Jack Jack and the Big T-W-O

DSC_0062 Dear Sweet Jack,

I cannot believe you are two-years old.  It seems like just yesterday that your daddy and I were holding you in our arms at the hospital.  You have grown so much in these last two years.

You have developed into this spirited little boy who loves to laugh, loves to read, and loves to hang out with his daddy.  That spirit sometimes gets you into trouble, and we have had to pull out the time out stool, but even amidst the redirection you make us laugh.

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This past month you have taken on a new role of big brother.  There have been a few bumps along the way (it took awhile for you to acknowledge baby #3, Matilda, when she came home from the hospital), but you are also finding your footing as a helpful big brother who loves his brother and sisters.  You are really a very sweet and loving boy.

Over the last few months, you have also developed a whole new love of Elmo, and so we decided to embrace the Elmo at your second birthday party.  It’s fun to see the excitement you get on your face when Elmo comes into the picture.  When we walk through walmart, you spot every single item that has a ‘Mo on it, and I love trying to figure out exactly what you are pointing at.

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Another big change over the past month is that you are finally starting to separate from your paci.  We mainly only use it now for naps and night night.  I have been surprised to see that because the babies’ packs look quite a bit different from yours, you do not even try to take theirs.

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Some of your current favorites:

  • You still LOVE to read.  We can go through quite a few books in one sitting.
  • You love brushing your teeth, and if we would let you, you would brush your teeth 5 or 6 times a day.
  • Bath time is also one of your favorites.  I’m a little surprised to say how much you have taken to good hygienic habits.
  • You love to swing and play at the park.  You do not feel comfortable going down the big slide, but the you will go down the medium-sized one by yourself.
  • You have gathered quite a collection of puzzles, and you love working them over and over.
  • Food wise, you have definitely moved into the picky side of things.  However, sweet potatoes, bananas, and peanut butter crackers remain your favorites, and we can always pull those out in a pinch and be confident you will eat them.
  • You love to sing and dance.  Your singing is still only recognizable to us, but it is so sweet to listen to.  You have also developed a signature dance move that is reminiscent of your CoC background.

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It has been an amazing two years, and while the typical two-year old behaviors have begun to make their appearance, it is tremendous fun to watch you explore, develop, and grow.  Your daddy and I cannot wait to see what the next year has in store for you.

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Holiday-esque News and the Trio Is Home

Well, first and foremost (before I forget to record it for posterity’s sake), all members of the trio are now home.  Lillian and Harvey came home on Thursday, December 12, and Matilda came home on Monday, December 16.  It has been WONDERFUL to have everyone in one location finally.  Originally, all three were supposed to come home on the 12th, but the day before they were discharged, Matilda had another brady, and so she had to stay a bit longer.  My guess is that she just wanted a little extra pampering by the nurses all by herself before retiring to the hustle and bustle that is now our house.

The holiday season is upon us, and we have had an interesting Christmas.  I guess I need to realize that nothing holiday-wise will ever truly be calm again, but ultimately, I wouldn’t have it any other way.

Rather than trying to recap everything, I’ll just post a holiday review in pictures.

Jack had his preschool Christmas program at school a little over a week ago.  We loved watching him do his thing.  He, however, loved looking at the Elmo slippers of the child behind him…

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…waving to the people in the audience…

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…and doing a little bit of participatory sitting.  To be fair, he had a MAJOR meltdown that evening on the way to the program (it had been a very long day), and so we realized that a paci’d Jack was probably the best we were going to get.

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Post-program, the preschool had Santa available to take pictures with.  It didn’t go too well.

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Neither did a picture with the blow-up penguin.  We were 0 for 2.

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This morning, I really attempted to get some “family shots” of all the kids in their Christmas outfits.  It wasn’t my most successful endeavor.

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This is the best picture I was able to get with Jack and the babies.  Meltdown ensued.

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Then we threw my niece in there to see if she could help the little ones fair any better.  It didn’t work.  3 of the 5 were crying at one time.  Only the oldest grandchild and the youngest grandchild remained calm.

