Friday, April 6, 2012

Things Happen For A Reason

Things REALLY do happen for a reason.  Some people find that saying to be so cliché, but I find it to be so true.  Annie’s minor cold has now turned into an ear infection and breathing issues complete with lots of wheezing.  We knew that her minor cold would be much better in a couple of days, or it would be much worse.  Given her history, I was pretty certain it would be the latter.  I think we caught the ear infection in its early stages and her wheezing improves drastically after each breathing treatment (Xopenex three times a day….Lord help us!), so hopefully she will improve quickly.  She might be getting it all out of her system now so she can be super healthy come May 10th!!

Happy Easter!

Annie and Daddy having a picnic:

April Showers Bring May Flowers (or Thumbs!)

Wednesday, April 4, 2012 9:29 AM, CDT
Annie's cold may have rained on our parade for April, but we are back on the schedule for May 10th.  Yippee!  Now all we have to do is keep her well the next month.  Going to need a miracle for that one, so say some prayers!

No Surgery This Week

Monday, April 2, 2012 8:02 AM, CDT
Annie has a cold, so no surgery for her this week!  While I am all for doing whatever is necessary and best for the princess, it sure does complicate A WHOLE LOT of things.  I am trying to stay positive about it and remember that things happen for a reason, but I am very frustrated with the situation.  Oh well, it is what it is, so I might as well embrace it, right?!?!  I hope to speak to the surgery scheduler today to get Anastasia back on the schedule, but from what I recall he is super busy the next couple of months, so who knows when it might be. 

Pollicization Number 2 on the Horizon

Friday, March 16, 2012 12:52 PM, CDT
Watch out world, Anastasia is on the move… foot!  It only took her a week from the time she took one step to figure out how to walk across the entire room.  As usual, she amazes me!  Nothing is going to stand in this girl’s way. 

She has been going to OT daily and is making great progress with her thumb.  She is starting to use it better and we have even seem some movement in the top joint.  Even though it has been a very difficult journey for her (ok, us too), we are very pleased with the results.  She is scheduled for the second hand on April 4th.  Seems unreal that she will have to go through it all again so soon, but we know it is a necessary evil, especially after we have seen the progress she has made with the first one.  Send some extra prayers our way on the 4th, please.
It has been difficult to get many pictures as she is so freaking active (not that I am complaining), so I only have one new picture to post, but it looks pretty awesome!

Bye-Bye Bandage

Sunday, February 19, 2012 6:14 PM, CST
Friday was rough, but we made it to West Palm Beach and back in one day, unscathed for the most part.  We missed our connecting flight due to fog, so we of course missed our scheduled appointment and our flight back home.  Luckily, they still saw us (albeit a bit rushed) and we managed to get on another flight home Friday night.  Annie was a COMPLETE doll the entire day.  It was pretty unbelievable, especially considering she has pneumonia, RSV, and an ear infection.  She was a big flirt, waving and saying hi to everyone she saw.  She made a lot of otherwise grumpy travelers smile!

Doc was very pleased with her new thumb.  He thinks it is in a great position and looks great.  He was quite impressed with himself (rightfully so!).  I know once it heals and the scabs fall off it will look great, but for now it looks a little scary (the scab cam e off her palm and it looks great).  It looks much like it did a couple of weeks ago when her bandage came off, which is kind of surprising.  I guess I was thinking it would look a lot better.  It is, however, amazing to see her grasping with it already.  She is not actively moving it yet, but she is using it as you would a thumb for leverage.  She starts daily OT on Monday, which in time will hopefully teach her to use it.

We are so lucky that Anastasia is such a happy and sweet little angel!  She just melts my heart!  She also makes my heart ache in ways I didn’t even know possible.  Deep down I know that she will overcome any obstacle that stands in her way, but sometimes it makes me so very sad to see her go through what she has gone through.  For the most part I try not to dwell on it, but some days I just want to shout WHY her and scream how unfair it is.  Watching your child struggle and suffer is overwhelming at times.  God has graced Annie with the most amazing spirit and personality, and for that I feel so blessed!


