Were We Overreacting?

What started off as a very normal Sunday afternoon turned in to anything but.  The girls all had their late-morning bottles and were getting some good shut-eye in separate rooms during their afternoon nap.  Maddy was the last to wake and we soon found out why.

Now, Maddy is normally a little fussy when she wakes up because she's not one to let anything come between her and her bottle.  Today was different, however.  I didn't notice it at first because she was wrapped in a blanket, but she was hot.  I'm not talking warm-from-a-nap-because-I-was-cuddle-wrapped-so-nicely warm, but hot.  I changed her diaper which, usually, gets her excited because she knows a bottle isn't too far off in the distance.  Instead, she proceeded to grunt continuously.  It wasn't a heavy grunt, but a bunch of little subtle grunts, strung together at the end of every breath.  It was very un-Maddy-like, which was our first clue something was wrong.  Our Ped always tell us ignore half of what you hear and pay attention to what you see.  Well, we saw a baby that was in obvious discomfort.  All was soon verified by 102.6F degree temperature.

We called our pediatrician and, fortunately, while we expected to get through to their after-hours call service, were pleasantly surprised to actually hear our doc's voice on the other end of the line.  He prescribed 2.5ml of children's tylenol (the new packaging) every four hours.  He also told us to count her breaths.  If it was over 60, then there was probably reason for concern.  At one point, she was up to 78 and it seemed a little labored.  Of course, he couldn't diagnose it as RSV over the phone, as there are dozens of cold viruses out there, but he did seemed concerned.

Several hours later, her fever was gone and she was exhausted.  Her temperature was down to a much more pleasant 97.6F and her respirations were down to 37/min.  Still, our concern with RSV didn't end just because her fever had broken.  We knew with our preemie girls that contracting RSV could pose some serious risk to their short- and long-term health and could escalate quickly if, indeed, that's what she had.  We wondered if we were overreacting in considering whether we should take her to the ER.  In the end, our answer to that question was, "Who cares?"  This is the first time any of our girls have been sick since they've left the NICU and we're in prime RSV season.  Better safe than sorry with RSV.

In the spirit of full disclosure, I was reluctant, at first, to taking her to the NICU.  She seemed like she was recovering from whatever had caused her discomfort several hours earlier.  However, I did come around, especially when I thought about how bad I would feel if she did have RSV and we delayed taking her because of me.

We asked Mandi, who helps us out on weeknights, to come over a little early so she could take care of Izzy and Sophie.  We packed up the triplet trolley and rolled in to the Edward ER.  It was a little different than the 1000 times we parked in the parking lot so we could visit the NICU.  This time, we used the entrance for "special" guests.  There was no wait and with a little coaching from Melissa, NICU nurse turned friend, we talked them in to taking us directly back to our own room to avoid any unnecessary contact with additional germs.  What has more germs than a hospital, right?  Well, possibly, an elementary school I guess.

An unsuspecting Madelyn, enjoying getting out of the house


The ER doc, checking to make sure she didn't have an ear infection


So, they didn't actually test for RSV because they didn't hear anything in her lungs and her respiratory rate was in a good range.  The issue with RSV is it can turn into bronchiolitis and affect her lungs. That's what is dangerous.  She does have a virus and RSV or not, it has to take its course.  Right now, it's just a runny nose and fever, but it could migrate to the lungs over time. We have to hope that doesn't happen and that the others don't get it.  The doc said they probably would, but gave us pointers to try to prevent it.  Maddy should be better in 14 days or less, though I'm not sure she'll ever recover from the trauma induced by the saline and mega-booger sucker!

Maddy, thinking the worst was over


In the end, the visit to the ER put our minds at ease, at least temporarily.  It netted out to be a $100 saline administration and booger-sucking lesson.  As a bonus, we got to leave with a screaming baby.



Mom, consoling a very upset daughter

Thank Goodness for Neonatologists and Therapists! (by Meghan)

I’m not a person who goes to the doctor much or takes much medicine so it is insane to me that my daughters, between the three of them, had about 15 scheduled appointments this week. By the end of the week we will have seen a speech therapist, a physical therapist, a developmental therapist, a pediatrician, a GI specialist, a neonatologist, a pediatric surgeon, and an eye doctor. These babies sure are high maintenance! (Maybe this means they’ll be less maintenance-requiring as teenagers? I’m keeping my fingers crossed!)

