Surgery

This is the big one. The one I haven't wanted to write about. Talk about. Even think about. I kept saying I won't talk about his surgery until we have the date. Now we have the date and I have to think about it. 

July 8th. 

We are traveling to Cincinnati this summer for Jackson to have a Laryngotracheaplasty reconstruction surgery (LTR). They will cut out the damaged part of his trachea and take a piece of his own rib cartilage to reconstruct his airway. The top hospitals in the country do about 10 of these a year. Cincinnati Children's Hospital is the leader in the world for this type of surgery and they do 50 a year. We will go out the week before for Jackson to have a week of testing to see if he's a candidate. If he is, he'll have the surgery July 8th. Then he has to stay in Cincinnati for about 6 weeks to recover. 

I've had a weird relationship with this surgery for the last few months, looking forward to it with both hope and dread. 

It's been my last shred of hope that Jackson will get better and go back to his normal life. I've clung to it with all my strength. This is what we're working towards: keeping him healthy, getting him stronger, getting him to Cincinnati for surgery. And I'm terrified he won't be able to have the surgery. 

But I'm also just as scared he will be able to have the surgery. This surgery feels too big. He's already been through so much this year, how can we already be doing more to him? And what if it fails? When you've been holding on to hope so tightly, it's scary to let go. It seems too good to be true that the nightmare we have been through this year, could really be undone this summer. And aren't we always taught not to trust something that seems too good to be true? 

So I'm scared. I'm scared he won't have the surgery. And I'm scared he will have the surgery. But despite our fear, we're moving forward. We're making plans. On to Cincinnati. 

Jackson's driving the bus and we're along for the ride. 

Thank You

I still remember vividly sitting in the surgical center waiting room while Jackson was having his tracheotomy. It was after 8pm. His surgery had been pushed back several times. It had been a long day of anxiously waiting after an even longer 3 weeks of anxiously waiting and hoping he would get better. We had once again declined offers from family and friends to come sit with us while we waited during the surgery. We were drained, emotionally and physically, and just wanted to be alone. 

But as we sat in the waiting room I remember looking around to see families everywhere. Even that late there were several other families waiting. There was one in particular that must have had 15 people waiting. All in matching shirts with balloons. I have no idea what kind of surgery their kid was having or what kind of battle they were up against. Maybe it was an easier one. Maybe it was harder. But I just remember thinking they looked too happy and at ease to be in a children's hospital. It reminded me of when my father in law was fighting cancer and the whole family showed up to the hospital in matching shirts every single day he was there. The doctors and nurses all knew who the Parkers were. My father in law did not have an easy battle but I bet there were other patients and families who were fooled into thinking so because he had such a large team there to cheer him on, make him laugh, be his support. I bet there were times another onlooker thought 'they are laughing too hard to be at the cancer institute'. As I watched that family, thinking of our family, I turned to Hunter and said maybe we're doing this wrong. Maybe we shouldn't be trying to do this alone. 

It was after that night we stopped fooling ourselves into thinking we could do this alone. We let down our walls we had put up thinking they were protecting Jackson. Protecting ourselves. From what, I'm not sure. We let go of the thought we could do this all alone because we weren't meant to. We are fortunate to have such an amazing family and friends so willing to help us out.  Since then we have been absolutely and completely blown away by the generosity of our friends and family. Words will never do justice to the gratitude in our hearts for all of those that have helped us in so many ways. Jackson is stronger, healthier, happier for the love and prayers he feels from so many every day. Thank you. Thank you for your prayers. Thank you for your generosity. Thank you for your support. Thank you. 

Beautiful Noise

Jackson losing his voice has been a tough pill to swallow in all of this. It was one of those things we didn't even think about until after he had gotten the tracheotomy. When Jackson first got really sick and was intubated the silence in his room was noticeable. And we didn't like it. Hunter kept a steady loop of soft music playing for 2 weeks because we couldn't take the silence. We would torture ourselves watching videos of Jackson running around, yelling over and over just sobbing. Praying for the day when we would see him like that again. 