Monday, February 13, 2012 11:06 AM, CST
Annie was sprung from the hospital Wednesday afternoon, only to develop pneumonia by Thursday afternoon.  She was one sick little girl with a high fever and a terrible cough, but luckily, the hefty shot she got Thursday night worked quickly and she was feeling better by Friday.  She has had to have some breathing treatments, and is on oral antibiotics, but hopefully is on the mend.  We are excited to go back to West Palm this Friday to get her bandage removed and her stitches out.  I am sure she will be overjoyed to get the bandage off!

She is increasing her vocabulary daily, with uh-oh as her new favorite word.  She likes to purposely drop her goldfish on the floor and then say uh-oh.  So very cute!

Thumbs Up!

Tuesday, February 7, 2012 6:22 PM, CST
Procedures went well today. She apparently has an undersized airway, which should improve as she grows. She was very swollen so doc could not get his scope as far in as he would have liked. There is a strong suspicion of reflux, which could be causing the swelling. She has a tube in her nose for 24 hours to test for reflux. We are staying in the hospital overnight just to make sure she does not have any breathing issues from her airway being bothered today. She is very fussy and agitated (thank you breathing treatment and steroids). Hopefully all will be well overnight and we can go home after they take the probe out of her nose tomorrow.

Friday, February 3, 2012 10:30 AM, CST
Our trip to FL this week was exhausting, but well worth it!  Doc reassured us that her thumb still looks fantastic and no damage was done.  Halleluiah!!!!

Looks like her bronchoscopy is going to take place this coming Tuesday, so keep your fingers crossed that all goes smooth (since she has to be put under again).


Monday, January 30, 2012 8:34 PM, CST
Well, as usual Annie has decided to make the record books again.  Prior to leaving FL we saw the PA to have her checked out.  Me: What happens if the bandage come off?  PA: That has never happened before.  Me: Um, okay (thinking to myself, you haven’t met Anastasia).  PA:  says nothing but looks at me like I have 2 heads.  I should have known better!  As active as she is, I just knew it was a possibility, and sure enough, the unthinkable happened yesterday and the bandage came completely off.  I FREAKED out!  I called the PA (how foolish was he to give me his personal cell number??) and he instructed me what to buy and then how to wrap it again.  He also instructed me to get in with someone (orthopedist) Monday to have it “professionally” bandaged again. 

I’ll spare you the details, but needless to say my bandage job was better than the ortho guy we finally got in with (what an ORDEAL that was!!!).  I was uneasy with what had been done so I called the surgeon’s office and left the details of what was going on.  I got a call back within minutes and was told that the Dr wanted us to get back to FL ASAP.  Apparently the positioning is extremely important at this stage and he wants to see her.
The fun at my house just never ends!  I am getting close to my breaking point.  I know things could be worse, yada, yada, yada, but really?  Can she not get a break?  Can we not get a break?  From the time I was 23 weeks pregnant with her until now it has been a constant roller coaster of worry.  I really don’t know how parents of chronically ill children survive, and I pray that I don’t have to find out!  I am trying to stay positive, but  I can only find so many “silver linings” to situations.
We also saw the pulmonologist today and as expected he wants to scope her to evaluate her airway.  He is also going to have the ENT there to place a tube (via her nose) to evaluate her for reflux (she gets to keep that for 24 hours….good luck with keeping that in!!!!!).  Her symptoms of reflux have completely subsided, but he said that it is possible to still have it and not have symptoms.  She has to be completely put under, so that kind of sucks for her.
In other news, Alexander has transformed into a terrible two from hell.  He apparently had a complete meltdown at school today, including kicking, hitting, and trying to bite his teacher.  I have no words….except, I need a drink!!!!

We fly out first thing in the morning.  Here's for hoping no damage has occured, she gets a new, secure bandage, and we get to come back the next day as planned!

Home Sweet Home!

Saturday, January 28, 2012 8:37 PM, CST
There's No Place Like Home
It’s so good to be home!  Both kids (and both parents) are so happy to be back in their own environment.  Annie can’t seem to catch a break though!  She has been SUPER fussy the past couple of days, which is so uncharacteristic for her!  Upon suspicion of an ear infection, I took her to pedi today, and sure enough, both ears are infected.    Here’s for hoping that the antibiotics kick in soon and she feels some relief. 
Our pulmonary appointment has been moved to this Monday, which is good news.  The sooner we can get her respiratory issues figured out the better.  We are all extremely exhausted, but hopeful that we can catch up soon.

Pollicization Number One Complete!

