G6pD update

In April, Connor got croup - bad. Poor guy swallowed a dime one day and the next day had croup. But he recovered very nicely. And what a sweetheart he was by trying hard to stay away from Harris in hopes that he didn't get sick. Well, keeping their germs separate is just impossible no matter how hard we try (these boys can't get enough of each other!)

Harris started feeling sick in the morning and by the end of the day his fever was 104.3! We managed to get things under control but after a few days of being sick, he stopped eating, got cranky, and started to look pale. A trip to the children's hospital for blood work showed that his hemoglobin had dropped to 6.2 - very low even for Harris who mostly stays between 8.7 and 9.7 The drop was triggered by the infection and fever. So our little vampire got a blood transfusion.

We were lucky enough to be able to have the procedure be outpatient but that meant that we were in a room with recliners full of other children receiving transfusions or chemotherapy. Harris needed to sleep so a nice nurse found us a room off to the side and Mike managed to get Harris to sleep through most of the transfusion which took about 2.5 hours. (100CCs of O).

Harris had blood work several times over the next few weeks and his levels climbed and have remained strong. Last test he was at 9.7. He had a check-up with the hematologist recently and while his spleen is enlarged, it is within the limits that are healthy for a G6pD patient.

We are so blessed to have a baby with G6pD and realize this every time we visit the children's hospital. On one trip we met a sweet 2 year old with cancer who could name all of her doctors. I can't imagine the emotions those parents must have.

So, HarBar is doing fabulously well. He is army crawling his way around the house and is slowly starting to climb (uh oh!). I'm pretty sure he hasn't turned down any food yet - seems to like everything! And we are learning how to survive in a legume-free home. Well, I guess I'm learning to survive. No one else seems to be an addict quite like me!

5 months old!

Harris is five months old today! (Connor flashback)

Harris has discovered his tongue, likes to talk baby talk, LOVES toys (Connor pretty much ignored them at this age), and has tried baby cereal and carrots. If we don't get the cereal to his mouth fast enough, he hits the bowl!

Harris may love his toys and his food but his FAVORITE thing of all is Connor. Harris watches everything Connor does and most of the time can be cheered up just by Connor talking to him. Of course, if Harris is loud enough, Connor gets frustrated with the crying and leaves the room! Oh, Harris cries A LOT more than Connor did at this age. Harris wakes up angry most of the time - usually because he is hungry. And he doesn't calm down until the food is in his mouth! (His G6PD D causes a fast metabolism that could be the reason for the angry hunger!)

Harris and his Mama have a lot in common - if we're hungry, we're mad. If we're tired and not in bed, we're mad. 8-)
Harris already loves reading books. He is not happy unless he can see the pages and then he will sit and pay attention to book after book. We try to bring Harris in to Connor's nighttime stories each day.
Slowly our little guy is becoming ticklish and sometimes when he is playing by himself on his tummytime mat or in his swing, he laughs out loud! And of course he loves to snuggle. He sleeps on his belly in the crib for most of the night but around 5 AM he comes into our room and snuggles back to sleep. Harris still wakes up once a night - Connor slept 12 hours straight through by this age. (And Connor still loves his sleep, almost 4 and still takes a 2-3 hour nap everyday.)

Did I mention the drool? We did not experience this with Connor! No teeth yet but could this be the start?

So, our boys are little opposites! Well, except for all the love they get! Happy 5 months Harris!

November???

These boys can't get enough of each other! If Harris cries, Connor comes running to help cheer him up! We got a popcorn maker and Connor thinks this is how you get every last kernel!

Grandma and Grandpa Gene came down from NY and we all had a very nice visit!

Sometimes the only way to get Harris to calm down is to give him to Connor

Harris turned 3 months on 11/7. Here's a flashback to Connor at that age. (This pic is of Harris)

What happened to October?

Minutes before we left for Harris' Christening on 10/18, I lost our media card - our ONLY media card. I'm pretty sure I dropped it in the trash. Funny because I did the same to my cell phone a few months after Connor was born. So, I had to ask others to share pictures and I didn't get all that I wanted...Here are a few:

We had a beautiful day on Strubble Trail. Can't get enough of that place in the fall.

We took the train into Phila with our good buddy Colin to see a Disney exhibit. Tons of cute pics of Connor & Colin (holding hands,hugging!) but I haven't had a chance to ask Colin's mama if I can post them yet. She has been a little busy lately!

Baby Bob BOO! showed up on Halloween....Along with Super Why and his Super Readers!

2 months old!

Harris turned 2 months old on October 7. That went fast and he is really growing! At his 2 month check-up he was 10lbs 7.5 oz (21st precentile) and 22 1/8 inches (19th percentile) long. Of course, his head was in the 44th percentile. Little Bobblehead! Connor was only about 8 pounds at 2 months old so we think of Harris as our little chunker!



He hasn't had a blood transfusion since his second one on 9/1. His hemoglobin level has gone down slightly (lowest 7.8 since last transfusion) but has mainly held steady and gone up slightly. He still goes for bloodwork 2x a week but if the levels continue to climb, the frequency of blood work will decrease which will be great! Right now our plan is pretty simple - Harris and I get up & he eats. Then we bundle up and head to the hospital for bloodwork while Mike and Connor sleep/eat oats/get ready for the day. Since we are regulars in the hospital lab, we know a lot of the employees and some even make a special stop in to say hello to Harris. When we get home, Mike leaves for work.

When Mike gets home from work, Harris is usually just waking up from a nap. I think he already knows our family schedule because he wakes up and then won't settle down until Mike holds him. He is happy as can be getting snuggles from his daddy!

