Monday, November 17, 2008

Some new pictures!

*Noah is one month and two days old.*

First of all, here are before and after (well, during) pics of Noah the day of his blood transfusion. He had started looking kind of pale to us, and you can really see from the pictures how his color improved as a result of the transfusion.

Here's before:

And after:

In the after picture, you can see his little IV. It was so tiny! The blood on his shirt is from where the IV cap that connects the pieces was leaking a bit.

He's been such a sleepy baby because of the anemia. Some people still comment that they've never seen his eyes!

But he's feeling better and getting older, so he's awake more often now!

Of course, he still loves sleeping on mommy or daddy's chest. And don't forget about the cats! They need love too!

Saturday, November 15, 2008

Good blood = pink baby

*Noah is one month old today!!*

We spent the ENTIRE day in Chicago yesterday at Children's Memorial for his blood transfusion. We left the house at 7:15am and got home at 6:00pm. I think I slept three hours that night to top it all off, so when we got home, I was spent. Fortunately, little man let me sleep a bit last night!

Anyways, when we got there, they started an IV right away and took some blood to type and cross. It took about an hour for the blood to come down, and then they started the transfusion. The transfusion itself took about four hours, and then they sent us on our way.

Noah was SUCH a champ during the whole thing. He was so brave when they gave him the IV and barely fussed all day. Everyone loved him - he was definitely the littest one there, and probably the healthiest, thank god. So many of the other kids there were getting treatment for cancer, sickle cell, and other things like that...

We're doing good, and it seems like he shouldn't need another transfusion, but only time will tell. This website explains it better: - basically, kiddos don't start producing red blood cells until 6-8 weeks of age, but because of Noah's blood disorder, his body is destroying his RBCs too quickly, resulting in the anemia. We go back to see the specialist to follow up and have more blood work done on Dec 4th.

Thanks so much for everyone's support and well wishes! It means a lot to us!

Thursday, November 13, 2008

Hemoglobin of 7.6 = blood transfusion

*Noah is 4 weeks, 1 day old.*

poor baby noah. it is just one thing after another with him. just like his mommy, he seems to have a lot of medical issues...

i took noah to the pediatrician yesterday for his follow up bloodwork to re-check his hemoglobin level. they gave me an order for additional bloodwork every week through the end of the year to get done at the lab at central dupage hospital. the ped called later and said the hemoglobin was 7.8 - down from 8.7 last week, but he didn't seem too concerned. he told me he'd forward the results to the hematologist and they'd follow up.

so the hematologist called me this morning and told me that he's concerned that the hemoglobin dropped so much in one week and that the decrease in the number of red blood cells oxygenating noah's body could be putting stress on his heart. he told me he wanted to do a blood transfusion, which was shocking, and even more shocking was that it needed to be scheduled for tomorrow!

i didn't even know what questions to ask. i was so taken aback. they had told us that transfusions were a treatment option for kids with anemia and spherocytosis, but never imagined it would be something we would have to do, much less this soon! noah's only four weeks old!

the hematologist said that even though they can't *officially* diagnose it yet, he's 95% sure that noah has spherocytosis because of the family history, his history of jaundice, and now the anemia.

what sucks is that i've lived with anemia and spherocytosis my entire life, and didn't even know i had the spherocytosis until i was 17 years old! now i have to worry about my baby having a blood transfusion already - it makes me worried that he'll have a more serious battle with the disorder and may need surgery down the road to remove his spleen and/or gall bladder. and worse, i am having immense guilt about it all, because it's hereditary on my side, and therefore my fault he's sick. i know, i know. of course it's not *really* my fault, but i just feel like - i don't know. after IVF and everything, obviously we wouldn't have done anything differently. i guess i'm just frustrated that i wasn't better prepared. i knew this disorder was hereditary, but i didn't realize it would be a 50% chance i'd pass it on, and i guess i didn't really know the implications because i've never really had any major problems with it.

anyways, PLEASE keep us in your thoughts tomorrow. i'm sure everything will be fine, it's just terrifying to think of your baby being so sick. i'm trying not to overanalyze or google too much because it just makes my mind race.

honestly, it's a very surreal experience for me. i have so many memories of my childhood - like up until age 21 or 22 - of regular visits to the, sometimes weekly, to larabida for follow up appointments with the rheumatologist, blood work, ultrasounds, therapy, and even one two week hospitalization for a drug treatment... and when we were at children's last week, it just felt so weird to be on the other side. for so many years i was the kid, and now i'm the mom. it makes my heart ache for my son, but also makes my heart ache for my mom and what she must have gone through with me for all those years. my dad wasn't the most supportive person either, so my mom was usually alone with me (and sometimes my sister) on those trips, which usually lasted all day. so thank god for ben. i can't imagine doing this alone.