Because Jackson has so much scarring in his airway now he is not able to push enough air up around the tracheostomy and talk. Removing the feeding tube in his nose reduced a little pressure his esophagus was putting on his trachea allowing him to make some small noises again. But not enough for a speaking valve. 

But the thing is Jackson doesn't need his to voice to make noise. Lots of noise. Beautiful noise. We worried so much about how he would communicate with us. How would we know what he wanted. Or if he needed us since we couldn't hear him cry. But Jackson has picked up sign language so much faster than I imagined. And now he communicates better than he did before (which was mostly just a combination of pointing and yelling with a few bye byes thrown in for good measure). 

I put together a video of the signs Jackson has learned so far. The first clip is the last video I took of him talking on December 27th. Watching it doesn't make me cry anymore. It makes me proud to see how far he's come in his communication. Especially now that I know he will have no problem continuing to make noise. Lots of noise. Beautiful noise. 

9 Months

This post is for Riley. 

The second child.

The healthy child. 

The not forgotten child. 

A family friend came to visit Jackson in the hospital a few months ago and he asked how Riley was doing. I told him she was getting spoiled with two grandmas there taking care of her while Hunter and I were consumed with the scary reality Jackson was facing. He said oh that's good, it's always the healthy kids who get forgotten. I know he was referring to his own childhood having gone through a sibling having health complications. I know he wasn't bitter and didn't mean anything by the comment, it was just the truth of how he had felt at the time.  But it breaks my heart to think of Riley saying that in 30 years. 

Even being a preemie, since day 1 Riley has been an easy, dream baby. She has always been a great eater, great sleeper, and just an all around happy baby, hardly ever crying. Especially in comparison to her wild older brother running around, causing chaos everywhere he went.  She always seemed so calm and easygoing. It has been a long running joke to tease me about not forgetting Riley because she is so quiet you might forget she was there (not because I ever actually have forgotten her!). 

So this is for Riley so I can always look back on the amazing things she is doing right now. The things you think you will remember forever but in reality the details will already begin to fade within the year. 

Happy 9 months sweet girl!

Not really crawling yet but is trying so hard. And between rolling, pushing backward, army crawling, and something that looks like an inch worm...is managing to make it across the room before you know it. 

Loooves to eat. Everything. Except green beans. Those make her gag and cry. She's a carb lover at heart like her mom. Oatmeal and Cheerios are her favorites. But she also loves carrots, peas, bananas, and eggs. She makes the funniest face while eating tart things I can't help but keep giving them to her even if she doesn't love them. 

Has two teeth. On the bottom. Razor sharp. Is still nursing. Enough said. This also causes her to test the deliciousness of things edible or not. 

They may be tiny, but I know they're there. And I just noticed that is a mustache changing pad, the joys of big brother hand me downs start early Riley. 

Loves bath time. Or as she calls it splash time. 

Is a raspberry blowing queen. Has a laugh that sometimes sounds like crying. Is learning to use her voice. I swear says mama. Goes to sleep at night without crying. And is all around just a sweetheart.

We love you Riley. You will never be the forgotten healthy child. Even if your mom is a little late putting together your baby book. And just know from one second child, little sister to another... I feel your pain. 

Hospital Birthdays

Our family is getting pretty good at celebrating hospital birthdays. Jackson actually had a really special 2nd birthday here last month and my 30th birthday was pretty awesome too. Actually I would go so far as to say it was one of the better ones. Turning 30 was a great time to reflect on how much has changed in 10 years. A few friends shared some throwback photos and I can't help but look at that crazy 20 year old college girl and laugh at the problems I thought I had then; at the carefree, optimistic way I approached life assuming things would always work out, thinking nothing bad would ever really happen. I definitely never imagined my life being where it is now. 

My mom asked what I wanted to do for my birthday and at first I felt too guilty to celebrate. I worried it was too selfish, what would people think of me if I left Jackson for a bit. But after some encouragement from my mom I realized it was ok to leave the hospital for a little bit. It was ok to still take a little me time. It was ok to still celebrate my birthday. So thanks to a lot of help from my parents and brother-in-law and sister-in-law who all helped watch Jackson and Riley (it takes a village!) I got to enjoy a perfect day that made turning 30 feel pretty good. Even though Hunter and I spent the most of the time talking about mucus (yes this is normal dinner conversation to us, obsessing over the thickness of the mucus in Jackson's lungs), and hospitals, and upcoming surgeries...Hunter and I both agreed it was the lightest our hearts and minds have felt in months. 

