Not fond of the color blue

This morning started out stressful.  I carried Hailey down the stairs facing outward with her chest up against my forearm along with a few other things.  She was slipping out of my arms so I readjusted her a little.  I placed her on her activity mat so I could get the boys' breakfast as I do every morning.  I looked at Hailey to say something to her and I noticed that her coloring was off.  Her face was gray and her lips were bluish.  I panicked....no, that's not true...I freaked. I ran her upstairs to my husband.  I was ready to call 911 but he told me to calm down.  When it comes to my children, I don't do calm very well.  When it comes to my baby who had open heart surgery 2 months ago... I don't do calm.  Unfortunately by this time, I had upset both of my boys.  About 5 minutes had past, my husband and Hailey were downstairs by this time and she was as pink as she could be.  Her cheeks were flushed and her lips were rosy and she was jabbering to her dad.  A few moments later, she started fussing for her bottle.  I didn't take my eyes off of her during the entire bottle.  Her coloring stayed perfect the entire time. 

I had the cardiology fellow paged at Children's to see where we needed to go.  I gave him a brief run through of the events. He commented that he thinks I had knocked (accidentally, of course) the wind out of her or had her in a position that she was having issues breathing.  He followed with the suggestion to see her pediatrician and if the ped thought we needed to take her to the hospital then to call back.  I snickered at his next comment, "Taking her to her ped is more economical".  Really, she's already had open heart surgery this year...we had to throw economical out the window a long time ago!

I called my ped's office on the way to my son's preschool.  We headed to the doctor shortly after.  Hailey's ped was off today but they had an appointment with another doctor.  I recognized the name because my friend's son sees him so I felt a little better.  He called us back rather quickly and asked to the description of what happened.  He smirked as he looked at Hailey.  By this time, she is oohing, ahhing and smiling at him.  He listened to her heart and commented that he wouldn't have even heard her soft murmur if we hadn't told him about it.  Listened to her lungs and then poked around the other organs.  Her lungs sounded clear.  He concurred with the cardio fellow but said he wanted a pulse ox just as verification.  After several attempts, the nurse finally got a good reading.  It was 98..99..then 100!  That's a number this momma loves seeing. 

The day continued on as normal with no major issues.  I can honestly say, I think my heart stopped.  I almost think I was more scared in those few moments than I was through her open heart surgery.  I know that sounds strange (and yes, I was very scare through that process).  I hate that I scared the boys as much as I did.  I did call my oldest son's teacher to give him the message that his sister was okay.  I felt helpless all over again.  Then to realize it was something I did.  I'm afraid it is going to take me awhile to get over the shock of this morning.  Thank God, she is okay and it wasn't anything serious.

On the upside...Hailey was tripod sitting tonight for much longer than normal when she reached out for my hand.  I was shocked to see her reach and not fall over.  She's quite the tough cookie!  She's much tougher than her momma. 

Here are some pics of her rosy little self (please ignore the red eyes....my camera is in the shop and my photo software doesn't like some of my pics from my old camera).

How did she know I was going to take a pic of her napping?

What part of this looks like a comfortable sleeping position?!?

Growing Up

This morning was bittersweet.  I packed up Hailey's bassinet, the baby tub and the baby swing this morning.  The poor thing...she cannot physically fit in the bassinet anymore.  I tried :-)  The swing is just taking up space.  We used it early on when she would fuss to give her a different view of the world.  Half the time we wouldn't even turn it on.  Maybe that is why she doesn't like it!  Now that she loves the floor and tummy time we don't really need it.  Since her heart surgery, she hasn't really been using the baby tub.  She prefers to wiggle around in a couple inches of water.  We are hanging onto the activity gym awhile longer because she does love reaching for all the toys. 

Don't get me wrong.  I'm so excited that Hailey is growing and making progress.  It is sad though.  She is my last baby and I do love my snuggly, cuddly babies!!!  Hailey is showing her personality (and attitude!) more every day.  She loves to flash those dimples and laugh at everyone.  She is not too happy when we eat in front of her without feeding her.  She will sit in her highchair smacking her lips.  It's not uncommon for her to reach out for our faces and plant a very wet, full-tongue kiss on the cheek.  She is following in the footsteps of big brothers (and mommy)...she is quite vocal these days.  We hear lots of ba-ba-ba, da-da-da and ma-ma-ma along with her vowel sounds.

