A Surprise For Daddy

We just returned from our nightly date in the NICU which ended up being much more fun than we expected :)

Let’s begin with a quick Izzy update.  As you know, the surgery went well.  They found and removed the four perforations she had in her bowel and suggested we have her tested for Cystic Fibrosis.  Nothing much has happened with that since the surgery.  The neonatologist wanted to see the results of Meg's screening before deciding how to move forward with their testing.  The doctor we spoke with also let us know the testing takes about a month to get results back, so I don’t expect we’ll have an update on this for a while.

Since surgery, all is well and going as expected.  Her blood pressure was low and heart rate was high, but they have been able to get that under control over the last few days.  She is starting to have bowel movements into the colostomy bag, which is great.  She is very swollen as a result of the surgery, but that is starting to go down already, too.  Today, they decreased her pain meds and her ventilator settings.  They will continue to wean the vent settings and the pain meds until they decide to switch her back to the nasal cannula.  She’s starting to open her eyes and become a bit more aware, but she is still sedated.  She seems comfortable at this point, which is great to see after all the agitation she had before the surgery.  Each day, the doctor checks in with her and sets a new plan for that day.  She should be off of the ventilator within a week after surgery and they plan to start feeding her sometime soon after that.

Our milestone for the day was with Madelyn.  Her nasal cannula was taken out this morning at 9am.  This is their second attempt at taking it out.  The first time she did well at first, but then she got tired and began to desat and have episodes with apnea.  So far so good this time.  The nurses told us if she makes it 24 hours she should be able to keep it off.  I’m keeping my fingers crossed it doesn’t happen again and that she’ll still be cannula free in the morning.

The highlight of the evening though, was definitely with Sophia.  Her nurse had her all ready for us to hold.  It was my turn with her tonight, so I sat in the rocker with her and Meg sat nearby waiting for Maddy to be ready.  What unfolded next will live in infamy.  It went a little something like this.

Jeremy: "Honey, do you smell that?" a few seconds go by

Jeremy: "Meg, did you fart?"

Meghan: "No, did you?"

Jeremy: "No." a few more seconds go by

Jeremy: "Do you think it was the nurse?  Maybe she farted and walked away?"

Jeremy: "Are any of the nurses eating egg salad over there?

Meghan: "No, I don't see anyone eating over there."

Jeremy: I proceed to lift up a swaddled Sophia up closer to Meg's nose "Meg, smell her.  Is it coming from her?"

Meghan:  "Maybe.  Something's definitely funky."

Jeremy:  "Nurse Julie, we need a second opinion.  Can you smell down by her feet?"

Julie:  "Sure."  she proceeds to inhale "Yeah, something's not right down there."

After hearing where this conversation was going, Meg decided this might be a great family moment to capture on video.  What follows could never be described with mere words and will haunt my memories for years to come.

Keeping Us On Our Toes (by Meghan)

What a day!  We finally got through the surgery that has been looming on the horizon for weeks. I feel so relieved to be on the other side and finally have some answers.  Unfortunately, with the answers came more questions.  As you know, nothing with Isabelle is typical, so why should that change now :)

Let’s start with the general update of today’s surgery.  They took her back to surgery at 4:45 pm and she was done by 5:45, which was much quicker than we expected.  The doctors found four perforations close together and removed them.  The first part of the bowel before the resection was brought to the skin and connected to a colostomy bag.  The other section was also brought to the skin.  That part will just hang out and heal as long as the bag is in.  In a few weeks or a month or so, they’ll go back in and reattach the two parts of the bowel so she can start to have more normal bowel functions.  There will, of course, be some issues with feeding and passing stools and getting it back to normal function, but she will slowly get better and better with time.

Here’s the great news:

1. They are confident they found and removed all the problem areas, so she can finally start the healing process.
2. She looks so much better!  I was prepared to start bawling when I saw her, but I was actually overcome with joy.  Her tummy was so stretched out prior to surgery.  It looked very swollen and painful.  Post-surgery it looks much more normal and less painful.  The doctor said she should have the ventilator off in a few days and start eating soon after that.  We’re finally on the road to recovery for her after spending her first 3 weeks of life not knowing what was going on and just waiting and waiting. Being on this side of it feels much better.
3. They are sure it was not NEC.  They found no sign of infection and the perforations have nothing to do with NEC.  Yeah!  One small victory for our Izzy! 

