Moving Forward

4 weeks post-op, The Pacman is healing well from all of his surgeries. The first week was rough. When Paxton first woke up he was in miserable, swollen, bloody shape (read: PAIN). It was awful to see him hurt so much and try to do anything to help him feel better. The poor little guy could just barely stand to be awake, so he spent most of his time sleeping, waking up just to writhe, squirm, and cry until the next pain med could be administered and kick in. When we came back home from the hospital 3 days later, it was so cute, I put Paxton down in his crib, and he gave as much of a smile and kick that he could before taking a 3 hour nap....He was happy to be back home!

About two weeks after all of his surgeries, just as Paxton was beginning to feel a little back to normal, he got aspiration pneumonia. We went from one two-week setback to another. The last two weeks have been constant fevering, trips to Drs., hospitals, and the ER. We prefer caring for Pax at home and, fortunately, have been able to keep him here, even though we have wondered at times if we did the right thing. His lungs have been a wrecking ground. I am hoping he is really on the mend now as he has been fever free the last two days. I miss the rolling, happy, energetic Pax we know! Last night we had a glimpse of that so I'm hoping for good things to come.

On a happier note, while I thought Paxton's oral aversion would be worse after having a prosthetic palate screwed into his mouth, ironically, his oral aversion has significantly decreased. It makes me wonder if it might have bothered him to even just open his mouth before, if even the air coming in was uncomfortable. A week ago his thumb finally made its way to his mouth, chewing, exploring, and smiling all the way. This was a happy moment! Something so normal and purposeful and good. Because of how often he began doing it, I started trying to give him a bottle and he did better than any other time we have tried in the past. I got a little reprimanding for doing that without a clearance from a doctor (excuse me for being an excited, normal mom, right?). So we had our swallow study this week (feeding him a bottle under video xray to see what happens with the fluid, and if his epiglottis can indeed close off his airway when he swallows so he doesn't aspirate). Luckily, they confirmed that, at least there, there was no sign of anything going down 'the wrong way'. So, approval granted! Mom can be a mom again and work on feeding! Can you believe it?! I feel like I am graduating right along with Paxton. Just this week we have gone from having Occupational and Vision therapists, to now adding in Feeding and Physical Therapists. Hallelujia. It feels so natural to see a bottle in his mouth and I have GREAT HOPES that it will become something comfortable and possible for him. 

He is also progressing in his physical strength and abilities. Only a special needs parent (no offense to the others :) knows the extreme JOY that comes from seeing your child get stronger everyday, especially when it is something you have to work at so hard just to do something so small and normal that we mostly take for granted. To wobble a little less when upright, to lift his head higher off the floor at tummy time, to roll to one side of his body, after working on these things for 6 MONTHS it is a happy thing to see some progress! Yippee Paxton! 

Although this month has been a rough one for Paxton, since my last DREARY post (sorry about that), I feel like Paxton has improved so much.  He is still 13 lbs. but loves rolling all over a room (in his own cute way), he is stronger in all ways, including that he does so much better on the "nose" (his filter that goes over his trach and hooks to his oxygen tank when we go out of his room, away from his three machines that produce oxygen and humidity), which has made things a world better. Although it is A LOT of work to pack up everything, if Paxton is feeling good, we can now bring him downstairs to roll on the floor there, have a lovely ride in his favorite swing, sit on mom and dad's lap for a meal (oh my goodness just this is something I LOVE being able to do...so simple), or try going outside with him. I say try because Paxton is so sensitive to light (because he is not used to the full outdoor light, and because his galucoma makes his eyes so much more sensitive). Most of the time, even in the shade with his wide-brimmed hat and baby sunglasses, he "shuts down"- just closes his eyes and turns in to me-  BUT, it is getting better. It is all GETTING BETTER. What a thrill and blessing. I do still have days that I just want to pretend life was normal and I could just go hop off with my kids and do whatever fun summer thing I wanted, like I used to, but...it's okay. That's not what life is and I'm still very grateful for the life and family I have. And just so grateful there is improvement. There are shining moments and tender mercies and many happinesses that come from what we are doing. And when I can let other things go, I know this is all the most important stuff right here. And my kids won't suffer too much if they go a year or two without all the activities and lessons that could be had. Before we know it Pax will be two and I can't wait to see how much things have changed. (Uh, ok, I hope some things do!) Right now just knowing he is almost one is crazy. And exciting. And so awesome.

This last Monday was a great day for us as a family. Although the holiday started rainy (surprise), the sun peeked out and we were feeling adventurous. While it sounds so boring, like why would this be our FIRST OUTTING ANYWHERE AS A FAMILY (not to a doctor, of course), it was important and meaningful to us. I can say that we have felt strongly that Paxton has had many angels supporting and comforting him so many times this past year, if not daily, and it's easy to think that if he were to have angels tending to him at times, that it would probably be some of our close relatives on the other side. What a special day it was for us to go to the gravesides of my grandparents and thank them for their probable presence this last year. They were (are) all amazing people and taught us so much about faith and love and family. What was even better was that Pax did SO WELL. Many times that we take him out of his room, or especially go in the car, he really struggles. But he was so peaceful, happy, and easy. (If you saw us you would laugh that I just said easy.) It was just so fun for us to be together as a family of five, going somewhere in the car just because we wanted to, and not worrying about the other half or having to hurry back or whatever. I think Pax really enjoyed being outside that day. :)

So good things. I'm very grateful. I feel like with the winter, a bit of my clouds have lifted and I'm feeling like more of the person I was before. It's just so great to add in some simple normalcies of life. I admire families so much who just keep moving forward and make things happen regardless of their circumstances. They make it look easy but we don't see how difficult it may be for them, or may have been in the beginning. I thought about this all one day as I was home alone with the three boys, trying to make dinner but I literally couldn't put Paxton down. I was holding him in one arm, wheeling the oxygen tank with the other arm, to and from the fridge, getting one item and walking it to the counter, and back and forth over and over. It was very frustrating and a little depressing. I thought about all those amazing people who lose their limbs and we see them all over YouTube- how much they have learned to do and now they are out motivating others and living these happy, full lives. I wondered...How did they get there? Were there days they just wanted to break down and quit, give up, at least cry a whole freaking lot? I think there had to have been. It just gave me strength to keep moving forward in this life of mine, and made me count my blessings in that moment. When I was about to break down and cry I had an ah-hah moment and literally thanked God for my arms and hands!! 'Cause I don't know how those people do what they do, but this, I can do this. (Gratefully I had a laugh that night when a friend came over and said, "Man, you know you've had a bad day when you are grateful you have arms!") but it's so true, I think we all have so many blessings to count! And I count the challenges as great blessings, too, because they make us care about the whys and the hows of this life and make us better people.

