the fear and anger, and to make us feel as if all these impossible things we are so in need of are a pleasure for them to give.

And, hopefully, next time one of us gets sick, we'll have our respite care in place, especially since it was dumb luck that his mom had the time off.

PS all the labwork from today looked good, as I had guessed.

Developmental Delays, My Cheeks

The OT/PT people came to assess Bo's development, and they confirmed what I had guessed: he's ahead of the curve on a few things, behind on a few items, and on track for most milestones. So, that's the good news. The bad news is, since he isn't significantly delayed, he doesn't qualify for the weekly OT/PT that we were hoping for, although we will still get a few hours a month from an OT just because he is medically complicated and remains at risk for delays.

24-hour flu (except it's not flu)

Still at home, hooray! His temperature stayed within the normal range each time we checked (every four hours) from 4pm through today. His CO2 was very close to normal, and all his other labs look good. So far, so good in the "not getting admitted department." We were so bushed yesterday, as the Bo episodes sapped all our energy and the bulk of the day: 11:30am-4:30pm running around, then administering additional fluids through our back-up pump, getting the pharmacist to come over and reprogram said pump, and checking his vitals every four hours. I can only imagine how tired Bo is today. He had just started his second nap when the phlebotomists came in and poked not just one, but both ankles! He was so exhausted that he fell back asleep almost immediately after they left. Today, Bo's bloodwork was drawn and run almost immediately (a one hour visit!), as the crush of poor was not yet present in the ER (express lab work is administered through the same registration desk when the outpatient labs are closed), unlike yesterday, which as a bright and sunny Saturday, all the poor folks who don't have docs came in for their coughs, colds and flu-symptoms (we were there for 3 hours). Thankfully, we've been able to get to wait in an exam room without all the germs of The Public to contend with.

Short Gut Cha Cha, the Bo episodes

Although Bo doesn't have short gut, or a bacterial infection of his blood so far as today's bloodwork is concerned (normal white blood count and c-reactive protein level), he is dry (his Co2 is very low, his potassium is low, and his lips are chapped), and he spiked a fever. So, we spent the afternoon criss-crossing town with a hot, cranky kid. First to the pediatricians', then the hospital to draw labs, home and a follow-up call from the pediatrician regarding his labs (see above) and the game plan: give him additional fluids before we hook him up to his regular stuff, check his temperature every 4 hours, check his lips, and let the doc know if he is out of sorts, still. Go back to the hospital tomorrow to recheck his bloodwork. Let's keep our fingers crossed that it's just a virus and we can evade a January hospital admission.

New Year, New Tricks

Sitting up, saying dadadadada all week, until yesterday's mamamama. Mostly it's dadada and a lot of vowel sounds sprinkled with raspberries.

The OT/PT people will come do an assessment Monday morning. Bo's a little behind on the fine motor skills, I think it's mostly because we are nervous about introducing solids. But there's no time like the present. Rice cereal, today!

What's Next?

Nobody knows. I'm working 25hrs/week as of 12/17/07. This ramps up to 32hrs/wk starting2/2 and back to full time 3/10. So far, Bo doesn't seem to miss me too much. I get to hang out with him in the morning before going to work, as he is a naturally early riser. Then, around the time I come home, he's either just getting up from his first nap or just about ready for the second one. His mood tends to get more rowdy as the day wears on and as he resists his later naps. Yesterday we kept him awake through what would have been 3rd nap, since that was such a disaster the day before (no nap occurred, just resistence to it). Today, he went down for 3rd nap rather late in the day, and I'm just waiting to see if he will sleep through the night and wake up really early, or decide to wake up during what is the middle of the night for him (after 8:30pm).

Mondays, his visiting nurse comes to draw blood for labs, and take his weight. Monthly she will draw extra blood for the Omegaven study run out of Boston Childrens, and measure his length. Today, he was weighed and measured: 26" (25%! hooray) and 14lbs 6oz (only 2%, but that's an improvement from not even being on the growth curve). His bilirubin was 0.1 again, for the 5th or 6th week. It's been so low for so long, I can't remember. Isn't that great?

Next Monday the county OT/PT people will come to give Bo an assessment and determine what additional services he will get, if he needs any at all.

Our Michigan Children Special Health Care (secondary insurance from the state) respite care request is being reviewed in Lansing (which we really, really need, especially once I have to start travelling for work again). And, hopefully, our request for Private-Duty Nursing will get submitted and reviewed soon, too. Our primary insurance policy already excludes both. They only approve private-duty nursing or respite if it's instead of the patient being in the hospital (meaning they stand to save a substantial amount of money).

Rebel Yawn

Things we weren't supposed to do:

1. Cloth diaper without persistant diaper rash
2. Breastfeed without exponentially increased output
3. Go to Boston with insurance preapproval
4. Get Omegaven in Michigan
5. Heal the liver on TPN and Omegaven alone
6. Live past 6 months without transplant
7. Take no medications beyond IV Nutrition
8. Have the same central line since 3 weeks of age
9. Hit developmental milestones on time
10. Catch up to weight/length growth curves before reaching school-age

Yawn. Oh well.