July 31, 2014

Heart surgery follow up #2

  Sadie had her second check up on her heart.  This time with her regular cardiologist.  He did another chest x ray and echo. Both of them came out perfect again.  She has been "cleared".  What does that mean?  Simply that her heart is doing fantastic from the surgery and we do not have to go back for a check up for a year! He then continues on to tell me that he has the rest of her heart future planned out.  Looking confused at him he replies "She'll come back in a year, if its all good, then 3 years, if its all good, then 5 years, if its all good, then another 5 yrs, another 5 yrs.   We may even get to the place where you never have to see me again and I will become a distant memory."  Wow!  That sounds crazy to me, but at the same time, I LOVE IT.  One less Dr appt a year.  This really couldn't make me much happier.  Although I will miss him.  He is a wonderful and caring cardiologist. Thank you Dr Malcolm for everything!

July 30, 2014

Rollar Skating

   I took the girls to a good, old fashioned roller rink.  Nice, clean, sweaty fun.  They had a blast and the best part for me is that it was free!  Who can beat that?  They did all the fun things like the hokey pokey, chicken dance, dead bug, and the limbo.  Brought back lots of fun memories for me. I'm glad places like this still exists for my girls to enjoy.

Chloe enjoyed doing the limbo and "dead bug".  Aubrie, not so much.  I couldn't even bribe her to go out there and participate in those things.
Sadie just sat there and watched all the action.  She loved all the flashing lights.
  After a while of skating and enjoying themselves, they decided that Sadie should join them (all their idea).  They wanted her to be able to roller skate too.  That's what I love about those 2 girls.  They are always thinking about each other and trying to include Sadie in everything.  I wasn't sure at first if it was a good idea because I didn't want anybody to fall and get hurt or hurt someone else out on the rink.  Hesitantly, I agreed.  I'm so glad I did.  The girls and Sadie loved it.



July 29, 2014

Darn it, I am Human!

  People tell me all the time "you have strength like no other, almost super human like.  I could never do what you do".  I laugh and say "I don't think so, I'm a mom who loves her child".
  I stopped writing for a while after I got Sadie's diagnosis.  There was a couple of reasons why.  I was not sure if I would write about it or not but this is my outlet.  The reason I started this was to help me. If I could help others on their journey with a special needs child or to help others understand what it is like on this journey, well then that is even better.
  After I got Sadie's diagnosis I was so excited.  Finally, we have answers to questions that we have been asking since my 20 week ultrasound.  3 yrs of questions, all (well almost all) answered with one test.  Things make sense.  However, it was a let down at the same time.  I know we have seen her brain abnormalities on MRI's.  I know we have seen all her differences in real life. I know we have seen all her struggles with eating.  I know we have seen issues with her physical strength.  But without a confirmed name to it, then maybe all of this is just a really bad dream. I will wake up one day to a typical developing child.  One that will run to me and say my name and throw food at me that they don't like.  One that will steal her sisters toys and try on my high heels with dreams of wearing them some day.  But NO, this is my reality.  This is not a bad dream.  Sadie has a confirmed diagnosis.  In fact, she has 2 confirmed diagnoses.  She has Cornelia de Lange Syndrome and Pontine Tegmental Cap Dysplasia.  This will never change.  It is in her genes. I will never be able to say that they have been fixed like I can when I talk about her heart. I can't say that EVER about CdLS or PTCD.  I can't fix her genetic make up.  As a parent you are suppose to be able to fix things. I can't do it. I feel like I have failed her. I know that this was, and is, completely out of my hands, but its still the guilt of a parent.
  I have been grieving the child that I thought I would have.  I have a bad habit of thinking of Chloe and Aubrie at Sadie's age.  What they were doing, the milestones they were able to achieve.  They were so typical and I took it all for granted.  I think about what Sadie should be able to do.  I cry.  I cry a lot.  Sadie's teachers had to do some cognitive testing on her a few months ago so that she is able to start school in the fall. The results showed that she is at a 4 mo old developmentally.  A 4 MO OLD!  My 2 1/2 yr old is technically a 4 mo old.  Do you know how hard that is to admit to myself?  I'm not blind to the fact that she is super behind developmentally, but its different to hear it verbalized by someone else.  Its one of those of things that if its not said out loud then its not true.  But it is true and this is my reality.
  I also had won a battle and that shut me down for awhile.  What am I talking about?  When I first started on this journey with Sadie I was soooo emotional.  Highs and lows like you wouldn't believe.  Someone once explained it to me like this... having a special needs child is like fighting in a war.  While you're in a battle your adrenaline is pumping, you keep going and fighting, you have your eye on the prize, nothing can stop you.  But as in any war, there is a lull between battles when reality hits you as to what is actually going on and you have the down time to think about the rest of the war and it doesn't always look so hot.  I have been fighting the battle for a diagnosis for so long.  I wanted it, I knew I could achieve it, I fought with everything in me.  I won that battle.  Along with my reward was the reality of the rest of the war.
  Why I wasn't going to talk about this was because I don't want judgment that I don't except my daughter or the life I have been given. I do.  We all want things in life to be perfect and when they aren't, we grieve. We grieve for different things, in different ways when we are disappointed, we may not label it grieving, but that is what it is.  It doesn't mean that I am a depressed person.  I have my moments, and this is normal.  I use to hide these moments.  The more I talk to other moms (and dads) of children with special needs I realize that I am not alone.  I shouldn't be ashamed of my feelings and I shouldn't hide them.  This is me.  Pure and raw. I try to stay positive, but sometimes I get sad and fall down.  It's ok.  I'm HUMAN!  I will get up again (with God's help).

