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Archive for the ‘Nephrocalcinosis’ Category

Gosh – it’s been busy but, like a broken record, you’ve heard that here before.  So, let’s get into the details!

Colton and Keltie turned one on January 24th.  What a day it was – I spent it working and Chris spent it carting the celebrities around to visit various family members.  They had cake.  Three times.  And I cried myself to sleep.  An odd sensation of “we did it” came over me and it was a nice release. 

They had great 12 month check ups at the pediatrician about a week later.  I didn’t get the actual age percentages but I know both are on the actual charts for everything except length!
Keltie: 17lbs, 10oz (43% adj), 27″ long (30% adj), and 17.25″ head (50% adj).  She’s pretty proportionate.
Colton: 20lbs, 4oz (65% adj), 27″ long (9% adj), and 18″ head (75% adj).  He’s basically a big bowling ball.

The pedi is very happy with where they are at! And clearly so are we considering when they were born, their stats were –
Keltie: 1lb, 9oz and 13″ long
Colton: 1lb, 13oz and 13″ long

We did have a bit of a scare – both of them came down with pneumonia.  Luckily we were able to treat from home and didn’t have a hospitalization.  It was scary, especially with the coughing and wheezing, but they were strong and some antibiotics and nebulizer treatments helped immensely.  If we get out of this winter only having pneumonia I will say it has been an extremely successful seclusion!  As much as we are going a bit batshit crazy from not being able to take them anywhere and spending 99% of our time at home, keeping them healthy is much more of a priority and it is clearly working. 

Developmentally, they’re doing amazing.  SIMPLY AMAZING for being born so early and going through so much.  We have PT coming once a week for them both, in addition to our developmental specialist (OT).  PT has been an incredible boost for their gross motor skills!  Keltie is now crawling on her hands and knees, pulling to a stand, and is starting to cruise some furniture.  I think she’ll be walking shortly (watch out world)!  She has ZERO fear – so a lot of what we’re working on with her is safety.  Colton is army / belly crawling.  He is bearing weight through his legs but doesn’t pull to a stand yet.  Just this weekend he has been seen rocking on his hands and knees so I think he’s working on some advancement to kneeling / crawling on hands and knees.  Both are clapping – especially when you sing “Patty Cake”.  Grammie and Grandy worked on that with them!  Lots of babbling but no words yet.  We transitioned them to milk – so no more formula!  And they’re eating three meals a day and loving all the different foods they’re trying.  Colton’s favorite is still yogurt and he likes pot roast.  Keltie’s favorite are carbs and crunchy things.  Both love pasta – they are Italian.  🙂 

Oh and *drumroll please*:  for the first time ever, in their entire 13+months of living, they are not on ANY medication!!!!!!!!!!!!!!!!!!!!!

Keltie had an appointment with her nephrologist two weeks ago and her nephrocalcinosis has resolved and now we have only annual visits with her!  No more Diuril!  And we started weaning Colton’s First Omeprazole (Prilosec) once he was transitioned to milk and he’s doing awesome with barely any reflux at all!  I NEVER thought the day would come and it seriously makes me so proud.  I was in Florida on business when Chris brought Keltie to her appointment – he text me about her nephrocalcinosis and I had to fight back tears.  Such strong, strong little people!

And – we have teeth!  Well, Colton has teeth and I think tonight I might have felt one for Keltie.  Colton literally got 4, yes FOUR, teeth in about 48 hours.  Not exaggerating.  I put him to bed one night and he woke up with two more teeth.  It’s insane!  And they’ve been tolerating it really, really well – not much of a demeanor change and just some Tylenol or Motrin here and there and that’s it.  Thankfully. 

I think that’s about it – they make me smile (and cringe haha) every day!  Their personalities are hilarious and now that they’re on the move it’s a whole new challenge.  We are getting excited for Easter – last year, it was the one “family” holiday they spent in the hospital and that was a hard day for both Chris and I (he worked and had a tough time leaving the hospital to go to work).  I got out their Easter baskets and they could have slept in them this time last year.  Easter has always been a tough holiday as I lost my Grampy on Easter many years ago – so the NICU memories of it don’t help.  But what we are trying to focus on is how far we’ve come from last year and how exciting it will be to celebrate the Easter Bunny with them and dress them in their Easter Sunday best (bonnet optional haha)!

I’ll leave you with some pictures –

One Year Old!

One Year Old!

One Year Old!

One Year Old!

Handsome guy!

Handsome guy!

Pretty lady!

Pretty lady!

Sassy and Coy

Sassy and Coy

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7 months ago as of August 24th, the twins came rushing into the world and we were faced with a lot of fear and unknown.  Today, the future is becoming less scary and the memories of their first few months are ever so slowly fading into our memories.  We have made some strides in their health – resolving some of their preemie issues and feeling a little more “normal” each day. 

Keltie

Miss Keltie had a routine renal appointment and they cut her blood pressure medicine by one dose to eventually discontinue it.  The dose she is currently at of Captapril is 0.12mL and isn’t even therapeutic anymore based on her weight, but they didn’t want to stop it cold turkey.  They will do a urinalysis (once we have a successful attempt to actually get some – Urine catch bag:  0, Diaper:  4) and an u/s is scheduled for next week to take a look at her kidneys.  We are hoping and praying that everything looks good and the nephrocalcinosis is stable or maybe even better / gone!  As of last week, she weighed 11lbs, 10oz so she is likely close to the 12lb mark by now!

