Clapping

I am keeping separate thoughts in separate posts.  The Bug started clapping today!  I was at work and grandma called me to talk about something else and then said, off hand 'Ive never seen her play pat-a-cake with me, this is new...'.  Uh, yes!  We have been working and singing and encouraging her to clap for at least 6 months.  It is quite adorable to see her do.  Its not even a college try, she is really doing it, and WELL.
This is the thing about Isabel.  She gives NO indication that she is understanding the least bit of what you are asking her to do, not even an attempt at it.  And, then one day, she just full on does it, like she's been practicing for weeks.  Same with sitting up.  Slouch.  fall over.  noodle back.  Boom-sitting (11 mo for the record).

Dueling halted

Be still my heart, my children used their nails, arms, and hands in a way that didn't end up in screaming, crying, or otherwise irrational behavior tonight!  Albert got out his GIANT book of Pokémon creatures and stated that he would like to draw the figures.  So I said, no problem.  Hope, of course, stated that she too would like to draw a Pokémon... because no one can do anything in solitude in our house.  Normally this would end up in a fighting match between the two, however, Al said.. hey, Hope, just follow my directions and Ill teach you how to draw them.  He then proceeded to instruct her step by step how to draw each figure.  It was so cute!  I couldn't believe it.  He would praise her periodically on what a great job she was doing and then proceed with his instruction.. "no put one line down through the middle of the box... oh, wow, hope, youre doing a really good job".  I think the praise allowed her to move past the fact that her brother was telling her what to do.  So funny.

Moments

I don't take time to write down the conversations, observations or day to day happenings of my life with these kiddos, but I so badly want to remember these moments. As I was nursing Iz to sleep tonight I thought about how tired I am and how glad I feel that she is actually sleeping (as opposed to the screaming that has been happening for the past 9 days)... And then the irony that in 30 years I will be wishing back this very moment! It's amazing how perfect these moments feel and are when you are appreciating them from your future state. So I kissed her tiny fingers. I have never appreciated a baby so much.

Isabel Update

See that sly sideways glance...always making sure she can trust you before she can gove you a smile.  This little girl can now roll from back to front *7 1/2 months.  At about 6 months was the first time I started to see a difference between Iz and other "typically" developing babies.  It was a strange feeling- not sad- but made me anxious.  I like a plan and I wont always know her timeline like I knew Al and Hope's.  It took me a couple of weeks to move past this realization.  Now I know she just takes her time... she like to REALLY master one feat before moving on to the next.  For now, rolling will suffice, and someday she will decide to sit up ;) but I will try not to hold my breath, and instead of feeling like "finally!", I will be proud of her.
She is still the most peaceful child I have ever encountered.  Likes all people, tolerates all environments- can swim in the pool for a half hour with no complaints, happy even, sleeps so well, and truly brings me such joy- like I have never felt before about a kiddo.  I came across a website for adoption orphan children with DS and cried... I would love to do that someday, but likely not in my cards.
Here is Iz working those leg muscles in therapy this week.  Our PT, Jen is amazing and so positive and reassuring.

And of course, Isabel cant get too much love from her brother and sister- well, at least that's what Hope thinks.

 

Hope again...

She really wants me to know how much nicer she will be than I am....

"When my daughter is 4, I'm going to buy her everything she wants."
Oh, really? Why?
"Because I'm a really nice mom"
Ok
"But, I have to be married first."
Whew.

On a sweeter note...
"11, 12, 13, 14, 15,..."
The sound of Hope counting herself to sleep.

I cant wait to see what she will be when she grows up.

When Hope grows up...

As I put Hope to sleep tonight, she told me that when she has a baby, she is going to "let her get ANYTHING she wants at all the stores."  Aka. "I am going to be a WAY nicer mom than you and let her get a new Elsa cup everytime we go to Target.
She is also going to have 4 kids- 2 girls and 2 boys.  God, are you listening?

Fierce

I worked a full day yesterday, and then beau and I went to an event tonight leaving Iz with her dad (in the early moring), and then two different caregivers over the course of the past 12 hours. Needless to say, when I dropped by to give Yolanda extra milk, Iizzie's lip started to quiver the moment she saw me. Heart break.
I got home around 10, changed my clothes and went in to hold her. Because I can. Because she won't be a baby forever. Because I don't care if she is sleeping and its 10 o'clock at night, I missed her today.
Fierce- that is how I feel when I hold her close to me. Like I would kill for her. I have never felt this before. Is it because she seems more vulnerable than my other kids? I don't know. But it is so overwhelming.

The Bug

 Aka Isabel "snuggle bug" Reinberg is now rolling over from front to back. I'm pretty sure she is the earliest to do this- the Reinberg side is a competitive bunch. Weighing in at a whopping 11lb 11oz at 4 1/2 months she is not going to let that get in her way. Other achievements post surgery include:
Getting rid of the tube and now breastfeeding
Sleeping through the night- I mean the Whole 12 hours. God is good ;).
Rarely crying, and never unconsolable- unless, of course, Grandma takes her to Bread Co. where she proceeds to scream for an hour without break... She did not think the You-Pick-Two was a good deal. At all.
She is kind of a dream child right now. I'm sure that will all change, but for now I am enjoying the time I have.