So we are doing great. I hope to post some pictures soon. 

Surgery Day

Paxton on his way into a triple crown surgery this morning- 1st cleft palate repair and prosthetic palate placed, ear tubes, and a urology operation. check-in bright and early at 6am. Taken back into OR at 7:45 and just got word all three surgeries are done(just over three hours) and although some were more difficult than expected (typical), they were successful! Can't wait to go hug and kiss my little angel. Hope his body and breathing will recover well!

Yeah Paxton go Paxton everybody say yahoo for Paxton yahoo for Paxton!

Return

(Too bad I didn't post this when I actually wrote it, Feb. 8th! A more updated post to follow soon.)

Ahh to resign from my three month blogging sabbattical. To be honest, I was not sure if I would be able to blog again. Life has taken on quite a new schedule, none of which lends too freely to blogging. Or any extra curricular activity for that matter, for the time being. Really, that is what has kept me going through most of this- knowing that there are many times and seasons in life, and right now, this season is wholly devoted to very simple things. Caring for Paxton. Caring for my boys. Caring for my marriage. Caring for my home - not so much. :) All get the front seat when they can and sometimes the back seat is the best I can do. But we are here, carrying on. How to organize the madness of my thoughts? The lessons learned, difficulties of the adjustment, blessings abounding, pleas for ____, a myriad of things...

First I should share about Paxton.

Paxton has been uber blessed being home. We both love being here.  Going back to the hospital now is a very hard thing for both of us. The sterile, cold environment...where suddenly mom is the expert and has to tell the nurses what to do and when to do them is...weird. With that said, it's not like I go anywhere. I have a very hard time not being with Paxton when he is in the hospital. I feel like he knows and is comforted by his mom, and leaving him alone in this boring, lonely place would be such a blow to his normal little world. Why give him one more thing to struggle with in a not so happy place? So I stay with him as much as possible.

Paxton has been back to the hospital for many specialty checkups and several sick checks...the first of which, after being home for a month, we realized his lungs were deflated. He was admitted for a week and put back on a ventilator at nights. This felt like a step backwards, but they had no question it would be better for him. It is more work: more to hook up at night, more alarms, etc., but at the same time, it does help him in many ways. It helps his lungs, his apnea, and his growth, so he is not exerting so much energy and calories to keep breathing, allowing his body to really restore itself at night. He is growing. He is now at 7 months, 11.5 lbs.!

Paxton has done some great things that have surprised me. He thankfully has his Daddy's coordination. He can reach and grab a toy hanging from his mobile after carefully watching it advance to the right position. He bats at toys and reaches up and holds the books I read to him. He also rolls to his right side from his back freely, back and forth, with huge grins after each roll. His head control has gotten better but his upper body strength is still lacking a bit. I get a thrill out of noticing what he intentionally does and does not do. I used to think all of his movements were completely erratic, and maybe they were, but now I know they are very intentional. Paxton will move his arms or legs to feel something as much as he wants, and can now keep them perfectly still if there is something he does not want any more of as well. He has a hard time concentrating, or looking at, anything when he is sitting up; he is much more used to examining things from a back-lying perspective. So we always have a lot to work on when we can. However, worrying about his reflux every hour of the day really puts a damper on what we can do: work, play, and therapy-wise. Paxton would like to be doing more, sitting up or laying flat more (he is beginning to get a little bored), but it's hard having to keep him at a 40 degree angle so much of the time to prevent reflux. (And it still happens much of the time regardless.) It is not safe (risk of aspiration) and not fun for him to be suctioned -nose and trach- after.

Paxton loves hearing a familiar voice and any sounds that his two older brothers make. Likewise how much his older brothers love to get down and play with him, kiss him on his forehead, hold his little hands, and play action figures over his head. They like to hold him at times and always want to come see if Paxton is awake and wanting to be part of their play. I've been so impressed at their care and sensitivity to him. They have never tried to pull anything they shouldn't, and they understand way too much about things that have never been said. They know that their baby brother always needs someone with him. Camden will say, "Mom, I'll stay here and take care of Paxton, you just go find ____ for me." Well I have actually said, "Okay, Camden," and while watching on the video monitor will find that sweet little 4 year old, rubbing his baby brother's head saying, "It's okay, Paxton, I got 'cha."

One day the boys came home from church with deliciously large gumballs, and Camden was so excited to show me and Paxton. It was fascinating to watch Camden's wheels turning as he looked at the gumball, then Paxton, then me, and asked, while putting the gumball to Paxton's tummy, "Mom, can this fit in Paxton's tube?" So cute! I loved that he wanted to share it with him and knew exactly where it would go. Camden wants to help me mix Paxton's milk and do anything else he can. The boys love to help me bathe him. Camden will put the shampoo on his head and massage his scalp while Mackay is famous for rubbing the washcloth all over him. Mackay gets mad at me every time I suction Paxton because Paxton doesn't like it. He will say each word with the maddest face and stern pointing finger, "No, no, Mommy, be nice a Paxton. No owies."

At the beginning of January, Paxton spiked a 105 degree fever and his heart rate got up to 187 bpm. I double dosed his anti-seizure med and we headed to Primary's in the middle of the night. At first they supposed pneumonia, then a viral infection, then by day three we were down to thinking it was simply a reaction to the flu shot. Thankfully. But from that visit we learned he was anemic and needed iron supplements three times a day. So things always work out as they should.

Paxton's eye exams have been great and his pressures are remaining low. Hallelujia!