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The other day, my sweet intern came over to our house to take some pictures of the babies.  She got some really sweet shots.

Lillian Purple

Harvey Blue

Matilda Pink

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Jack has had a rough transition to life with babies in the house, but through it all (even amidst the extra minutes in time out), he is definitely a fantastic big brother!

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Update on the Trio – 8 Weeks Old Tomorrow

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Well, the babies will be 8 weeks old tomorrow.  I absolutely cannot believe that they are this old.  It all still seems a little surreal.  Since we haven’t had them home to enjoy them (and fully appreciate the chaos that is life with triplets), it is sometimes hard to fathom that we are now a family of 6.

However, when I went to the NICU yesterday, they told me to bring in a car seat with its base when I came back today.  For those not familiar with “NICU speak” that means that they want to start doing car seat studies on the babies.  It means we are nearing the end (knock on wood) of our NICU journey.

Then, today when I went in with a car seat and base, the doctor told me that he was writing orders for all three babies to have their feeding tubes pulled.  This is another step towards getting us home.  With their tubes pulled, the babies have to eat all of their feedings from a bottle and must drink at least 40mL  (about 1 1/3 ounces) at each feeding.  If they do not complete their minimums for three feedings in a row, then the tube goes back in.  They also must continue to gain weight.  This is monitored over a couple of days and assuming that the car seat study was passed and that they haven’t had any bradys or apnea episodes, then they get released.

Harvey has been the one with the most recent brady.  He had a pretty significant one on Sunday.  So, he has at least 5 days past that brady that he will remain in the NICU.  More than likely the babies will not all come home on the same day, but each time it looks like one is pulling away from the others as far as how well he or she is doing, the others play catchup and equalization happens.

In preparation for the babies coming home, we have been showing Jack the video of the babies that Corrie made as part of her The Tiny Footprints Project pictures.  We talk to him about the babies, and he waves at them.  We are trying to introduce him to them since he still hasn’t had any contact with them.  He absolutely LOVES watching the video. As we were watching it this evening, he was trying to make the same “tongue sticking out” face as Lillian.

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There is so much I want to record about the babies, but I don’t seem to have the words (or mental energy) to do it.  So, I will just “bullet point” it for now.

  • We LOVE LOVE LOVE our NICU nurses and doctors.  They have taken great care of us and have made us feel like family.  Truly, I have laughed and cried with these ladies and gentlemen every day for the last 8 weeks (more if you count the antepartum nurses).  This is how special these staff members are…they were genuinely excited for me when they saw me walking in with a car seat today.  They also stop by even if they aren’t assigned to the babies that week to see how they are doing.
  • We are getting ready to start on Harvey’s next “medical journey.”  We have our referral name in hand and will make that call some time this week.
  • We also have a team of therapists and doctors that we will continue to work with past our time in the NICU to make sure the babies continue to develop appropriately.
  • Lillian seems to be our “me first” girl.  She is the one whose water broke at 27 weeks to kick off this party.  She was the first one pulled out at birth at 29w4d even though she was technically Baby B.  She is the one who has most recently become the star eater even though she is the smallest and should be the most fragile.
  • I am very anxious to get the girls together.  There are days that they look so similar to me and others that they don’t.  I am very worried that I won’t be able to tell them apart and will mix them up.  Then, in 20 years there will be a Lifetime Movie about my family because I mixed up the identity of my girls.  We WILL be painting some toenails in the beginning.
  • This is very indelicate, but man oh man is Matilda stinky.  That girl has some very bad smells that come from her.  She is the favorite of some of the male nurses, because of her gaseous nature (that really makes me laugh).  She also has some solid power behind that gas.  She has managed to soil a hospital recliner and the wall and the floor with her flying poop.  I know that is horrible to write, but that is one of those things that I really do want to remember.
  • Each of the babies are in the 6-lb range.  They are growing really well.

I know my blogging will probably drop off as the babies start coming home, because the busy-ness will overtake me, but to be honest, I can’t wait for that moment.

