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Archive for the ‘Kidney u/s’ 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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…and it has done wonders for lack of time and sleep!  On Tuesday I returned to my full-time job and it was bittersweet.  Monday was a hard day for me as it was the last day where all my time and attention could be devoted to the twins and the NICU.  Driving home that night, I sort of lost it.  Okay, I lost it big time.  It was more anger than saddness and I’m sure that returning to work was just a trigger – but it really comes down to one thing:  I’m over it.  I’m over this whole NICU thing, I’m over having to drive to see my precious babies, I’m over the whole experience.  I just want them home.  But of course the reality is – they are where they need to be and I have to swallow that fact and move forward.  So, that’s what I did. 

I did receive the warmest of welcomes back from my colleagues and peers and that helped make it better.  I do have to chuckle that my loving boss said that we’d ease me back into things.  That lasted about a day (and to no fault of hers – there’s just a lot to do!) and, in fact, I’ve been bringing along my laptop to the NICU and working on stuff in between cuddles with the kiddos.  But, truly, it has brought some normal back into my life and has also allowed me to experience different things at the NICU that happen in the evening hours such as weighing them. 

Both peanuts are doing well.  The doctors have been working to wean them on their flow of their cannulas and they’ve gone back and forth on that – down to 2L and back up to 3L and right now they’re hanging out at 2.5L and tolerating it well.  Colton’s oxygen has been primarily between room air (21%) and 25% and Keltie’s oxygen has been between 25% and 30%.  They’re going to try and wean them down to 2L on Monday and see how they tolerate it.  The goal is to get them to tolerate 2L and below so we can start trying to feed them by mouth!  I so look forward to that, but also recognize that brings a whole new set of obstacles and bumps in the road.  In order to help them, they started them each on diuretics to get rid of some of the adema (swelling) they have going on.  It’s not the most commonly known one, Lasix, but is a gentler one that doesn’t pose the same risks that Lasix does (the name is escaping me). 

Their growing has been wonderful!  As of last night, Colton weighed 3lbs, 11oz and Keltie weighed 3lbs, 7oz!!!  My big, strong peanuts!!!  They are off the Prolacta and are on what they call Hi-HMF to help boost the calories.  Due to the extreme cost of the Prolacta, once they reached a certain point they make the switch since the risks are very low now that Prolacta helped prevent. 

Keltie’s blood pressure has been captured and they actually expanded her dosing schedule from every 8 hours to every 12 hours, which is a sign that whatever is causing it is starting to break down.  It’s a relief to not see those high BPs on the monitors anymore.  We did have a slight scare with her earlier this week – there was blood in her urine once and so they did another renal u/s and everything looked clear.  They did a urinalysis and that didn’t show one drop of red blood cells.  So bizarre.  The doctor thinks it was a fluke or something – there’s nothing really there to say what it was but we know what it wasn’t.

Onto some not so good news – their second eye exam was on Monday and they do have Stage 2 ROP in Zone 2 of their eyes.  I don’t know if both Chris and I misunderstood or what, but when we assumed they were free and clear of it two weeks ago…we assumed wrong.  The “good” news is that this isn’t uncommon and they’ll have another exam in two weeks to check the progress.  Apparently it is not unlikely to get worse before it gets better, but 90% of the time it resolves on its own.  If not, they will need laser surgery to correct it.  Ugh – thoughts and prayers that everything resolves well on its own with no lasting effects on their vision. 

Other than that, we’ve been soaking up their absolute adorableness (is that even a word?) and loving every minute of it.  We’re starting to see them more and more awake and that’s really awesome, too.  Here’s an absolutely adorable video of Colton looking around:

Colton at 8 weeks!

Keltie at 8 weeks!

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Monday was a huge day for the peanuts – they had their eye exam, Keltie had her kidney u/s, and Candace was coming for their photoshoot!  Good news there all around – their eye exam showed no ROP and “normal” premature retinas.  The doctor will return in two weeks and likely continue every two weeks until they’re released.  This was a huge milestone – I didn’t sleep much Sunday night because I was so nervous about it.  It doesn’t mean that ROP won’t show up, but it’s not likely if it wasn’t seen on Monday’s exam.  Keltie’s kidney u/s was clear as well – no major clots or issues.  Unfortunately, her BP continued to rise throughout the day and right before I left it was something crazy like 120/80, so the doctor made a plan to have a cardiology consult on Tuesday for her. 