Here is the scary part and the reason Izzy’s still keeping us on our toes and needing lots more prayers: The surgeon feels since it is not NEC, we have to ask ourselves why this happened.   He feels there is a high chance that she could have cystic fibrosis.   The stat he shared is 50/50.  The scariest part of all this and the most hopeful part about it is that CF is a genetic disease that is in your DNA.  Therefore, if Izzy has it, so does Sophie since they are identical twins with identical DNA.  The good news is he thinks Sophie would be showing some signs of being sick, specifically having some bowel issues, and she’s not.  She seems to be as healthy as can be, on full feeds, and having no problems with digestion whatsoever.  It’s so scary to think that our healthy one we have worried about the least could be very sick too, but I’m staying with the positive outlook.  Let’s keep thinking Sophie’s showing us signs that really they are both healthy without CF.  Of course, if they have it we will love them and get them on track for early intervention from the beginning, but we can still have hope of avoiding this issue like we did the NEC.

I asked the doctor if he knew we had TTTS and had fetal surgery, of which he was not aware.  Then I shared that an ultrasound post-surgery showed blood in Isabelle’s bowel.  At that time the doctors and we were so excited to see all babies having heart beats, he told us not to worry about it.  I asked the surgeon if he thought this could be a side effect from that surgery and not related to CF and he said that was a possibility.  He’s still sticking to our 50/50 odds though, so we’ll just have to wait and see.

Here’s the plan of action for the next few weeks:

1. The surgeon and neonatologist will be monitoring her closely to make sure she’s recovering ok from the surgery and to decide when to start taking the next steps forward – starting gavage feedings and taking out the breathing tube.
2. They will test her DNA for a variety of types of CF.  I was tested pre-pregnancy and I am not a carrier so she won’t have the most common type of CF.   The surgeon explained to us that there are a variety of strands that I may not have been tested for that they’ll look at now.  If all of these tests come back negative, there is still a small chance (about 10%) that she would have a rare form of CF that they cannot test for.  The tests will be back in a few weeks, so this is the focus of our new prayers for our girls, sweet Sophie and Isabelle.

Either way, we’ll have a better prognosis in a few weeks.  Of course, we’ll keep you posted as we hear new information from the wonderful doctors at Edward.  Here’s a picture we took of Isabelle right after surgery. 

Thanks everyone for your thoughts and prayers.  I’m still amazed at how FB has become such a large part of our lives as we battle onward.  Each time I see the names in my email of people who are commenting it makes me smile.  You do so much more for us than you know.  It’s so nice to know there are so many people on this journey with us.  We appreciate that more than we can say.  It is so nice to be able to glance at our phones and so frequently have more positive, kind, inspiring thoughts from friends and family.  Thank you so much!

Also this week we need to thank Aunt Mary and Charlie.  They cooked all kinds of food and brought it over to us, the first home cooked meals we’ve had at home since our NICU rollercoaster started.  They also spent all day waiting for the surgery and hung out at the hospital with us while we waited.  It was nice to have someone with whom to talk and hang out.   Thank you!

Also this week, Jeremy’s friends sent us wonderful gifts. I know I need to send all of you thank you cards, but until I get your addresses thank you so much for the amazing gifts all of you sent.  You went way beyond.  Thank you so much for your thoughtfulness.

Kelly, thank you so much for the beautiful birthstone necklace and cooking us dinner at your house.  You’re a much better cook than I am and Steve’s a much better griller than Jeremy is.  It was wonderful to have a home cooked meal with you and your family.  Thank you!

We Figured This Was Coming (Update #1)

Meg and I were up and ready to head to the hospital at 5:45am to meet with the surgeon and to bring our nurses some coffee.  Right as we were getting ready to the leave the house, the NICU called to let us know that our surgery was being pushed off until 2:00pm CST today.  Our surgeon got called in to deal with a baby trauma, but we're next up on the list.  We went back to bed for 30 more minutes and then went up to the NICU to see our girls.

