Announcing the Adventures of Baby Hayden

Almost 5 months ago I blogged about the complications that arose from the birth of my best friend's son Hayden. He was born with a cleft palate (no cleft lip, thankfully) and endured a bout of severe neutropenia that warranted a two week stay in Dell Children's NICU.

Since raising a child with birth abnormalities is never dull, Hayden's folks have decided to blog about their own battles with parenting. If you're interested in following their adventures (and believe me, there is no lack of excitement between either of our families!) you can check it out here. You can also check out Anthony's photography biz as well; this man is incredibly talented with just about everything he touches and he's decided to make a career out of it, so check that out too!

Welcome to the blogosphere my friends!
Kelly

Halloween 2009 Recap

As Cameron so succinctly put it, "Happy Halloween Day!" Below is a photo recap of our big night. We all met up at Casa del Marino and then went trick or treating in the neighborhood with them, their neighbors, and their neighbors' friends. The kids ranged in age from 2-5 with Billa being the youngest (ok, so she's really 20 months, but it's close enough to 2!) and they had a blast. Michael and I were the only adults to actually dress in costume–I was a black widow and Michael was a zombie hunter (he got off work late and there was no time for Tony Montana). We went around the block which took us about an hour; it didn't take Billa that long to figure out what was going on! Everyone loved her outfit and how cute she was. She didn't say a word (no Twick or Tweet this year)and opted instead for a 'bye bye' wave instead of saying thank you. Everyone loved it nonetheless, which made me feel a bit less guilty about her manners.

Since Billa was the youngest, Michael and I were the 'thank you'/safety patrol; we made sure each kid made it to the door in one piece and that they said thank you to each homeowner. Madeleine and Sidney were VERY proud of this whole process as they would continually announce to the group of parents: "Mommy! I said 'trick or treat' and 'thank you' and I got candy!!!" We did have several kid and candy spills, but we ended the night with a huge haul and no huge mishaps. Billa's bucket was so overflowing that Michael and I had to carry candy in our hands at the end. Her haul was somewhat depleted after a thorough inspection as we discarded anything that was open, a choking hazard, or just not palatable to Michael and I. Hey, we're gonna have to do most of the eating, might as well make it something we like!

Post inspection, the kids carved a pumpkin while the daddies sat by the firepit and smoked some cigars. We gave Billa a bath while we were there and borrowed some outgrown Halloween jammies for her before we all said our good nights and headed home. She didn't get to bed until ten which made for and ugly bedtime when we got home, but she slept in this morning, which was nice for us!

We hope you all had a safe and wonderful Halloween...enjoy the photo recap and a speedy sugar rush recovery!

Billa and Daddy are ready to go!

Madeleine, Cameron, and Sybilla in their Halloween get up...
no one could sit still or look at the same camera and smile at the same time!

The trick or treat pack of 2009: Jacob, Sydney, Blake, Madeleine, Cameron, and Sybilla

Bat Girl jams out to Thriller and the Ghostbusters theme!

Baby Hayden in his pumpkin bunting which was a little too big!

His lovely mama, Kellie, models the rest of it!

And we're off!

Trick or treat! Billa is still trying to figure out what all of the fuss is about.

Daddy takes a picture break with Billa in front of one house.
Hunting zombies is hard work!

Mama and Billa, such a pretty pair!

Mama's black widow costume...get it?

The back view...the red bow is meant to symbolize the red hourglass...
clever, yes? I thought so too!

Daddy makes sure it's a zombie free zone and that the kiddos don't forget to say thank you!

The take...AFTER candy inspection and removal of all candies that were not Billa appropriate...or to Mama and Daddy's liking ;o)

Pumpkin carving time!

Billa tries her hand at pumpkin carving

Batter up! Billa takes a break from pumpkin carving to go zombie killing!

Trick or treating is rough on daddies...a nice cigar and a sit by the fire pit are in order!

The finished pumpkin..he's a happy fella thanks to Madeleine!

Sybilla and Madeleine check out Cameron's Bumblebee action figure before bedtime...
check out BK's borrowed Halloween jammies!

Happy Halloween Day!
The Guerra Gang

HAYDEN IS HOME!!!!

Good news, folks! Baby Hayden has come home! Thank you all in advance for all of your prayers and well-wishes. I know that our friends appreciate them and they are grateful to have their littlest one home with them safe and sound. Hayden's ANC has steadily gone up and when they released him on Tuesday, it was over 2500! Because of the cleft palate, he is still having to use a feeding tube, but his pediatrician and the doctors at Dell Children's gave his folks clearance to take him home so long as they learned how to insert the tube themselves, which they have mastered. It's a lot of work for him to try and suck on a bottle, so they have to supplement with the tube in order to make sure that he gets the right amount of food to increase his weight. Because he is so small, he isn't allowed to lose any weight and will continue to have many pedi visits over the next few weeks to monitor that closely. But at least he is home.

