Our summer

Hello little blog, it's been a long time. I have a pending post that I started writing the day before the trio's 2nd birthday.  Their birthday was on May 17.  Now the 4th of July is around the corner.  It's almost ready...and hope to post some day.
I think of blogging often, but reality and truth is that I have no time or energy.  So much has happened in our lives, that it's almost impossible to play catch up and document.  So maybe I won't and I'll start at where we are today.

Right now, the trio is asleep. We just spent 2 hours at their Toddler and Two's group and my brain feels like it hurts.  I am on every single second, way more than when we are home.  It's vigilant watching.  Being aware of where 3 little bodies are at all times is exhausting.  It's singing and talking and reading and lots and lots of teaching....
"we go up the slide, down the slide, your turn, his turn, her turn, wash hands, sit please, plates are not for banging, your mouth is too full, get another one, say sorry, good job, please and thank you..." 
...and non stop x three for two hours.  Then there is the 25 minute ride home...and sometimes there is silence.  I've gotten quite good at tuning out the toddler songs, and that's when I remembered our blog today.

A little bit about their group.  It is run by the Deaf and Hard of Hearing program.  It's a step before preschool.  They play, sit in circle and have snack with other children, with mommy there.  Marcos continues to have mild hearing loss, and the coordinator is nice enough to let me bring the whole gang.  There are some sounds Marcos does not hear, and since this can significantly affect his development, he is being closely watched.  Thankfully, his expressive speech has made significant progress (putting 2 words together) but Marcos continues to be tested often.  Testing a toddler is quite difficult so we have to be patient and keep waiting for the official diagnosis...(meaning it may never improve).  Most likely he has an abnormality in the middle ear or a tiny bone never fully developed.  Mild hearing loss is easily fixed with a hearing aid.

Our summer schedule has us at story time on Tuesdays, Toddlers and Two's on Wednesday, Early Intervention on Thursdays, and Physical Therapy on Fridays.  That's just the trio.  Isabella has swimming on Tuesdays and Thursdays and dance on Wednesdays.  She is at farm camp this week.  Yes, farm camp...only in Petaluma, and if the trio only knew where big sis is at, they would be so mad they don't get to see animals everyday! Then there's the park, the grocery store, and errands plus the cooking and the feeding, the never ending laundry and so much more...

Back to today.  Here are  pictures of Sofia...painting an ice cream out of pink shaving cream during group.  A first for her...oh, how her sister loved doing this.  At their age, my Bella was a pro at art projects.  The boys lasted only a few seconds before they were off to cause trouble.

Oh little blog...hope I visit you again soon, and friends...if you are reading, I miss you all and hope to catch up soon.

March already?!

Since our last post, there's been some sickness.
Sofia had some stomach bug with a fever that is pretty much gone....sadly, she lost a pound.
Everyone avoided it except for me.  Everyone knows things are rough when mom is sick...luckily, it got me on a weekend and dad took over.

We also had ANOTHER eval for Marcos by another speech pathologist who also watched him eat.  The not so great speech eval in February raised some concerns with the way he ate. Luckily, this mom was right.  He eats just fine. This time, we got, what I feel, a more accurate evaluation.  He isn't THAT behind after all, but he still qualifies for speech therapy.  Carlos was also evaluated the same day.  Thankfully it was an in home evaluation.   He is right on track for his adjusted age.

The kiddos are into Elmo and Woody.  The boys are repeating 2 word phrases more and more, and Sofia's first 3 word phrase:  "Move on back", from Wheels on the Bus.  She also tries to push the boys out of her way and says "Go, go go" as in get out of my way!

There's been lots and lots of playing...

Lots of unzipping of the pj's...

Lots and lots of reading...

More and more TV, we are up to 20 minutes at a time, just enough time to watch Elmo's World.
 Woooo Hoooo!!!!

Big sis had wacky hair day at school....our first science fair and parent teacher conferences, which truly deserve their own post.

