A new chapter: The mini comes home

preemie baby homecoming

It’s been two months since “the mini” came home. The day she came home was one of the best and scariest days of my life. Two whole months home! It feels like such an accomplishment, which is a weird thing (and probably socially unacceptable) to say about your baby coming home from the hospital, but it’s true. You would think that by the time a third kid comes along you would have this parenting thing down to a science. You would think. Unless of course the third kid is a one pound micro preemie who completely rocks your world and destroys everything you thought you knew about baby care. Well, not everything I guess, diaper changes and spit up seems to be a pretty universal baby skill. But as for the rest of my hard earned mothering credentials, I can pretty much chuck them out the window.

The mini came home with expensive tastes for her toys. She has a tracheostomy tube, oxygen, and a ventilator that does all her breathing for her twenty four hours a day. She eats via a food pump through a tube in her stomach (g-tube). Her heart rate and oxygen saturation are monitored through a pulse ox machine. Basically we have no shortage of fancy gadgets to play the “lets try to guess why this thing won’t stop beeping game” with, or cords to untangle countless (and I do mean countless) times a day. And thus equipped, we have begun an entirely new chapter of our preemie baby journey.

trach baby in home set up

This chapter of life ought to be an easy, no-brainer, all is well sort of chapter. We are home, baby’s health is stable, everything is hunky-dory. Actually it’s more like a “I’m driving in the fog and my headlights don’t work…but it sure is pretty outside, and the music in my car is nice…but any minute I might actually drive over the edge of a bridge…but I also might not…and I’m not exactly sure how long this drive is going to be like this. So hey, isn’t this fun?!” sort of chapter. One minute everything seems completely normal and manageable, and the next I wonder if I should pinch myself to wake up. Do I really have a crib and life support equipment sitting around in my living room? Do I really have to have a nurse come watch my kid so I can sleep at night? Did that guy really just leave four large boxes full of random medical do-dads at my front door? Wrong house. Am I at the wrong house?

No matter how much mental preparation and talking to’s I gave myself prior to baby’s discharge, I didn’t realize how coming home puts a final sort of spin on things. No, the machines aren’t going away any time soon. Yes, I’m going to have lots of abnormal conversations with my three and five year old…”Why can’t I hear baby sister cry? Why can’t we go to Walmart right now and take baby with us? Why do we have take her to the doctor again?” It didn’t occur to me that walking through a crowded doctor’s office to our waiting VIP room (no sitting in germ infested crowds with a ventilator baby) would bother me…because those moms staring curiously at me with their perfectly average kids with perfectly average colds don’t know just how perfectly wonderful their “averageness” looks to me . I didn’t realize that having to premeditate every move with baby so as not to accidentally pull some tube out would actually get on my nerves pretty quickly….un-hook feeding tube, pick baby up, move slightly to the right, don’t step with your left foot, rehook tube, start feeding pump, sit slowly but don’t let the suction tube catch the arm rest.

Things get a little more “real life” at home I’ve noticed. The first time I heard someone refer to her as a “special needs child” I could feel my face get hot…Whoa there lady, can’t we just keep calling her a preemie for a little longer? I get that she has some delays (ok, a lot of them), hmm yes, she also can’t breath and that sort of thing, but special needs sounds a little on the extreme side. Apparently, a person isn’t just born expecting their child to be the “special” one. That only happens to other people.  And even if it’s not exactly news, sometimes hearing what you’ve been thinking come out of someone else’s mouth has a way of making it real.

bringing home a trach baby

The funny thing about this world of medical difficulties is that you tend to bump into folks who have gone through something similar or have had much bigger challenges to face…and I think God lets that happen for a good reason. I see those people and they look sane, they’ve survived, and often, they are some of the most compassionate, caring people I’ve ever met…they remind me that there is always more to a story than just the beginning. At the beginning of our NICU/hospital stay, I thought it would never. end. But it did. God got us through that, and looking back, it doesn’t look as bad as it did back when we were in the middle of it all. And so it will be with this new chapter that we have begun. Someday I will see our whole story with all it’s beautiful details…and I will love it. Someday I’ll be an old lady and nudge some young person’s arm and say, “Let me tell you about the time God gave me a three million dollar miracle that weighed one pound.”

 Hebrews 12:1-2 “…and let us run with patience the race that is set before us, ….Looking unto Jesus the author and finisher of our faith;”

Find out more about “the Mini” and her journey HERE

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About Abby

I'm a mom and blogger. I love all things creative! Follow along at www.chapterthirtyseven.com
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6 Responses to A new chapter: The mini comes home

  1. Cindy bowman says:

    Abby, your story is an inspiration to many. Please know you all have been in our prayers. You will have opportunities to tell your story to many through the years, many that will need your encouragement and wisdom that you are gaining as you walk this journey.

  2. Ali Fay says:

    I don’t know how to say all that I feel in my heart for you. I am so happy for you that she is home. What a blessing. God will continue to strengthen you to bear up with this challenge, he loves you more than you can know. Your girls are so lucky to have you for their mommy.

  3. Laureen Lattin says:

    As always, Abby, you are amazing and articulate!
    May the Lord make his face shine upon you (every day!) and bring you peace!

    Much love to all of you…

  4. coco says:

    Such a beautiful post, Abby. And a beautiful baby. My thoughts are with you and all your family as you grow your little one through this part of the journey. I hear your inner voice and find it all understandable. And think your little one is in the right place and with the right people. Wishing you calm, strength, and peace, clearly God thinks you’re special too. Coco

  5. Shannon Keith says:

    Thank you for the update, Abby. :)

  6. pam in illinois says:

    I hope all is going well with all of you. I am sure you have your routine down pat by now.
    I just wanted to ask if she will ever be off the machines. Are her lungs and feeding going to improve as she gets older.
    Such a sweetie she is. Your older daughters look so proud.
    Hang in there. You have a lovely family. pam

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