Candace arrived and spent almost four hours with us at the NICU.  She was amazing – and so patient.  It was hard as I really wished that I could have had maternity pictures since the likelihood of me being pregnant again is…well, ZERO.  But, we decided to make lemonade from the lemons we were handed and these pictures will be so precious and important to us in the long run.  Well, last night she posted a preview of six pictures and I immediately burst into tears.  They’re amazing.  Gorgeous.  A true capture of the beauty of my children and the love I have for them.  I can’t even imagine with the rest will look like (I’ll have those in about a week or so).  I believe if you click this link, you should be able to see them.  Let me know what you think!  And anyone in the MD  / VA / DC area who is looking for a wonderful photographer, please consider Candace!

Tuesday Keltie’s BP continued to be very high – the cardiology consult basically agreed with what the neonatologist thought and that’s where Keltie likely has a small clot or clots not able to be seen on the u/s and this was likely caused by the arterial lines that were in her belly button which were removed a while back.  Their little bodies take a long time to break down these clots, so the cardiologist and neonatologist decided the best course of action would be to treat her high BP and allow the body to break down the clots.  The tricky part is getting the dosing right on the medicine – enough to lower her blood pressure and sustain the ideal blood pressure range but not too much that causes her to plummet (which is actually worse than it being high).  They’re still working through this – today it was lower about an hour after her dose of meds, but then it came right back up high a few hours later.  *sigh*  Luckily, this is something they can manage for her and they’ll eventually find what will do the trick. 

Keltie’s also behind in her weight gain – especially when compared to Colton who is now being called a “porkchop” by one of the neonatologists. 🙂  So, the nutritionist provided instructions for me to do this special pumping process for the next 1-2 weeks to get and separate out the hindmilk for Keltie.  So, I started that on Tuesday and she gained 30 grams from it just in one day!  As much as it’s a bit of a pain in the butt to do (you pump for 4 minutes, put that in a bottle and mark it F for “foremilk” and then continue pumping and put that in a bottle and mark it H for “hindmilk” and only bring in the H bottles to the NICU) and it kind of affected my supply for a bit (I think the stopping to pour the foremilk made my supply “confused” if that’s even possible…I could just be making this up, too), it’s totally worth it if it’s going to help her put on the necessary weight.

Speaking of weight…I had my 6 week postpartum visit today and all is good in the Krista hood.  I currently weigh only 4lbs more than I did on my wedding day.  I was shocked.  I never knew a good weight loss plan was to get pregnant with twins!!!  I am happy to finally be able to go to the gym again, though, and take advantage of the head start.  My body is absolutely different than it was before – I have fat in places I never did before and I’m skinnier in other areas.  So bizarre.  Of course I had to fill out some survey and they score it to see if I’m suffering from postpartum depression.  For any SHC people who read this – it reminded me of the PSE!  It had questions like “do you feel stressed?”, “are you having trouble sleeping?”, “are you sad?” – me being…well, me, answered it truthfully and so my “punishment” for that was to have a 30 minute conversation with my OB about how that stupid survey shouldn’t be given to moms with kid(s) in the NICU!  My answers were purely situational and I’m not suffering from postpartum…I’m suffering from stress and concern over my 26 week premature twins!  She agreed and was happy to know I see a therapist (I think everyone should!) and we finally were able to move on.  I got my return to work note and I’ll be back on March 20th – I’m looking forward to getting some “normal” back in my life but I’m a bit nervous as to how I’m going to manage it all.  I’m sure I’ll figure it out – I just wish I could work from the NICU…

Other than that, Chris and I have been alternating who we hold each day and getting in some serious cuddle time.  We both agree that we fall in love with them more and more each day.  It’s crazy – and it’s awesome.

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The remainder of last week was stable for Colton and Keltie.  Both Chris and I switched off kangarooing each of them and it was nice to have snuggle time.  They continued to do well with their feedings and their breathing was stable on the high-flow cannulas. 