Lots and lots and lots of nose wiping!  Still cute even with mocos on his face.  

And finally today... their noses are much better, and coughing last night was better than the previous night.  The kiddos had their Synagis shot, there might be one more.  The rest of preemieland is telling me no but we'll wait and see what our doc says.  Next week, spring break for Big Sis and Marcos is getting his 2nd set of tubes (ears) and will go under general anesthesia again.  I should be a pro at this but still scary.  We hope we can get him out of the house without eating or drinking anything without too many tears.  'Til next time....

High Risk Visit

February 27, 2013 was a big day! Finally we made it to our 2nd follow up visit with the high risk nursery clinic. The first time it was scheduled we had to cancel the morning of because one of the three kept us up all night with a fever/cold.... The 2nd time, it was the stomach flu... Again we canceled the morning of due to no sleep and lots and lots of throw up but last week... We made it!

The six of us were out of the house by 7:45 a.m.! That in itself is a major accomplishment! And...can I just say that the clinic is soo far! About an hour or so away from us...How, really, how did that I make that commute almost every single day for 3 1/2 months?!

So what is the high risk nursery follow up? Well let's face it, when a baby is born at 25 weeks gestation, there are no guarantees that everything is going to be okay. None whatsoever. When we brought the trio home, I knew in some ways our journey was just beginning.  Many things could have interfered with their growth and development, and still can.  The high risk clinic is made up of a team of specialists that assesses their progress.  And if necessary will track them for FIVE years.

Most importantly they have experience working with preemies and know that most likely a 25 weeker will not be caught up entirely by the age of two. They do not stop adjusting age until the kiddos are three.  And another cool thing, one of the doctors we saw that day was in our delivery room and the first to hold Sofia.  He saved Sofia's life. And today she is right on track. At 21 months she is exceeding some milestones for her adjusted age of 17 months.  She refused to do almost everything that was asked of her because she was too busy saying hi and interacting with everyone. Sofia's speech has really taken off this month. She is now saying 2 word phrases like bye milk, night mama, bye dada, more peas, and bye poo poo, and yes Dr. G sees potty training in our near future! She is almost running, and the only concern her physical therapist has is her inability to sometimes stop.

Preemies (and some full term babies) don't always follow the order of things, it's called sprinting. In her case, she walked before she learned to stand still in one place and now has a hard time stopping especially when she is moving too fast.  She works on this everyday and our therapist is predicting she will be released from PT when she turns two in May!

They boys are not too far behind and actually performed quite well.  They scribbled, said a couple of words, pointed to some body parts and were quite social.  There are a couple of minor gross motor concerns we need to keep our eyes on:
Carlos favors his left side and tilts his head to the left while Marcos prefers his right side.  Marcos has some stability issues but he has not been walking as long as his siblings.  He'll get it figured out.  This may allow the boys to get PT for an additional six months, we hope.

High risk is not too concerned with their speech delay.  Though the speech evaluation Marcos had in early February gave him the diagnosis as severely delayed.  The doctors are certain our trio will catch up, it will just take a long time.  For now Marcos will start getting more services (speech therapy) and his hearing loss is the main concern.   He is scheduled to get his 2nd set of tubes on March 19, immediately followed by yet another hearing test that same week.  Now if this doesn't work, we will start  looking at other options like a hearing aid.  As always we are praying and leaving it in God's hands.

For now all lungs are clear and we will continue daily pulmacort and albuterol on an as needed basis.  We hope to take a break again this summer but compared to all the drugs they had in the NICU, it's really no biggie.  They were very happy with their weight and especially their height!  They are still small (Carlos, 21 lb 4 oz, Marcos, 22 lb 1 oz and Sofia, 21 lb. 6 oz); but, as long as they each follow their own growth curve, and continue to stay healthy, I have to be ok with the fact that they may not be on the "regular" chart for awhile.

What else has happened this month?  The trio has said good bye to their bottles!! That's right!  The boys had no trouble, while Sofie kept her morning bottle for a couple more weeks but she hasn't had her morning bottle since last Friday! Finally this house is bottle free!!!!!!! My babies are full blown toddlers!