Saturday, January 21, 2012 7:39 PM, CST
Home Sweet Home!
Well, home away from home I should say.  Annie was discharged from the hospital and is doing so much better!  It was a rough night again from the perspective of no sleep for Annie, me, or my mom.  I think the high doses of steroids and all of the breathing treatments made her extremely edgy and agitated so sleep just wasn't happening for the poor thing (except when Gee was holding her).  She was beyond exhausted!  She took a great 3 hour nap as soon as we got home, so that did her a lot of good!

Her thumb is still looking good from a circulation standpoint (we can only see the very tip of it).  We have to check if often to make sure it is not turning blue.

Post-op was a very traumatic for Annie (and the rest of us).  At one point her airway was so compromised she stopped breathing and turned blue.  The good news is that the PICU doc was in the room when it happened, so she was able to snatch her out of my mom's arms and get her breathing again.  She was about to intubate her when she came back around.  So scary!  Stephen and I were out of the room when all of this happened (which was so sudden) so my poor mom had to deal with this by herself.
The PICU docs were amazing, and due to their diligence to get to the bottom of why this happened and why she always has a "rattle" sound to her, several chest x-rays were ordered.  Come to find out her trachea is deviated to the right.  It was apparently this way on her per-op x-ray so it is not something that happened during this surgery.  Not sure why is was not noticed on the first x-ray, but I guess that is beside the point now.  We are not really certain what this means, but we have been advised to see a pulmonologist or ENT doc as soon as we get home.  I have consulted Dr. Google, but I don't really like what he has to say, so I am going to try to stay positive and hope for the best.  It will definitely be interesting to see if her trachea was like this from birth or not (she has had many, many chest x-rays).

Stephen and I had already decided to postpone her second surgery until we got to the bottom of her respiratory issues, so when we were advised not to move forward with any more surgeries until her trachea is evaluated we were totally fine with it.  Annie will still have to come back mid February to have her bandages removed, etc. but it will be a short trip. 

I am happy to report that Alexander is doing fantastic, thanks to Papa (Stephen's dad).  He is so happy and has been such a good boy.  He loves his Papa and is thrilled to be getting the one-on-one attention from him.  We are so thankful to Papa and Gee for interrupting their lives to come help us with all of this.  We really don't know what we would have done without them here!

Annie is a true example of the power of prayer.  She's an amazing little one!  We are hopeful that the next several days will be filled with continued improvements (oh, and lots of sleep for all of us)!!
Thanks for all of the support, it has really helped us through!
Friday, January 20, 2012 9:42 PM, CST
After a really scary afternoon and rough night Annie made drastic improvements throughout the day and was sprung from the PICU tonight. Thank you for the love and prayers!!! They were answered! More details to come but I must sleep first as it has been about 40 straight hours without any (unless you count a 30 min catnap last night).

Thursday, January 19, 2012 9:59 PM, CST
Surgery update
Aunt Katie here, giving a short update.  Anastasia has a left thumb!!!  The blood is circulating well and it looks good from what they can tell when it gets checked.  Today was a roller coaster though as Annie had trouble breathing after she got to the PICU.  Her airways are swollen.  She is getting steroids, and they seem to be helping her breathing to improve.  The sweet little lamb has been very restless and uncomfortable, but she seems to have had some moments of settling down.  Jeanine and Stephen greatly appreciate all the prayers.  Please keep them up!!!  Jeanine and Mom (Sharon) are staying the night at the hospital. Stephen is thankful to have his dad (David) there to help with Alexander, who has been a champ through all the travel and huge change in routine.

Thumb on the Way

Wednesday, January 18, 2012 1:37 PM, CST
Tomorrow is the big day……Annie will have pollicization number one (on her left hand).  Our travels to West Palm Beach, FL yesterday were tiring but uneventful, thank goodness!  Unfortunately we had too much luggage to fit into the dream machine that we rented (aka minivan), but luckily they had a suburban waiting for us.  Our condo is nice, but a little too small for the entourage that we needed to accompany us to FL (my mom, Stephen’s dad, and the little guy, Alexander).  The people here are a little on the snooty side, but hey, I can always rise to the occasion (just ask my sister) to be snooty with the best of them!  The weather is a beautiful, sunny 79 degrees.  Beats the heck out of the freezing temp in Nashville!!

