Long Day

Yesterday Jackson got his nasal stints put in. The wires connect to the mouthpiece he had before come up over his top lip and are shoved up into both nostrils forcing his nose up against his face.

We now have our very own 'pig/walrus'. :)

He loves it, as you can imagine. And to top it off, Halle and Jackson arrived home from their 15 hour weekly LA train trip at about 8pm last night, and Halle discovered that Jackson had massive swelling in his groin when she was changing his diaper. We headed off to the emergency room, stopped by the front desk to get our 'frequent visitor card' stamped so we get our 13th visit free... and headed into the emergency room.

It turns out that Jackson had a hernia. After getting him back on the IV, taking blood, xrays and wrapping his lower body in an ice pack for 2 hours, they managed to actually push it back in.

Now we're scheduled to meet with a specialist on Tuesday at which point they will schedule a surgery date to repair the hole so this doesn't become a regular thing. Until then we have to keep a watchful eye to make sure it doesn't pop back out.

Ahh..... it just gets better and better.

Nasal Stints

Tomorrow Jackson enters the nasal stint part of the NAM process. We found out last week that his gums are in line now - amazing! So the nasal stint process should take approximately 4 weeks and then Jackson will have his nose and lip surgery. If all goes according to plan, he should have this surgery at the beginning of May. We'll let you know when we find out his official surgery date.

We have been overwhelmed by your support of us - thank you so much for your prayers and gifts. We are blessed with incredible friends and family.

First Smile

Sooo... Jackson smiled for the first time yesterday... at his toys! Yeah, that's right, not at mama who spends her every waking moment (which are quite plentiful these days) loving on her little man... My mom and I were on our way home from LA on the train and he was in his car seat. He stared at his toys very intently for awhile, then began to crack a smile that must've lasted for at least 5 solid minutes. It was the cutest thing I think I have ever seen! Only wish it was at me... I guess it's true what they say, "Boys love their toys!"

Improving

Jackson is now home. He is still fighting RSV but improving every day. The doctors said he will most likely have symptoms of the virus for another couple weeks but should continue to get better. Hopefully we'll be able to pick up where we left off in the NAM process again this week.

Health Care

Jackson is still in the hospital being cared for and getting closer to going home every day. His vitals are good, and his breathing is great. We’ve been told multiple times by the doctors that almost every 2 month old kid (or anywhere close) that they’ve had come in with RSV has needed oxygen the entire time, and they’ve never seen a baby get all the breath they need on their own in spite of the virus. So we’ve got a fighter. Hopefully he’ll be home soon.

We’ve learned a lot of interesting things about hospitals and health care since this whole thing began, and it’s combination of ridiculous, annoying, and ironic. For one, it turns out that the nurses in the NICU had been trying to get our health insurance to cover a vaccine for Jackson against RSV when he was in there to prevent this exact situation from happening. Health insurance wouldn’t cover it because the vaccine is considered too expensive. So now they get to cover a 5 day hospital stay plus medication and testing instead. Nice. I’m guessing they didn’t come out on top in that one.

Also it turns out the hospital we are at (Sierra Vista) is the only hospital with a children’s ward within 100 miles. The next closest is Santa Barbara, and after that the next closest is in Fresno. And the hospital we are at has a grand total of 6 beds. The explanation for it? They don’t make enough money off of the children’s ward so all the area hospitals have either closed them down, or cut down the size.

We lucked out because there just happened to be ONE open bed when we admitted Jackson. Not so lucky.. the 4 families since then (that we know of) that have not been able to admit their children and have either had to drive to Fresno or wait.

Welcome to our health care system.

RSV

Jackson was admitted into Sierra Vista hospital today. On Sunday he came down with a cough that has quickly progressed into a virus - RSV (Respiratory Syncytial Virus). This virus can quickly turn into pneumonia if not monitored closely, and in Jackson's case, due to his cleft, this virus poses a more serious threat. He is currently on an IV to keep him hydrated as well as monitors for his heartrate, oxygen levels, and respiration. Please keep him in your prayers, that he would recover quickly, and that it would not progress into pneumonia. He is one tough little boy.

Updates

Just a quick reminder that if you would like to stay updated on Jackson's progress and any current news, you can subscribe to receive email notifications each time our journal is updated on his CaringBridge website or subscribe to our RSS feed here on our blog. We will be updating both regularly.

Thanks again for being such an amazing support to us during this process. Feel free to pass these sites on to anyone you like who might be interested in Jackson's progress.

NAM

Jackson was fitted with the NAM yesterday. This was the first step in the process. Next week he will be getting fit with the nasal portion of the device. The process of getting the NAM to fit well without irritating Jackson’s mouth was fairly long and tedious. We arrived at the clinic at 1:00pm and didn’t leave the hospital till around 4:30pm. But Jackson was a rock star, barely crying throughout the whole procedure (meanwhile, we were hearing the screams of the other babies in neighboring rooms). He was complimented by the doctor, saying that he is a very adaptable baby.

It has been a fairly long day today trying to get Jackson to eat as he is not used to the changes. And he can’t seem to stay awake. Yesterday must have worn him out. We were advised that learning how to eat with the NAM could be a process, so we’ll see how this goes. Hopefully our ‘adaptable’ baby will adapt very soon. Keep us in your thoughts and prayers.

NAM Donations

Many of you have been asking about how to go about donating to Jackson's NAM procedure (because it isn't covered by insurance). Here's what we're doing:

• If you would like to give a tax-deductible donation benefitting Jackson, Mountainbrook Community Church has agreed to process donations taken for Jackson's smile. The church will make out a check to the Craniofacial Team at CHLA. If more than $4000 is collected, that money will be donated to Operation Smile. Make your check out to 'Mountainbrook Community Church' and in the memo please write 'Operation Smile'. You can mail the check directly to: Mountainbrook Community Church, 4251 S. Higuera Ste. 200, San Luis Obispo, CA 93401.
  
• If you are interested in helping us out directly, you can mail us at: 410 Foothill Road, Shell Beach, CA 93449.
  

Again, we greatly appreciate your prayers and support. We will continue to keep you updated with Jackson's progress.

MIA

Sorry if we've been a little MIA the past couple weeks. Our lives have consisted of late nights, little sleep, plenty of poopy diapers and way too many tears, but we're making it through. At least, we hope we are. :)

To let you in on the latest happenings with Jackson... We are currently making weekly trips down to LA Childrens for a procedure called NAM (nasal alveolar molding). This past Thursday, a molding of Jackson's mouth was taken. This Thursday, he gets fitted with the mold. Every Thursday (for a few months) afterward, this device will be adjusted, helping to bring together Jackson's gums, lip and nasal cavaties prior to his surgeries. This procedure is $4000 and not covered by insurance, but we believe it to be the best possible option for Jackson. Because Daniel is unable to take this much time off for the weekly LA trips, my mom and I are traveling by train once a week. This allows me to take care of Jackson on the way and not have to fight LA traffic with a newborn. And thanks to Aunt Mary Trine, The Great for getting us to and from the Glendale Train station to LA Childrens - you are a tremendous blessing!

We are constantly updating our Flickr site with new pictures so make sure to stop by.