On Friday, we had our first night out in the city with some friends who were in from out of town.  This was also Mommy’s first night with her long lost friend, wine, since July!  It was nice to enjoy a few adult beverages and socialize with some fantastic friends, but I must admit that coming home and pumping 4 ounces and pouring them down the drain was SO HARD.  It’s a lot of work pumping every 2-3 hours – it’s become like a part-time job!  So seeing that valuable milk go down the drain was tough, but worth it.  I just had to remind myself that 4 ounces is a very small drop in the bucket when we have a freezer full of milk.  And – I deserve a little me time, right?  Mmmmm, wine…it was good!

Saturday was another day of indulgence as we had a wedding to go to.  Chris and I went up to visit with the peanuts before the wedding ceremony – it was funny to walk into the NICU in a dress and heels!  Chris’s friends came to meet Colton and Keltie prior to the wedding – they have their own miracle baby who was a 25 weeker and she has been our inspiration throughout this journey.  It was so wonderful to have Stuch and Jen visit and meet them – they are truly a couple who know exactly what it is we are experiencing.  It meant a lot to me and was especially important to Chris, so I’m glad they wanted to see them as I’m sure it brought up a lot of memories from six years ago and that couldn’t be easy.

The wedding was great – again, another wonderful evening with friends we unfortunately don’t see as much as we’d like because of where everyone lives.  I think we’re running out of people left to get married which is what brings everyone together, so I’m hopeful they’ll start putting together an annual weekend away with our families again.  The last one a few years ago in Hershey was awesome  – and now Chris and I will actually fit in as we’ll have kids to bring along! 🙂

Chris had to fly out this morning for three days, so it was Mommy’s job to kangaroo both of them – especially since we didn’t get to kangaroo at all yesterday because of the wedding.  I ended up spending about two hours kangarooing each of them!  When I called to tell the nurse I was coming up, she said Colton was a little antsy and that she was glad I was coming up and she was hoping I was as she knew he’d be better if I held him.  That made me feel so good and I was happy to help!  I read Colton a book that my friend Lillie had bought them called Are You Awake? by Sophie Blackall – the dad in the story is a pilot!  We also talked about being a big boy and how strong he’s getting – he was 2lbs, 11oz today!  And we chatted about how he had to be nice for his nurses because they’re trying to help him be healthy enough to come home and meet Lucy and Cooper.  And we talked about going to the beach and playing in the sand.  It was a very nice one-way discussion!  Colton was much better after our snuggle session and before he went back into his isolette, my MIL and SIL came for a visit and they got to see him (and hear his very boastful cry!) and that was nice, too.  Lindsay hadn’t seen him yet without anything on his head / face – I think she fell in love all over again with my handsome boy…

Next up was Keltie and she was having a good day, except her blood pressure was high.  We snuggled for almost two hours as well – starting first with a visit with Grammy and Auntie Lindsay and then ending with the Are You Awake? story and some discussions about her being big and strong – she was 2lbs, 7oz today!  We also talked about what she wanted to be when she grew up and how she will not be allowed to wear short, tight skirts like the young girl I saw earlier in the week outside the hospital.  I figured I might as well start the conversation early…

The blood pressure thing has me really uneasy – before I left it was even higher, so I spoke with the doctor and they’re keeping a close watch on it.  I called the nurse tonight and she was working to get a good urine sample to send off to see if there was anything telling in her urine.  She just called back within the last half hour and there were some red blood cells, so they’re going to have a kidney u/s done tomorrow to see if there is a blockage or if they can determine what specifically is going on.  She is otherwise doing really well – eating, pooping, peeing, her breathing is good, heart rate is good, and she seems okay…  The doctor said it could be a sign of some slight damage to the kidneys from the chronic lung disease, it could just be prematurity, or it could be a blockage (with that being the least common).  It’s not a critical issue and it’s something that can be managed noninvasively if it is one of those things – so we’re just keeping our fingers crossed for Keltie and sending positive thoughts and prayers her way.

Tomorrow is a big day for two other reasons – one is their big eye exam to see if there are any issues at this point with their retina development (looking for retinopathy of prematurity or ROP).  I’m really hoping everything looks normal for both of them, but I know the risk is there.  The other big thing is that my friend Candace is in town and is coming to the NICU to take some pictures of the peanuts!  She does amazing work (check out her FB and website) and I’m hopeful she’ll be able to work her magic in between the constraints and challenges of the NICU. 

But, most importantly, I hope that Keltie’s blood pressure issues are easily resolved and that both babies continue to do well and have a good week.  I don’t so much like bumps in the road…

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