The week started off with speech therapy for Izzy on Monday.  She had a great feeding and the therapist was pleased.  During the post feeding conversation, she made some adjustments to her feeding process and I had a chance to ask her some questions.  The biggest thing weighing on my mind at this point is the question that's been lingering since our surgery at 19 weeks: Will Miss Izzy have Cerebral Palsy? We know this is a common result of TTTS, so I mentioned my concerns to the therapist and asked her if she thought Izzy’s feeding issues could be an early indicator of CP.  She told me yes it could be a sign of CP, but it could also be many other things.  Only time would tell. For some reason, I felt very affected (I guess that’s the right word) by her response. 

Our first sign had arisen, our first indicator, that maybe our sweet little Izzy would have a long road ahead.  We keep holding on to the idea that maybe a “normal” life is in store for Izzy where she’ll read this blog and be completely surprised by all the early struggles of her life because the only sign of them would be a faded scar on her belly. After the speech appointment I was deflated a bit.  She had won so many victories to this point. She lived…again and again, through life threatening situations. Can she really have another miracle?

Today I’m on cloud 9…a big difference from Monday.  We went to the neonatologist follow-up clinic at Easter Seals.  It was a marathon day. We woke all the girls up early to eat, and loaded them all into the car with two packed diaper bags, a cooler full of feedings, 3 adults, and lots of paperwork.  When we got there, we were taken to a room where several therapists were waiting. They looked at each baby one at a time to check on their growth and development.  Afterward, each therapist gave us their assessment. Then we moved on to the next baby.  After that we had a meeting with Early Intervention to discuss which therapies the girls would be receiving.  Four and a half hours after our arrival we were finally ready to head home.

I can’t tell you how good it felt to touch base with the neonatologist and all the other therapists together. We have many appointments with specialists who give us advice on their area of expertise, but we didn’t have anyone to answer the big questions.  I knew Isabelle and Maddy needed volume increases as time went on, but how frequently, by how much, how much spit up is too much, how frequently should we be feeding them, etc.  The pediatrician told us she should be getting 20 oz a day, but gave us no direction on how to get her to increase from her current intake of 15 oz./day to 20. The speech therapist worked on her feeding and swallowing, but couldn’t tell us how frequently we should increase volume, how many hours we should let her stretch between feeds, or why she seemed to be irritated when on the NG. Our day at Easter Seals brought many answers as well as direction on where to go to get what we needed.  They suggested Izzy and Maddy see a nutritionist who will help us determine all of these calculations as they grow.  I can’t tell you what a relief that is to me.  I felt like I was making decisions a doctor or specialist should make, but we weren’t working with someone who had the expertise to do the big picture planning with me. We’re really looking forward to meeting the nutritionist soon!

In addition to that, we got lots of great news about the girls. Sophie is right on track for her adjusted age.  Her head is slightly flatter on one side so they have us doing exercises with her to help even it out.  Maddy is also on track for a 2 and a half month-er. She has the same head issue, but her major problem is the reflux.  They doubled her reflux meds, suggested she see a GI doctor and a nutritionist, and recommended re-evaluation in 3 months.

Nothing new with those two really, but then it was on to Izzy.  The team determined physically Izzy is equivalent to a three week old.  This is a 70% delay, which qualified her for Easter Seals services. Cognitively, she's right on track for her adjusted age just like the other girls. Isn't that awesome news? But wait, there's more! They don't think her physical delays or her eating issues have anything to do with Cerebal Palsey.  They saw no indications that would be early warning signs of CP at all! So, why is she so delayed with eating and developmental milestones?  The short answer is her lungs and her scar, which are both a result of surgery.


Babies at this age should have 40-60 respirations (breaths) per minute.  Izzy had about 120 every time they checked her. Can you imagine trying to eat from a bottle while leaning back and taking 120 breaths every minute?  No wonder there is an issue! Also, all of this fast breathing makes her tired, which is why sometimes she falls asleep while eating. The therapists agreed that her eating issue is actually due to her respiratory issue that resulted from the surgery.  She ended up having 4 surgeries in the first few months of her life, all of which required her to be on a ventilator.  Each time that happened her lungs were damaged more and more. 