Maddy actually had to have her cannula put back on as she is still have some bouts of apnea and her oxygen saturation level seem to be drifting.  They did remove her IV, at least for now, but depending on how well she continues to handle her feeding will dictate whether they can avoid having to put her back on the TPN.

Last night was bath night, so all of their hair looks soft and smells like baby.  Maddy and Sophie both have their preemie clothes on.   I know everyone thinks their babies are beautiful, but I just can't get enough of these girls.

Izzy's status didn't really change overnight.  She's still on the ventilator and the nurses/doctors are still managing her pain via the Fentanyl drip.  We met with one of the neonatologists who we hadn't met yet, Dr. Gomez, and it looks like we'll be spending a lot of time getting to know her today.

I'll post another update when we know more.  Meg, the girls, and I all thank you for your thoughts and continued prayers.

We Figured This Was Coming

(Just a note, I started this as a draft on Friday and am now finishing on Saturday)

So, today our babies are 32 weeks old.  It's still a little difficult to think of them as two and a half weeks old since, to me, it still makes sense to track them by their gestational age.  Well, it's easier for me at least. 

Sophia and Madelyn are making excellent progress.  Sophia is completely off of her nasal cannula and only has her NG tube left to go!  She looks like such a different baby now because you can completely see her face.  She's so beautiful.



One of my other beautiful girls, Madelyn, finally reached the 3 lb mark!  Even though she weighs an ounce more than Sophia, to my eyes, she still looks a good bit smaller.  It could just be that daddy isn't an expert at this yet (or that I'm more tired lately).  She, too, just had her nasal cannula removed and is breathing on room air.  For some reason, they don't have her in clothes yet like Sophia, but I have to believe it's not too far off in the future.

My last beautiful girl, Isabelle, was breathing through the nasal cannula the last few days, but unfortunately, had to have her breathing tube re-inserted last night.  Her belly really started expanding again and they needed to intubate her before they could put her back on the fentanyl drip.  At this point, it's become painfully obvious that the bowel perforation isn't going to heal itself.  The most difficult issue for the doctors right now is not being able to actually see what's going on.  They can see if there are air pockets both in and outside the bowel, but they can't see what's causing it or how to fix it until they go in for a closer look.  I asked about a scope, but because her intestines could be so fragile and they would still have to open her up to fix anything, it looks as if she's heading to surgery tomorrow (Sunday) morning at 7:30am. 

We've been told that the issue isn't typically life-threatening, but we were also made aware today that there is a slight possibility that they could get in there and find that it may be more than just one perforation--it could be multiple--or she could actually have NEC.  Although it's very rare, they could get in there and find that there is just too much dead tissue for her to sustain life, meaning there would have to be almost no living bowel left.  The doctor didn't tell us this to make us worry, we're just the type of parents who like to talk through everything and understand all of the possible outcomes.  To take it a step further, I'm not sharing this with you to make you all worry, but I figure we may receive questions about the possible outcomes and complications so I thought I'd prep you up front.  We're on our way to the NICU for some family time and I don't expect any major updates this evening.  We have an early and long day ahead of us tomorrow and I'll do my best to share what's going on as soon as we know.  If I could bother you to say an additional prayer for her again, it would be much appreciated.

Meg and I also wanted to say a big "THANK YOU!" to everyone for all of the e-mails, texts, phone calls, cards, and gifts.  We've been so busy over the last few weeks and I was worried that if we weren't able to respond to all of your kindness that you might think it went unnoticed or unappreciated.  Well, that's not the case.  The notes I receive daily lets us know just how much you all care about us and our girls.  We will never be able to thank you all enough, but I want to make sure you know that the support, prayers, and kind words that you provide help us get through each and every day.