I would have reported this earlier except that I have been sick the last five days with some sort of cold/summer flu/respiratory infection and too exhausted to do anything besides sleep. I started feeling ill last Friday and by Saturday morning I was so ill I had to call in the reinforcements (read: the grandparents) to come play with Sybilla for a bit so I could rest. Billa had Playtime with Papa while Mommy and Daddy slept. Michael wasn't sick, but he and my brother David has been up all night fixing the heater core issue in my SUV so that I could have working AC and just in time too... yesterday the thermometer in my car read 110F!!! My poor SIL Michelle has broken AC now too so I totally sympathize with her situation. Many thanks to my brother for taking time out of his weekend off to help us out...YOU ROCK!

Father's Day I felt a little bit better and we went and made dinner for Michael's dad. I really shouldn't have though as that night I got worse. [sigh] Sometimes I have too much energy for my own good! Monday was Michael's 27th birthday and I spent most of it sleeping. I feel so bad about being sick this weekend because both of Michael's special days were ruined. He spent most of his time watching the baby and taking care of me. I tried to make it up to him by making him a strawberry cake on Tuesday evening when I felt a bit better. We'll definitely be making up for it when we have his birthday party this Sunday. The Marino's are going to come out and make homemade hot wings and we're going to swim and grill burgers and enjoy a pirate ship cake, pictures of which I will post later.

Seeing as how I have missed three days of being in the office, it's time for me to play catchup. I'll post later on some of the funny things that Billa has been doing, but just wanted to make sure everyone heard the good news about Hayden!

Thanks again!
Kelly & the Gang

Good news on Hayden!

Good news, y'all! Baby Hayden's ANC today was 400! He's not out of the woods yet though, but this is good news. They're going to draw his blood again on Friday and check it, but so far, the new count means that a lot of things have been eliminated. Phew!

Thanks for the prayers and well-wishes, please don't stop yet!

Ciao,
Kelly

Baby Hayden Update 6-16-2009

Ok, prayer warriors...our work ain't done yet! When I last reported on Hayden, things seemed to be looking up. However, late last week his white blood cell count seemed off so the medical team at Dell Children's decided to give him a course of antibiotics to help him out. I've been hesitant to post an update on Hayden after this because as we all know, I am a drama queen who is prone to over exaggeration. I really didn't want to make things look or sound worse than they might be. Unfortunately, Kellie & Anthony received some not so good news yesterday that could mean something far more serious and I am here to ask for your prayers again.

In a nutshell, white blood cells are our defenders against disease. What most people don't know is that within WBC, there are three different types of WBC of which the neutrophil is the most prevalent. Think of these guys like the Marines; they're first into battle and do most of the work when waging war against infection and disease. A normal healthy person will have an average neutrophil count (ANC) 1500 or more of these guys in a blood sample. If you're slightly ill, you might have anywhere from 1000 to 1500. If you're really feeling a bit under the weather, you've got about 500 to 1000. Less than 500 and the next strain of bacteria could kill you. Hayden's current count is 120. Basically, if he were to get an infection he has no defense against it and could die in a mere matter of hours. Even the natural bacteria on his skin could cause complications.

The good news is--yes, there is a glimmer of hope in all of this--that after numerous tests there appears to be no sign of infections, Hayden seems healthy and hale, and he's received a couple of rounds of antibiotics. It's just that he is currently experiencing severe neutropenia (abnormally low neutrophil count for those of you keeping track at home!) and the doctors can't figure out why.

The bad news is that because infection has been ruled out, the causes for the low ANC could be because:
a) his mom had some disorder during pregnancy, like pre-eclampsia OR
b) he could have some other disorder that is akin to the blood cells from his mom attacking his and wiping out the neutrophils (similar to what happens when a woman who is Rh negative gives birth to an Rh positive baby) OR
c) Hayden's bone marrow is not able to keep up with production of said neutrophils OR
d) Hayden could have congenital neutropenia aka Kostmann's Syndrome.

Of these, they've pretty much decided that option A is not an answer--Kellie had a textbook perfect pregnancy with no complications. Option B is best case scenario because even though it sucks, it should cycle itself out in about two months and Hayden can come home and will be fine other than the cleft palate surgery and/or therapy he may receive later.

Options C & D are the scarier ones. Kostmann's syndrome is essentially "bubble child" syndrome--the child has almost no defense against normal bacteria and usually has to receive a kind of gene therapy for the remainder of his life. While the treatment for this has definitely improved the odds of kids who have it, the gene therapy *could* lead to leukemia or cancer later on in the child's life. And of course, Option B could be a sign of aforementioned cancer or leukemia if his bone marrow is not producing it regularly.