This makes so much sense to me now.  I couldn't figure out for the longest time why she was eating well before the surgery.  She was tiny, but she was bottle feeding and doing great.  The nurses would only attempt to bottle feed her when her breathing rate was lower, which wasn't very often, but when she did eat from the bottle she did great.  I remember being surprised how easy it was to feed her even though she was so small.  Then, after the final surgery, she wouldn't even accept the bottle and we were told she was orally averted. It seems that maybe that final surgery pushed her just over the edge and we're still recovering.  The great news is the lungs regenerate themselves as babies grow so this should be a problem that gets better over time.  How much time? I don't know, but who cares? I just keep hearing it will get better...with one caveat.  They warned us again about the damage RSV would do.  It could cause irreversible lung damage for any of the babies, but especially Izzy. So far we're three months into RSV season with two more to go.  Keep your fingers crossed!


Another issue affecting Izzy more than we realized is her scar.  It's about a 4-inch line across her stomach right above her belly button.  It's healing beautifully, but as it heals the tissue around it tightens, which is restricting her movement.  When she's on her belly, she can't lift her head back because the scar is keeping her from arching her back and stretching her head back. The team at Easter Seals told us to talk to the surgeon about "scar releasing".  They think over time, as that tissue loosens, she'll have better range of motion, allowing her to do some of the things her sisters are doing now.  Again, I was thinking her lack of physical milestones could maybe be a sign of CP, but it looks like that's not the case. They saw none of the physical indications of CP.  


So, now here we are again, thinking Izzy may be in store for another miracle. The doctors were surprised she made it out of the NICU, which they reminded us when we left.  Of course we'll love and cherish her no matter what, but every parent wants their kids to have the care free, "normal" life we envision for them.  Maybe Izzy can still have that life.  Maybe we'll still have a 3-hand reel performed by the DeBauche Triplets one of these days. We'll keep hoping and praying!

 

A Well Deserved update to an update (by Meghan)

As many posts go these days, I wrote this one weeks ago.  So, now I'm re-reading and updating our update. Such is life in the DeBauche household these days! :)

They are growing every day! We just went to the doctor's last Friday.  Izzy weighed 8 lb 4 oz, Maddy weighed 10 lb 15 oz, and Sophie weighed 12 lb 2 oz.  They are all making progress on the growth charts for weight and height.  Sophia just crossed the line to get into the bottom section (between 3% and 10%).  Maddy and Izzy are moving closer and closer with each check in, but they're not on the chart yet.

Our biggest obstacle right now is Maddy's reflux.  We started what seemed to be a wonder drug for her: Reglan.  We had a different baby for a few days.  One who wasn't in torture after every feeding.  Unfortunately, it seems we just traded one problem for another because now her constipation is so extreme she cries all the time and spits up over and over again because she's pushing so hard.  We decided to see if maybe she had a milk allergy so we decided to put her on Izzy's formula (hypoallergenic) for a bit.  Unfortunately, it doesn't seem to be much better. We're going to take her to a GI doc soon so maybe we can get that happy baby back sooner than if we just wait for her to grow out of the reflux. Our pediatrician said she could grow out of it as early as six months adjusted (3.5 months from now), or it could last as long as a year.  She is so tortured by it, I'm really hoping it goes away sooner rather than later.  Even that three and a half months seems unbearable.

All of the girls are smiling more and more every day although Sophie's the smiley-est by far. Izzy and Sophia are starting to bat at their toys. And, on Saturday, Sophia surprised us all.  She rolled over!  We were just hanging out like any other day and all of a sudden she was on her back.  We didn't really see it the first time, but we caught most of the second time on video.  The PT told us they need 60 minutes/day of tummy time.  I'm not sure how that's going to happen if she knows how to get out of it as soon as we get her onto the mat!  Maddy doesn't have much alert time that's not crying, but if she did I think she'd be smiling more and doing some of the things the other two are doing.  For now, we just have to hold her and give her lots of love.  Jeremy took some video of them hanging out together on the mat while Maddy was feeling well and somehow I caught her smiling.  Check it out!

Meghan




Maddy, trying the win the "Who can nap the longest competition?"



Sophia, being Sophia


Is this Sophia or Isabelle?


Sophia, being quite the little narcissist.  She thoroughly enjoys looking at herself in the mirror.  She's been doing this a lot lately and just loves the face she sees looking back at her.




Sophia on Christmas morning.  She was exhausted from staying up late to catch a peek at Santa.


Sophie


Sophie


Maddy




We just got about eight inches of snow late last week.  The day before it snowed, it was 55 degrees.  I packed up the girls and took them for a walk.  It was the first time we did it all together and the first time we got to fill up the Peg Perego Triplette SW.  They were all cuddled in with their Wubbanubs and enjoyed getting out of the family room.