I am so glad we took the opportunity because Jackson is coming home today. While we are thrilled to have him home again, we are nervous. And we know that we will not have the opportunity to go out together like that again for a long time. One of us always has to be with Jackson. He can't be left alone with anyone who is not trained and prepared to deal with his trach coming out and resuscitating him. And that's a big ask. 

So while Jackson was in a safe place I'm glad we took the chance to soak up some sunshine, savor that cocktail, reflect on the past, and start to look ahead to our next challenges. Here's to another great decade and hoping that in 10 years we're sitting back, watching two healthy kiddos run around, with hospital life a distant memory, thinking wow I never thought my life would take me here. And maybe enjoying that cocktail on the beach next time. (Hint hint Hunter 😉)

Eating...it's kind of a big deal

This will be a quick update because Jackson is having surgery this afternoon (or as we speak because I was slower to post than I intended) to put in a more permanent feeding tube into his stomach. 

Which on the plus side means we're getting this adorable face back!

But on the down side it should make the game "where's your belly button" more interesting with an extra button on his belly. 

Eating has been a big challenge for Jackson for a long time. After all the medical things he has been through he developed an oral aversion. He wouldn't chew on his fingers, toys, and gave a big 'no thank you' to any solid food. Our saving grace was he was still ok with his bottle. That was until this January when all these issues started and now he's refusing the bottle too. So he will be getting a g-tube while we work on his feeding therapy. 

I thought this was an amazing article that really explained oral aversion and the options for therapy if you're into that sort of thing: http://mobile.nytimes.com/2016/02/07/magazine/when-your-baby-wont-eat.html?mwrsm=Email&_r=0&referer=

On the flip side there is this girl who loooves to eat and made for a fantastic cafeteria breakfast date this morning even though she stole all my scrambled eggs 

I'm being light about this surgery because 1. Optimism and humor is how I deal and 2. It is pretty common surgery and there are usually no complications, but we know how that goes...

Most kids

"Most kids..."

I think these are my least favorite two words in the English language. (Except for moist and the way my husband says mother, think old fashioned kid who's in trouble 'yes, mother'...um no I'm young and hip and a mom thank you very much. But that's probably too off topic here...)

Back to my hatred of any sentence that starts with "Most kids..." There is safety in numbers and when your kid isn't following what most kids are doing you feel like a failure. To be clear, not that your kid is a failure, but that in some way you failed them. 

But what do you do when it's something big and scary that your kid isn't doing like they expect? Where is your safety in numbers? What are you supposed to believe or expect then? 

Less than 10% of babies are premature. Less than 2% of those premature babies develop subglottic stenosis (narrowing of the trachea caused by scarring from intubation). Of those 2% who receive a series of procedures to dilate the trachea 0% end up with no airway and needing a tracheostomy as a result of the dilation. Zero percent! Awesome. Thanks stats. I hated you in college and I hate you now. 

Over and over again doctors have tried to comfort us with most kids statistics but our little Jackson continues to show us he's the exception. 

So here we stay in the hospital until they figure out why he is the exception to this latest rule. Why his lungs just don't seem to want to cooperate with this tracheostomy. So far I have resisted the urge to punch anyone...yet. But you can be damn sure the doctors are careful when they use the words "most kids" around me. 

But while we wait to figure out this latest issue, I'll share some most kids statistics of my own... 

Most kids don't have hair as awesome as Jackson's

"Yes, I just wake up with these curls, cause I'm awesome like that"

You know you wish you had curls like these

"Great Scot Marty!" Where's the Delorean when you need it? Get me the hell out of here! 

And I bet you most kids don't have a dad as awesome as Jackson's...