July 17, 2014

heart surgery follow up #1

  Went for Sadie's follow up appt with her heart surgeon. Unforetunetly, Dr Haw and the other cardiothorasic surgeons got called into a twin preimees emergency heart surgeries, so none of them were available for follow up for Sadie. I had a choose of coming back a different day or seeing the PA's that also followed Sadie in the hospital.  I just choose to see one his PA's. They saw her just as much as Dr Haw saw her, if not more.
  Her check up went as well as everything else.  Perfect! Perfect heart rate, perfect BP, perfect O2, perfect EKG, perfect incision, perfect chest x ray.  How this little girl pulled off such a perfect surgery and hospital admission is beyond me, but I LOVE IT!
  We will follow up with her regular cardiologist in a couple of weeks just for one last check.  :)

July 12, 2014

Released and Thank you

No more tubes, no more wires, no more hospital!

Sadie was released this morning.  Just 5 days after having open heart surgery!  We were told to plan on staying for 10-14 days.  She completely proved the Dr's wrong and rocked this admission.  Not a surprise, really. She's always proving them wrong and surprising us.

I spoke to Sadie's surgeon and he said that Sadie has done way better then he ever could have expected.  "This was a perfect text book case.  No complications. It was the perfect uncomplicated case of a complicated child".  I laughed.  The word uncomplicated has never been used in any sentence that describes anything that has to deal with Sadie.

Thank goodness we were released today.  Sadie had no desire to sleep last night.  She was up until 4am.  Mostly just content, looking at all her stuff . She loved watching her own monitor of her heart rate, o2 level, respiratory rate. I think she liked the bright lights and the movement.  I actually had to cover it with a blanket, because she wouldn't stop watching it.

Sadie is so happy to be home.  Completely content, all smiles.  She found her best friends, her feet.

  Now on to my thank yous.  My first thank you is to God.  For holding my beautiful baby girl in his arms and keeping her safe and not being ready to bring her home with him. For listening to everyones prayers. For giving her surgeon steady hands, a big heart and the knowledge to know how to fix my baby's heart.  My second thank you goes to all of you.  For continuing to give our family support.  For sending prayers and encouraging words our way.  From the very beginning of our journey with Sadie, you guys have all been there and that means the world to us.  For all the fundraising that many of you have either put together or participated in. That has taken a large burden off of us and has given us more time and energy to concentrate on our 3 girls.  And for taking care of my two other girls so they felt loved, cared for, and important.  My third thank you goes to Dr Marcus Haw, Sadie's cardiothoracic surgeon.  He is so very knowledgeable, has steady hands, very calm, a big heart, and great bedside manner.  He listened to all my concerns and took into consideration all of Sadie's past complications from surgery's and her high risk of respiratory complications.  He was proactive and took his time in the progression of Sadie's recovery.  Nothing was rushed and he let her go at her own speed. I would recommend him to anybody who has a child with a congenital heart defect (or any heart problem) that needs to be fixed.  He is amazing and works out of Helen DeVos Children's Hospital in Grand Rapids, MI.  And forth I want to thank Chloe and Aubrie for being the most easy going, unselfish, caring little girls that they are.  Never once did they complain that we had to stay with Sadie.  Never once did they complain that Sadie was getting a lot of attention.  Never once did they complain about having to go with another person.  They did state that they were homesick and they couldn't wait for Sadie to come home, but even with that being said they didn't throw a fit when going to their next destination.  I could not be more proud of those little girls.