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Update on Trio – 6 Weeks Old!

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(These are our “then” and “now” pictures.)

I can’t believe it.  Our sweet babies are 6 Weeks Old today.  It seems like they were just in my belly (and let’s face it, the boy still thinks they are).

They are continuing to do really well, and the doctors are mentioning “when they come home.”  Those are glorious words to our ears.  We are hoping to have them home with us in the next couple of weeks, but as with everything, we ultimately just have to wait and see.

All three babies are over 5 pounds and are gaining more weight every day.  They are all also continuing to do better with their feedings.  They still receive a good bit of their nourishment through the feedings tubes in their noses, but every day they work to do more with their bottles.  Generally speaking, Matilda is doing the best with eating.

I still am not sure if I can tell the girls apart.  There are moments when they look completely different to me and moments that I can’t tell who is who.  Part of that is from not ever seeing them together.  Their touch times are an hour apart, and while their bassinets are in the same bay, they are close enough together for me to be able to care.  So, there may need to be some fingernail painting until I am sure who is who (yes, that makes me feel like “mother of the year”).  Fortunately, Harvey has two identifying features to make me sure that I know who he is (his head and his boy parts).

Hopefully, the next few weeks will fly by and our babies will be home before we know it.

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NICU Mom

Lillian's foot

We’ve hit one of those moments.  We’ve been “banned” from the NICU.  No, it isn’t really as dire as it sounds, but it still makes my heart hurt.  Jack has been battling RSV for quite some time, and now as a secondary infection has the flu.

So, I did what I am supposed to do every time something like this happens.  I call up to the NICU to talk to the nurses and doctor about what this means for us.  Usually, I answer questions like “no, I am not running fever,” and “no, I am not showing any of the same symptoms,” and “yes, I am practicing very good hand washing habits.”  However, after answering those questions yesterday, the doctor had to make a different judgement call than he has had to before.  He told us that we need to not come up to the NICU until this weekend (at the earliest) if we (Greg and I) are still asymptomatic.

I completely understand and appreciate the caution.  I don’t want to take a chance of my babies or any of the other NICU babies getting sick, but it makes my heart hurt.  Unfortunately, it is just part of the NICU life.

In the midst of this, I was reading something on Facebook posted by one of my fellow NICU triplet moms, and I found it very poignant.  I love her last sentence.  It helps with perspective in times like these.  I thought I would share it for anyone who has ever had to go through the NICU life.

*****

This is written by Bess Gairns whose little one was born at 26 weeks and 5 days old.

Dear me,

Today it feels like this will never be over. It feels like every day for the rest of your life will be spent in this room. I just want to tell you that, sooner than you think, the moment will come when you find yourself putting that baby in the car, in total disbelief that this is it, it’s over and you can just go home.

One day there will be no more alarms and monitors. No more bright lights and humidicribs. No more incessant hand washing and nurses. One day it will just be you and your baby, alone, in a silent room, at home, where you belong, and this will all feel like it happened a thousand years ago to someone else.

Take a photo every day. Take the time to embrace every milestone because one day you’ll wish you could explain to this child just how extraordinary, how captivating, their story really is. You’ll wish they understood just what it took for them to be here. So write a note every day, and one day, when you have a moment of peace, you’ll make the scrapbook of a story worth telling.

I know that you look around at the other mums and you feel shy, exhausted and like there is never a good time to chat. I wish you knew that a year from now those women will be some of your closest friends. They will be the only ones who ‘get it’. So smile at them. Look out for one another. Leave a note with your name and number because these women will be in your life forever. Their faces will be etched in your memory for the rest of your life because this journey is something you need to share. This load is too great to carry alone and no one will ever understand it the way they do.

I know that right now expressing breastmilk is hard and sometimes you don’t know why you bother. In a few months from now, you’ll sit in a room alone with this creature and in the dull glow of a night light, he will lean his head back, look up at you and smile as if to say “thanks Mum”. In that one moment, every minute spent listening to the dreadful squishing of that pump, every mastitis ache and every millilitre you made will have been worth it.

