<<– massive smile! MY FAVORITE PICTURE!
It’s Sunday. Day of rest. I have a billion things I want to organize around my house (mostly still Annabelle’s stuff, figuring out where to put everything), but I’ve decided that I am NOT going to do so. There is nothing that can’t be done tomorrow.
So today, I’m resting! Well, as much as I can anyway.
I LOVE having Annabelle home, but it does have it’s challenges.
Night-time is one of them at the moment. Last night, I was up again almost every half hour with Annabelle. Not that she was crying, but she kept tossing and turning all night and she still has her oxygen canula, her feeding tube, and her O2 sat prob on her, and man, she was ALL over her crib last night. And she got major tangled in those cords! They say not to let a kid around cords due to choking hazard… what do you do if your kid HAS to have cords in bed?!?
She doesn’t roll over yet (a blessing in disguise!) but she does roll to her side… then back to her other side… and ends up at all angles over the bed. I got up at 1 and found her Gtube extention out of her Gtube… I think that had JUST happened though as the bed wasn’t wet yet. I then got up about 3ish (and I think a few times in between… memory is fuzzy…) and changed a diaper and untangled her, only to hear her obviously have another dirty diaper twenty minutes later.
She kept tossing and turning and so I decided, ya know, she can’t roll over yet, so I’m gonna put her on her belly so she’ll stop rolling! It worked for a while.. but I got up about 5 because she was gagging (normal for her) and rolled her over to help.
I then found at 5:30 that her medicine port in her Gtube had come open, and we had been feeding the bed, probably since 5 when I rolled her back over.
I then counted my sleep as lost, changed her, gave her meds, then took her out to the living room to play since she was bright-eyed and awake.
Oh, and to top things off, we “accidently” weaned her methadone yesterday (long story) and forgot a breathing treatment in the morning. Which is REALLY frustrating because yesterday was the best day we have had so far… or so I thought!
One of these days I will be organized. One of these days I will feel comfortable doing all of this. I hope so anyway. I really do!
My hubby, mother-in-law, and kiddos are at church this morning, and I’m home with Annabelle. Just put her down for nap (although I hear her stirring… *sigh*)
Was watching TV preacher talk about “passing opportunities” and it was actually pretty good. (not that TV preachers aren’t good or anything….) Anyway, his point was that God gives us opportunities in life, and that we need to take them when he gives them, as we might not get the same opportunity again. The obvious opportunity is salvation, which thankfully I took a long time ago! But his message was very similar to something God has been trying to teach me for a long time.
The example I’ve always gone to is the Israelites. They were giving an opportunity to enter “the promised land.” They were too scared, said no, and paid dearly for it.
This has been my prayer for a long time, that God would help me to be in tune with him, and that I would grab hold to any opportunity that HE puts my way to draw closer to Him and to have what he has promised for me and my family.
So as my family sits at a big curve in the road with Annabelle coming home and job changes, and we are unsure of what lies on the other side, my prayer is that God makes us in tune with the opportunities He has for us, and that we won’t sit in our little comfortable areas, that we’ll step out in faith where He directs us to, even though we can’t see what will come of it.
On a side note, I was sitting in bed this morning after I handed Annabelle off to Scott, praying that I would go back to sleep (I didn’t…) but my imagination started to stir for first time in a while. A wee little idea for a book unearthed itself from somewhere in my sleepless state. It might not amount to anything, but it was fun to FINALLY have a scene play out in my head again… something that hasn’t happened in almost a year. Not sure I’ll write it just yet, but maybe soon:-)
And finally… PICTURES!!!!
Annabelle outside in her carseat for the first time! Getting ready for the trip home! She’s thinking… wow.. that sun is BRIGHT!
First bath! She wasn’t pleased. Also, I’m thinking we need to figure out something different to bath her in STAT. At least we’ll get to use her baby bathtub a few times anyway!
Much better… clean baby!
Playing in the jumperoo!!! She likes it most of the time… and her toes finally it the ground (barely!)
First time in her high chair! She can’t eat… but at least she can sit at the table with the family! She wasn’t sure what exactly to think about it though…
Annabelle and big sis! (Karalynn is pleased, I promise… I think we had better pics of this on other cameras, they were getting irritated as they didn’t know which camera to look at, HA!)
Scott will kill me for this, but it is my favorite. Like daddy, like daughter!
Mommy and Annabelle. It’s so GOOD to have her home!
sorry you had a rough night. praying for better more restful nights. LOVE the pictures and so happy she is home!!!