July 11, 2014

Sisters made her day better

  Today was a fairly decent day.  Sadie was a little cranky only because of the fact that she decided that she didn't sleep very good last night. She just whined and cried for 3 hrs straight. Nothing was changing the situation either.  We weren't sure if it had to do with pain, gas/bowels, just being uncomfortable, hot/cold, not being home.  Finally, she fell asleep around 3. Only to be woken up 6 hours later to Dr's wanting to take more tubes and wires out of her.  She also decided to not take any naps for the rest of the day.  Not a happy little girl.  However, that all changed when we got some cute little visitors.  Was she ever happy to see her sisters.  She could not stop watching them and all they were doing.  We got some smiles out of her then.
  So that is the good news for the day is that she got 1 tube and 2 wires taken out of her chest. That means we are down to 5 tubes/wires.  The rest will not be removed until discharge.  Sadie is on a roll and should be discharged soon!


July 10, 2014

All smiles

  Sorry, I didn't update yesterday.  It was a really good and easy day, but by the end of the day I was exhausted and when she went to sleep, I fell sound asleep too.

  Yesterday we just kinda laid low.  We took Sadie off all of the iv pain meds and she was just taking Motrin and Tylenol.  This just absolutely amazes me.  At first I thought the Dr's were a little nuts to do this, but it worked.  She was a little less active, but wasn't complaining of any pain.  She was more awake and alert. She just watched her surroundings, looked out the big window, watched her mobile, lights, and Ipad. Occasionally would drift to sleep, but just for short little cat naps. She was very content.
  We did have a little incident with her food.  Every time Sadie would eat she would start to complain and moan. As soon as I would stop the food, or it was over, she would stop complaining. At first I thought maybe it was pain, then I thought gas, and then I thought maybe she just needed to poo. Then I thought maybe she was nauseas.  Then she poo'd and passed a lot of gas and that didn't solve and any problem. There goes that idea.  She has a different cry and face when it comes to pain, so I knew it really wasn't that either.  By her second to last feed of the day and half way through it I just happened to look over and see the box of food that Sadie was given to eat.  It was the correct formula, but it was flavored with vanilla, not the unflavored kind that she is used to.  Hmmm, wonder if it's the flavoring?  So I told the nurse, she ordered the unflavored formula and we used it for her next feed. Sure enough, no issues.  Sadie's stomach is that sensitive to just the slightest of changes.  It's probably the sugar in the flavoring is the only thing I can think of.  Either way, lessened learned. No vanilla flavoring for her in the future.  

  Today has also been a good day.  She has had absolutely no issues.  They didn't pull any more tubes or wires, so she still has 8 left.  She is tolerating her food, and has no signs of pain. She is still taking both the Motrin and Tylenol.  Sometimes she complains but I think she is bored.  Even though I brought her a variety of her own things, it's still not the same as being at home.  Plus at home she has her two crazy sisters that play with her or at least dance and play around her for her to watch.  Mama just isn't as entertaining as a sister.
  I tried to distract her from being bored by getting her up into her stroller. She was all smiles and so relaxed. Loved every minute of it.  I kept her there for about 20 min. Then we moved into the high chair for lunch (yes, I know she is g tube fed and it really doesn't matter). It is more at a 90 degree angle, the back of her stroller doesn't go up that high.  She sat there for her entire feed which was 30 min. By the end of that, she was ready to get back in bed and take a nap.

Love this crocked smile! Melts my heart.
It must have felt so good to her to sit up after laying down for 3 days straight. All smiles, no tears, pure contentment.
  God bless this little girl!  She is rocking out this admission and surgery. Doing way better then what all of us expected.  If she keeps this up, we will be home in no time.
  Thank you everyone for all your prayers and thoughts.  I truly believe in the power of prayer!

July 08, 2014

Down to 8

Sadie had a fantastic day!

She got another tube taken out, taking the countdown down to 8.