Izzy


Maddy


Sophie



Maddy's been fighting severe constipation and reflux, but lately, she's been smiling a ton more!

A Day in the Life with Triplets (by Meghan)

Wow!  I can't believe it's only been a week since we've written. -Scratch that...another week has gone by now.  We didn't get a chance to edit pictures so here we are a week later still trying to publish this post!  It feels like an eternity in some ways and it feels like just yesterday in others.  It's weird how that happens!

Well let's start with the most important thing first: We made it! (Through a week and a half with no live-in grandma help.) Not by ourselves that's for sure!  We have had a lot of support this week from friends and family near and far.  We received a large food delivery from a church group which was set up by a fellow triplet mom.  Then our dear friend Sarah and the wonderful Hubbard family set up a food delivery program online.  Sarah had been asking me for a list of people to send it to and I hesitated for a long time because I didn't think anyone would want to send us food.  And I sometimes feel very guilty accepting all this support.  I don't exactly know how to explain it.  I feel very, very appreciative, but also very guilty.  Anyway, the other night we had a surprise delivery at our door. Pizza from our friend Tara at Mt. Eagle.  I can't say I've ever been that big of a fan of pizza.  We usually order it once every few months.  But that pizza was amazing.  The time it saved not having to make a plate and warm something up.  And, the best part is I could easily hold a baby while eating with the other hand.  I think pizza might be our new favorite food!  :)  Then yesterday Jeremy got on the site and saw all the people who are sending us food.  I couldn't believe it.  If some of you are reading this, thank you so much from the bottom of our hearts!  I never knew how difficult it would be to find time to grocery shop and make something to eat.  It is such a blessing to have food just show up at the door. We are truly grateful!

As many of you know, this week was particularly rough because we were on our own without moms (grandmas) staying with us helping around the clock for the first time since Sophia came home on October 14th.  We had a lot of local family members come over to help us make the transition.  Shallee (my cousin) and her daughter Kylie actually came to stay for a few nights to help with the dreaded night shift. Once they left we had to cover all night on our own.  As you can guess, this was not a week of much sleep for us.  I actually fell asleep while I was NG feeding Isabelle and spilled the syringe of breast milk all over!  That was a rude awakening! Thank you Shallee, Kylie, Aunt Mary, and Kelly for chipping in and helping us take care of these sweet girls!  Thankfully we have finally hired a nanny to help. I thought since I was staying home we wouldn't need a nanny, but as you see below I was in for a rude awakening.

Every time I'm the one posting I try to tell it truthfully.  Whether it's scary outcomes that could result from Izzy's surgery or worst and best case scenarios.  So, I do want to just share for a moment how hard this really is...what life is really like for us with triplet infants.  I have to really make an effort to get myself into the shower every 3-4 days. Many days it gets to the late afternoon and I realize I haven't brushed my teeth. I haven't left the house in three weeks accept for doctor appointments. There is always a baby who is fussing and needs to be held.  None of my time is my own to watch a show, or return a call to a friend, or go to the bathroom, or exercise.  I'm sure having a baby is an adjustment for any first-time parents, but having three, and one with special needs, is a monumental life overhaul. I have to say I did have a little bit of an adjustment period when I needed some time to accept that. Now that I have,  I'm enjoying every minute (Wait a minute! That's not true...I'm enjoying many moments, but there are rough times too.) Every day I am in awe of their growth and so sad it's another day I'll never get back again.  At the same time I wish they would just hold their bottles already so I could feed more than one at a time!  Time is so fleeting with infants who seem to change every moment. We are so lucky!

Let me fill you in about our day starting in the evening.

