WHY WON’T MY CHILD SLEEEEEEEPPPPPPPPP??????

Seriously. We’re at our wits end here. Kendall’s new sleep schedule involves sleeping for about an hour, waking up for half an hour in which she may be happy as a clam and wide awake, or just a slobbery hot mess who has no idea what she wants. she will then go back to some semblance of sleep for another hour and start over again. There is usually a good 2-3 hour stretch where she is totally awake and wants to watch infomercials on late nite TV, and then maybe another hour and a half of fitful sleeping before the whole house wakes up for the day. I am telling you its getting BRU-TAL.

And this is life with Ben here. Next Monday starts “The Summer of Travel”. Which involves Ben travelling. All summer. For work. I really do like it this way – where he gets most of his MUST DO travel out of the way before the cold crappy weather of winter kicks in. It makes him a much happier person for the holidays, plus allows us flexibility for the spring time with vacations, or say, your baby decides to spend a few weeks in the hospital. you know, either way. And all i am sayin’ is that if its brutal now with two of us to get up with her 8 times a nite, i can only imagine how psychotically sleep deprived i am going to be by say June 27.

i am REALLY hoping that our 6 month well child checkup with dr. natalie tomorrow morning yields SOME kind of help with the sleeping department. SURELY they make some kind of pediatric nyquil…..right? i mean, kendall can’t be the only baby in the history of the world who has decided to forgo sleep. maybe she is sneaking baby crack? I just can’t figure out WHY a baby, who gets tired by trying to grab at toys for more than five minutes, WON’T STAY ASLEEP! ok i’ll try to find a new topic to discuss. but really, i hope dr. natalie has some ideas to get things rolling back towards a semi-restful nite for all involved.

we get to rush home from that appointment for developmental therapy (DT), and then tomorrow evening have the big final practice for Kealey and her cheerleading competition! Ben has softball, I have softball (my ankle/knee are healing quite nicely from last week’s sprain running to first), and then Wednesday – more appointments! We will be seeing our FIFTH GI doc in 6 months. This one is THE doc that Early Intervention recommends, so all our therapists will base their info off of his report. I am, at this point, not expecting much of ANYTHING to come from this appointment. She is doing as good as I have ever seen her do, so I doubt he is going to want to do any kind of testing, and will tell us again, with the imeprialistic sense of imparting the knowledge of the ages to me – that she has a milk protein intolerance and reflux. Both of which I could have guessed she would have before she was even BORN, since all three of her sisters had similar issues. Whatever. I am already rolling my eyes about this appointment, but if it helps keep all her therapists (we’re at 5 right now, waiting on a 6th) on the same page, awesome then.

the ONLY thing I am hoping we get out of the GI on wednesday is if we can start trialing solid foods without allergy testing, and if he feels like she is no longer an aspiration risk on thickened foods. I know that to those of you who have dealt with reflux this may seem backwards – but the thinking is that, while thickening feeds can help keep food from refluxing back up, the fear with kendall and her already compromised lungs (from the RSV and RAD/asthma), if she aspirates (breathes in) any of the refluxed thick foods, it will be near impossible for her to clear it without some kind of damage/sickness resulting. That’s what we have been told from her two swallow studies. So right now, no one wants to say, well hey, let’s just TRY IT for grins and giggles and see if she chokes or not.

she has to get three main issues cleared up before we can really start trying solid foods:

1. Positioning – her hypotonia/weak muscles mean that she really doesn’t support herself well. Right now she can sit up if she is pinned flat against my chest with my arm supporting her entire trunk, or if i am holding her upright with both hands. This doesn’t make for an ideal feeding situation as I doubt i would be able to feed her with my toes holding the spoon and lifting it up to her. Could be fun to try though… Right now we don’t have a chair that will help her stay in a correct midline position – she eventually just slumps to the side or starts holding her head up with her shoulders – again, neither of which is conducive to swallowing efficiently. So her phsyical therapist is starting the application process to get a chair for kendall with a special backrest, headrest and harness to position her better for feeding, as well as teaching her muscles how to sit up properly and allow her to be a part of the family. I am not sure what i thought the chair would look like, but seeing a picture of it was kind of a reality check. It’s definitely the kind of thing you wouldn’t expect to see a “regular” baby need. but we’ll see. she has continued to surprise her therapists each and every week with her progress, so maybe by the time the chair gets approval she won’t need it. But positioning is definitely her first hurdle to eating solids.