I know there are moments where you feel like you just don’t want to go to the hospital today – sometimes you don’t want to go ever again. I know you feel like that baby isn’t really yours anyway. It’s okay. But one day you will feel it. You will know what all those other ‘lucky’ mothers talk about. It will take you longer than them, but it will happen and it will be worth it.

I know there will be moments on this journey when you can’t bear to watch, when you can’t stand to see the pain and the things they have to do. I won’t tell you it’s okay, because it’s not. There are so many things about this that are unfair, and this one is the biggest. But you need to remember that this is the only way. Without this there won’t be anything to come after. These are all the things that will make joy possible. So please remember that you aren’t a bad mum for having to wait outside, or for being upset. You feel like this because you’re a good mum and you’re fighting the instinct that tells you to grab that baby and run.

I know sometimes you find yourself in tears for no real reason. Don’t be afraid to cry. Even if you try hard to avoid it, your grief is there and it is real. It’s okay to be heartbroken. This isn’t how it was supposed to be. You were ripped off. You miss the tummy kicks because they aren’t supposed to be over yet, and even when they say it could be worse that doesn’t negate how bad it actually is. So it’s okay to grieve the loss of what you don’t get to have. You won’t ever get it back and you won’t ever be able to change it. So, stop. Cry. Because this is your reality now and it’s okay to feel sad. It’s okay to be angry. Embrace it. Right now it feels like it could swallow you alive, but it won’t. It will make you a stronger, different, but better version of you. This experience will change the person you are. It will make you forever grateful and eternally optimistic and one day you will understand that these are qualities that you were lucky enough to have earned the hard way.

One day you will look back on this and you will know that your baby isn’t like the other kids. Your baby is a force to be reckoned with: resilient, a fighter, a survivor. Your baby survived the unthinkable, the unfathomable. Your baby is a superhero. But I want you to remember that you are too. Surviving this will make you into a hero in your own right.

I want you to know all this because one day you’ll be at the supermarket, chatting about the sweet little thing who’s sitting in your trolley smiling. When they ask ‘how old’ and you answer and for the very first time the conversation doesn’t lead to talk of prematurity, birth weights, gestational ages and NICUs, you’ll find yourself standing there with a silent grin. You’ll be smiling because you know a secret and those around you have no idea. You’ll know that you’re in the presence of a wonder of modern science and medicine. You’ll know that you are in the presence of a superhero. You will know that this isn’t just any child; this is a living miracle.

So breathe. Feel. Embrace and know that these ‘worst days’ of your life will make every single one of the ‘good days’ greater.

Love, 
Me

Link:  http://www.bordermail.com.au/story/1913561/dear-nicu-mum/

 

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The Jack Attack

11.3.13 B

Since the boy has gotten left out of the blog posts a bit lately, I thought I’d do a quick post on our almost two-year-old (who is currently a bit under the weather).

The other day, Mrs. Tracy sent home some cookies with me that she had made (first off, these are unbelievably good cookies), and since Jack is so limited on what he can eat because of his allergies, we were thrilled to figure out that he could indeed have Mrs. Tracy’s cookies.

To say he devoured his cookie is an understatement.  He was in cookie heaven.  So, we had to send Mrs. Tracy a video of him telling her “thank you” (in sign language).  Here is that video.  Notice how he also “says” please and more.  He really wanted more cookie.

P.S. Ignore the red mark on the child’s head.  He had a little trip-and-fall accident on the way back from the park.

 

 

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Update on Trio – 4 weeks 6 days

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Yep, that’s right.  The triplets are 1 day shy of being 5 weeks old.  The best way to summarize where we are right now is good.  Yep, we are good.  The babies are really progressing well, and after a conversation with the developmental specialist today, we might have a baby home with us in 1-2 weeks.

