Jackson and I spent the past week in California visiting with friends and family. We loved seeing familiar spots and friendly faces. We were even able to make it to the gallery opening for the Jackson's Smile Art Show Benefit. We had such a wonderful time seeing friends and making new friends! Thank you to all who came to support Jackson and for the generous donations. We are slowly trudging through Jackson's medical debt but we know we are not doing it alone. We can't thank you enough for your loving support.
Unfortunately, Sunday night, while we were still in California, Jackson started to run a fever. We have spent the past 4 days trying to figure out what was going on since his fever has been consistently around 103.5. Yesterday, we spent 2.5 hours at the doctor's office running tests... Flu test came back negative. Blood test showed elevated white blood cell count. Following a chest x-ray and urine test, it appeared Jackson was on the onset of bacterial pneumonia coupled with conjunctivitis. So he's now on antibiotics and eye drops and we're hanging low.
To end on a happier note... Just wanted to reiterate how lovely it was to see good friends...
The gallery opening was a success! We raised close to $800 in donations and print purchases! Thanks so much to everyone who came out to support the cause. It was a wonderful night full of friends both new and old, cupcakes, wine, music, art, and a whole lotta love. Jackson and his Mom Halle were visiting from Texas and were able to make it to the show. It was fun to see him walking around and playing with the other kids. I was busy talking to people and didn’t take that many pictures, so here are just a few snappings.
Thanks to all who donated their time, energy, and talent to make a big impact on a little boy!
Remember Nautical Bean will be featuring Jackson’s Smile gallery for the entire month of November so be sure to check it out if you are in town. Also, you can always buy prints directly from the website or simply click the Make A Donation link.
For the month of November the artwork of Jackson’s Smile will be featured at Nautical Bean Cafe.
Read all about the heart behind this photography collaborative fundraiser at www.jacksonssmile.com.
Come join us Friday the 6th for the gallery opening from 6:30-9:00! We will be displaying and selling prints from 11 awesome photographers from all over the country. Buy a print, give the gift of smile!
Delicious cupcakes will be provided by Amy Bakes Cupcakes and live music by Modern Music Academy. It will be more fun than pushing a barrel of monkeys down a hill!
Daniel and I have been wanting to update you on recent news. We have been undergoing many different types of tests related to Jackson's syndrome. If you have been following our story, you may have noticed the numerous tests that have been run in the past few months.
On Monday, June 22nd, we went in to see Jackson's geneticist to go over the results of these tests. Here are the significant results that were found:
Abdomen Ultrasound - Jackson has a duplex left kidney. His geneticist has referred him to a local children's urologist. Spine X-Ray - Jackson has what is called lumbar kyphosis. He is being referred to a local pediatric orthopedics doctor.
There were some other elevated results in the blood and urine samples, including the AFP, or Tumor Marker. He will be tested regularly (every 3-4 months) in order to monitor and track these levels, and catch any possible tumor growth early.
We also ran a couple of other tests involving genetics. Daniel and I both had the Chromosome Microarray testing done because Jackson showed a slight deletion on chromosome 2. Neither of us had this same deletion.
Finally, I went through Carrier testing for Simpson Golabi Behmel Syndrome (SGBS). As previously stated, SGBS is X-linked recessive inherited with a slight possibility of what's called de novo mutation. Ever since we found out about Jackson's diagnosis, we have believed that I was most likely a carrier for this syndrome, as that made the most sense to us. If you remember, on Jackson's 1st birthday I wrote:
Simpson Golabi Behmel Syndrome (SGBS) is an X-recessive syndrome. While I'm not entirely sure what this means, I know I'm the carrier of it. And this carries with it a heavy weight. I live each day knowing I gave my son a syndrome he has to live with the rest of his life, however short or long that life is. And I also live knowing he may be all I get, my one chance at biological children. I have a 25% chance of giving any other children this syndrome. I don't know if I can logically make that decision. We're not at that point yet, and honestly, it's too much for me to bear at this time.
On Monday, the geneticist went over my carrier testing results. She practically said it in passing. Daniel completely missed it, and I was staring at the piece of paper in disbelief: SUMMARY OF RESULTS: NEGATIVE. "Daniel," I said, "I'm not a carrier."
This began a week of trying to process this news, and reverse our thinking. I'm not entirely sure where we're at now. We're still a bit mind boggled.