2.) Allergies – right now Kendall is on an elemental formula, which means it is as broken down of proteins as you can get. It is the easiest form of food to digest, and completely hypo-allergenic. On a different kind of hypo-allergenic formula, kendall broke out with hives and had shallow breathing. Allergic reaction? likely. But who knows to what, or why she had it. I found some hypo-allergenic organic brown rice cereal and sure enough, when i put a TINY amount in her bottle, again with the hives. ??? Again, no one wants to be the one who says to just start trying foods when she may react again to whatever we give her. Allergy testing is “controversial” in babies as young as her, because the results can be false – either false positives or false negatives, not giving an entirely clear picture of what is going on with a baby’s tiny immature system. So we have to get some kind of grip on whether or not kendall is having food allergies, or if her body is just throwing random reactions to any and all new things.

3.) the Reflux – as I put above, there is almost more of a danger with thicker foods than with her very thin formula if she refluxes it and swallows it back down the wrong pipe. So we need to have some kind of reassurance that the violent reflux of the past few months is either gone, or well enough controlled on her 3 reflux meds to safely try solid foods.

hopefully the GI dude on wednesday can give us a better timeframe or picture for starting all that. I guess it just seems like a “normal” baby thing to do, and the longer it seems like we CAN’T do that, the more removed from normal milestones she seems.

On a happy note – her first tooth finally broke through today! I think that pain may have SOME part of her current sleepless state, but after going through teething with three others, trust me when i say, this is WAY worse than just teething sleeplessness. I can’t explain exactly why, but if anyone wants to come on over at around 3 am, you’re welcome to see for yourself! And of course now that i am putting this all to paper, she’ll probably have a spectacular nite of sleep to prove me wrong. But hey, i’ll take it!

So that’s our update for this week. sorry for the lack of writing in a few days. I have no idea why it has seemed busy around here, well, busy enough to keep me from blogging…maybe it’s the gorgeous weather? (not counting today and its sub-zero temps.) Oh that’s another thing I wanted to get down…

on Saturday, we went on a 5K walk for a little girl in our neighborhood who is battling osteosarcoma (bone cancer). I was honored to be able to go take pictures for her family capturing Danielle before her first round of chemo to attack the cancer, 48 hours before her beautiful hair started falling out in large clumps. And Saturday was a pretty warm day, very humid. I pushed the babies in their stroller, and kendall was in the shade of her carseat for the walk, and then in a tent for the hour or so after the walk, and was drinking her bottle that whole time. Anyhoo – after we get home, kendall was conked, and slept for about 3 hours. As soon as she woke up and started drinking a bottle again, she started violently puking. Like coming out her nose and eyeballs violent. Formula EVERYWHERE. Luckily I had some pedialyte and glucose water that i mixed into 2 oz. batches and slowly gave her those, and she managed to start keeping things down about 4 hours after the puking started. She still didn’t tolerate full strength formula till this morning, almost 48 hours later. she has felt very warm since then (cooling off a little now), but was very flushy/red in her cheeks and warm all over. The odd thing was, she wasn’t that sweaty. Normally this kid sweats buckets off her head when she gets into a good deep sleep (which hasn’t happened in a while!), but the past few days, very little. I am thinking that may  mean she was still dehydrated in spite of my pedialyte cocktails…but who ever knows with this kid? so i know that’s a lot of random info for all you readers, but if i don’t write it down here, i’ll lose it forever!