Other than that, I really feel Paxton's immunity is growing. We have had head colds and so has he, and luckily nothing has ever settled in his chest so much that it didn't go away on its own. This has been a huge blessing to us and his continued growth. But every time a new cold emerges, we get very worried and hope it will go away like the last one. Such is the case right now and last weekend we did labs, xray, and RSV swab, but so far so good.

Nursing from our insurance ended, but, without saying exactly what happened (who knows what psychos are out there), let's just say God's hand has been working His way in our circumstances and amazingly, the very same week, we were able to be part of a program that will allow Paxton to have continued nursing at night. It goes without saying what a miracle and how happy I am, right?!!! But really, it is pretty amazing if you knew all of the details. It is nothing but a huge TENDER MERCY and blessing from our Heavenly Father and we are SO GRATEFUL! And we finally have consistent nurses who we love and trust and they love Paxton. What a blessing! Oh to be able to sleep at night! (Well I do have two other toddlers but you know what I mean.)  :)  It makes a huge difference from the nights I have to stay up on my own after a full day, and go again the next! We are VERY grateful!

People ask me how I do this all the time. How I'm doing. Two different answers. How we do this - The answer is simple, although doing it is not. The Lord/Gospel/Our beliefs, and Others' help. How we are actually doing? Loaded. Most of the time I can honestly say pretty good. But I have felt the urge lately to try to do more on my own, have less help daily, and while it is good for our family to learn how to do so, of course it is MUCH more difficult, trying, and tiring. It's hard on our two little boys, who have a hard time not doing more things and in more places ALL DAY LONG. It's hard on me going constantly one thing to the next with the kids but also being essentially stuck in the same place all day everyday.  I want so badly to be able to do it all by myself, but it is very hard to do. My back literally aches about half way through the day, and I feel like I need some advil every night before bed. I feel like it's a constant question running through my head how to do all of this, more and more on my own everyday. I want to not only be Paxton's full-time Mom, but Camden and Mackay's, too. How to do both full-time right now remains a mystery. And it's not an easy idea to hire a nurse for Paxton or help for the boys. I struggle with essentially every idea we have thought of. I know it will continue to come, just as blending other things has, but I don't think it will be a quick solution.

This last week we had an interesting experience. I was home with the three boys, and Dave had just taken off on a plane and a very huge storm was brewing outside. He had said he had a pit in his stomach all day to leave, and it always makes you wonder, does that mean something is going to go wrong...to him, to Paxton? Moments after his phone was turned off, the lights in Paxton's room flickered. It was so quick, I'm sure anyone else would not have thought a thing about it. But a moment later I had a feeling, 'The lights are going to go off... The POWER is going to go off!' I ran downstairs to get candles and flashlights, batteries, and matches. I felt myself rushing around on adrenaline as I panicked, what else do we need if the power goes out?! Of course we have a generator but had not set it up yet, and you never think it will all happen just the moment your husband has boarded a plane. Then I laughed at and got mad at myself for creating all of this drama, saying to myself, "Shannon, why are you making this such a big deal? The lights are probably not going to go out and then you will have stressed out and made it an anxious night for nothing!" Literally 3 minutes later, it went out. The whole house. (IE: ALL OF PAXTON'S EQUIPMENT, monitors, etc.) I pulled the boys off the counter and ran upstairs saying, "OK guys come on here we go, we have to get Paxton on his tank!" I was rushing, my heart was pounding, and I was grateful I knew how many clicks it took to turn on Paxton's oxygen tank in the dark. Camden came into the room and asked, "Mommy, is Paxton going to die?" I said, "No, Camden, of course not, we just need to take good care of him together, okay?" We got candles and flashlights out, Mackay was crying and scared, and even when we kneeled to say a prayer Mackay was shining the lights out in the hallway crying, "Bad guy, Mommy, Bad guy." I knew Paxton would be okay on the O2 tank, even though he doesn't like it much. He was crying already but if I needed to I could give him a med to cope for the night. I called the power company and the outage was expected to last at least 5 hours. I knew we could get by on tanks that long, but what about the suction machine, and pulse oximeter monitor? The batteries lasts 2 hours. Another scare...my cell phone battery was in the red! Lucky for me, I have, as I have said before, amazing family and neighbors. A brother in law brought a generator, a sister in law came to help with the kids, and my trained neighbor came to help at Paxton's side while we calmed and situated the kids. Another neighbor came to help. I felt completely at peace once we got the generator going and I couldn't really believe Paxton could be on all of his equipment during the outage, and there was nothing really more to worry about at all. My boys were having fun with their cousins and playing with flashlights. I'm so grateful for concerned and caring people in my life who help me not to go it alone in my toughest moments. I really do fear now where I would be mentally without them! Sometimes I really think it would be too much.

We are doing as Elder Uchtdorf advised, slowing down and proceeding through this turbulent time at a much slower speed. There is not much choice in the matter either! But there is a lot of doing without right now, and as hard as some of those things are to lose (regular freedoms and to do's), it really is okay. There are other things that are not okay to lose, and we have to work really hard to make them happen, to protect our relationships, with each other and the Lord. Is it the same struggle of balance as it was before? In principle, yes; in all actuality, not at all. It is much more intense. More constantly difficult. And I know we are doing our best. But even then the bow can't always be tight, and there are moments I simply want to escape.  Yes, it is absolutely a huge blessing to have Paxton home and a part of our lives, and WE LOVE HIM WITH ALL OF OUR HEARTS, but it's still hard to deal with how things are day to day, everyday. I wish everyday that Paxton could be weaned from oxygen. It would make such a huge difference in the equipment we would have to carry everywhere, the worry that goes with every minute, and the constant monitoring, both of machines and humans! It would make him so much more portable and life a little more normal for our family. I feel like we are always learning more on the horizon, surgeries or therapies, and it's not always comforting. The long road is starting to set in and I suppose it has affected my cheery temperament just a bit. But I do know that I can be thankful for so many blessings. So many caring people in our lives who have brought meals, babysat my boys, driven me and Paxton to doctors, cleaned our home, shoveled our walks, called, and visited. I would not be surprised if when I go to the other side Someone says to me, "You know you were the most blessed trach mom ever, right?" I don't think many others have the outpouring of service that we have had. We have amazing family, neighbors, and friends who have tried to be there in every way physically and emotionally possible. And we are so grateful. I really think I would have jumped off a cliff by now. Because just now, as I try to do more on my own, I definitely feel more of the weight. Of labor and loneliness. And I think of other moms and families with special needs children who live away from family, don't have such an aware or caring community, and feel like they have been given this huge challenge to deal with all on their own and I just don't know how they do it. I hope they have the Lord in their lives because ultimately He is the only one who can get us all through any of our difficult trials, our refiner's fires- some once given that will remain for most, if not all, of our lives. I pray everyday for myself, my family, and others with these trials that we can do it. That we will become what He knows we can be and that we can be what we need to for each other. If you know anyone, besides me, that struggles with a special needs child or family member, please, please, go help them! Ask what you can do. Visit. Call them when you can. I hope you would feel as blessed as they would from your love.