While all of the gifts we've received have been amazing, I have to give an award for the most creatively presented gift (Thanks Gina!).  We received this package in the mail yesterday and we just thought it was adorable how each of the dolls came with their own onsies and how each were wrapped in their own receiving blanket.  Excellent presentation!  If you notice, two of the dolls are identical and one is fraternal, just like our girls :)

Madelyn with her doll



Isabelle with her doll



Sophia with her doll



We also wanted to share more photos of our experience in the NICU, since we spend so much of our time there. Also, one of our Marvelous Multiples nurse instructors asked if I could take more photos and allow her to share them with expecting multiples couples who will most likely be visiting the NICU sometime during their hospital stay. I'm a photographer, so of course I said "yes!"

This is one of the isolettes, Madelyn's.



This is Izzy's ventilator machine.



Here's Nurse Jennifer taking care of Isabelle.



This monitor has the ability to make your heart race and your mind panic!



These IV stands keep the fluids flowing. That's a Total Preemie Parenteral Nutrition (TPN) bag.



Here's Isabelle getting a blood transfusion.

The NICU Rollercoaster

Sorry, no pictures tonight.  It's been a really busy day and I wanted to post a quick update before we head back to the NICU for the night.

Madelyn and Sophia had both been doing very well and were pretty much tied for first in the race for "First Baby Out of the NICU" honors.  Maddy suffered a minor setback over the last 24 hours with regards to her feedings.  The net of it is, she's not tolerating the volume of milk she's being given.  She was doing well with spreading it out over more time.  Before each new feeding, they check the residuals in her belly to see how much hasn't digested and she still had seven out of the 18ml they had given her during her last feeding, sitting in her belly.  She's been spitting up and it's basically too much food for her.  As a point of reference, she's supposed to be getting 25ml each feeding.

So, even though I was going to be really excited to tell you that both Maddy and Sophie had their PICC lines removed, permanently, Maddy received an IV (hopefully, temporarily) to help supplement her nutrition until she can handle more food.  She's still on the high-flow cannula getting 3L of air.

Sophia on the other hand is pushing ahead and is tolerating her 20ml of milk each feeding.  They took her off of the high flow cannula and now she needs just 2L of air.  So far, so good.  Her weight looks good and she's producing the bowel movements of a breastfed baby.  I'll leave it at that in case anyone's eating dinner.


Isabelle's x-ray today did not show any air in the abdominal cavity, and she pooped a little bit for the first time :)  However, the doc said her bowel looks very enlarged.  He said the perforation could have healed itself and constricted to form a blockage. The treatment for that is the same as the perforation...find it and cut it out.  The surgeon wants to wait a week after the last drain was put in to decide whether to operate, which means we should know more this weekend.  Even then, she wants to take one or both of the drains out to see how she does. Maybe in that time we'll get lucky and it will fix itself.  We're definitely getting a bit more hopeful, but Dr. Colvert still seems to think it's only a matter of time until she'll need surgery :(

I'm going to do some more research on my own for alternative treatments, because that's how I am, but we do have a lot of confidence in the doctors/nurses and trust in the care our girls are receiving at Edward.

If anyone reading this had something similar happen with their preemies and wants to share the experience, please feel free.

Miss Sophia's Film Debut

Meg and I had a great idea for a date night tonight, away from the NICU.  Of course, a huge thunderstorm rolled in and foiled our plans to see a new band and get outside for a while.  Instead, we opened a bottle of wine (Meg's first glass in a year), played cards, and watched college football.  Do I have an amazingly cool wife or what?  We decided that we were going to spend at least one night away from the NICU, though we did see our girls' little baby faces this morning.  As much as we enjoyed some time to ourselves--away from the hospital and away from work--we couldn't help but talk about our babies and contemplate, on a couple of occasions, making the quick drive to the hospital.  Instead, we took advantage of some of our free time to look through some of the videos we've made over the last couple of weeks and go through some of our pics from the last couple of days.

Also, the last couple of days have been a roller coaster with regards to Isabelle.  I wrote a few days ago about the second tube they inserted in to her belly, which immediately relieved the air pressure that was building up inside.  Unfortunately, over the last few days, the air re-accumulated and expanded her abdomen to the pre-drain circumference.