I have heard that some kids with hypotonia do have issues with heat intolerance, and i guess we’ll know more next really humid day we have. but i wanted to get down the details now so i have something to come back to in CASe this isn’t just some random bug she caught.

ok this was a rambly post. if you made it this far you should get a medal.

I hope you all had a wonderful memorial day – thank you to all the amazing men and women who have served our country in the name of freedom and liberty.

God Bless America!

terra

I am struck by the fact that I have not pondered that word before.

To RE-lax, means that we are becoming lax (whatever that state of mind or body may mean to you) AGAIN. It means we once WERE laxed, but something or some lot of things have put us in a state of UN-laxedness, and we must therefore seek out relaxation in order to once again achieve our state of laxity.

there’s your latin lesson for today.

Anyhoo.

for those who DOn’T know, I am currently seeking my own state of RE-laxation. I was sent on a mission by my absolutely amazing husband to come and find the inner me again. I guess the months of stress and worry and just LIFE has caught up with me, wonderwoman, somehow. And this was at first just an awesome fun adventure…

but the sun has just set over the edge of the ocean, and it is getting darker, and two thunderstorms are converging on either side of the beach I am on and it is raining and not even the crazy birds who live by this pond behind my room are making noise and it occurs to me for the first time in a long long long time…

I am utterly alone.

Like robinson crusoe alone. Exile Island alone.

this is a strange feeling. It has both its benefits and its drawbacks. But out here on my self-finding mission i am trying not to THINK so much, and just BE. so here i am. alone. I can hear only the distant hum of an air conditioner and the occasional squawking of some unidentifiable bird. My ears hurt from the quiet. It is like the opposite of pressure – it feels like all the wind has been sucked from this place and its just this landscape, and me.

and the unnatural glow of the laptop screen of course.

I was at the beach when the rain started, attempting to capture the sunset in an image of beauty that I could look at long after this weekend is over and be reminded of the tranquility. I had to bike back to my room and riding over the pavement I could feel the heat rising as the raindrops allowed steam to escape the baked black confines. That feeling of humidity and breeze mixed together brought back the briefest of childhood memories – smelling that wet pavementy smell, riding my bike down some sidewalk or other to get home…and i think a small piece of ME came back right then and there.

I know there’s a lot more to go. I pray that God continues to reveal himself to me here in the place where it is so very easy to commune with Him.

For those of you who know me in person – you would be so proud. i have stopped screaming out loud every time one of those gross little fast lizards crosses my path. Which is a good thing because this has happened somewhere in the range of 893 times today alone. I think I stopped being completely freaked out by them around the 400 mark.

As i was sitting on the beach this evening though, watching angry waves come crashing in spurred on by the approaching storm behind them, the words of this song came to mind:

when peace like a river attendeth my way

when sorrows like sea billows roll

whatever my lot thou hast taught me to say

it is well

it is well with my soul.

the tears flowed as i realized how so very true this has become in my life as of late.

when things are good and easygoing, AND when things are as riled up and angry as those crashing waves were – I will know that God is in control.

And it will be well with my soul.

terra (or at least some form of her while she is off finding the rest of herself…)

To my darling beautiful baby girls -

Tomorrow is Mother’s Day. I have already received the cute little potted flowers and homemade cards that come home from school, and truly, they are enough. I love seeing the handiwork of those pudgy dirty little hands of all of yours. I cherish the construction paper cards with your stilted writing professing your love for me. And I guess I’ve never really thought much about what it means to actually be YOUR MOMMY on mother’s day before. For some reason, this year it has a little bit more meaning.

I guess because I have had to rethink my entire mothering “strategy”.

See, before Kendall came, I just followed “the books”. “The books” all say to  feed your baby, take them to their well child visits, get them their vaccines, read to them, play with them, stimulate their minds, then ship them off to school. The end. Happy life.