And today, just enjoy running an errand, whenever and wherever you want. Driving by yourself in the car without another adult or without it being on your way to the hospital. Playing with your kids in the basement or taking them outside to feel the warmer weather and light on their face. There are so many things I wish we could do and can't wait for the time we will be able to do them more again. With that all said, I count my many blessings everyday that Paxton is here and we have such an amazing support group. Thank you for being a part of it!

Grateful for Our Angel Paxton

I'm so excited to post today. Our hearts have been so full this THANKSGIVING. I'm amazed at the blessings that have been ours this year. Of all of the learning, growth, awakening, appreciating, accepting, and enduring we have all experienced. We have been such recipients of great love... Of others' service, support, and prayers, and of our own little bundle of joy and the love he expresses and engenders. We have been blessed with capable and experienced doctors, nurses, and specialists. We have great insurance! We have the best family in the world, helping somewhat almost everyday. Caring neighbors and friends checking in constantly. Technology that can keep our son alive (and loads of electricity to power it)! Grateful for a shower. To walk down to get the mail. For yummy food. My fireplace. Hot chocolate. Heat. My boys! My hubby. Our family family family. And of course I hate to be cheesy or over-expressing of it all, but I am so grateful for the scriptures, and for my Heavenly Father and Jesus Christ. I'm amazed at the the Plan and the all encompassing power, healing, and love they bestow. Trials are always hard but are so good, too, even when you are in them. I have loved coming closer to Them and knowing Them better, myself better, and learning how They can help us do all things... Amazing!!! Amazing the trust they place in us, but even better than that, how They help us to do whatever they ask of us. I have harder days ahead but do believe nothing is impossible. Hard, tiring? Yes. I always get caught in the anxiety and fear of being physically left alone to handle all of this, which I don't need to do until it happens, but even then, I just need to constantly remind myself I will NEVER BE ALONE. It's hard to wrap my head around that concept sometimes but I have had even small moments already where I have learned how powerful that is. As much as another pair of hands, His comfort and understanding are enough to get me through, and even more than that, to revitalize me.

So I am one blessed mama. Paxton continues to do well at home, adjusting to our new "fluora" of germs that are different at home than in the hospital; tolerating therapy and noise and other activities here fairly well. Yes, he has his hard moments and days, too, and times I think maybe he is getting sick. But overall, he is still here and not at the hospital or somewhere else so so far it's a home run!

Last night I was able to finish something I have been working on for a while (since well before Paxton came home). Something I've only been able to chip away at here and there when all of the kids have been taken care of (rare...this requires 2 other adults to be with the other children) or asleep. I have always loved photography and my own version of making videos. It started in high school. And while most of the pictures I have taken these last 5 months have been anything but professional and perfectly lit, they have been meaningful. Many are just with our phones. But it doesn't matter. I wanted to make something for our family that would summarize a bit of this time of Paxton's life. His story. What he has been through and overcome. He is a champ and inspiration in all regards. Not just superman, but a true hero to us. We could make a poster about him! What a fighter. With such a noble and valiant spirit. I almost feel guilty he was sent to us. That we get such a blessing of having him in our family to teach us everyday. His brothers love and look up to him and besides his physical 'owies', don't know anything is different about him. As far as I'm concerned, I'm not sure I believe there is either. He keeps defying the odds everyday. Now that I am home with him and doing things I have done with my other babies (Thank Heaven!!), I feel, in many ways, he is just like my other babies were. With that said, it will always be okay with me if he is not. I am happy for every achievement and normalcy he will experience, as it will probably only make his life better and happier. But maybe not. These special spirits have a lot to tell us about what makes one happy. We have a lot to learn!

So I'm so excited to share some of what we have experienced with our Angel Paxton thus far. It has been a difficult but great journey and one that we are so happy has turned out so well. I believe Paxton's story could have gone either way, and still always could, but he has been magnificently impacted by all of the prayers he has had offered in his behalf. Heaven has definitely shined on him, our Star, our Angel, and us.

This video is certainly special for many reasons, but one that must have special mention, is that the third and final song was created for Paxton, by a dear friend of our family, Hope Charissa. She is an amazing artist, singer, and songwriter, but to me, has just always been a cherished friend. I love her very much and cry every time I even THINK of the words she wrote for our family about Paxton. They touch my soul so deeply and I (and she) know- she was absolutely inspired when she wrote the words to this song. They are beautiful and I wish all of the pictures fit into her song, as every one was so perfect for her words! Thank you, Hope. The way you have blessed our family with your talent and friendship will always be a treasure! I hope one day it is "out there" for all of the other families who know their 'special' children were sent just for them, too. The last line of your song says it perfectly! I love you!

And we love you, Paxton. Thank you for blessing all of our lives.

He's Home!!!

I hardly know where to start! Every day has held new 'experiences' and things alike, too. We've had our ups and downs at home as well, but certainly overall are SO HAPPY TO BE HOME. It is not a light blessing to have Paxton here in our home with us, and inside I am amazed he is coping so well. It's so wonderful not having to leave our other boys everyday and have to drive the 50min to Primary's and back. It's nice to take turns and "come and go" from his room as we need to, instead of once only a day. With the blessings of being home have also come some new challenges, which we share with a grain of salt as our gratitude for this BIGGEST blessing is foremost in our minds and hearts.