I remember when I heard the news, I wanted to break down crying. The odds of us having a baby with SGBS are rare, extremely rare even. SGBS is classified as a very rare syndrome, with only 120 known cases in the world. But having a baby with SGBS as a result of a de novo mutation, even more rare. In that moment, I remember thinking what an incredible gift we have been given. What a beautiful, remarkable little boy. We have as much chance of having a child with SGBS as anyone in the world (without the gene). And for some reason, Jackson was given to us.
This also opens up the possibility of having other children. For nearly 15 months, we have been wondering at our ability to have other children, and other children with SGBS. We have considered IVF (In Vitro Fertilization) coupled with PGD (Preimplantation Genetic Diagnosis). SGBS is on the list of diseases that can be tested. That is no longer an issue.
As far as where we are now... We're, honestly, still attempting to wrap our heads around this news. For so long, we have believed one thing. We're not quite sure what to do with a completely different thing.
Jackson is an incredible little boy. So sweet. So fun. So happy. So loving. He's adventurous and smart and makes friends easier than I do. Yesterday I found myself, sitting with my hands covering my face, crying. In a few moments, I felt a hand on my shoulder. I looked up and there was Jackson, standing in front of me. I said, "Jackson, Mommy's sad." He then wrapped me in a bear hug. That's the perfectly wonderful little boy we have.
Jackson went in for surgery on Wednesday and today you wouldn't even know it! We seriously can't believe how fast he bounces back... The surgeries were successful and we are now on the road to recovery. Phew. One more down.
Today Jackson is 17 months and I just can't believe it! Time feels so slow in some ways and then vanishes so quickly in others. We are loving this season with our boy - he is so fun and his personality so vibrant! He absolutely LOVES people and he cracks us up! I find myself laughing regularly at his crazy antics.
The other day when I got him up, this is what I found:
Talk about bedhead! I still find myself laughing when I see it!
I also wanted to take the time to thank a couple amazing people who have given us incredible gifts. Gifts, not only thoughtful, but unbelievably personal and creative! These people are seriously talented!
First, I want to thank Vanessa of Beloved Jane - an incredibly talented artist and friend! She made me this gorgeous sterling silver necklace stamped with the following:
I can't even tell you how much I adore this necklace! Vanessa, I am amazed by the heart and creativity of your work. Thank you for giving me such a priceless gift. You can also find her here.
And it doesn't end there! Awhile back, I was reading my friend Emery's blog - this post to be exact. While reading I noticed an adorable blanket given to her sweet boy Myer. I loved it! So I looked up the company that made it - Admiral Road. I felt inspired by their sweet and creative designs and so I emailed them to let them know. A few weeks later I received this in the mail:
Admiral Road read our story and were touched by it and put a personalized blanket in the mail for Jackson. And it couldn't have been a more perfect choice! Jackson's favorite stuffed animal is his Curious George (he sleeps with it every night) and he absolutely ADORES monkeys! I put it up on his wall over his crib for now as he loves to look at it... What a beautiful, thoughtful gift. This blanket will be treasured for years to come.
I am constantly amazed by the generosity and grace displayed by people I come across. You inspire me. You move me. You overwhelm me. I want to be more like you.
We enjoyed our time in California - spent some quality time with family and good friends, hung out in some of our favorite Central Coast spots, celebrated my cousin's wedding, and even had our first overnight since Jackson was born (much needed)! We had a gift certificate for a night at the Cottage Inn in Pismo Beach and we were finally able to use it. We thoroughly enjoyed a mellow night away from our little man and were able to reconnect a bit.
A drummer like his Daddy...
Jackson and his friend, Stew...
We've been settling back into our schedule since we got back to Austin and are enjoying getting to explore our new home a bit. Jackson is doing so well in therapy that he may only need occupational therapy and physical therapy for a couple more months! He is progressing rapidly and learning so much these days. Speech therapy will be ongoing till he is much older, due to being born with a cleft. But he is learning to sign and even has a couple words under his belt ("more" and "go"). He nods in response to questions, waves "goodbye", blows kisses and gives hugs upon request. He is getting more and more fun these days - he is so social and independent.
Jackson's most recent thing is that he is standing up by himself and learning to walk. In fact, he did both for the first time on the same day! Crazy enough we were able to catch it all on video...