6:30-7:30 pm - Feed Izzy
7:30-8:00 pm - Give Maddy meds and feed Sophia
8:00-8:45 pm - Feed Maddy (She needs to be held for at least 30 minutes after eating, but sometimes she needs to be held for hours.  It just depends on the feeding.)
8:45 pm -  All kids are down in bed and sleeping  
9:00 pm - Give Izzy her meds
9:30 pm - Hook up Izzy's NG feeding.
9:30-11:30 pm -  The rush is on...I rush to get pumping and ready for bed so I can sleep a little bit.  Usually by the time I tidy up, get ready for bed, and pump it's between 10 and 11.  Jeremy rushes downstairs to get bottles ready for the next day, washes bottles from that day, tidies up a bit more and then comes up to bed.  He tries to get a bit of sleep.
12:00-12:45 am - Jeremy feeds Maddy and adds more milk and resets Izzy's pump.
2:00-6:00 am - There is no break until morning. The pump goes off, the monitor alarms (usually for no reason!), Sophia cries for her pacifier, Maddy spits up and screams her head off until you come in and hold her for a while, Izzy cries because she needs a diaper change, Sophia cries because she needs a diaper change, Izzy pulls out her NG tube, Maddy's crying because she's constipated, Sophia needs to be re-swaddled, the reasons are endless!
3:15-3:50 am - I wake up and pump.
4:00-4:45 am - Feed Maddy and reset Izzy's pump
5:00-6:30 am - Each morning I think today will be the day they'll let me go back to sleep.  I lay down and start to fall asleep and the second that happens someone starts crying. I've timed it...it's usually about every 10 to 20 minutes someone needs me so at some point I give up and hang out on FB on the iPad in the nursery, helping as needed. 
7:00 am - Bring each girl downstairs as they wake, put them in the swing and hope they'll be content and quiet while you run upstairs to get the others and try to scarf down a bowl of cereal. 
7:30-8:00 am - Give Maddy meds and feed Sophia.
8:00-8:45 am - Feed Maddy
9:00 am - Give Izzy meds
9:30-10:30 am - Feed Izzy
10:30-11:00 am - Pump
11:30-12:00 pm - Feeding frenzy starts again! Get meds for Maddy and feed Sophie. 
12:00-12:45 pm - Feed Maddy
12:30-1:30 pm - Feed Izzy
1:30-2:00 pm - Pump
2:00-3:15 pm - get s#*t done
3:30-4:30 pm -  Feed Izzy
3:30-4:00 pm - Feed Sophia
4:00-4:45 pm - Feed Maddy
5:00-6:00 pm - Try to feed ourselves and bounce around helping/holding fussy babies
6:30-7:30 pm - Feed Izzy.
7:30-8:00 pm - Meds for Maddy and feed Sophia
8:00-8:45 pm - Feed Maddy and we're back up to bed.

Do you see all the overlap?!!! Izzy's on an every three hour schedule while the other two eat every four. So, no matter how we arrange the schedule there are some feedings where there is a lot of overlap and some where they're eating every hour for three hours straight.  Maddy's reflux is horrible and makes her a very high-maintenance baby.  Each feeding with her takes at least 45 minutes and sometimes she needs to be held most of the three hours in between each feeding. Then there's sweet Izzy.  She usually takes about an hour to feed.  We start off with the bottle and then NG whatever is left.  She's a very slow bottle feeder and she cries and spits up if the NG goes to quickly.  Thankfully Sophia takes 10-15 minutes to feed and can burp and go down to her bouncy five minutes later if we need her to. We're so thankful for one easy baby, but we have major feelings of guilt because we spend so much more time with the other two. Hopefully as the others grow we'll be able to equal out the attention a bit more!

In the few hours of down time, there are so many tasks to fit into the day: washing bottles, making bottles, bathing babies, showering ourselves, eating, laundry, folding and putting away laundry, going to the doctor, calling doctors' offices and Early Intervention for appointments, sifting through the obscene amounts of paperwork that we get from bills, to insurance explanation of benefits, write a blog post, return calls to friends and family, grocery shopping, diaper and other necessity shopping, sleep, feed our poor neglected kitty, kitty litter, breast pumping.  If we have fussy babies all of these things get put on hold until we can find a free moment.

Needless to say, while it may be possible for one person to take care of three babies, it is not possible for one person to take care of these three babies. Thank goodness we finally hired a nanny!  I have sad feelings about this too.  I really want to do this myself, soaking up every second of their lives and not sharing it with anyone but Jeremy and close friends and family. For now though, I need to accept the fact that I need help.  Hopefully, as they grow, that will change or at least lessen as time goes on.

We've taken some great pics this week.  We'll leave you with them.  Sorry some of them have been revealed on FB already.  I couldn't wait to share!

Happy New Year everyone!

Meghan

Izzy's meds before bed


Maddy's meds in the morning and evening


Giving Maddy her meds


This is just after a couple of hours of "triplet life"


We had to move Maddy to the Rock 'n Play on the left.  That's her monitor over there.  On the right, is Isabelle's pump.


The nanny with Izzy



Meg and her girls


Madness on the Mat!


Maddy, catching some z's




Sophia, lounging with her Wubbanub


Izzy, working up her stamina


Sophie, figuring out what's happening with Baby Einstein