Isabelle enjoying some peace and quiet


The scariest part about all of this is that there isn't a predefined treatment plan.  It seems to be a lot more of, "Let's try this and see how she responds," which is extremely difficult for me to deal with.  I like having a clearly defined plan of action and there just isn't one.  Today, Dr. Mak came back to the hospital and replaced and repositioned the drain she had inserted just a couple of days ago.

One of Isabelle's two drainage tubes



She was able to evacuate the newly accumulated air pocket.  Now, we're in wait-and-see mode.  She did tell us that if the air begins to build again, that she won't insert another drain.  At that point, they'll seriously consider more evasive surgery in which they'll open up her abdomen and try to figure out where the leak is along the intestines.  Right now, they can't tell if it's one or two small perforations or a larger one as it's something they can't see on the x-ray.  If they do have to go in, once they find the perforation, they would need to cut out that part of the intestines and sew the ends together, assuming they're in good enough shape to sew.  If not, they have a process that allows the ends to heal both inside and outside the body so they can, eventually, put them back together.  We hope it doesn't get to that.

If there's a silver lining to be found it's that the nurses and doctors continue to hear bowel sounds during their exams, which means that her intestines are TRYING to work.  If they heard nothing, it would be a sign of something more serious.  Her CBC test showed an increase in white blood cells, suggesting that they're may be an infection, but the docs, for now, are thinking that it may be due to the stress from the last several days as all cultures have returned negative.

All we can do for now is pray that, whatever it is, it heals itself before the doctors decide that she needs surgery to make it better.  We'll also ask that if you're the praying type, please say a prayer for her as she needs all of the help she can get right now.

On a happier note, Madelyn and Sophia are doing great and are really progressing.  They're slowly starting to wean them both off of their high-flow cannulas and are increasing the amount of milk they get at each feeding.  Sophia is eating so much food that they're likely to remove her PICC line tonight or tomorrow!  Madelyn isn't too far behind and should get her line removed within the next few days, assuming that she continues to increase the volume of her feedings.

I'll be honest, Meg and I are having a difficult time getting excited about Madelyn and Sophia's progress when we know that Isabelle is hurting and isn't able to keep up with her sisters right now.  We're trying to stay positive and see the light at the end of the tunnel, but it's so hard when she has so far to go.  We don't want to miss the excitement around watching our other girls making progress, I just want my tiny baby to get to a point where she's stable enough that we can turn down our worry-meter for a while.

As they grow, they're starting to look more and more like the babies that everyone is accustomed to and less like preemies.  They're not there yet, but they're on their way!  See for yourself!

Miss Sophia's film debut for all of the friend and family that want to see what a living, breathing, DeBauche triplet looks and sounds like in real life (turn your volume up)


Sophia proving she's a big girl on the scale



Sophia's beautiful eyes


Enjoy today's moment of bliss (Maddy)

The Waiting Game (update)

I know that we probably worried everyone with last night's post about our "WeePea," Isabelle (it's a diaper joke), but she's doing much better today.

Last night was especially traumatic because the neonatologist in the NICU tried twice to get the breathing tube in before the surgery.  Both times, it didn't work.  With no pain medication she was very irritated and was flailing around.  It was hard to watch her with her eyes open wide, struggling to make each breath count.

Once the breathing tube was in, they did give her pain meds, which really helped calm her down.  Shortly thereafter, Dr. Mak arrived.  She reviewed the procedure with us, but since it was identical to the previous procedure, where she inserted the first drainage tube, it was a brief conversation and she quickly got to work on relieving the pressure in Izzy's belly.  These doctors really are extraordinary.  They swoop in from out of nowhere, save the day, and jet off to the next baby in need.

By the time we left the NICU for the night, the pressure in Isabelle's belly had been removed and it looked a little more like a "normal" preemie belly.

Meg went to see the girls this morning.  Izzy looked much better, though she does still have her breathing tube it.  The goal is to take it out as soon as possible, which looks like tomorrow or Saturday.  Sophie and Maddy are both doing great.  I'll try to take some more pics tonight. 

Thanks for all of the prayers.  It feels much better knowing that so many people are behind her.