While trying to figure out the lung issue they told us it's a dehydration issue for 'most kids' so Hunter took fluid intake tracking to the next level with charting that would make any nurse jealous

And then he took it next level...level NERD...when he discovered he could project it on the wall. But he is one awesome dad and we can definitely eliminate hydration as a source of the problem  

New Normal

I always cringe when I think about the name I chose for this blog...New to the Parkers. I was so naive at the time thinking what an adventure having a baby was going to be.  In my mind I only pictured the good kind of adventures. Taking our new baby to the zoo, to parks, hiking, on vacations...I pictured myself as a very active new mom apparently. To give my pre-baby self credit, it has been an adventure but filled with more trips to the hospital than anywhere else. 

As cringe-worthy as I find the name it continues to be fitting. We are definitely in new territory here. As I have been reading about life with a trach kid and talking to others who have experience with this, everyone's favorite phrase seems to be 'new normal'. As in, it's not so bad you just have to find your new normal. 

Leading up to and right after Jackson got his tracheostomy everyone we spoke to was so positive about it. "This is such a great thing!" "He can breathe!" "He has a safe airway!" "Life will be so much better now!" After fighting my initial urge to punch every one of them in the face, I tried to embrace the positive attitude. New normal here we come! I started dreaming of all the ways this could improve his life. We had always kept him in such a bubble to keep him healthy. Hand sanitizer and bleach wipes were our best friend. We avoided public play areas like the plague. But suddenly all my dreams of taking him to do fun things came rushing back. I was determined to make this up to him, as he lay in bed sedated for a week I made all sorts of promises to him to take him to do amazing, fun things. I was determined to make this tracheostomy a positive thing. The first day he got transferred out of the PICU to begin his rehab and our training, reality came crashing down on us and I was the one getting the punch in the face. And the gut. And the heart. He wouldn't be able to go to the grocery store let alone any of the fun places I had started dreaming of taking him to, to make up for this horrible thing that was happening to him. I had no idea just how fragile he was. It was not one of my strongest days as a mom. But I took my selfish moment, mourning the loss of the life we had before. And then forged ahead on our journey of finding our 'new normal'. Our first full day home from the hospital, Hunter and I toasted to finding our new normal and then promptly went to bed at 7pm because it turns out our new normal is exhausting. 

Three days later we were still exhausted but feeling pretty confident that yes we can do this. Our new normal isn't so bad. Then that night Jackson decannulated himself (pulled out his trach) in his sleep and Hunter and I had to resuscitate him. Turns out that trach training and CPR class they make you take is no joke so if you ever find yourself in one, pay attention! After that happened we had people say to us I don't know how you handled that, I don't know how to respond to that except to say you just do. You don't even think, you just act. 

Two weeks later Jackson started having problems with his breathing and they told us to change out the trach to see if that resolved the issue. We couldn't get the new trach back in and suddenly that 'safe airway' the doctors promised us was gone. I was holding it in my hands and I couldn't get it in. I was literally holding my son's life in my hands and I was failing him. This is what our new normal looks like. It did eventually go in, and we were able to resuscitate him, and he is safe now. But I feel myself changing as a mother. I have now watched Jackson go code blue twice in the NICU, three times in the PICU, and twice at home. And my heart is breaking and changing and this is not a new normal I know how to deal with. And I'll be honest it's not one I want to deal with. I want to run away from this. I want to hide from it. I want to turn back the clock and change things. I want to fast forward to a time when I dream this is all resolved. I want this to all go away. I want a different new normal. 

And that is where I am at today. That is the brutal, honest, ugly truth of our 'new normal'.  We try to be so positive if not just for our own sake to protect ourselves from the scary reality but for Jackson's sake. He deserves it. As much as it feels like this is happening to us, the truth is it's happening to him and we're just here to support him. So now that I've let out all the scary feelings that I've been holding inside, I can go back to being positive tomorrow.

And to end this super depressing post, I'll share one story about the lighter side of our new normal. There is a Norovirus outbreak in the PICU so now there is a security guard at the door asking everybody about their bowel movements. If that doesn't just make you cry-laugh about your 'new normal', I don't know what will.