She is only taking Tylenol and Tordol (which is pretty much IV motrin) for pain.

She is still pretty sleepy.  Not sure if the anesthesia is still making it's way out of her system or if it is her way of dealing with pain.  Either way, people heal better when they sleep.  Sleep away, sleeping beauty!

When she is awake she is very alert and happy.

She is looking around, smiling, focusing on her lights and I pad.

She is rolling around and making herself comfortable.

She is simply amazing and resilient!

Then there was 9

Now you seem them...
Now you don't!!
What am I talking about?  Tubes.  So not only did we get her breathing tube out last night, this morning they pulled both of her chest tubes and her arterial line (right wrist).  That's 3 more tubes out.  Total of 4, leaving 9 things left to be pulled out and taken off.  I'd say we are doing pretty darn good so far, for not even being 24 hours out of surgery.  :)
Last night was ok.  She slept well until about 2 and then woke up complaining. I wasn't sure if it was pain, hunger (she hadn't ate at all yesterday), or gas pain.  The Dr's still didn't want her to eat, so I couldn't fix it if it was that problem.  Gas pain it could have been, but she was a tooting little fool and was fixing her own problem .  The only thing I could do was have them give her more pain meds.  So they did.  However, it didn't work.  We tried more, still didn't work.  After a couple of hours of trying different tricks, nothing was working.  We finally decided to put her back on the a pain med drip and sedate her a little bit.  After about 30 min of the drip she fell back asleep and was peaceful the rest of the night.
This morning we took her back off of the drip because it's not really that ideal (plus her respiration's were not the best) and started a different pain med.  One that is strong but not sedating.  The Dr's are not exactly thrilled with her only breathing 4 times a minute.  I guess I can't blame them for that. ;)
They also started to let her eat.  They said regular feeds, but I said no.  I wanted her to have only clears for the day, until her stomach wakes up even more.  They agreed and said I could do whatever I wanted with her feeds.  I love how they listen to me. :)

July 07, 2014

The rest of our day

What a long day! 

  It started this morning with us being late.  Now before everyone that really knows me laughs and rolls their eyes and thinks "typical Tammi".  Let me explain.  It was not my fault!  I was told 2 different times, 5:30 and 6:30.  I asked the surgeon himself, what time he wants us here.  His reply "6:30".  I went with it.  He was the one operating on my child, he should know.  Well, I was wrong.  It was supposed to be 5:30.  I should have known better.  Dr's are never right when it comes to those kind of details.  Lol  It really wasn't that big of a deal, but everything was a little bit more rushed.  I actually felt bad for her nurse, but she did a good job getting everything done is that short time period.  Come to find out, we were suppose to come in early so anesthesia could prep her for a little while before the Dr was ready to operate.  Oops!  But they all admitted that it was not my fault and that is a kink in their system that needs to be worked out.
   They took Sadie back to the OR about 7:40.  They told me that they would come out periodically to give me updates.  Around 9:45 I started thinking about the fact that I hadn't heard anything.  The next thing I know, here comes the OR nurse. It's about 10 am.  "Just wanted to let you know that they just started her surgery". What!?  I gave you my baby almost 2 and half hrs ago.  "We had a hard time starting some of her lines because her veins and arteries are so small.  And we had a bit more of a challenge intubating her because her mouth is so tiny".  SURPRISE!  Yep, nothing I hadn't heard before, plus I warned them about both of those things.  I just giggled to myself, cause that is just who Sadie is.
   Around noon the surgeon came out to tell us that his part was over and that his partner was stitching her up.  The procedure went perfect.  No complications.  He said that the hole was much bigger then what the tests had shown.  He said that the wall (the hole) was not half missing like they thought, but was about 3/4 or more missing.  He said that the wall was almost completely missing.  Unreal!  It's amazing to me that that much can be missing, and not cause a problem.  He also fixed her mitral valve as it was leaky and not closing correctly.  And then he said "we also found something else, a surprise, that is incredibly rare, in fact I have only seen it one other time in my very long career, and that is that she also had a third hole in the mitral valve".  Are you kidding me?!  Did he just say "something rare, a surprise"?  Why does that not surprise me when it comes to this child?  I'm pretty sure I should just rename her Miss Rare or something.  My husband and I just looked at each other, laughed, and shock our heads.  The surprises never stop with her.
   After they closed Sadie's chest up, they did not have her go to the recovery room.  Instead she came right to her ICU room.  She got into the room about 1:30 or so.  Because of the difficult intubation and her severe apnea, they decided to leave the breathing tube in place while she woke up from the anesthesia.  No one wanted to reintubate her.  So sedated and vented she stayed for the rest of the day.  The plan was to keep her like that the rest of the night and extubate first thing in the morning.  However, Sadie had other plans.  She started to wake up from the sedation and breath over her vent.  The Dr's figured it was a safe bet that she would be fine, so around 8:30 they extubated her.  She fussed for a few seconds, took a couple of breathes, blinked her eyes a few times, looked around at all of us and went back to sleep.  Apparently, she wasn't too impressed with what she saw. Lol  Which honestly was fine with me.  If she's sleeping, she's not in pain.
   That leads us to this moment in time. She is now off all pain drips, and she is on 2 liters of oxygen which is almost her normal when she sleeps.  She is back to breathing only 6-10 times a minute while she sleeps and had a flurry of Dr and nurses a little worried until I reassured them that this is normal.
   She started with 13 tubes and wires at the beginning of the day and we are now down to 12.  The count down is on.  For those that don't know, the countdown is pretty much how you can tell when you will be discharged. 
   Thanks for all your prayers and thoughts today.  Talk to you tomorrow.  :)