The current stats and information…

Weight:

  • Lillian – 4 lbs 7 oz
  • Harvey – 4lbs 12 oz
  • Matilda – 4 lbs 9 oz

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Feeding:  In the last 12-24 hours, all three babies have drunk at least two bottles of 40mL each (plus some additional feeds of about 20mL each).  That is big time in the world of feeding.  There is a very special way that they have to be held when being fed, and I am working to get that down so that feeding continues to go well.  Pretty soon, we will need to have the husband, my mother, and my dad trained on how to feed the babies (yes, it is that different).

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Eyes:  Each of the babies have the early stages of retinopathy of prematurity.  That is not unusual for the age and weight they were born at.  L’s seems to be the most concerning to the doctor, so she will be tested again in a week, and H & M will test in two weeks.  They will continue to be tested until 50 weeks gestation (there are many things that we still count in gestational age).  Ultimately, it isn’t anything we are going to be worried about until the doctor tells us to.

Alertness/Body Movement/Response:  All three babies are continuing to look great in this area.  They are evaluated by the Development Team (OT, PT, SLP) every few days, and they will continue to see this team once they leave the NICU so that we can be proactive about any potential issues.

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Hematocrit:  All three babies have low hematocrit number which means they are anemic.  The typical “cut off” range for then administering a blood transfusion is 23.  Lillian hit 23 last week.  However, further testing shows that her body is producing red blood cells, so the neonatalogist decided that the best course of action is to hold off another week (since she is doing well overall) to give her number a chance to go up.  Otherwise, a transfusion would trick her body into not producing red blood cells since it would then have plenty.  In the meantime, she is one pale girl.

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Harvey’s Head:  We are still in a waiting game with this.  As he continues to grow, it appears (visually) that it is the single suture closed (the sagittal suture), but that won’t be confirmed until he gets out of the NICU and the neurosurgical team runs their tests.  I have had the opportunity to visit with two other moms whose sons had craniosynostosis. I have gotten good bit of information from them, and while I am not thrilled with the idea of this major surgery on my baby, I am feeling a little calmer about the overall outcome.

As always, thank you so much for your kind words, your prayers, and your help.  We couldn’t do this without everyone.

 

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Update on Trio – 3 Weeks 1 Day

11.4.13

You take the good, you take the bad, you take ’em both and there you have the facts of life. The facts of life.

This is the song that has been playing over and over in my head the last few days.  We have definitely had good, and we have definitely had bad.

Good:  All three babies are gaining weight and growing well.  The are each up over 1500g which means that while they are all still in their isolettes, they no longer have to use the body probe to regulate their temperatures.  Instead, they get to wear onesies and be swaddled.

Good:  Each baby is showing more and more moments of alertness.  Harvey and Matilda are by far the most alert, but Lillian will show you her beautiful eyes when she feels so inclined.

Good:  We have the most wonderful NICU nurses.  I have really felt good about the nurses they assign to our babies.  For the most part, we have been seeing the same nurses, and because they get to know our babies, they really are providing great continuity of care.

Bad:  The babies are back to having more breathing, heart rate, and oxygen level issues than they were having.  This makes for a lot of alarms going off, and it can be unnerving.  I have gotten pretty good at identifying who is alarming and what type of alarm it is based on the sound so that I am not as on edge when I am there with them.  One of the byproducts of this extra alarming is that their feeds have had to be extended back over 90 minutes so that their bodies can hopefully handle the space decrease in their belly area when food enters in a way that will minimize the heart, breath, and oxygen level effects.

Bad:  Harvey has been diagnosed with craniosynostosis.  This means that some of the open areas (called sutures) in his skull that allow the skull to expand correctly so that the brain can grow correctly have prematurely fused together.  This is not a problem that will be addressed in the NICU, but once he gets out, we will be referred to a neurosurgeon or a craniofacial surgeon in order to open back up the fused sections so that his head and brain can develop normally.  In the meantime, we just keep working on all of the NICU goals.

Despite the bad that we have been presented with over the past few days, we do still try to focus on the good, because there has been so much.  Each day is a journey, and we feel blessed to be the babies’ (and the boy’s) parents.  Thank you for your continued prayers.