Tuesday was an exciting and nerve-wracking day. I woke up actually a bit sick as I realized I was much more nervous than had yet occurred to me. Once at the hospital, things actually went pretty quickly because there was nothing else to check off our going home list! That was great and, again, more scary, too! It was really almost time to leave - to be gone - from all of these wonderful and full-time caretakers. Ah! 

Paxton had a tough time at first- being in the car seat and on his "artificial nose" for his trach (the portable version of his humidity and oxygen) was a lot harder for him. He started turning blue and we wondered if this was really going to happen or not! Then we realized only one of his switches on his portable oxygen was turned on! Um ya, glad we learned that little trick there! Then after all of the movement of going to the car, he was very upset. We had to take him out to calm him and realized he already had a poopy diaper. I actually loved that it was something so common to any baby. I can handle that! Once calmed and back in his seat, with only suctioning a few times, Paxton was asleep and soon we were pulling up to our house! We were welcomed by family hanging balloons and banners and taking pictures. It was so exciting to bring him in and literally sit in our home holding him, safe in our arms with the fire aglow and more than one other person gathered around (NICU rules)! We were loving every minute of it. The peace lasted about 30 min. when our equipment guy came to set everything up and teach us about it all. While he was there discussing with us, our nursing company came to "admit" Paxton into their program with many questions and signatures, etc. It was a busy four hours that luckily Paxton had mostly slept through. Trying to do his first feed in the meantime was a little nerve-wracking as I was not used to calculating everything out and I had wished they had sent me home telling me exactly how to do it (it was not simple)! When he woke up he was very unhappy still being on his "nose." It was sort of a rush to get him upstairs and finish up with the companies. Finally though, he was there ...here in his room! Baby Paxton in my nursery, with our family surrounding him. We all had the biggest smiles and he was very content and mesmerized looking up at all of us, too!

The rest of the night went fairly smoothly. Our first night, with our first home nurse, they sent us a sweet, awesome nurse... that smoked. It was sooo hard for me to sleep at all that night! I had so much anxiety I couldn't shut it off. It was a big enough step to have him home, not in the care of the hospital anymore, and to trust his care to someone new, but then quite another step to know that after all our disinfecting he was surrounded now by smoke! Needless to stay, I stayed up all night watching the video monitor and because of my sleepless night, I woke up a little stuffy and had to wear a mask for 3 days! Not the funnest in your own home but we will pay any price to keep our little babe healthy! 

Thanks to the help of our dear family and 24-hour nursing for the first 48 hours, a lot of time was spent getting all of Paxton's supplies and schedule organized and in my head. We literally had boxes dropped off when he got here and had a lot of sorting to do, including rearranging his room a bit to accommodate his machines and tubing. It was a little hectic at first, but I'm actually surprised how quickly it all came together. We had some follow-up appointments that Paxton struggled a bit with the car rides but eventually was calmed and back to baseline. We even managed to get in some family pictures on his 3rd day home! (Do you really think I could let that slide? Of course it was smart to do it when we had a nurse with us at the hip. :) And of course we've had stellar family continuing to help with our other boys while we are adjusting a bit to the new routine and conditions.

 To explain what makes it a bit challenging, Paxton is supposed to be in the same room as someone at all times. Because of his trach, if he were to reflux, cry, or pull out his trach, you wouldn't be able to hear anything. The sat monitor would go off but if you were not close enough to resolve the situation immediately it could simply be too late. Personally I would like to avoid emergency CPR as much as possible! For now this means being in his bedroom with him always, and physically be looking at him every couple minutes or so (if he is not already in our arms to sleep or play of course). As he gets older we can put him on his portable equipment more often and go downstairs for part of the day, but for now, it is very hard for him to be on the portable and more difficult versions of breathing. He and I have had two brave field trips to aid in mom's sanity: to mom's shower one day that by 5:30 was a must, and to our family room for a little noise one night (aka TV) after being alone all day. Dad ended up having to travel four days this week and I most definitely would have been sunk if people weren't still helping with my other boys and stopping in to give me a verbal hello every once in a while. I'm so grateful for being close to family and having incredible neighbors and friends who care so much about us. I'm grateful for their calls and meals and just plain thinking about us. I love you all! What blessings you are in our lives!

It is very peaceful being with Paxton all day. I actually don't mind doing what he needs at all. It is such a blessing and feels so right as his Mother. I remember the nurses saying, "Don't worry, soon you will be the expert." I don't know about "expert" but already I do feel like I know him best, what he likes, needs, dislikes, etc. Most of the time all is great and well, but obviously sometimes I am very tired. My shift begins at 7am and goes until 11pm (unless Dave or a grandma or someone else comes to be with him for a little bit). I leave to go to the restroom or to run down and mix his next feeding and that's about it. Our doctor reminded us the other day to "not leave Paxton for more than a few seconds." Okay!! Boy, am I grateful for nursing, which we have for 8 hours at night right now. If anyone knows of any organizations we can petition or appeal to to have our nursing last longer, please let us know!! I do not know how physically it is even possible for us to stay up all night, be mom and dad the next day, and stay up again the next night and on and on and on. If you can't sleep at night by him, how could you take a nap during the day when he always needs constant watching? Ah! One step at a time.

It truly is a miracle. Paxton is home and doing wonderfully well. I have wondered a few times if he was getting sick, when he is way up on his oxygen or needing a lot of suctioning, being very fussy for long uncalming periods of time, etc. It seriously seems like our prayers ward a lot of things away! And Paxton has definitely been one prayed-for boy!! I'm so humbled that he is home and we are actually able to do this! (for the most part :)

I have already learned so many lessons. The most obvious are:

1. You have to let people help you.

2. What matters most is all that matters.

3. God won't give you anything he won't help you to do. So,

4. We can do it.

I read the neatest scripture on Wednesday as I was having a difficult, tired, lonely, and a bit overwhelming day. Thinking about how to do this day-in, day-out "by myself" scares me a lot. Especially as I think about Dave being gone, family needing to "get on with their lives", my nursing ending, thinking about paying for a helper and our new electrical bill (8 machines running all the time), and trying to care for all three boys' different needs and attention, I was overwhelmed! This verse spoke so boldly to me.