And yes, I am a tiny bit embarrassed about my laugh in this video... Oh well.
Tomorrow, Jackson is scheduled for another surgery. Originally he was scheduled for surgery on May 18th, but he woke up with a fever of 102.7 and a nasty cough. We called in and they said to bring him in anyway, and they would determine what to do. Because of the cough, the anesthesiologist decided to postpone surgery. He was able to get his new Mic-Key button G-tube in (because it didn't require anesthesia), and we're loving the convenience of it. He is also now able to wear two-piece outfits instead of onesies all the time - a total luxury. Because the Mic-Key has already been put in, Jackson will be getting his inguinal hernias repaired and will be getting circumcised. We aren't entirely sure what the recovery will be like, but we have been told to expect a rough first week. This little guy has been through so many surgeries for his age, he's pretty tough, but it's still hard every time to hand him over... and then get him back in a totally different condition. It's hard not being able to explain to him what is about to happen and prepare him for how he'll feel when he gets out.
We have so appreciated the loving support we have received from so many of you. And we are so grateful to those of you who have supported us through Jackson's Smile - you are truly making a difference in our life and in the lives of other children like Jackson.
A lot has been happening in our lives lately. Between appointments, tests, more appointments and therapy, Jackson has a pretty full schedule.
In the past few weeks, we have seen Jackson's geneticist, ENT, GI, new pediatrician and therapists. We have also run a number of different tests, primarily in regards to genetics and problems related to his syndrome. Some of these tests are a full abdomen ultrasound, chest and spine x-rays, blood and urine samples, carrier blood test (for me), and chromosome microarray genetics blood tests for Daniel and I. Phew. Since we found out about Jackson's syndrome, there have been a number of tests that have needed to be run, some even 3-4 times per year, to monitor Jackson's kidneys and other risk factors associated with the syndrome. None of these tests have been run until now, under the care of Dell Children's Medical Center. Just to explain a bit about why these tests are being run, I'll give a little bit of the rundown:
Abdomen Ultrasound - to check for kidney tumors and/or Wilms' Tumor Chest X-Ray - to check for heart abnormalities associated with SGBS Spine X-Ray - to determine the level of scoliosis Jackson has Urine Sample - to check for neuroblastoma Blood Sample - to check for gonadoblastoma or hepatocellular carcinoma Carrier Testing (Halle) - SGBS is X-linked recessive inherited with a slight possibility of what's called de novo mutation. This will help us determine exactly how Jackson got this syndrome. Chromosome Microarray Testing - There was a slight deletion of chromosome 2 in Jackson's DNA. Daniel and I are now being tested to see if this deletion was inherited or not.
If any of you are interested in more information specifically related to SGBS, this article has been the most helpful to us thus far.
In other related news, Jackson has another surgery date set. He saw his new GI doctor, and will be getting the G-tube he currently has switched out to a Mic-Key (skin-level device). Also, if you remember from last year, Jackson has two inguinal hernias. He had to go to the emergency room last year, and thankfully, the surgeon on call was able to push it back in. But we've known since then that he would need to get them repaired at some point. Lastly, Jackson was supposed to be circumcised in the NICU at Sierra Vista, but for a number of reasons, it didn't happen. Now, a few complications have surfaced, and because of this, he will be getting circumcised. These three procedures are set to take place May 18th.
Jackson is really progressing. He is crawling like a mad man, pulling himself up onto everything, walking along furniture, and using his walker regularly around the house and in the backyard. For example:
Jackson sees three therapists currently at Kid Therapy. Tuesdays he sees his occupational therapist, Cara. Thursdays he sees his physical therapist, Sara. And Fridays he sees his speech therapist, Amy. While it makes for a busy schedule, we so appreciate what they are doing for our little boy.
Or big boy... Jackson weighs nearly 30 pounds and is 32 inches tall. Everywhere we go, people constantly tell me what a big boy he is. I had this conversation with a nurse the other day:
Nurse: How old is he? Me: 15 months. Nurse: Wow. He is a big boy. Me: Yeah, I know. Nurse: But he's not chubby at all. He's all muscle!
That's our boy.