Phone calls galore!!

This morning has been a bit crazier than usual, that included lots of important phone calls. 

We first had a call from the director of the Deaf and Hard of Hearing Program (DHH).  

Very informative. Marcos qualifies for the program.  I just need to get one of our doctors or audiologist to make the referral.  

Then we got a call from scheduling....Marcos's tube surgery is tentatively set for March 19.  

This is requiring lots of coordination because since he is going under general anesthesia, we are requesting that his clogged tear duct be repaired.  Again something that we've been dealing with for awhile, that he has not outgrown.  Our pediatric opthamologist explained it like this:

"Basically once asleep I use a thin silver polished wire called a probe and pass it down thru the tear duct drain system to open up any partial clogs"

This will help Marcos not get teary every time he goes outdoors.  No matter what the weather is like outside, he often looks like he has been crying, when he hasn't been.  I've kind of been avoiding this because it's not causing any harm but if we can get it done at the same time, we will be very happy so we can enjoy the outdoors more.  Our doctors have advised to have the procedure done if it had not resolved itself at 18 months. The time has come.

We've also had to reschedule his speech evaluation a couple of times due to lack of childcare for the other 2 but its now back on our calendar again for February.  Another advantage of the DHH program is that they provide a home visit vs. the clinic appointment through our insurance.  So we will wait and see what happens with that referral. 

Though hearing tubes, speech delay, and clogged tear ducts can also be common in full term babies, its really hard for me not to think that this is a result of being born at 25 weeks.

But in reality, there are way more serious things we could be dealing with so I move on and continue to advocate and get things done.  

In between all this important business I was able to capture some sweet moments....Sofia and Carlos kissing.

 With both her brothers!

Somehow all these calls are helping ease the frustration I feel when I can't get anything done....besides taking care of all the kids. 

Yay for nap time...wait...did I just hear Sofia say "hiiiii" through the monitor?!

Crayons!

 I've been wanting to do this for a few weeks now.  Thankfully last weekend while Daddy was home, I remembered. and put the crayons in front of them.  Our activity lasted, uuummm, maybe a whole 5 minutes, definitely no more than 10.  Baby steps, baby steps...
The trio is about to turn 18 months old but we are not quite ready for coloring yet.  Opportunity alone and scribbles plus cause and effect will continue to be our focus.

Every six months, the three go through a developmental evaluation to see where they are at in all areas.  Marcos had his last Thursday and here's what is written on his report:

Cognitive & Fine Motor: 12-14 months
Receptive Language: 12-14 months
Expressive Language: 11-13 months
Gross Motor 9-11 months
Fine Motor 10-12 months

At the time of the assessment, his actual age was 17 months (adjusted age = 14 months) so he is doing great in a couple of areas.  His biggest challenges are gross motor (he is not walking yet) and language.  He has always been the least vocal out of the three.  Colds (runny noses) have gotten in the way each time a hearing test is scheduled.  The test after he got ear tubes put in did not show a significant improvement, and the doctor really didn't have an explanation.  The good thing is that usually gross motor usually takes over the brain so once he figures that out, we are hoping for a language explosion.  This is the trend that Sofia (our walker) followed and we are praying that the boys will get there soon.

I would be lying if I said that these numbers don't get to to me.  But only because all this stuff is a reminder of what they have all been through.  I allow myself moments of sadness, worry and concern but then I move on knowing that these three beat the odds.   In the mean time, the waiting game continues. Patience, patience, patience...and everything on their own time.

Did you know that early intervention and medical professionals stop adjusting age at TWO?
That's in six months! I'm thinking it may take much longer for my little ones to catch up and hopefully they will qualify for more services to speed this process up.
And so the journey continues....

Hosted by Krystyn at Really, Are You Serious?

This past week

Oh lil blog how I miss you.
Life has been keeping us busy.
I am down to pumping three times a day and usually while the babies are awake meaning very little computer time. 