Congrats on being home! And it does get easier…everything becomes second nature after a while. Kind of like brushing your teeth! But, mistakes still happen and things still get forgotten. Establishing a routine is the most important thing, but then if the routine gets out of whack (for example, if we oversleep – yeah right – or Bean wakes up early – much more likely…) then sometimes I forget to give meds until an hour after they are due. Her afternoon meds are often given hours late because I don't have a routine tied to them – I used to have a cell phone alarm set for them. I probably need to do that again. But, the most important thing to remember and what the on-call docs have said every time we've called in a panic, "Most of this is long-term…missing a dose (or treatment, or BP taking, etc) ONCE is not going to make a difference as long as you're consistent otherwise. So, bear with it! Sounds like you're doing great. And everyone told me this, and I wasn't very good at doing it, but try to nap when she naps!!! 🙂
HA! I DO have my cell phone alarm set… for meds and bolus feedings! I'd be lost without it!!!!
Nothing has been "horrible" mistakes so far… although the methadone wean is taking its toll today as she's much crankier than normal. But I figure I don't want to regive some when we were gonna wean next week anyway… so we're just get through the withdrawl unless it gets too bad!!
Just wondering if she could sleep in her car seat at night???? Then she could not move around so much and get all of her cords tangled and/or loose. I get this would not be a long term solution but, maybe, just maybe, you could get a few hours of sleep! ha
Some thoughts….can she sleep in a cradle/basinet to reduce how far to moves around? Also, what about a cotton/light sleeper with all the tubes/wires coming out of a hole you make in one foot? Socks on to reduce tangling toes!
As for feeding the bed…make the bed with several layers of sheet and water proof pads so that in the middle of the night you just take off the wet and a dry clean bed is right there!
I imagine that once you've been home awhile they will let you consolidate/tweak dosings so that the med are not an issue at night. Leyda doesn't get any meds during my sleep…I give some right before I go to bed.
missing a dose here and there will happen and generally isn't an issue….try to enjoy and not worry!
So happy Annabelle is home! Thanks for the pics.
I understand how tiring and scary it can be taking care of someone who needs constant attention. Things will fall into place, and you'll establish a routine.
LOVE LOVE LOVE the first picture of her huge smile!!! I think about the only advice that I can say is that after months in the hospital, when we finally could bring Jacob home, I never got any sleep for the same reason….I was so worried about him getting tangled in all his dang cords!!! I would barely get him untangled from his oxygen or sat probe and his feeding tube would come unhooked and formula would start leaking everywhere and then the whole process repeated itself day after day. Til one day I thought screw this and brought him into bed and he slept right next to me and it was the best sleep any of us probably had had since he was born.
I know a lot of people would disagree with this and of course it doesnt work for every family. However, it thankfully worked wonders for me and my husband. You can only go so long without sleep before you are completely exhausted. I never had to worry about him because every movement I could feel him right next to me and we all slept so much better. Of course, having a chronically ill child and being in and out and in and out of the hospital constantly…..well now most nights we still have a 7 year old stowaway in the bed with us!!! As soon as we get him back into a regular routine, then back in the hospital we go for something else and it starts all over again. So that is just sort of where we are at.
I remember the day he came home after his longest stay. I was SO excited to have him home. The next day as I was drawing up his tons of different syringes of all his gtube meds I just sat on the floor and cried. I felt so overwhelmed and I am a nurse for heaven sake!!! But I am not his nurse, I am his mommy and so it is different.
I hope that you are able to take a few small minutes each day for yourself. Somedays I remember thinking "breathe in, breathe out" it seemed that was the only thing that I had ANY control over at the moment. It does get better but I know it feels so overwhelming, especially with other little ones who need their mommy's attention and love too.
Sending you love and hugs
Those photos are awesome! How wonderful to see Annabelle home!
Just an idea …
When my nephew was born he had something with his neck and was not allowed to roll over or move in is crib. We put a special Baby Wedge stabilization cushion in his crib and he slept happily and safe. Maybe something to consider for Annabelle to avoid her getting tangled in all het chords?
Sorry you are short on sleep. Hope you can grab a nap here and there in the coming days. 🙂 Thanks for sharing the pics. Still praying!
I'm crying with joy over such a blessing to have your baby home enjoying (and even not at times – but it's ALL good!) the everyday things of caring for your wee one. How precious! Krista, thank you for sharing your journey with us…this story is certainly a page turner. Looking forward to hearing more as your little Annabelle continues to thrive. Love all the pics, especially of you holding your Annabelle on your own couch at home.
LOVE, LOVE, LOVE, LOVE the pic of Annabelle at the top of the post! What a SWEETHEART and of course all the rest too. 😉
Krista…I'm so glad that not only is Annabelle home but that you are home with her. As much as I love seeing pics of a happy baby, I really enjoyed reading about "opportunities." It really reminds me of the book that I lent you….don't know if you have had a chance to read it yet, but this is exactly what Glenn was talking about in it (he just called it breadcrumbs). God really laid it on my heart to share with you….I think your preacher this morning was simply another breadcrumb for you….I know that this is probably a scary time but sometimes some of the most wonderful things can come from these scary things. Continue to pray, lean on God and simply have faith. Also, don't forget to follow the breadcrumbs.
I can't imagine how you get through those nights–when I wake up I will say a prayer for you!
Such sweet and happy pictures!
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