We fly out to California tomorrow. We'll be there for three weeks. My cousin is getting married on May 2nd, so we planned a trip around her wedding. It works out well because Daniel can work from the office there, so he doesn't have to miss any work. We are also looking forward to meeting the new additions! Our sweet friends, Darren and Jessie, just welcomed their son, Reuben Oliver, into their family. And our other friends, Ryan and Cole, are yet awaiting the arrival of their baby boy.
For those of you keeping up with Jackson's Smile, we just wanted to share how much we appreciate your support. Thank you to Jose Villa, Joel Flory, Riccis Valladares, Sarah Rhoads, and Gabe McClintock for their incredible and generous contributions. And thank you to all of you who have purchased a photograph in support of us and other children like Jackson.
For those of you who have followed our story, you may have noticed the running theme of one shattered dream after another. I'm not sure if any of you can relate. I think our story is not exactly the norm.
Beginning with the initial shock during our first ultrasound (at 12 weeks), there was found to be a nuchal translucency, at which point we had to determine whether or not to find out what that meant. Emotions raced inside me, every fear I've ever encountered looked me in the eye. We underwent the CVS procedure to find out what the cause of this nuchal transclucency was. Our doctors said it was most likely that our baby would either have Down Syndrome or Turner Syndrome, and there was a good chance the baby could die in utero. The results came back telling us we had a completely healthy baby boy; no syndromes were discovered. We were much relieved and encouraged.
Fast forward 8 weeks to our 20 week ultrasound, typically an exciting time for new parents. We were happily expecting to see our baby boy, his tiny fingers, toes, hands, feet... Somewhere in the middle of the ultrasound, the doctor appeared concerned and began looking more intensely at our baby's face. Finally, after what felt like hours, he told us what he saw. A bilateral cleft lip and palate. My heart sank. I couldn't hold the tears back. Our boy had a cleft, and the most severe kind.
This began months of trying to process this news. I researched all I could, reading books, articles, pamphlets, trying to wrap my mind and heart around our son's condition. However, the ache never seemed to go away. With the news of every healthy pregnancy to the arrival of every 'perfect' newborn, my heart would once again revisit its pain. I was never mad at anyone for having a healthy baby. I never wished them the same kind of pain I was encountering. I was just lost, confused, grieving over and over the loss of MY perfect baby, the one I had always dreamed would be mine someday.
I have had to give up many dreams. The dream of natural childbirth. The dream of cradling my baby when he was first born. The dream of breastfeeding. Many, many dreams big and small have been ripped from my grasp, pried out from my fingertips and have drifted away to Neverland as I have stood helplessly watching them fade into the distance.
Our son spent his first five weeks in the NICU. I can't tell you how many trips I made to and from the hospital during that time. Sometimes they let me touch him, sometimes kiss his sweet face, sometimes hold him between the tests they were running on him. I often sat outside his bed as he lie underneath the bilirubin lights since he was so jaundiced, holding his tiny fingers. I remember the first time they allowed me to hold him skin to skin, his little body on my chest. He fell asleep on me. And when they had to take him away, he cried and cried and cried. I remember tears filling my eyes as the nurse put him back in his bed.
They ran so many tests on him during that time. There were a number of other anomalies they had found and the doctors were avidly searching for an answer. With every possible test, there was a possible diagnosis. Daniel had to finally ask the doctors to only report to us concrete findings, no more "hypotheticals", as it was too much for my mind and heart to handle. I ached with every possible diagnosis.
We finally were able to take him home. We were so relieved... until the reality hit. We tried every bottle possible and no matter what we tried, our baby wasn't able to take more than an ounce down at a given time, most of the time he didn't make it that far. So we learned how to tube feed him, sometimes we could leave the tube down, sometimes we had to put it down every feeding. The older he got, the more challenging feeding was. Sometimes I still get a bit jealous when I watch a baby take a bottle or breastfeed.
I took my baby in for his 3 month check-up with Dr. Bravo on April 7th. It was then that we received the news that he has an extremely rare syndrome - Simpson Golabi Behmel Syndrome (SGBS). There are currently less than 120 known cases of this syndrome. It often goes undiagnosed as it can be mild to severe in form. The more severe cases are the most studied. In most of the severe cases babies with SGBS die prior to reaching two years of age, most often from heart failure or kidney tumors. We still have yet to find out the extent of what we're dealing with. My heart aches most days with the unknown.