"Fear none of those things which thou shalt suffer ...be thou faithful unto death, and I will give thee a crown of life." (Revelations 2:10)

Okay, that's it. Remembering to take it a day at a time and to be faithful is all He asks!

A difficult part of this experience, that I share with the most tenderness, was getting the news and attending the funeral this week of our sweet angel friend, baby Jane. My heart broke when I heard the news Monday morning that she had passed away. Home to that God who could give her rest! I was in tears as the weight of our two very different realities hung over me. I got to take my baby home, and my friends had to send their baby Home. I am so incredibly grateful for the Gospel. For the good news. The amazing news that Christ has atoned and died for us all and lives again and we all will be resurrected and restored to our perfect frame. Not the state we experience here. Not the state sweet Paxton or Jane or many others are in. I'm so grateful for the scriptures which helped to calm my heart and realize He is the maker and creator of all things, the giver and taker of life, and all things are according to HIS will and HIS plan. Her mom said it so beautifully at her funeral, that it is only sad for us, not for Jane. Sad because everyone who loved her will miss her so much, and happy for her to be back in the arms of Jesus. She also said something that just struck my heart. Jane was intubated her whole 4 months of life and, like Paxton, could never make a sound. She said, "How lovely that the first time you ever spoke or sang would be in Heaven." !  And from her Dad, "Your life of four months speaks of a lifetime." Absolutely. Jane has taught us all so much. These precious spirits are indeed gifts from God, bringing us closer to Him, more dependent on Him, and renewing our faith and trust in Him. I'm so grateful Jane's parents believe they will be with her again one day, too. She is a beautiful girl and I know is so grateful for the incredibly strong and loving parents and brother she was given. 

"Wherefore, fear not even unto death; for in this world your joy is not full, but in me your joy is full." (Doctrine & Covenants 101:36)

We love you Jane and Huebner Family.

(To see Jane's tribute, go here.)

Thank you for all of your support in helping to bring sweet Paxton home! We love you all. 

Check out our other post that shows our slideshow of coming home pics!

Welcome Home baby Paxton!

  

SUPERMAN HE IS!

Well we cannot believe it, but tonight we learned Paxton gets to come home tomorrow! Now I can handle a one day waiting period any day! We were so thrilled and asked a million times, "Are you sure?" Resounding yeses all around. It was a med issue that was giving Paxton fever, pain, and other non-desirable things. Now that we have that figured out, just look at our happy angel! Do you think he knows he's coming home tomorrow? And just look at those balloons in celebration! Oh I so hope we don't jinx it! But we had to share our excitement with all of you. I have never gotten as many smiles as I did tonight, and not just on camera, but at all! Yay for Superman! After 121 Days in the NICU, 17 weeks to the day, our SUPER Hero gets to come home! We are so thrilled. Ecstatic. SOOOOO GRATEFUL! Thank you all so much for your love and prayers and support. And I better not be posting again tomorrow with any other news! That means it happened and we are busy learning the ropes! Love you all! And so much thanks.

HOORAY!

Oh Boy!

Paxton has been doing so incredibly well. We have all joked that he would walk right out of there if he could. He has been loving sitting up, looking around, interacting with people, tolerating therapies incredibly well, and overall just been very comfortable and content. Mom and Dad, grandmas, and some special others volunteered and completed the trach, CPR, and g-tube trainings with us. We even roomed in last week (where we care for Paxton in a family room there in the NICU for the most part by ourselves, with most of his home medical equipment there to practice with) and had him do his 'car seat trial'. We have all been running around a little crazy this week preparing for the big day. People helping with errands, heavenly neighbors literally "detailing" my home, making phonecalls, appointments, and finishing forms and notes of all kinds. We have been planning for him to come home today so we could have Dad home for two weeks in a row, a chance for all of us to go through this big transition together. However, this weekend, par for the course of the NICU, plans have changed again.

I could hardly believe it when Paxton did not have a good day Saturday and officially, yesterday, his homecoming was postponed. He suddenly has a few things going on. He has some painful granulation tissue around his g-tube :( and is having some med problems. Paxton's secretions have also significantly increased (when I say this it means we are suctioning his trach very often and it is very thick, making it much more difficult for him to breathe). Normally when this happens, it is not long before we learn Paxton has developed another form of pneumonia. We were crossing our fingers that it was just from a new type of trach he got on Friday. Unfortunately, yesterday he spiked a fever, giving them enough reasons to do get cultures and do labs, and postpone his 'departure'. I am so sad. So sad for him. So sad for us. For his brothers. Everyone helping. Sad for the process to seem unending. It has been my biggest worry that soon after we get him home he will end up right back in the hospital from getting an infection... I'm beginning to wonder if he will ever go very long without them. I will hope so! He has only been off antibiotics from the last bout for 2 weeks. And he seemed SO healthy and happy! It was Paxton in a light we had never seen before, because he truly felt so good. Now I just ache seeing him all upset and uncomfortable again.

We do want the little guy to have the best 'healthy start' ever, so it is best to wait. But what a letdown. My home is dustfree, we are all healthy, and we are all so tired of the schedule. I can never complain because we have been so blessed with all of Paxton's improvements, and simply that he is here! I guess we should so expect this, this is just how having a baby in the NICU goes. For a moment it was just so real. SO tangible. And ask anyone that has talked to us, but we really were so much more excited than nervous to have him home. Be here as a complete family together. Get him out of the sterile white walls and gloves. Give him more holding, attention, care, distraction, interaction, and happy family life. I so wanted that for him and for all of us. It will come. It is just another setback. Everything has been completed now so we won't have to pass anything else off. Yes I have had my moments of grieving this weekend, I know it sounds funny, but it was a big deal and for it to seem so certain for 2 weeks... 2 weeks hospital time is a long time to get your hopes up! I shouldn't have been shocked but I was. Again, he is here, and having him healthy is the most we can ask for, so we go with that outcome wherever it means he has to be. Well, NICU, looks like we will be around a little longer. Hopefully just not too much longer! Maybe even still this week! We are ready, whenever it comes.