We are playing this week low-key.  Older brother Ian is off the hook hyper this week.  We are trying to figure out if it is the excitement of school and getting into a routine or if it is a side-effect of his new medicine.  We are giving it until Monday.  If it doesn't improve, I'm calling his doctor.  I'm not sure we will be able to keep our sanity if he stays this hyper.  Big brother Bray had a one-on-one outing with Dad last night.  He was so excited when they got home last night, he could barely sleep.  Poor Hailey has a busy week next week.  She has an appointment at the Down syndrome clinic at Cincinnati Children's on Tuesday.  The social worker called today and I got a little emotional talking to her.  I hate that I still cry when I talk about what we have gone through and what our hopes are for Hailey.  I hope one day, I will get through an entire conversation about our past, present and future without the waterworks but I doubt it.  I'm a crier...always have been.  I doubt that it will change!  We were also able to set up her hearing test for next week.  Luckily, we were able to get that at a satellite office instead of making the trek downtown twice in one week.  Then Thursday we have our 6 month evaluation with Help Me Grow (early initiative).  Add those appointments with school, soccer and religion class and we have a full week!

With Ian back in school, I'm now able to get back to walking a few days a week with only one child in tow.  I've missed my walking buddy.  I jumped right back into the swing of things yesterday.  I made it the full hour and I think I was pushing myself (my friend said I did).  I enjoy spending a full hour exercising and talking about everything and nothing.  It makes me a better person.

Here are a few pictures.  The ones of little Miss Hailey in the bumbo were supposed to be my wordless Wednesday.  That was at 10 p.m. last night.  She refuses to go to sleep for mom...just dad.  Can we say spoiled?!?!?

Just playing with my toys

Big brother was excited about the movie he saw with Daddy.

Nope, mom...still not going to sleep

Before her surgery, Hailey never slept this way.  Now, she always sleeps with her hands behind her head.

One of those days...

Monday was "one of those days".  You know, the type of day that you want to crawl back in your bed about 10 minutes after waking up.  We knew before hand that Monday was going to be a busy day.  Everything seemed to happen at once.  Ian started his first day of preschool and a parent stays for an hour on the first day to get everyone acclimated to school again.  As always, he was excited to be there and is a pro at it.  Shortly after school, we headed to the doctor for him.  "Just allergies" is what the doctor said.  Then commented that the only way to get rid of them was "move to the North Pole or Arizona."  Well, neither of those were an option so he prescribed two medications and we are doing the wait and see approach.  We have to call back next week.

I received a phone call from the state about a supplemental insurance we had applied for when Hailey was born...yes 26 weeks ago.  They misfiled my appeal and hopefully will have an answer at the end of the week.  I asked why Down syndrome is not a covered medical condition (because up until this point, no one was able to give me an answer).  The woman explained they cover no genetic anomalies because they are no treatable.  Therapy is the only thing that can be done to "improve" their life.  For some reason, that conversation struck me wrong and I was in a fowl mood going into Hailey's pediatrician's appointment.  I have always liked Hailey's pediatrician.  He is a very compassionate person.  He walked in and asked how things were.  I responded, "Ah, you know".  Then he wanted to know what had me in a fowl mood.  I launched into the never feeling like I'm doing enough for Hailey.  Never knowing what is the right thing.  The dreaded unknown.  He just grinned and told me that she looks good and to keep doing exactly what we are doing.  Keep stimulating her, keep reading to her, keep singing to her, keep pushing her.  We discussed the supplement regimens.  We decided on a course of action that we are both comfortable with.  We'll see what develops and proceed from there.

On a very good note, Hailey is now up to 14 lbs 2 oz.  That is almost a 4 pound gain since her 4 month appointment!  She is the 25th percentile for height, weight and head circumference (on the typical chart).  She received her vaccinations and we were on our way to finish our manic Monday.