SGBS is an X-recessive syndrome. While I'm not entirely sure what this means, I know I'm the carrier of it. And this carries with it a heavy weight. I live each day knowing I gave my son a syndrome he has to live with the rest of his life, however short or long that life is. And I also live knowing he may be all I get, my one chance at biological children. I have a 25% chance of giving any other children this syndrome. I don't know if I can logically make that decision. We're not at that point yet, and honestly, it's too much for me to bear at this time.
People say "time heals all wounds." I beg to differ. Time simply passes. I think it's what we do with our time that either helps us, heals us or keeps us stuck where we are. My dreams have been shattered, my hopes dashed upon rocks, my heart broken open and spilled out, emptying itself drop by drop as I walk through each day. But I want to live. I want to give. I want to love. So while I may be broken and you may see my flaws as if in broad daylight... While I may live each day in uncertainty and you may question whether I have any direction... While some days I wake up and can barely get myself out of bed and you may wonder if I have what it takes... I won't stop. I won't give up. I won't sit by and watch myself wither away. I see with eyes wide open. I feel with arms wide open. I ache with a heart that is familiar with pain. And I'll love with everything I have.
My baby turns one tomorrow. My broken baby is a whole year old. I love you, Jackson.
Here's a video of Jackson in the hospital, a couple days after surgery. The noise you hear in the background is why I was so frustrated with this hospital experience. But our boy is still so sweet, trying to play with toys but not quite feeling up for the task. I just love this little guy.
So, once again, it's been awhile... Life has been a bit crazy since Jackson's palate surgery. Seriously crazy.
First, to recap surgery. We stayed the night in the Ronald McDonald House prior to Jackson's surgery Wednesday, November 12th. We arrived at CHLA at 7:30am and began filling out the necessary paperwork. And then we waited. And we waited some more... And we waited a little bit more...
Finally, at noon, they were ready. Now, keep in mind, Jackson hadn't eaten since 9pm on Tuesday night. And we can't feed him ANYTHING because he has to have an empty stomach prior to surgery. Poor guy was really hungry. So we spent those hours finding creative ways to distract our hungry son until the time they called his name. I suppose distracting our hungry boy helped us distract ourselves at the same time. Sort of.
At noon we were brought to another room where we waited a bit more. Thankfully, it was not as long as the prior wait. We changed him into hospital garb and soon our boy was wheeled away from us, having no clue what was about to happen. Handing him over broke my heart because I knew when we got him back, he would be in pain and out of sorts.
Then Daniel and I waited some more. Jackson had 3 procedures done, so we knew it would take awhile, but we weren't exactly prepared to wait for the next 5 hours. His surgeons came to update us occasionally on how it was going. First, his ear tubes were checked. The doctor thought he would need to have new tubes placed, but, thankfully, the tubes looked great! No need for new ones. Phew. Next up was the gastroenterologist. His G-tube went in with no complications. Finally, the plastic surgeons and his palate repair. This was the longest procedure of the day. And it took longer than they anticipated.
Around 5:30pm, they finally called us in to see him. And he looked awful. It is ridiculously difficult to see your 10 month old like this. Not the baby I had left earlier. I couldn't help the tears. He was in pain. And I couldn't do anything to help him. He was also having issues breathing following the anesthesia, so he was on oxygen. Scary. On top of this, Jackson had a stitch through his tongue taped to the outside of his face. This was a precaution in case anything went wrong and his tongue obstructed his breathing, so the doctor could pull his tongue out of the way if needed by way of the stitch. Crazy. And I'm sure very comfortable.
And thus began one of the worst weeks we've yet to encounter together.
Jackson had to stay in Surgery Recovery for over 24 hours because there were no rooms open in the hospital. NO ROOMS. Typically, children only are there for a few hours at the most. So we have a baby that has just come out of surgery stuck in a large room, separated by curtains. Beyond frustrating.
26 hours after he got out of surgery, Jackson finally got a room. We were so happy and relieved... until we arrived in the room. This room was not a large room, however there were 4 cribs in it. I cannot even express the rage I felt. Every 20 minutes or so, our exhausted baby would get woken up either by another baby screaming, a nurse who HAD to check his vitals right NOW, or other families in the room laughing, talking VERY loud, playing the TV at a HIGH volume, and the list goes on. And this lasted until we finally left on the following Monday. I was not a very happy Mama to say the least.
