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!