The boys both had to be at different places at the same time so Jason and I divided and conquered.  Life slowed down around 9 p.m. when all three little ones were sound asleep in their beds.  My camera had to be sent into be repaired.  They told me 2-4 weeks.  Do they know how long that is for a mom of three?!?  Luckily I have a back-up point and shoot.  I haven't used it in a few years and was downloading pics last night when I got the memory card stuck in the laptop.  I started crying and laughing at the same time.  I decided Monday had gotten the best of me.  I surrendered!  Tuesday had to be better, right?!?!  Jason was able to get the memory card out but I was still so mad at myself!

Today started out much better.  Hailey was running a low-grade fever this morning.  We assume it is from her vaccinations.  We gave her some ibuprofen and then she had therapy.  Hailey has consistently made progress with each session.  Actually she generally reaches the next step or milestone right after her therapist leaves the house!  Since her session last week, she is now rolling onto her right side (not just her left), she is rolling across the floor (instead of just back and forth), and prop sitting/tripod sitting for short spurts of time.  She is slowly building more trunk strength each day.  She has been a little tired today.  I'm sure it is because of her vaccinations and therapy. 

Apparently I prefer yelling to eating my peas!

Still yelling...

That's a little better

I love giving kisses!

I had my pity-party yesterday.  Today was better.  Planning on tomorrow being even better!

On the move!

We spent the weekend visiting with my husband's parents attending plenty of the boys' soccer games!  Everyone had a good time visiting.  The boys were awesome at soccer.  Both teams lost but both boys hustled and gave it their all. 

This morning the adults sat glued to the anniversary ceremonies on the Today Show.  We talked about where we were when the planes hit the towers.  So many lives lost, so many lives touched.  I don't think we will ever be the same.  I remember being so consumed with grief and sadness that it enveloped me.  For days, all I could do is watch the news and feel such sadness for each and every family that suffered a loss.  10 years ago today, my now husband and I were finalizing the last bunch of details for our upcoming wedding.  I remember thinking how do we go on living after such tragedy.  I'm so glad God helped us see beyond and helped us heal.  We will never forget but God showed us hope.  I see it in the eyes and hear it in the laughter of my three children every day.

Hailey showing off her Baby Legs and making sure everyone hears her!

Hailey has been rolling for quite some time.  She mostly rolls a couple of times and gets side-tracked by a toy, her feet, her brothers, etc.  She generally only rolls left.  I'm sitting in the recliner this evening with Hailey jabbering on the floor.  Suddenly, I feel a thump against the recliner.  Imagine to my surprise, Hailey was lying under the foot of the recliner.  What?  How?  Hailey was about 8 feet from me just three minutes ago and she is rolling to the right!  Yay!!!  My heart skipped a beat.  I didn't think her rolling across the floor could make me so happy.

This day and every day, I thank God for all my blessings...big and small.

All is Right

For once, I don't have much to say...shocker, I know!  It's Friday...two days of all 3 of my kiddos home at the same time.  No appointments, no therapy.  We have soccer but I love watching the boys get so excited about their games and us watching them.  The worries, schedules and phone calls can wait until Monday.

I have to share this photo of Hailey.  She didn't sit like this for long but long enough to let go of her and take the picture!  Baby steps...we'll get there!

Wordless Wednesday?

In the world of blogging, someone came up with the idea of "Wordless Wednesday".  Maybe next week.  We woke this morning to pale gray skies and a steady rain falling down. 

After the bus picked up my oldest this morning, I decided to make it "Workless" Wednesday.  No therapy exercises, no appointments scheduled, no house cleaning.  Today, I spent the day enjoying my daughter.  I'm not sure how much I've been able to do that since she has been born.  Today, Hailey didn't change out of her adorable frog-footed fleece pjs.  We chatted and cuddled.  I soaked in those beautiful almond eyes and all that pudgy cuteness!  I laughed and she giggled.  I'm not sure what was so funny today but Hailey giggled at almost everything I said.  I love that giggle.  I've waited so long for that laugh.  The neonatologist when she was first diagnosed indicated that her social skills would be delayed substantially...he didn't know our daughter.  Hearing her giggle, makes my heart smile.

I've been jabbering A LOT today!

I definitely approve of "Workless Wednesday"!

Too much fun, I need to take a break.