We were originally supposed to leave on Friday. Then Friday turned into Saturday, and Saturday to Sunday... As far as his palate was concerned, the doctors could've released him on Friday, but the G-tube was the primary concern. Prior to leaving, Jackson had to be up to his normal intake of formula. And this took days. Not because it had to, but because there was so much miscommunication between the doctors and the nurses, everything took much longer than it needed to. And meanwhile Jackson is not getting any rest. We just wanted to get him home where we could take care of him.
Well, long story short (or not so short), we arrived home Monday to a very clean house thanks to my Mom. And the saga continues...
For the past 10 months, we have putting been this tube down into Jackson's stomach for every feeding. We mentioned capturing a bit of this process as he will be getting a G-tube tomorrow. Here is the proof (Oh, and I can guess what you're thinking... Wow, Halle is wearing STRIPED pants! Yes, but it was nearing bedtime and I was in my comfy Pj's. Perfectly acceptable.)...
We leave today at 1pm to drive down to LA. We will be staying in the Ronald McDonald House throughout Jackson's stay, well, at least one of us, while the other stays with him in the hospital. We could be there till Saturday or possibly Sunday. We will see. Please continue to keep us in your thoughts and prayers.
Having just arrived back in California on Sunday evening, July 27th, from Austin, you'd think we'd take it easy for a bit... You know, settle back in, those kind of things.
Well, if you know my husband, life never quite settles down. Monday morning we were in full force search-for-the-new-place mode. As you might remember, my parents had graciously opened their home to us for a few months while we attempted to pay off some of the looming medical debt we had acquired since Jackson entered this world.
Long story short, by Wednesday the search was over and we were set to move into our new place in Grover Beach on Saturday (thanks to the help of our fine friends Tim, Travis, and Los Dos Ryans, you know who you are)! Yeah, talk about fast! And let me not forget to mention that Jackson had his first Craniofacial Team appointment on Thursday, July 31st at Childrens Hospital LA. Needless to say, all of this made for one crazy week.
Well, we left that same Wednesday evening and drove down to stay with my Aunt Mary and Uncle Denny (Jackson knows them as Aunt Mary The Great and Uncle Denny The Great!), who live fairly close to CHLA. We thoroughly enjoyed our evening with them; we even had the luxury of sharing in their hot tub. When we got up early the following morning, the coffee was already brewed and ready for us and we left their house with cups in hand. Thank you for your hospitality!
We weren't quite sure what to expect at Jackson's first Craniofacial Team appointment. We arrived a bit before 8, checked in, and entered the waiting room, filled with other cleft-affected kids and their families. Little did we know then that we would spend the majority of the day in waiting rooms!
We saw many people that day; social worker, geneticist, audiologist, speech pathologist, ENT, and his plastic surgeon. Eventually, a dentist and orthodontist will join his team.
This was our first time talking with a geneticist. Due to the rarity and possible severity of Jackson's syndrome, it has been recommended to us to pursue further genetics testing. There are two main forms of SGBS, one of which is more severe than the other. We will most likely have Jackson undergo testing to determine which one he has. It also looks like I will need to go through genetics testing since we know that his syndrome is X-linked recessive.
As far as other important takeaways on the day, the ENT mentioned that she was unable to see the tube in his right ear, which is not a good sign. They will most likely need to check tube placement and possibly put in a new tube during Jackson's palate surgery. Dr. Urata, his plastic surgeon, put in a booking slip for his palate surgery and we now have his next surgery date: October 8, 2008. One month out! Crazy.
We moved into our new place in Grover Beach on Saturday, August 2nd. We're loving it! And Jackson finally has his own room! There is plenty more to share from the past month and I will try to get right on it. Until then, I'll leave you a couple pics of our boy... 8 months old today. He's getting so big.
Since Jackson still has an open palate, he is unable to hold his pacifier in his mouth like most babies. He, however, figured out a way to make it work and it looks like this...
I really can't believe Jackson is already 6 months old! Well, sometimes I can. It has been a LONG 6 months. But still, time is moving along and today I'm taking a moment to reflect.