All in a days work.

I have a moment of peace, so I thought I would capitalize on the situation... so much has happened in the past couple of weeks...
Monday (Feb 16th):  Isabel got weighed and only gained 2oz.  Likely due to the late afternoon weighing vs early morning of the previous weights.  It has been 2 weeks and not much luck.  It was almost 5.  The nurse said Dr.Johnson would call me back.
Tuesday (Feb 17th):  Happy Birthday mom!  1st day back to work for me :(. 
I get a call from Dr.Johnson... its time for a tube feeding.  When would I like to come in?  'I can wait until tomorrow morning if that is more convenient'  Why would I need to wait?  The baby needs food!  The nurse calls me back and says they can admit her to the hospital around 1pm... admit her??  Huh?  This isnt doen in the doctors office? lol.  I laugh now bc I was in so much shock that the nurse felt bad for me and offered her apologies for the misunderstanding about 50 times.  How long is the stay? 'Oh, about 2 days!' Scramble... get Al picked up, Hope to a friends house, make a quick crock pot meal so no one starves tonight, pack my bag- how many days will I be there again??, pack Isabels bag, go to hospital.  Breathe.  Oh, yes, dont forget my work computer...
Wednesday (you get the picture on the dates): 
The hospital employees/drs/etc are amazing.  The bed is not too bad.  A little cold-Beau would be in heaven here... but I cant leave my baby so he has to stay home with the other babies.  She HATED getting her ng tube.  Cried for at least an hour straight after she got it.  She is my sensitive child though... I can tell this already.  Its like she feels pain more intensly than Al and Hope do.
Thursday:
I place the tube myself.  We are released.  Whoo hoo.  Home to laundry and house keeping... though Linda really did an awesome job trying to keep up with that for me.  Lord knows Beau doesnt do laundry.  I have mentioned the time in college when he resorted to wearing his biker spandex as underwear bc it had been 3 weeks since he had done his laundry??
Friday/Saturday/Sunday:
Iowa cousins come to visit.  Trenten (7), Addy (4), Al and Hope get along fabulously so I thought, why not?  It turned out great.  Kids played well and were a good distraction all weekend.  I even made dinner on Friday... though by Saturday I needed a SERIOUS mental break so I sent every one (but the baby, of course) out to the farm for dinner so I could get some peace.  Red wine. TV. 4 hours of me time... bliss.  Rewind.  I had tried to take the baby with pump and all to the soccer game.  Doing tube feedings in the cold metal stands at a sporting event is not very fun or relaxing.  No one else seemed to notice my anxiety, so thats good. lol.

Monday (Feb 23):  I forgot Hope's pre-school class snack.  Ugh.  Do laundry, grocery shop, clean house ... I did just have 3 extra people and children in my house while it was snowing.  Dr. calls- they are going to move Isabel's surgery up to next Tuesday. *It was going to be March 24th.  Ok!  I am so extatic at the possibility of an end to the waiting game.  Then comes the laundry list of things that have to be accomplished before the surgery.  Wow.  My head is spinning.  Who is coming in town?  How will the kids get fed? Laundry get done?  Dog get walked? Kids get to and from school?  Homework get done? Oh, shit.  I am working now too.  Got to go and make dinner...
Tuesday:  Get kids off to school.  Hope is staying the whole day bc I have a work meeting from 12-3.  Eeps is watching the baby bc she is awesome and a RN so she knows how to do tube feeding.  Before meeting- get dressed, feed baby, get tube feeding in car bc baby is not finished, get Synegist shot, meet friend in parking lot to switch cars so she can take baby back to house.  Phone call- its the school... Hope is sitting in the office waiting to be picked up- 30 minutes late.  Shit!  I forgot to pack her a lunch and tell the teacher she was staying all day today!! oh my gosh.  Eeps picks her up.  Hope says to me on the phone 'Mommy, I will be fine.  we are going to have fun'  Can she hear the panic in my voice?  Then she promptly turns to Eeps and asks her to take her to McDonalds.. she is good.  I get home from my meeting.  Shit!  I threw away the tube feeding adaptor in the dr. office when she got her shot this morning.  I have to go up to Childrens hospital to get another one... Insert other RN/dr. friend Jenny, thank goodness for friends with medical degrees.  Race to hospital, race to pharmacy to get meds Isabel has to go on pre-op, race home.  Must make dinner, must do homework, must drink red wine.
Hope loses her 1st tooth!!!!  Scavenge for a dollar.
Wednesday: I am taking off the month of March... obviously wasnt working to work and keep life together.  Feeling so much better today.  Linda is here.  Run errands.  Take Tiger Cub troop to the fire house for a tour.  Do reading homework- why is it 30 pages long?? Everyone is sleeping.  Beau is in Atlanta.  Iz pulls her tube out.  Damn.  Its ok.  Ive got this- whew. Bedtime.