Thank you all so much for your help. Gosh, we have been so blessed by everyone's service and love. There isn't a day that goes by that we are not served physically and receiving love and support emotionally. We are extremely blessed and so grateful for the Gospel. It has put everything in perspective for us and given us so much hope and faith. My little Pacman is such a fighter and will continue to fight through all that he is given. "Hit Me with Your Best Shot" must be his theme song! I can't apologize for being so proud of him. He is just the sweetest and best.

Here are a few highlights from last week.

First and foremost, Halloween. Dave and I have always dressed up and this year thought our drs. and nurses would get a kick out of us trying to be them, like we do everyday! And our kids were... nothing other than SUPERHEROES, of course! That's what they are to us so it was all super fitting.

Paxton did great rooming in and so did we! (we think)

First therapy on a mat

loves being up to see things

Until next time! Xs and Os.

The Count?

I can't believe it, but I think we are really on the countdown for our little man to come home! It is crazy and true! Paxton has improved so much being on antibiotics and having a larger trach that now we are just working on getting his feeds back up and tolerated well with his new G-tube. Of course we don't know how long exactly it will take but we are anticipating and preparing to bring him home within the next two weeks! Ah, Hallelujiah!! As one nurse put it, "I am so happy! We didn't even think he was going to make it, and now just look at him!" It is true. We are all amazed. Grateful. Excited. Thrilled! 

This last week we have been doing our trach training, g-tube training, CPR, etc. etc. Not to mention all the things we have to get, do, and figure out before he comes home. I have been on phonecalls with insurance, home health companies, other families with trached children, etc., and filling out all sorts of applications and forms. There is so much to learn and do for this to all finally fall into place. But each night I just remind myself not to over-complicate things. We are learning how to take care of him and that is all that really matters. God sends these little spirits to us because he knows we can do it with His help. And so we will!

We have had such an amazing outpouring of love and kindness and prayers since Paxton's story was broadcast. Many strangers have reached out and said how much it touched them, or how they could relate to some part of the story, and helped us to not feel alone as they have struggled with something rare as well.  Some have shared that their child is 24, and doing well; others have shared that they lost their dear one after a great battle for life. All of them have said that they wouldn't trade a minute of it. Of course they wished they could take all of the pain away, but they truly treasured every day with their angel. Oh, we feel the same way! It is hard to understand how you could want and love to care so much for someone with so many challenges. All of that is true until you have one of your very own, a sweet and precious angel that has so much love wrapped up in such a tender body. I cannot even express how grateful I am for all that Paxton has taught me already. About love. About myself. About life. We feel so bonded to him, and his smiles, movements, and progress bring us such joy!

Paxton has definitely improved this week, and even more specifically, he had his lowest eye pressures ever in his last eye exam on Thursday! One is even in normal range! Immediately I thought of the power of prayer and know that those many added prayers this week really blessed Paxton's eyes. It's so awesome to see such a great effect! 

By the way, I just have to say...I hoped that Paxton's story would help someone else, bless someone else, that that was why we were supposed to do it. I still hope that is true, but I can honestly say I did not even consider how much it would bless us! I did not know what would be shared, and had no idea they would treat it so tenderly with even a "Praying for Paxton" message as part of it! I am completely floored at how much WE have been the recipients of blessings from that great happening. SOOO many prayers for Paxton, friendships made, and hearts lifted. Thank you to all of you who have been praying for Paxton and sending us your well-wishes and love. It has truly helped our little angel advance! There is no doubt in my mind that his betterments are by chance, or even simply by medicine. I know they are by faith and prayers and God's will being wrought in Paxton's life here. He has truly overcome so much and exceeded by such large amounts what any doctor had ever thought would be possible for Paxton. I am so grateful for their expertise, too, and know that with the prayers and great caregivers combined, many miracles have happened to help Paxton heal and move forward. Like I said, Hallelujia! :)

Speaking of prayers, I haven't done this yet, but my heart aches tonight for a friend from college who has also had their newborn in the NICU with us since a week after Paxton arrived. I learned today that their sweet daughter is not doing well, and right now the doctors don't know what else they can do for her heart. This week is a big week for them as doctors will meet together on Friday again to discuss any further plan of action. If you have any more room in your heart and you can remember, please pray for baby Jane. I really hope she can be buoyed up by our faith and prayers and see significant changes this week! If it is God's will, I know it can happen. And I pray for them for whatever that is, that they will all be lifted up! We have been so blessed by your prayers, I feel like it is the least I can do to try to spread the love and prayers for them as well.

So thank you all for hanging in there with us. It is so exciting we are to this point. Paxton is really reacting to us and smiling all the time. A sweet nurse even caught a video on her phone of him LAUGHING! It is so amazing, all that he is doing. So many sweet nurses come tell us how cute he is and one even cried to me on Friday night about the sweet experience she had with him and just the huge amount of love she felt from him! It really touched my heart and I am so glad others are experiencing what we feel as well. 

He is ready to come home. This little almost 4 month old, 7 lb. boy just wants to sit up and look at things all day. He is sick of laying in his bed and staring at the white ceiling. I think he is going to love being home and staring at his brothers going crazy all day. :) OK, he will need baby steps at getting used to it all but it will be a great thing! It is time to move on to the next phase of life! Time to create our new normal!

Love to you all. Thank you for your prayers and physical service and emotional support. We love you to pieces! A few highlights from the week:

waving to his fans, "Thanks Dudes, I'm getting better!"

i love this, the grandmas team, learning how to suction

proud of our all-star

back in a big boy crib, yahoo!

the boys were so excited to visit Pax. I wish I had a video for when i told them he was coming home soon after Halloween! Oh my goodness, the cutest and biggest giant grins ever!

holding hands

prayers for paxton

super big smiles from a super big brother

loving his first book with Daddy

Amazing first laugh! (You can't hear him but his face says it all.) I hope the sound works.