Open Heart Surgery

   Today Sadie will be getting her sweet, little heart fixed.  They will be closing up the hole (ASD) and also repairing her mitral valve.

   What a roller coaster ride this heart has been.   3 yrs ago in July ( a little ironic I think) I went in for a fetal ultrasound with a specialist.   I knew that my baby was small, but I really didn't think much of it.  I am a petite person and so is my mom, I figured she was going to be taking after my side of the family.  I left that US in tears.  Not only was I having a small baby, but my baby had a hole in her heart and a 2 vessel umbilical cord.  My husband and I were in shock. We had to completely typical developing pregnancy.  Why was this one going to be any different?  We left that appt devastated.  They told us at that point they were not sure how big the hole was, but it was very large and in a difficult spot.  We had no idea what that meant.
   As the next months went by and we had more US and a fetal echo of her heart done.  The Dr's changed their story many of times.  First they said they were not sure if she "would make it to her birthday". Then they changed it to "she will be born alive, but she will need surgery within hours of birth.  Again devastated!  After she was born they did an echo right away and said "we were completely wrong. The hole is very big, but it's in a stable place and her body is handling it. It won't need to get fixed any time soon".  Huge sigh of relief!  How, they were that wrong, I have no idea, but I wasn't questioning anything.
  At her next couple of cardiology appt's the Dr said that the hole was on the larger side and would never close on it's own like some holes do, but as long as her body was handling it (she wasn't turning blue, heart rate never dropped) then it wouldn't need to get fixed until she was like 7-9 YEARS old.  Even bigger sigh of relief.  How we went from possibly not surviving child birth, to not having it fixed for years from now was amazing to me.  We jumped off the roller coaster.
  However, this is Sadie we are talking about.  The ride was not over.  We went to her 18 mo cardiology appt and he said that it still looked good and stable, but he wants to have it fixed sooner rather then later.  Didn't really give me a good explanation on why the sudden change.  Ok. Lets jump back on the roller coaster.
   Next we saw the cardiothorasic surgeon.  He says yes, he agrees, in her case the sooner the better.  However, he wants all her genetic testing back and real answers about her health before he will do it.  He wanted to make sure it was going to benefit her life.  At that point the risks out weighed the benefits and he wasn't sure she would be strong enough to come off of the vent.  "No, no surgery right now".  Jumped off the ride.
   6 months later we get the genetic testing back.  Game changer!  Dr's see her completely differently now.  She has Cornelia de Lange syndrome and pontine tegmental cap dysplasia, "she can live a long time".  Yes, lets fix that heart now!  Back on that damn roller coaster.
   So here I am, the morning of her big surgery, not able to sleep.  Please keep Sadie in your thoughts and prayers.  She is a strong little girl.  She has come a long way.  The surgery itself is scary, but I'm more worried about the recovery.  I will keep you all updated on the ups and downs.  Please pray for her.

My happy baby girl last night before she went to bed.  Last picture without a scar on her chest.