Just an Update

Hope 5 years: 47 inches (99th %) and 47lb (90th%)
Isabel 2 months:  22 inches (35th%) and 9lb 4oz (12th%)

Isabel had a cardiology appointment today and they think she is doing fabulously.  Dr. Johnson thinks that her weight gain is great (3-4oz/week) and all without an NG tube- a feat he seems to think is worthy of admiration.  Go Isabel.  It must be those Reinberg genes kicking in at the last half ounce determined to continue to eat... lol.
She remains difficult to feed and takes FOREVER to drink only 2-3 ounces, but I am better.  I spend as much time as I can trying to feed her and when I have to stop, I do.  My world has two other kids, laundry, a home, errands, a husband, and soon a part-time job,  so there are only so many hours in a day to feed a baby.  But I do my best because I love her so much it hurts.  I feel very "zen" about our life right now- it just is what it is.
She will be presented to the cardiothoracic surgeons next wednesday and they will hopefully give us a date range of when the surgery will be in March or April.  It brings tears to my eyes thinking about how painful the surgery/recovery will likely be for her.  Ugh.  I cant think about it.

I want to post more pictures-- but blogger is giving me an error msg.. more to come as soon as I figure this out!

Where did Wonder Woman go?

My inner Wonder Woman has officially left the building.  Every feeding today so far is accompanied by a flood of tears.. from me, not the baby.  Her feedings are taking over an hour each time and she is maybe taking a little over 2oz.  Oh yes, and on top of that projectile spit up occurs almost every time- out her nose and mouth.  So sad. 
To say I am frustrated and scared of what is coming next is an understatement.  This poor girl (Izzie, I mean) is so tired and tired of eating.  I feel like everytime she looks at me it is with a bottle in my hand.  On some level, at this point, I will be relieved to have a NG tube.  At least then I will know she is getting the nutrients that she needs and not burning off the lot of it just tring to take it in...  our appointment is on Wednesday, so we will find out what they recommend.

Hope is 5!.. and the baby cried!

Hope is 5, I love it.  We had such a good day.  Woke up to presents and homemade waffles, then off to school in her new workout outfit to celebrate with her friends at her school party.. Birthdya oreo's and vanilla milk were the treats of choice this birthday.
Then Beau and I picked her up from school and took her to lunch at... Bread Co, surprise, surprise. 

Hope, Izzie and I then went off to the library and then to get ice cream with friends after bubba got out of school.  Exhausting.

So much so, that she missed her requested dinner, roasted salmon.

Izzie also cried at before two feedings today!  Probably the first time since she was born that she cried bc she was hungry.  This girl would sleep all day if I didnt wake her up to eat.  You cant understand how awesome it is to hear her cry!

Isabel Louise Reinberg... discovery, birth to 4 weeks.. etc

I dont know where to start...
Pregnancy- 18 week ultrasound.
My thoughts:  3rd baby, been there done that, no need for Beau to come- so sure, he can go to Canada for a bachelor party, no problem,  I will take my mother-in-law and two kiddos to see the baby for the experience and we'll get lunch after.. sounds fun!
The US took FOREVER.  This was way longer than I remembered.  The tech was totally stoic and I remember stating at one point as she was looking at the heart... "everything looking good?!".  She kept saying she just needed a few more pictures of the heart. 
When she was finished, she didnt tell me I needed to stay, so I gatherd the family and left, thinking my dr. would tell me about it when I saw her the next week.  We got to Bread Co. and ordered and as we sat down I got a call from the dr.s at Mo Bap.  He asked if I was still at the office and I told him no, but did I need to be?  He said they found something wrong with the heart... words you never want to hear.  Still brings tears to my eyes as I recap the moment in my mind.  Frantic.  That is how I felt.  I said it out loud to Linda who was just sitting down at the table with the food... "We have to go.. there is something wrong with the baby's heart, we have to go back". 
I sat in the office waiting for the dr.  Alone.  I had called Beau and txt him that it was an emergency.  He listened over the phone as the dr. explained.  It looks like the baby has a heart defect.  AND... the nasal bone is absent which both are strong markers for Trisomy 21.  BOMB.  At least that is how it felt at the moment.  The heart defect felt like a breeze compared to the Trisomy 21, as bad as that might sound. 
Truly I was devastated.  Weird to say now, looking at this beautiful baby girl.  I dont feel any of those feelings that I did during my pregnancy now that she is in my arms.  I can only empathize with the me of 6 months ago.
Dr. visits, so many... fear, anger, sadness... that is what I felt until December 1, 2014.  That is the truth. 
December 1, 2014, 10:10 pm.  6lb 14oz, 19 1/2 inches.

Izzie Lou.