Obviously Hayden's folks were in rough shape last night after receiving the news; they can't take the other children to go visit him until his ANC goes back up to a safe level and there isn't a pediatrician in the city who would allow Hayden home until that level is at least 1000 which could mean a long stay in the NICU. Currently, we are waiting to hear results on additional tests they are running and a hematologist/oncologist has been consulted and is working to help Kellie & Anthony figure out what's going on. We may have some results tonight or early tomorrow so until then, your prayers, well-wishes, and happy thoughts are greatly appreciated!

Thanks,
Kelly & the Gang

More Baby Hayden

I babysat the kids last night so that Kellie & Anthony could go and try to feed Hayden some pumped milk. He did as well as he could and K says he really wants to suck, which is good news. Since the cleft is so mild, they are holding off on any surgery until he's about 1 year old at a minimum. He will most likely have to visit with a speech therapist as he gets older and closer to the surgery, but that's a surmountable goal, all things considered. His breathing is not affected at all, like we thought it was, but he does occasionally have a little grunty growl raspy sound that he makes.

Michael and I are planning on visiting him this weekend since it will still be another week at a minimum before he comes home. In the meantime, his family is doing well and holding up fine; it's a little stressful but they are trying to maintain some normalcy as well as get some much needed sleep while they can!

Until then, thank you so much for all your prayers and well-wishes! We are grateful for all of you and so much more.

Night night,
Kelly

Update on Baby Hayden

I spoke to Kellie late last night as she and Anthony were headed home. Baby Hayden is resting comfortably in his own room at Dell Children's and being attended to by a very wonderful staff of nurses and doctors who are determined to help him eat on his own. As his mom said, it's déjà vu but without all of the drama, which is refreshing for once! After examination, Hayden's cleft palate is mild and is only affecting the soft palate in the back, but it is causing some issues for his breathing and feeding. He also has a very small lower jaw, which could be an indicator of something else, but only time will tell. They are going to keep until he can feed on his own and will then determine a course of action at that point. An hour of Google research revealed that in cases like these, they will usually fit the child with a device to help "plug the hole" essentially until he's a bit older for surgery to repair, 6 months being the youngest and 12 to 18 months being the norm. They're going to try and take the other kids to go see their new baby brother today and hopefully learn some more. So for now, we're still praying and we're cheering Baby H on!

Baby Hayden has arrived... but with some caveats...

As we put Sybilla to bed this evening I held her a little bit tighter than normal and offered up a prayer of thanks to the Old Man Upstairs for my beautiful, perfect, healthy child. She is smart and clever and walking since nine and half months. At fifteen months old, she has at least 20 words to her vocabulary and she has gained weight well and hit all of the milestones on her chart and then some with flying colors. We are blessed. I read blogs and articles everyday about other parents who are living the stuff of nightmares and I thank God I am not one of them. But I also offered up prayers for all of them as we experience some of that so close to home.

My best friend gave birth today to her third baby at 12:59 pm, Hayden Alucard, and he has certainly shattered all of our expectations as to what to expect. His labor was longer than either of his siblings and he came much earlier than expected. We expected him to be early since his older sister and brother were too, but not three weeks earlier. And if his birth weight and development is any indicator, he is actually five weeks early; Hayden weighed in at 4.5 pounds, 17" long. And lastly, the kicker in all of this is the small horseshoe shaped hole in the roof of his mouth preventing him from being to swallow or breathe properly which appears to be a cleft palate.

While a cleft palate might not sound that serious given modern medicine, it doesn't negate the fact that we don't know when he'll come home and meet his older siblings and that his mom and dad have to endure this added stress on top of a newborn baby with two older children. My initial research is that cleft palate is treatable and if his condition is serious enough to prevent him from eating or breathing without assistance, they would most likely operate soon. There's also a lot of unknowns; how long will he remain in the hospital and what is involved in the recovery and rehabilitation process? Could his small size and early arrival signal some other developmental issue that has of yet been undiscovered?

The upside to all of this is that at least the pregnancy and the birth experience have gone well for Kellie and Anthony. They utilized the Austin Area Birthing Center, which so far has exceeded all of their expectations and so much more. When they left for Dell Children's this evening, the midwife that has been working with them accompanied them to be their advocate and to support them as needed until we know more. The pregnancy was relatively smooth with very little hiccups and morning sickness and Kellie was able to get all of the antibiotics needed during delivery (she's GBS positive) unlike the previous pregnancies.

Our prayers tonight are for our friends and their family and that the diagnosis is positive. We hope that you too will keep them in your thoughts and prayers over the next few days as we learn of what's to come and that Baby Hayden gets to come home soon. I will share some pictures as soon as we have had a chance to meet the little munchkin, but until we find out more, your imagination will have to suffice.

Thanks for listening,
Kelly & the Gang