Transfusion

On Thursday 8/20, Harris' hemoglobin dropped dangerously low to 7.9 and we had to take him to DuPont for a blood transfusion. Mike left work for home while I packed our bags. Here is little Harris ready to go to the hosptial - oblivous to the situation.

Our very good big boy was taking a nap while I got ready. We had to wake him up to leave and as always, he was pleasant as can be. We told him what was going on and that he was going to Mommom's for a sleepover and he picked out a bunch of books to take with him! Can't go anywhere without his books and his laptop! (Just like Mommy! he he!)

At DuPont, Harris was put on a bili-bed (for his jaundice) and had MORE blood taken and an IV put in. Poor guy has been stuck more times then we can even count! At midnight, the blood was finally ready and our B Positive received a bag of O blood. Since the IV was already in, Harris slept and nursed right through the blood transfusion without feeling a thing. Bloodwork on Friday showed that his hemoglobin had risen to over 10 but his potassium levels were high. High potassium can cause heart problems and within minutes there was a room full of people including an ICU doctor ready to transfer Harris. I didn't want to hear the crying from the new bloodwork that was needed so I left the room and prayed that the high potassium was a false reading. When I returned a few minutes later, it was confirmed that the high reading was a false reading - 3 additional tests were done to confirm. Thank you God!

Friday afternoon Harris was discharged with orders for more bloodwork in a few days. The visiting nurse resumed her visits and by Wednesday, Harris' jaundice was gone and the wallaby bili-blanket were removed. We now take Harris for bloodwork about 2x/wk and as of today (8/31), his hemoglobin is stable. On Wednesday he has an outpatient appt at DuPont. The doctors still don't know what is causing his hemalysis (breaking down of the red blood cells) but once he begins creating his own red bloodcells, the problem will likely reverse on its own. In the meantime, lots of bloodwork and hopefully no more transfusions!

Why the NICU?

Okay, here is my attempt to explain why Harris was in the NICU. Please be patient with me. I did learn a lot while spending A LOT of time in the NICU but I'm certainly no expert. The doctors and nurses were very patient
and answered all of my questions...multiple times! Mike understood things better than I did so he might jump in and clarify!

At 6 hrs old, we noticed that Harris was looking yellow & told the nurse. Turns out that babies should NOT be jaundiced that early in life. Poor Harris didn't even have a name yet & had to be taken for bloodwork. His bilirubin was 11.4 and climbing. This is dangerous for such a young baby & major complications can come out of numbers over 20. Luckily, Harris' bili got close to 15 but never over. So.....Harris had to wear some cool shades and rest under 5 lights in the NICU to get the bili down while the drs & nurses searched for a reason for such a high number. In the meantime, he was given IV fluids to help move the bili out of his system & antibiotics to proactively fight any infection that could be causing the high bili. Turns out that the cause was his reticulocyte (retic) count was above 20%. This is the rate at which red blood cells are broken down - normal is below 2%. So, breaking down of the the red blood cells caused waste (bilirubin) which caused the jaundice. We still do not know what caused the high retic but are following up with a pediatric hematologist at DuPont.

See the paddle in the above picture on Harris' arm? That was for the IV and boy did he use that thing as a paddle! He is an arm swinger - now I know what I felt in my belly all that time! While he had the IV we were calling him Paddles!

For the first few days (he was in the NICU for a week), Harris was only allowed out from under the lights to nurse for 10 minutes. Then he was given either formula or expressed breastmilk (liquid gold!) under the lights by his daddy. As his bili started coming down we were able to keep him out of the lights for longer and Mike was able to actually sit down and feed him. The reason for the extra breastmilk/formula was to keep things moving through his system...bili comes out in the pee and poop!

Harris' phototherapy was slowly reduced and eventually gone and the little guy was allowed to wear clothes and be swaddled! It was very nice to visit him and old him as long as we wanted out of the lights! After his retic dropped to a normal level of below 2%, Harris came home on Friday, 8/14, at one week old. He is still being monitored...more on that to follow.

Introducing...

Harris Robert Cianciulli was born on 8/7/09 at 11:06 AM. 7lbs, 9oz, 20 inches long. Born at 36 wks, 5 days, he was 4 days earlier than Connor was but is still a whole pound heavier!

We all know that Connor is a kisser and a hugger and Harris got the full Connor treatment on day one! Connor then left for a special big boy trip to Memom and Dada's house. Before he left the hospital he said, 'Can I take the new baby with me?' So cute! Connor has told everyone that he will be calling Harris 'Baby Bob.' We love it!

Harris is less than an hour old in this picture. Chubby cheeks - opposite of skinny minnie Connor at this age! Before Harris was 10 hours old, he was in the NICU under lights for very early and very high jaundice. He is still in the NICU now at 48 hours under the lights but making fabulous progress. He gets a Mama-feeding every 3 hours and that's the only time he's allowed out of the lights for now. I will be staying an extra day in the hospital to be with him and depending on his progress, Harris will stay an extra day or two.

Here are Mama's boys! Mike is staying at the hospital and despite getting very little sleep on a very uncomfortable bed, is still an AMAZING father and husband! He gets to take Harris' temperature and change his diaper every 3 hours at feeding time and he does the hand-off from lights to me for nursing. Not to mention helping me with everything - even putting on my socks!

Harris is the biggest baby in the NICU right now and we are so Blessed that he is only in there for high billirubin. There are a few very tiny babies who are unable to feed, in incubators...
We thank God for our beautiful Harris and for his decreasing billirubin levels.