And for you older three, that worked out pretty well. Sure we had a few bumps in the road, a few minor scares here and there, but I never questioned the path laid out in the books about how to be a good mom. You gained weight, you met your milestones, you grew, and you thrived. I cuddled you within moments of your drug-free births, confident that my milk was all you’d ever need to grow on, as my body had nurtured you for those 9 long months inside of me.

And then came Kendall. A surprise from the very beginning. I thought all “the book” wisdom would once again work for her.

the books say to “bond with your newborn right after birth by holding them and talking calmly to them, looking in their eyes, perhaps even nursing them for the first time.” But I couldn’t find the chapter about what to do when your baby is immediately whisked away from you to be placed under a warmer with oxygen. When 5 or 6 doctors come in to check on your baby and no one tells you what’s going on. When your arms ache to hold this product of 9 months of pain and 18 hours of labor – and they are empty.

the books tell you that to be a good mom you should “room in with your baby, breastfeed on demand, spend time getting to know your baby before returning to the demands of your home life”. But they left out the part that talks about what to do when your baby is laying in an intensive care unit, hooked up to tubes and wires and machines that beep. How do you bond with a baby who you aren’t even sure CAN hear you, who hasn’t opened her eyes yet, who struggles for every breath? How do you fight that urge to unhook all the tubes and pick up your baby and run far far away from the hospital?

The books all say that your child should be able to lift up their heads by this age, and should have gained so much weight by this age, and THIS is how you assess that your child is thriving. But they didn’t write a chapter on what to do when you are instead left to rejoice over a few GRAMS of weight gain, and you are excited that the biggest milestone your baby reached in her first month was breathing on room air, and in spite of all of your VERY BEST efforts to cram nutritious breastmilk and even some formula into her, your baby has a label of “FAILURE TO THRIVE” stamped in her medical record?

I thought I was a good mom who was able to track how much my babies ate, and know that they were getting enough of the best possible nutrition  – until I had to learn how to drop a plastic tube down my baby’s nose and get it to end up in the right place (tummy not lungs) in order to feed her.

I thought I was a good mom who had only to figure out how to read a thermometer when my babies had a fever – until I had to learn how to read a pulse ox/BP/RR/HR readout at my baby’s bedside, or program a feeding pump to enable my child to “eat” with a minimal amount of pain involved.

I thought I was a good mom who could handle just about any cold/sniffle/minor boo-boo that my kids wanted to throw at me – until I had to watch an ambulance pull away with my one baby clinging to life with each labored breath, and still have enough presence of mind to pack up the others and drive to the hospital.

“The books” have a lot of good information in them about how to be a good mom, and I am so thankful for all the normal “goodness” i have been able to enjoy. so even though with Kendall i don’t always feel like a “good mom”, i have learned that I am more.

i am part of a TEAM of good moms, moms who have come alongside me and supported me and let me talk through this new world of mothering, moms who have given of their own time and efforts to support me in my efforts, moms who have exhibited their own “good mothering” skills with my kids as if they were their own.

I am a product of the years of good mothering of my mom, and her mom before that. I am held in the hand of my Loving Father as He teaches me to lean on Him daily for strength and knowledge and wisdom. I am still struggling with adjusting to this new standard of “being a good mom”, but I am learning.

So baby girls, as I watch you grow and bloom and yes, hopefully, THRIVE over this coming year, I ask for your grace. I will try to not yell so much. I will try to not be so focused on Kendall’s appointments and therapies and issues that I miss the bigger picture of your gymnastics skills blooming, your vocabulary increasing, your subtle little everyday ways of GROWING UP. I will take more time to play outside with you, teaching you how to make your own bubbles and make hopscotch squares the right way (with slightly less than 38 squares), and making cinnamon rolls for breakfast for you. I will do my best to not have to ever again decide whether to leave your sister in the hospital alone or miss a school event for you.

Keep growing, keep thriving. I’ll never stop loving you or trying to be the very best mommy I can be. I love you,

love,

your mommy

She continues to get a little better every day. 