So cheers to finding our new normal! Let's pray it continues to change and evolve past this. And I promise to be positive again tomorrow. 

I'll leave you with this picture too because Jackson hugs are the absolute best and make you feel like it's going to be all ok. 

6 months old

Happy half birthday baby! How has 6 months gone by already? Realizing that six months has already gone by was definitely my wake up call that it all goes by so fast and to enjoy every minute of it. (And to probably start documenting it better again).

I often catch myself worrying about if he's 'doing' everything he's supposed to at his age. Is he eating enough? On his tummy enough? Growing fast enough? Playing with toys enough? Happy enough? I catch myself comparing him to other 6 month babies. 3 month babies. Premature babies. Always wondering is he on track? Are we doing this right? But I catch myself and remind myself to just enjoy every amazing thing about him. While visiting with another preemie mother I met, making small talk about is your baby doing this? Or that? As all new mothers do. She shared her favorite saying with me,

"A rose doesn't compare itself to another rose. It just grows how it's meant to grow. "

I thought it was such a sweet reminder that all babies are special and beautiful in their own way, and they are just going to grow at their own pace. 

So here a few things about our sweet, 6 month old, Jackson:

- Weighs 8lbs 8 oz

- Oxygen is at 1/16 liter per minute but we've starting turning him down to 1/32 quite a bit and that's the last step before being done with it

- Is already a little charmer. Loves to giggle and smile in response to you laughing

- Lights up when Dad comes home at night 

- His head had a big growth spurt, and won't fit through most newborn clothes, although his body still does 

- We think the large noggin is also why he doesn't enjoy tummy time as much lately, too heavy to lift 

- Starting to show a little interest in toys, will hold onto them if you put them in his hands

- Loooves his swing and the mobile on it, he calls out to the monsters on the mobile "aaaaahhhhh ooohhhh"

- Toots all morning long while he is waking up, so we sing 'Born to be Wild' to him every morning cause he's "getting his motor running..." and he laughs

- Has rolled from tummy to back a few times but not consistently. He sure tries hard though

- Finds his hands to be the most fascinating thing right now. He holds his hands in prayer a lot and is obsessed with putting them in his mouth

- Started sleeping 8-9 hours at night (I hate to even write it for fear of jinxing myself)

The week Jackson turned 6 months was a big one. We went to a Utah for Dr. appts (everything's good!), saw family and friends, took his first airplane ride to Henderson, NV to see Grammy and Grandpa, dipped his toes in the pool there for the time, and went to his first restaurant. 

We couldn't be happier with how wonderfully Jackson is doing. 

Jackson loves to be sung to, we got him to smile do big in these pictures because my Dad was singing to him. 

Discovering toys are pretty tasty

But hands are his first love

Can't beat pool time at Grammy and Grandpa's

Goodbye Utah

Moving Day Eve. It is such a bittersweet night. Tomorrow we will say goodbye to our friends, family, and first home. 

A house that Hunter and I literally poured our blood, sweat, and tears into with countless renovations. A house that taught us we are just not DIY kind of people despite our best intentions...we get it done but we usually learn how to do it the hard way along the way. Long nights into the early morning painting rooms. An entire summer dedicated to a sprinkler system, fence, and landscaping. Roughly 900 trips to the hardware store. 

A house that Hunter and I planned a wedding in, became Husband and Wife, and welcomed our beautiful baby boy home to.

A house that I thought I hated and made countless threats to destroy it. I have actually grown to love and am going to miss. (Even the dungeon wall in the basement, because how many people can say they have a dungeon in their basement?) This house taught us patience. It taught us strength and skills I didn't know I had. It showed me how truly talented my husband is. It taught us that it really doesn't matter where you live, it's who you're with that matters. And if I do say so, it turned out beautiful after all that work. 

A house that became a home. 

A home we now say goodbye to and start our next adventure in Gillette, Wyoming as a family. It is sad to say goodbye but it has been a long 6 months with Hunter working in Wyoming and only home on the weekends and we can't wait to be a family together again.