Ah, great blessings! XOXOXOXO

Star

Well like I shared in one of Paxton's first posts, his first smile in his sleep came when I played the song for him, "I Am Like a Star Shining Brightly." 

Paxton has been a "star" long before tonight! We are so proud of him and humbly grateful for his presence in our fortunate lives! Tonight we were able to share his struggles and triumphs with many people. Already our reporter from KSL has put us in contact with a mother who emailed her immediately, with a daughter who has a deletion somewhere on chromosome 7 as well! It may not be the same gene breaks, but I'm so curious and excited to learn from her! Already a great result from tonight's story. So thank you for letting us share, and for being so interested to see this sweet babe on his TV debut. :)

Here are the links to the story:

The preview clip.

The 4 minute story.

We think Paxton knew what was coming tonight, as he made so many improvements today... It was as if he wanted to tell us all he is happy. He knows he's teaching us all by hanging in here. 

Again, he has been the benefactor of many prayers and blessings, the tender care of incredible nurses and doctors, and all of our combined faith, love, and concern. Before we left tonight we experienced this beautiful moment with our calm and happy, awake son. How wonderful to see him improving so much from last weekend's complications. Thank you all for your continued support for our angel boy, Paxton! We love you buddy. Sleep sweet!

Sincere thanks to Jennifer Stagg, who reported Paxton's unique and truly "one of a kind" story so tenderly tonight. Thank you Jennifer; it was beautiful and will be a treasure for all of us and I hope, especially Paxton, someday. You shared it so accurately and kindly, which we appreciate so much. Thank you for showing him as the inspiration he is, bringing "peace" to all of us as we continually wish so much for him. Thank you very much!

Setback

So it happened again. I got to share our lovely happenings of last Monday only to have Paxton on the verge of some downtime again. He was well enough to have his surgeries on Wednesday, as scheduled; however, soon after, Paxton really took a turn for the worse. :) We sort of called in some emergency prayers with the family on Saturday as Paxton had had a major setback.

In surgery on Wednesday, Paxton had his gastrostomy tube placed, and three hernias repaired (which the doctor said are actually harder to do and more painful to heal). My precious boy came back with 6 total incisions, and as pale as ever (as is typical after surgery). The first night he seemed to be doing fairly well, as he was loaded on a lot of pain and sedation meds. He came back to the NICU on a ventilator as his respiratory drive was decreased and he needed to be able to rest and heal. He was back on his trach mask Thursday morning.

on our way to the OR, getting the team to smile!

this time I got to go back with Paxton to see him be put to sleep. hard and nice as well.

paxton back from the OR on the ventilator again.

6 incisions (one in his belly as well)

all the many pokings, proddings, etc. after surgery... never good.

Paxton on Thursday, the day after surgery.

sick but still okay on Friday.

Thursday was actually okay, but by Friday Paxton was wheezing so much, having huge retractions, and having so much mucous constantly fill his trachea.  We were suctioning so often that we began getting blood every time. This is a little freaky to see but I just told myself it would get better. If we could only suction less it would have, but he could barely breathe through that little opening in his tracheostomy tube. In the meantime... 

Paxton was struggling a bit and I begged to hold him, hoping it would comfort him. He slept for a while and then I began to feel something wet under him on my leg. When I opened the blanket and saw blood all over I was very nervous! Was his g-tube bleeding out? Fortunately Paxton had only kicked his IV loose from his foot and the blood and IV fluids had been leaking out. What made it even less comforting was having to watch him be poked 7 more times to replace that stinkin' IV. They finally got it in his scalp. Then they had to try again to give him an art-line (an IV in an artery, measuring blood and drawing blood coming directly from the heart). More struggling to get it in the right spot. Paxton had had it and was exhausted after, in a way I hadn't seen him since August 5th: pale, jittery and shaking. He was sort of asleep but not in a peaceful way, in a very overwhelmed and almost shocked way. It was very sad for me to see him going through all of this yet again. Just last week I was sitting him up in my lap and feeling such progress. 

We kept having to redo blood draws, x-rays, etc. and things just weren't going smoothly. Paxton was desatting even on the vent, with his heartrate dropping to 80. His x-rays were showing deflated lungs. At this point Paxton went back on the ventilator. He was grateful for it and completely let the vent do all the work for him. He needed the rest. All signs were showing Paxton was very sick and he started antibiotics Friday night.

Saturday after much commotion, puffy and out.

Saturday was the worst. When I walked in he was literally purple. He was deserting in his sleep, even on the vent, and was very swollen. Our nurse thought he not only had the pneumonia in his lungs, and the staph infection in his trachea stoma, but also that he looked and acted septic (an infection in the blood). We still hadn't heard back on his labs to confirm that or not. Paxton was still struggling to breathe, with long expiratory breaths. Albuterol did not help. He had his 6th blood transfusion. Our wonderful nurse, Micheala, thought it might be worth it to try the next size trach tube. Thankfully she was right! However, within the next half hour Paxton desatted down to 9, with heartrates down to 49. It was the most scared we had been in a long time, literally watching him go blue and lifeless right before our eyes! I was standing next to him both times and trying to shake his arm during the second one (as we were all stimulating in any way possible), I couldn't believe how blue and immediately stiff Paxton's arm was. I couldn't even bend it. It was awful. Thankfully, we have amazing nurses and respiratory therapists that work together so fast to manually resuscitate and keep Paxton with us. That was the last of those awful events we have seen since Saturday. And I hope we are no where close to that again!

Paxton is finally recovering. Getting more meds and sleep. His blood pressure has been abnormally high (126) and we are hoping all of this combined is not an indication of pulmonary hypertension, again. Echo today to check. He's even having some calm awake times again. Definitely better. 

So thanks again for your love and prayers. He looks quite different right now than he did last week when he was filmed for the news. Such is his story! See a glimpse of it on KSL tonight at 10pm, if you wish. 

Love to you all, and to our sweet Paxton! Our hearts are always with you, angel boy!