It is actually somewhat surreal some days, because in very many ways she is still a newborn. It’s like I FINALLY have my baby to celebrate – 6 crazy months late. And in others, she is very much a (almost) 6 month old who WANTS to do things like roll over, grab toys, interact with her world, and she can’t. And it breaks my heart just a little bit to watch her get frustrated by those things, or her lack of ability to do those things. BUT – we start the therapy parade tomorrow, and i am SO excited to see what she can do once we start working with her, finding her limits, helping her reach her potential.

She has actually been allowing us to get a little longer stretch of sleep at nite than last week – I think we topped out at 6 hours the other nite – that was awesome.

In OTHER news (somedays its hard to remember that we DO actually have a life outside of constant worry about K4)….

let’s see. Ben planted my vegetables the other day for me – we’ll see what happens this year. I may have been too ambitious. We have tomatoes, cherry tomatoes, cukes, and green peppers from seedlings, and then onions and cilantro growing from seed. If it ever decides to stay SPRING around here, that might help. I also would like to get the girls back to the zoo someday soon – possibly this week or next, depending on how many other therapies get scheduled (we’re still waitlisted for speech and occupational. I know these SEEM like something an infant won’t use, but apparently they’re both VERY helpful in the feeding/eating department. Go figure.)

I feel like I have a very busy week ahead of me but I can’t quite put my finger on WHY i feel like that. Yes, ben is back out of town this week…but I don’t think that’s why i feel semi-overwhelmed at the moment. I am thinking the lack of sleep is REALLY playing with my thyroid levels, and I could probably use a good tweak to my medication levels there…but really, who wants to add ANOTHER doctor visit in when I feel like we are living in medical offices lately? So we’ll see if we can keep all this upward trending of Kendall’s and hope that helps EVERYONE feel better.

I am very excited about the warmer weather. I am anxious to do more outside stuff with the girls – especially now that Kendall is doing so much better and we don’t have to lug around that pump with us! At least our stroller right now let’s her recline a lot, but as she gets more frustrated with always having to lay down, i may need to rig something up to help strap her more upright. For those who haven’t held her, let me try to explain what her biggest issues are now. 

She was diagnosed with hypotonia when she was first admitted with RSV. Hypotonia basically means no or low muscle tone. In layman’s terms – “floppy baby”. Oddly enough, that’s what we have always called her! Floppy baby! She is truly a ragdoll. Now I will say that she has made SOME progress as her nutrition has started to come under control. If her trunk (chest and shoulders) is supported, by your hands, pillows, blankets or whathaveyou – she has pretty good head control. She still rests her chin on her chest or her shoulders to help stabilize most of the time, but it’s improving slowly. But if there’s not SOLID support all the way up to her shoulders, she just literally crumples like a rag doll. So unless I can figure out a way to strap her in and support her all the way up to her shoulders, she has to basically lay down. Her bouncy seat is the same way – it has her extremely reclined so that she isn’t crumpled forward. This is why we have been SO anxious to start therapy to help her start building some of those key muscles. She has VERY low tone, and its pretty generalized. Her legs have a little bit more strength in them than her upper body – but even those are pretty weak (she will not put any weight on them when you hold her upright). It’s kind of hard to explain with words just how very floppy she is. I think it’s kind of the hardest part of her “mystery diagnosis” to deal with. There’s just no telling how/when/if/how much her tone will improve and she’ll be able to do some of those normal things.

And again, here i am throwing a pity party.

So i’ll quit.

It’s a beautiful sunny day outside and I got some new tunes to crank in the denali-mobile. Nothing but the Best of Frank Sinatra, and the complete Reggae of Bob Marley. When Kendall was first in the hospital and having a very hard time breathing that first nite, I turned on Bob Marley’s one love, held the headphones up to her ears, and just sang along to her – let’s get together and we will be alright, let’s praise the Lord and we will be alright….

And sure enough – we were. 

And we are.

Keep on Keepin’ On.

the T.