Unfortunately all good things must come to an end. The real world eventually beckoned.  We had to get Brayden at the bus stop and then homework called.  Later, I met Ian's preschool teachers.  At home, Hailey finally changed out of her pjs and into new ones.  She did not enjoy her banana/mango puree this evening.  It was the first one that she really spit out because she didn't like it.  Oh well, she'll have another go at it tomorrow :-)

 (I know this picture needs rotated.  I'm suddenly having technical difficulty with my photo editing software....I just wanted to show that yes, Hailey did change pjs!)

As today comes to a close, I don't know when I will get another day to enjoy just being Hailey's mom.  With three children, those days are few and far between!  I am happy for today and will file it away with my happy memories of being Brayden's and Ian's mom.  I'm so very grateful for my three wonderful children!

A sigh of relief

We enjoyed the Labor Day weekend.  On Saturday, we spent the day celebrating our friend's little foster son's 1st birthday.  God answered our prayers when Hailey sailed through her open heart surgery.  We are hoping that it is in God's plan to let our friends adopt this little boy.  They have so much love to give him.

Checking out the new dress

All ready for the party

On Sunday, my parents and grandfather came to see the kids.  It was the first time Hailey has seen her great-grandpa.  His face lit up seeing our little peanut and she flashed her dimples.  Monday was spent enjoying the cooler temperatures outside. 

Today, we headed down to Cincinnati Children's Hospital for Hailey's 6 month ophthalmology appointment.  I'm hoping there will come a day that I can take Hailey to Children's or any other appointment without all my emotions sitting like a lump in my throat.  Today definitely was not one of those days.  This appointment was in a different building than all our other appointments.  The hospital can be a very overwhelming, confusing maze to navigate.  Eventually we made it to our destination a little stressed.  I was struck how raw the next emotions were.  The first four families we passed as we approached the doors were parents with children with Down syndrome.  They were the most beautiful children but they immediately brought tears to my eyes.  I swallowed the lump in my throat and blinked away the tears.  I'm not sure why I reacted to them the way I did.  I honestly haven't seen many children with Down syndrome since Hailey's diagnosis other than the pictures I look at online.  I think it might have just been seeing them in person and me being so stressed on top of it.  But, I guess I need to remember....everyone who knows me, knows how emotional I am.  I'm the one who cries through Hallmark commercials, sobs through Lifetime movies and even cries through the entire end of Extreme Home Makeover!

Hailey's appointment was long.  Our initial wait was only a few minutes.  The technician covered all the family and Hailey's medical history and performed a couple tracking exercises with Hailey.  The doctor followed shortly along with an ophthalmology fellow and a genetics fellow.  The tears were close to emerging once again.  The genetics fellow was with the geneticist the day of Hailey's initial examination/consult for Down syndrome.  All the emotions from that morning were very close to the surface and very raw.  I countered with chit chat about how much better Hailey looks now versus how she looked the day of the consult.  Fortunately that worked and the tears stayed at bay.  The ophthalmologist examined Hailey watching different toys and with different lights.  I'll be honest, I'm not even sure what all he did because I was holding her and couldn't see the other side of what he was doing.  I told him that we do see some eye jittering and an occasional crossing of her eyes.  The doctor said he did not see any eye crossing and he was trying to get them to cross.  It was a good sign that her muscles are controlling it.  He does see a slight nystagmus, which is involuntary eye movement.  At this point, he doesn't feel that it is a huge concern or much out of the range of normal.  He wants to look at it again in a few months to see if anything has changed.  At this point, he said he wanted Hailey's eyes dilated and said he would examine them again.  Unfortunately, they were super busy today.  The nurse said they could come get us in about 30 minutes.  Well...it was an hour and twenty-five minutes later.  Ughh....

Here is little peanut patiently waiting to be called back into the office.

Good think I have my toy

Getting tired of waiting and getting loud

Oh well, I think I would rather take a nap.

 After we were finally back in the office, the doctor looked at the inside of Hailey's eyes.  He said that everything looked good.  She doesn't have cataracts, her optic nerves are good and she doesn't need glasses.  She has a follow up in January to see if anything with her vision and nystagmus has changed.  I am very grateful that her eye appointment was uneventful and that Hailey has been so healthy since her heart surgery.  I thank God for that every day but I know that I will have the "white coat anxiety" when the next appointment comes before us.