Developmentally, she is perfecting her roll from back to belly and belly to back.  She does it well enough to sleep on her belly when she chooses (much to my dismay and my 2890123810 attempts to roll her back over).  She loves laughing, smiling, and has recently discovered her voice.  Chris and I joke that we now live with a teradactyl!  She is working on learning to sit unassisted and had her first spoon feed last week! 

Keltie in her fancy BabyLegs!

Colton

Colton has had a whole bunch of appointments and all of them turning out very well!  He met with his surgeon and he confirmed that his hernias were not present and he doesn’t need surgery!  That same week, we met with his GI doctor and he isn’t concerned about his delayed gastric emptying and is okay that he spits up 24/7  (it’s a laundry problem!).  The only additional testing he would consider at this time is an upper GI but because he’s gaining weight and doing well, he doesn’t think it is necessary.  His reflux does seem better – he doesn’t get the “attacks” like he used to and it truly doesn’t seem to phase him when he does reflux.  We go back to him in about six weeks and will likely continue to see him routinely until Colton works through the reflux.  Finally, Colton went for his third modified barium swallow study last week and the best news of all is:  he no longer aspirates on thin liquids!!!  We are slowly weaning his thickener (to make sure the thinner feeds don’t increase his reflux) and they even had me test him eating by spoon and he did great.  So we were able to introduce spoon feeds to him and he is LOVING IT.  I am so happy to know that he matured his swallow and can safely have thin liquids and start these spoon feeds!  As of last week, he was 13lbs, 13oz so I’m sure he’s well over 14lbs now!

Developmentally, Colton is still working on rolling over completely from back to belly.  He does well belly to back and we know he’ll figure it out soon.  He is doing excellent pushing up on his forearms and playing on his belly.  He is also learning to sit unassisted and found his feet and loves playing with them.  Colton has become a much more smiley guy and has the most adorable giggle.  He LOVES playing with toys and really enjoys chewing on his Sophie giraffe.

Mmmm Sophie is yummy!

   

Overall, we are so pleased with their progress and love checking off these boxes with each doctors appointment.  They are doing well meeting their adjusted age milestones and their laughs, smiles, and interactions warm our hearts each day!  Coming up next –  Spoon feedings, food, and baby led weaning (BLW)!

Happy 7 Months, Peanuts!

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Oh Miss Keltie – my have you grown!  It has been 6 months, 3 weeks, and 2 days since you decided that you truly wanted OUT.  I think I remind you of that fact on a daily basis and I am so thankful that I *can* remind you of that fact on a daily basis.  I took some time to look through all 800+ pictures I have of you and your brother that were taken over the last six months and I must admit, it has been the longest and shortest six months of our lives.  You’ve put us through the ringer but oh man is it ever worth it!  You already know how to work it – with that ridiculously huge and gummy smile, you can essentially get anything you want.  I wonder if you know that yet?  Probably.  We’re screwed…  Anyways, let’s do a little rundown of how you’ve been lately!

Birth, 1 Month, 3 Months, 6 Months

Health

Keltie is currently 11lbs and about 22″ long – that’s quite the difference in almost 7 months and from starting at 1 lbs, 9oz and 13″ long. She has been doing really well and is growing at a good rate.  She is eating 4.5oz of Neosure formula every 3 hours and is tolerating her vitamins and medicine each day.  She has her blood pressures taken weekly, but will be moved to every other week after her appointment with her renal specialist next week.  Her blood pressure has been stable so it looks as though the nephrocalcinosis isn’t affecting her much and she’s outgrowing it.  She graduated from the ophthalmologist as well!!  Her ROP has totally resolved and her vessels have grown in well in both eyes.  We are so happy she avoided the laser eye surgery!  Since coming home she truly has flourished and has been a healthy little girl.

Development

Hanging in my Bumbo

Early Intervention has been coming for the last two months and we have seen great strides in Keltie’s development.  Their developmental specialist, Sheila, has done a lot of work with them and we continue to work on the skills she targets each week.  Keltie currently tracks her toys and people well and is doing great reaching for and batting at toys.  Her tummy time skills did leave a lot to be desired, but with dedication from Mommy and Daddy (and the help of using her Bumbo under close supervision), she is finally pushing up on her arms and holding her head really well.  And, on Wednesday, Miss Keltie rolled from back to tummy!!!  We were SO excited!  We continue to work on head / neck control, rolling, and are now working on sitting up unassisted. 

Personality

Smiling is my favorite!

Keltie is a hambone.  As soon as she figured out smiling, she decided that was her most favorite thing to do!!  She smiles all the time, most of the day, and even has worked in a really cute laugh!  She likes laughing at peek-a-boo and other silly things Mommy and Daddy do for her.  She is such an “easy” baby – she is pretty laid back and likes to just take it all in.  Keltie’s second favorite thing to do is cuddle.  In fact, I had been trying to work on this entry while she has been laying on my left shoulder asleep and it didn’t make for a comfortable typing position…but she’s worth it so I waited until Daddy took her to bed to start.  She is learning her voice and doing a lot of cooing and shreeking!  It’s simply amazing to see her coming into her own little self.  I laugh and cry every time she laughs – it amazes me.

Overall, she is doing awesome and is a great little girl.  We are so blessed to wake up to her each day, to be showered in her smiles, and consumed by her cuddles.  She is perfect. 

Collage of Keltie over the last 6 Months

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