Jackson's NICU Stay Video

It took me 3 weeks to edit over 2,500 pictures and videos from Jackson's time in the NICU down to 3 minutes, but here are his first 103 days of life. It was quite the journey to go back through these pictures. He is truly our miracle baby and we are so blessed to have such a happy, healthy boy. It's amazing to see how far he has come. He was such a fighter and continues to fight on. FOJSP!

Day 103 HOME

And we're home!!! See ya NICU!

Day 102

Jackson day 102:  2468 grams or 5 lbs 7 oz. We are at the hospital rooming in tonight bringing the boy home tomorrow. He is hooked up to a Brady cardia monitor. If his breathing rate or heart rate are too fast or too slow it alarms very loudly. He is eating great. He is sleeping soundly right now. We will be here until the doc releases him likely tomorrow afternoon. We'll keep you posted.  FOJSP! 

Day 101

Day 101

Jackson day 101: 2459 grams or 5 lbs 7 oz. since he's not gaining very fast dr. Nold has put him back on fortified milk. But she said this will not stop him from coming home Monday. The pediatrician can monitor his weight gain from here. He is now on demand eating. So he can eat whenever he wants. He's taking full advantage, eating every hour sometimes and then switching it up to every 4 hours. This little guy will keep us on our toes for sure. FOJSP! 

Day 100

Day 100

Jackson day 100: 2453 grams or 5 lbs 6 oz. Jackson is doing wonderful. Dr. Berger told us the plan is for us to room in Sunday night so they can make sure we can take care of Jackson by ourself with his oxygen and monitors. Then he is all ours Monday. 2 more days! FOJSP!!! 

Jackson's Birth Story

I've been meaning to write this one for a while, and with Jackson coming home soon there's no time like the present. I'll try to leave out some of the details, curse words, and how I really feel about Dr. Arogyasami (who is horrible and downright negligent...ok I didn't leave out all of my feelings). Because however it happened Jackson is here with us, and he's a miracle that we thank God for every day. 

Jackson's Birth Story

I had been having intermittent pains since  Sunday but I just thought I had probably been overdoing it with packing and moving boxes. I figured it was probably just those Bracton Hicks you hear so much about. On Wednesday afternoon I started to worry because the pains were still happening and I hadn't felt Jackson moving as much. So I went in to the doctor and they hooked me up to a monitor. When I got there and they had me take a pee test like they do every time, I was bleeding a little bit. The doctor said that was nothing to worry about (just one of the hundreds of times as I retell this story I want to scream really?! REALLY?!?!). Once I was on the monitor they said Jackson's heart rate looked fine, I wasn't having contractions, it just looked like I had an irritated uterus. They sent me home and said it was nothing to worry about, just call if the pain or bleeding gets worse. 

Later that night the pain and bleeding both got worse. So I called the doctor and she had me go to labor and delivery to get checked. Again they hooked me up to the monitor but still said everything looked fine, no contractions. By this point the pain was nonstop, it just kept moving from my back to my stomach. They ran a blood test but apparently missed the part where my white blood cell count was off the charts. They called my doctor, who was on call, but never bothered to come in and check me. She just said if the machine said I wasn't having contractions then I was fine to send home. By this point it was 1am, I was exhausted, uncomfortable, in pain, and just wanted to sleep. 

I asked the nurse if I should be on bed rest or anything. But she said no that was not necessary, and I was fine to continue going to work. She recommended heat packs for the back pain. I didn't get much sleep and by the next morning was definitely in more pain but figured this must be normal since the doctor and nurses didn't seem worried. 

I went into work late since I didn't get much sleep. About an hour into a meeting where I had done nothing but grimace, pace around, and at one point even tried crouching on the floor in the corner I decided this wasn't normal (by this point my coworkers were probably the ones thinking really?! REALLY?! what is wrong with this girl). I called my mom to come take me to the hospital. (So thankful my mom happened to be in town visiting this week, don't know what I would have done without her). 

Hunter was in Gillette, WY so my mom called him and said we don't know what's wrong yet but I really think you should come home. Thankful she did. There is one flight a day from Gillette to SLC. He drove straight to the airport and made it there 30 minutes before the flight. He had nothing packed and had to argue with the ticket agent to let him through. I can just picture Hunter yelling in the middle of this tiny airport 'My wife's having a baby!' 