A recap of our week....our week got off to a great start...

On Monday, FOUR NICU nurses came for a visit while I went and got an hour massage! I was in heaven and so grateful of their time and love for the trio. I even got a cup of coffee all by myself, this meant, I actually sat down and enjoyed SILENCE.  Tuesday, Carlos had his hearing test which showed fluid in one ear. Since this is the first time it has shown this, his pedi is requesting another test in a month or two hoping it resolves itself. It also looks like the doctors would like to move forward with tubes for Marcos and I'm hoping the ENT doctor and I stop playing phone tag this week. Carlitos also got his blood drawn and I hated every minute of it. I am not looking forward to taking the other two. I put it off as much as I could. Our doctor has been asking since before our 9 month check up.  This is the real thing.  I had to hold my little Carlos on my lap.  I was so nervous.  Of course I had to ask if the tech person had experience drawing blood on little guys.  "I am from the hospital.  I do this all the time."  I warned him that my little kiddo had very little veins.  Not happy to say that he did NOT seem to know what he was doing.  Carlos screamed the whole time.  I had to hold his little arms.  He needed to get 2 other techs to help.   They seemed so surprised at his strength.  I should have warned them.  They had to use both arms and then they say, "Not sure we got enough blood but we'll send it off and let you know if we need more."  Umm, no thank you!!
Wednesday, the babies and I ventured out and did some walking at the outlets. We met another mom there who also has triplets. It's so nice to have a friend nearby who gets the craziness we go through! Thursday-our home visitors from the early learning institute continue to be impressed with the trios progress. They walked in to find Sofia sitting unassisted. Her and Marcos are lasting a long time, and I couldn't be more proud. Carlos is also progressing. Isabella  had a dentist appointment that afternoon. The trio stayed behind while we took care of business and did some speedy Target shopping.  We were ecstatic to know she (again) has no cavities!!! Yay, Daddy!!!  We were a bit shocked to be honest.  In between caring for the trio and many sleepless nights, teeth brushing is the last thing on our minds.  I was also happy to talk to our dentist about the babies' teeth.  She seemed very knowledgeable on preemie teeth and all the problems they can have.  Our plan is to take them in as soon as the first tooth comes in.
Friday was physical therapy morning.  I love the individual sessions they each get but I do have to adjust one or 2 of the babies' schedule resulting in a little bit more work.  But I know it is so worth it.   We also had a very nice visit from a mom I recently met who is expecting three little ones.  We are so excited to have so many triplets near us and praying that she has a very long pregnancy.

And here we are today, Saturday...usual baby stuff.  We were successfully able to go down to four bottles a day, three solid meals and two naps.  Babies are still coughing, and Sofia's wheezing is back.  I was so bummed but praying that we will outgrow this soon.  She went 10 days symptom free.  We are spending about 2 1/2 hours per day doing nebulizer treatments of albuterol and pulmacort.  Not fun but I've become to accept this as part of our daily routine.  We have an even busier week ahead of us, lots to do for the party.  Yes, we are a week away from the big birthday bash.  Not really sure what I was thinking and when and how things will get done, but we are celebrating the crazy year we have had.  We are so excited.  Emotional days for sure.  A year ago today, I was hospitalized for preterm labor. Lots of painless contractions.  Medicines and steroids for the babies' lungs...Thanking God for the five additional days the babies had in mommy's belly.

Happy Mother's Day to all of you!

Physical Therapy

Here is Sofia during her Physical Therapy session a couple of weeks ago....followed by Marcos.
Carlitos went first and was already napping when I finally filmed these. Hopefully I will get him next time.

10 month update

On March 17, the babies turned 10 months (adjusted age: 6 months, 2 weeks and 4 days to be exact!! I was cuddling a baby that morning at around the time they were born (4am) just thinking about the day they were born...