Monday, November 10, 2008

Bad blood, a stiff neck, and VH1

*Noah is 3 weeks, 5 days old.*

Just like mommy, Noah's going to be a pro at doctors, specialists, and bloodwork before long! Poor guy...

On Thursday, we had a consultation with the hematologist at Children's Memorial. We discussed Noah's and my medical history at length, and then Noah needed to give some blood. Those poor little heels were just starting to get better! The doctor originally wanted to see us back in 6 months for follow up blood work on both Noah and me and to possibly make a diagnosis of Hereditary Spherocytosis (HS). However, the doctor called the next day and said that Noah is anemic (hemoglobin of 8 point something - 12 is normal), and they want him to get blood work every week for a few weeks and go back to Children's in December for a follow up. Anemia is one of the main symptoms of HS and is something I've lived with my entire life. We're scheduled to see the pediatrician on Wednesday for the blood work.

Noah also had a physical therapy evaluation on Friday for his torticollis. We're doing the evals through Early Intervention. Conflict of interest? Not really - this way I can pick my therapists (call in some favors, if you will) and be on top of what's going on, plus I don't have to take Noah to a clinic full of potentially sick kids at 4 weeks old... The PT said she's going to recommend she see him monthly to check in and make sure he's getting better and not worse. She gave me a lot of tips on positioning and stretching exercises. I'm not too worried about Noah's neck at this point, but it's definitely going to be a matter of breaking bad habits that both he and we have gotten comfortable with in terms of positioning and whatnot.

Noah definitely loves to eat, sleep, and poop. Perfect storm of baby, if you ask me! He's eating about 4oz of pumped breastmilk every 3 hours or so. I try to set my alarm to wake every 3 to 3.5 hours at night, and I've often been sleeping through it (shame on me), but Noah doesn't seem to mind. He'll wake me up when he's ready to eat, and usually will sleep for 4-5 hour stretches. The 3:00am feeding is the hardest for sure, BUT there is one perk. I usually change him, feed him, get him back to sleep, and then go to the basement to pump, which used to suck... until I discovered that VH1 plays music videos in the middle of the night!!! SCORE!!! It totally makes the time fly right by, and last night, part of me almost wanted to keep watching!

Tuesday, November 4, 2008

Election Day!

*Noah is 2 weeks, 6 days old.*

Today is a big, big day. Noah doesn't realize it yet, but history is about to be made, and he was a part of it!

It's MY future!!

Mommy & Noah getting ready to go!

No campaigning beyond this point. Mommy had to close her sweater to hide her Obama shirt...

Proud to be an American under President Obama!!

Sunday, November 2, 2008

Baby's First Halloween!

*Noah is 2 weeks, 4 days old*

Noah's first Halloween was so much fun. Mommy bought his costume a few months ago after searching FOUR Babies R Us and Toys R Us stores to find it in a 0-3mo size, which by the way, was huge on him! First, we went to visit Mommy's office - it was so nice to see everyone, including all the other kids who were there trick or treating too!

Kari, Kaden, Noah, & Mommy

After the CFC, we went home for lunch and Grandma & Grandpa came to visit. Then we went to visit Grammy at her work. She was so happy to see us!

After Grammy's work, we went trick or treating at Grandma & Grandpa's house and Great-Grandma's house. Everyone thought Noah was the cutest monkey ever!

We then went home to pass out treats to all the neighborhood kids. We don't really know our neighbors, but they all said congrats on the baby, which we thought was so sweet. Auntie Julie & Uncle Scott came over to visit with the monkey baby.

Mommy & Daddy sure do love our little monkey!