By the time I got downstairs the pain had escalated exponentially. We went to the hospital and they hooked me up to the monitor again which STILL said I was not having contractions. After an hour of me crying, yelling, and writhing in pain the nurse finally believed me when I said I think I'm in labor. She checked and, shocker, I was in labor. She got me the pills to stop labor and I immediately got nauseous and threw them up. They did an ultra sound to see how Jackson was doing and sure enough he had moved and was ready to make his grand entrance. 45 minutes after the nurse believed I was in labor, still no one had brought me more pills to stop the labor, my water broke. It wasn't until this point that I realized I was actually going to have Jackson today. 

Once my water broke it all happened so fast. The nurses kept yelling 'Don't push! Don't push! We have to get set up'. For those of you who have had a baby I'm sure you agree, yeah right! There is no 'not pushing', it is physically impossible. Might as well have been screaming don't breathe. A doctor had never come to check me during all this, but one came in who happened to be delivering next door (apparently that delivery was taking a little longer than ours). Two pushes later and Jackson was here. The doctor announced it's a girl! WHAT?! It took my mom correcting them three times for them to start saying it's a boy. (Really?! REALLY?!?! Sorry Jackson). 

Hunter's flight was delayed 2 hours but he made it that night. And the rest is history...extremely documented blog history. Welcome to the world Jackson Shaun Parker! 

After sitting in the NICU for 100 days I've seen plenty of babies come and go. I've watched them spend hours setting up for a new baby. One day when the NICU nurse who was on when Jackson was born was setting up for one I asked her what it was like for them to admit Jackson because they definitely did not have several hours. She kind of chuckled and said 'yeah labor and delivery let us know we had a 27 weeker but they didn't think you'd be delivering today. But I heard you screaming down the hall and knew yeah right, this is happening.' So glad they knew! 

They never really knew why I went into labor so early. Their best guess is my body had some sort of infection because of the extremely high white blood cell count and how fast he came. 

We're just so happy Jackson is doing well and will be coming home soon. Fight On Jackson Shaun Parker! FOJSP!!!

 

Day 99

Day 99

Jackson day 99: 2448 grams or 5 lbs 6 oz. he gained an oz finally. 14 weeks old! Jackson has been doing good off the diurel and steroid inhaler so far. Dr. Simmons took him off the MCT oil today. That is the last thing. Now we will just see how he does for a couple of days, if he continues to do well we are out of here. We learned today that when Jackson is hungry, he means now! He had a complete melt down waiting to eat while they had to fix his heart rate and oxygen monitor leads. But after he calmed down he was back to making only sweet faces. Can't wait to get this guy home, I know he'll keep us very busy and on our toes for sure. FOJSP! 

Day 98

Day 98

Jackson day 98: 2421 grams or 5 lbs 5 oz. Jackson seems to still be breathing good off the inhaler. So Dr. Simmons stopped the steroid inhaler today and we'll see how Jackson does tomorrow. It's so nice to see him getting off all these medications and getting ready to come home. FOJSP! 

Day 97

Day 97

Jackson day 97: 2412 grams or 5 lbs 5 oz. He's still doing great. He has just taken off with the eating. Now that he has that tube out and he's allowed to eat as much or as little as he likes, he's eating even more than they were requiring him to before. He's just so happy to not have that tube bugging him. So far things are still looking on track for coming home Monday. FOJSP! 

Day 96

Day 96

Jackson day 96: 2411 grams or 5 lbs 5 oz. Notice anything different about his adorable face? NO MORE NG TUBE! Last night his nurse said it came loose, so she pulled it out and decided he didn't need it anymore. (I really think they're just sick of us but I'm good with that 😉) Ever since then he's eaten every bottle! Dr. Berger thinks he'll be home by Monday! He wants to get him weaned off the diurel and the steroid inhaler before he goes home because those are difficult to manage at home and would require visits to the pediatrician every few days to have his electrolytes checked. So we are going to try weaning him from those starting today. Happy Happy Day! FOJSP!