Jackson, 2 days old. Our 6 pound 6 ounce sweetie:
One month old, finally home from the NICU:
2 months old, beginning the NAM procedure:
3 months old, NAM with nasal stints (we hated this):
4 months old, just out of surgery. What a trooper:
5 months old, recovering:
6 months old, our precious lil guy:
So here we are... the 6 month milestone.
Jackson, although it may not seem like it all the time, I love you. You are my lil companion, my "bubba luv", my son. I'm sorry if I get frustrated with you at times, whether it's because I have to put down that tube over and over again because you can't take a bottle, or that you get so wiggly you spill the entire bottle I just pumped for you, or you just won't go to sleep because you're a night owl like your Daddy. It's not your fault. None of this is your fault. I know the past 6 months haven't been easy for you. You have had to endure in the first months of life more than many have to face in a lifetime. And yet, you smile. You have a way of brightening up the worst of days, of making me laugh when I lose sight of what truly matters. Thank you, Jackson. I wouldn't change you for the world. I wouldn't want you to be any different than the endearingly sweet, smart little boy that you are. You make me a more broken, kind, patient, and compassionate person because of what we have to walk through together. I love you my baby son. You are perfect in my eyes.
We're getting thru, day by day. It's all we can do some days to survive. Jackson is currently recovering from an ear infection - babies with cleft palate are more susceptible to them. We just keep reminding ourselves that some day life will be different.
Here are a few current pics of our boy 3 weeks post-op:
He loves blankets...
So much, sometimes, that he gets himself all wrapped up in them.
Here is a pic of Jackson right before we got in the car to head to LA. One last shot of our wide smile boy with no face gear on:
The trip down to the hotel was great. We made it into LA with minimal traffic and were able to get a bit of sleep before having to be at the hospital at 6am on Thursday morning.
We spent an hour getting Jackson checked out and answering pre-op questions, and then sat with him waiting for the surgical team to show up.
5 hours later, we had our boy back and in recovery. Lip and nose fully repaired and ear tubes put in place. However.... it didn't exactly look like our boy anymore. Totally crazy.
Say hello to the new Jackson. He comes complete with arm braces, and movable limbs!
He was awesome on the ride home. He has slept almost constantly since he got out of surgery and is drugged up most of time. He breathes about 100 decibels quieter and is really mellow right now. It's taking a bit of getting used to, but hopefully he'll be getting off the medication soon, and then we'll have our boy back!
We received some pretty intense news today. They had done a few different genetic tests on Jackson when he was in the NICU. One of them only came back recently and it turns out that Jackson has Simpson Golabi Behmel Syndrome.
It’s hard to explain all the details (the internet can help you out on that one) but the nutshell version isn’t all that pretty.
What that means could be an extremely wide range of things. First, he has several physical symptoms of the syndrome (which is why they checked for it) like the cleft lip and palate, a sacral dimple, etc. But that is all that is noticeable. He doesn’t seem to have any of the other major physical symptoms as of right now.
It could be that what he has now is the full extent of what will “present” in this case and he will be completely fine, and you’d never know.
It’s also extremely likely that he will exhibit some degree of mental retardation in the next few years as he starts to develop. Again, he might not, or it could be extreme. There’s no way to know until the time comes.
On the other side, kids with SGBS have a extremely high rate of tumors (usually in the kidneys), heart arrhythmias and other major problems. It is also a possibility that he could die before he even turns 2 years old with no warning or explanation due to heart issues.
If he does only exhibit the symptoms he currently has, then we have no idea what the mortality rate and life expectancy are. We’ll know more after we meet with genetic counselors at CHLA.
This looks like another one of our familiar scenarios where we’re presented with “either he’ll be fine, or he’ll have severe mental issues and die before he’s two” extreme options.
So today Jackson entered the final step in the NAM process. The nasal stints were adjusted and seem to be much more comfortable as Jackson has been much happier today than he has been the entire past week. Now it's just a matter of maintaining until his surgery May 1st. We are already seeing incredible progress. Here's his current look:
Can you see him? He's hiding behind the tape.
Back when Jackson was in the NICU we guestimated what we would've owed without insurance. We were way off:
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.
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!"
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.
He's home! After almost 5 weeks in the NICU, we finally have our son home. We are so thrilled and excited to start our lives together as a family. We are planning Jackson's Homecoming Party for next Sunday, February 17th. We will post the details again as we did last time. In the meantime, check out our Flickr site as we've posted some new pics.