Weight Check
Carlos-13 lbs. 9 oz
Marcos-14 lbs. 14 oz
Sofia-14 lbs. 4 oz

All three are smiling and laughing and are quite ticklish.  All three are thriving and all of their doctors are so happy with their progress.  We had our first developmental follow up appointment on February 25 with our NICU and it went great.  I was a bit nervous but was happy to hear all their positive comments.
I realized that they can do more than I give them credit for.  I guess that comes with the multiples territory. My forgetfulness and/or lack of individualized attention and time.
All three are reaching for things, tracking big and small objects, holding toys, starting to transfer from one hand to the other....All three can roll from their tummy to their back, and with a lot of encouragement they can roll from their back to their tummy.  It doesn't happen too often but I know that they can do it. They are still figuring out what to do with their arms and tolerating tummy time more and more each day.  Sofia is able to move her arms and legs while on her tummy.  She is very curious and wants to touch everything.  Everything is so exciting to watch.  They can be entertained for a few minutes with different toys and they are starting to sit on their own for a few seconds at a time. We have lots cooing and some babbling, they definitely let us know when they don't like something.  They are getting better at solids each day.  Sofia is definitely more alert than the boys and wants to grab everything in sight.  They are receiving physical therapy once a week and our PT is very optimistic about their development and progress.  She is happy with their muscle tone and movement so far.  As of today, she has no major concerns and is very helpful in explaining that micro preemies often have their own timeline and how they often do not follow developmental milestones in order.

Unfortunately, we have been dealing with lots of sickness since the beginning of the year and Sofia's hospitalization for RSV.  This includes lots of wheezing and coughing disturbing everyone's sleep.  We had gotten to the point where ALL three were sleeping through the night but now that awful cough seems to wake one, two sometimes all three at around 2 or 3 am.  Mommy and Daddy have been trying to juggle everything plus quite a few doctors' appointments, breathing treatments, and inhalers with little sleep.  Marcos also has a bad case of thrush that lasted way too long and Nystatin (medicine prescribed) did nothing.  Just this week we were prescribed Fluconazole and I am praying this gets rid of it for good.  Poor guy screamed each time his cheek was swabbed. Never did I know I would become such an expert in administering medicine.
Ending on a positive note...Grandma and Grandpa got the trio the triplet table and on they tried it out on their 10 month birthday!

We are so proud of Isabella for being such a great big sis.  She has become such a good helper and our official diaper stocker and often does her chore without being reminded!

Our first evaluation

We had a physical therapist come out to evaluate the babies last week.
All three will qualify for the Early Start Infant Program through SELPA (Special Education Local Plan Area). Our therapist will be coming to work with them once a week for at least six months.  The babies will definitely benefit from this;  and overall, it's a great thing.

So why was I an emotional mess?  It all came back to me.
They were born 15 weeks early.  I've known that they are going to have developmental delays.  But somehow I was reminded once again of their rough beginning to life.  Not that I will ever forget, but our entire NICU experience flashed in front of me.  They had to grow and develop outside the womb.
The way they looked the first few days.  Their skin was so fragile, we could not touch them without worrying if their skin would rub off or break.

The first month or so was extremely hard.  I never knew what each day would bring.  It was rare that all three of them would have a good day on the same day.  I would walk in and look at all their stats.  Their heart rate, saturation level, ventilator settings and ask for their blood gas numbers.  Their condition was critical.  They were very sick babies.  This was my life for over 3 months.

I look at them now, and they are perfect.  I can't believe how healthy they have been since we have been home.  I was wishing they were the exception.  They are starting to smile, and trying so hard to lift their little heads up. 

The therapist pointed out what milestones needed to be met.  All of their motor skills are a bit delayed.  She said even for their adjusted age (2 months) they were lagging a bit behind, which is to be expected.

I know this is not a bad thing.  I am grateful that they will get the help they need to thrive even more.  But having triplets brings little or no downtime that I sometimes forget how much further they have to go.  It will definitely be  a good thing to have someone else track their development because most of the time I can't remember what happened yesterday.