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Update on the Trio – 2 Weeks Old (What a Great Day)

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Do you notice anything?  If not, look again.  It was a big day for the triplets in the NICU.  Not only did they turn 2 weeks old today, but all three of them got their C-PAPs off today.

I know, I am still in a bit of disbelief.  I went in for their 5:00am “touch time” this morning, talked to the nurse about what a good night they had, watched as all of their Tuesday tests (chest X-ray, head ultrasound, labs, MRSA swab, etc.), and then headed out for a meeting and doctor’s appointment.  When I arrived back to the hospital for their 2:00pm “touch time”, I peaked in on Lillian to see this beautiful sight.  It was a great 2-week old “birthday” surprise.

What ended up happening is that while they generally do not try to remove the C-PAP until 32 weeks (the babies are a few days away from this), the doctor looked at their chest x-rays and decided that their lungs looked really good, and that it was time to pull them off.  Matilda does have a nasal cannula (and there is a chance the others will need one if they get too tired out), but it is way less obtrusive than the C-PAP hook-ups.

In other news, both Lillian and Harvey’s head ultrasound came back with the same shadow.  So, the doctor is calling it a Level 1 brain bleed.  He said that because it was so small and had not grown any, that we should not be worried, and that they would just keep an eye on it.

All three babies have now also hit the 3-lb mark (even little Lillian)!  Today is one of those days that we feel really blessed.

I leave you with my favorite picture of the moment.  The diaper on the left is the diaper the babies wear (size XS Preemie).  The diaper on the right is one of Jack’s diapers (size 4).

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Update on the Trio – 1 week 5 days

What a day (really, what a week).  The short of it all is that the babies are remaining relatively stable (and we are so incredibly thankful for that).  However, the past two days have had lots of little issues that have made them a bit more stressful than usual–more brady’s than usual, lower blood oxygen levels, shallow and fast breathing, etc.

I was able to spend this morning and afternoon at the hospital changing diapers, taking temperatures, and holding babies, and that definitely made it a much better day.

  • Harvey and Matilda have both hit the 3-lb mark once again.  Harvey weighs in at 3 lbs 2.8 oz, and Matilda is 3 lbs 0.7 oz.  Lillian is almost there.  She is currently 2 lbs 15.6 oz.
  • Everybody has had their PIV’s (peripheral IV’s) and PICC lines removed!  This means that they are handling their tube feedings well enough (with some modifications such as lengthened times) to not need IV supplement–woohoo!
  • Lillian’s heart murmur is creating a few issues with regards to feeding and blood oxygen levels.  Her feeding level has topped off at a slightly lower level than the others. The doctor is going to keep an eye on this.
  • Feeding levels are:  Lillian – 25 mL, Harvey – 29 mL, and Matilda – 26 mL
  • Not only have their feedings been calorie fortified, but they also began adding a liquid protein to them today to help with weight gain.
  • Matilda is having some issues with swelling in her face.  As of right now, it is thought to be fluid accumulation from a combination of her CPAP mask and positioning.  Again, it is just something the doctor is going to keep an eye on.
  • Both Lillian and Harvey’s newborn screenings came back abnormal.  So, both of their newborn screenings have been rerun.  We were told not to be overly-concerned with the abnormal results because of when they were born.  So, we are currently just waiting to see what the 2nd test tells us.
  • Also, both Lillian and Harvey had a shadow show up (one of them on the right side and one of them on the left side) on their head ultrasounds this past week.  The doctor felt like the ultrasounds were inconclusive enough that he wants to rerun the ultrasounds on Tuesday and see if he is able to get a better idea if there is truly anything to be concerned about.  The good news is that neither one seems to be exhibiting any signs that might suggest they are suffering from brain bleeds.

We appreciate all the people who are covering our family in prayers and all the kind words.  That means so much to us.  I’ll leave you with a few pictures.

(Lillian’s foot with my hand…what a dainty little foot.)

Lillian's foot

(Harvey is taking a good nap.)

Harvey Asleep

(Matilda got a new mask.)

Matilda's new mask

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