Annie was a trooper today as they poked and prodded her.  Luckily everything checked out and she is all set to go.  Good thing they didn’t take my blood pressure…..they might have admitted me if they had!

Thank you for the continued love and prayers!  I will update as soon as I can, but at a minimum Aunt Katie will post when she is safely out of surgery.

Making Great Progress!

Friday, October 14, 2011 3:59 PM, CDT
Anastasia, a.k.a., Super Star, is doing GREAT, and continues to amaze us on a daily basis!  Her PT and OT are working wonders, and it is amazing to see her figure out how to pick up anything she wants to, including something as small as a puff!  It takes a little assistance getting there, but she can also sit on her own for a good amount of time.  Crawling; however, is proving to be more of a challenge.  I thought she was on her way to the “Army Crawl” but she has stalled out a bit.  She can still get to where she wants to by rolling and making a little forward movement by using her legs and her left arm, but she does not seem to have the strength in her right arm to make it happen.  She gets frustrated, which is frustrating for me to watch her struggle.  Our awesome OT made her some pretty cool weight bearing splints this week, so here’s for hoping they help!

Crawling is not the end all be all, and if she skips it all together and moves straight to walking so be it.  It is; however, the first major milestone that she hasn’t made.  In the grand scheme of things, not a big deal, but I would be lying if I said it didn’t bother me deep down, especially when I see other kids her age doing what they are doing.  I know it should not bother me in the slightest, and given all that she has been through and all of the progress she has made in all other areas, it is really just a small blip.  But blips happen, and even when small can make a mommy kind of sad.  Oh well, I am going to try not to dwell on it or give it much pause.  Sometimes it just makes me slip back into that why her mind set.  Why does she have to be the 1 in 100,000 to have Holt-Oram?  Not a helpful or positive way of thinking, but I am only human and it just happens from time to time.

We had a great time at the Nashville Heart Walk walking for “Team Anastasia”.  Thanks to awesome friends and family I surpassed my fundraising goal of $500 to a whopping $930.  So exciting to see people donate their money and time to such an important cause.  It was fun to see other survivors like Anastasia!

We are still working with genetics to determine if Annie really has Malignant Hyperthermia (anesthesia complication) or not.  It will be helpful to know for her future surgeries.  We are also scheduled for an EEG next week to make sure she is not having seizures.  She is doing some weird shaking of her head, which we think is voluntary, but just need to rule anything else out.  She likes to scare us, but then comes through, so here’s for hoping she keeps with that trend.

We have been super busy with all sorts of appointments lately, including some for Daddy.  Unfortunately, Stephen is now scheduled for surgery on October 28th.  He has lost 50% of his hearing in his right ear due to a condition called a cholesteatoma.  One of the 3 bones in the middle ear has been “eaten” (yes, those were the doctors words!) so it will be replaced with a prosthetic bone and he will have a graft to correct the perforation of his eardrum.  Sounds fun, huh?!?!  Not so much!  Hopefully he will recover quickly and without too much pain, and will get his hearing back!

Thanks for reading…and for the continued thoughts and prayers!


Monday, August 29, 2011 1:54 PM, CDT
Time flies when you are having fun!  Well, time flies anyway!  We have had a really busy month with a variety of appointments with a number of different specialists.  We we now have a GI doc, a physical therapist (we already have an occupational therapist), and have selected a hand surgeon (we had consults with specialists in OH and FL). 

Annie also had a (4 hour!) cardiology visit this month, which I am happy to report was mostly good news!  Her tests all looked pretty good, except for her chest x-ray which showed hazy lungs and what they thought was a tumor.  Yep, they thought that they saw a suspicious “lesion” on her clavicle, which had us all scared to death that she had cancer (neuroblastoma to be exact). 

When she went back for repeat films it was miraculously gone.  I think we had some divine intervention!!!  Needles to say; however, I think I aged about 50 years during the process!  I was so scared and worried I was numb.  As many of you know, my father died from a rare type of bone cancer, so it is never too far out of my mind.  Of course, neuroblastoma is apparently the most common type of childhood cancer, so since Annie only has rare things, it didn’t seem likely in the first place!!

As for the hazy lungs?  The cardiologist still refers to it as diastolic dysfunction but is hopeful that the farther out from surgery she gets the better she will get.  In the meantime they have doubled her Lasix (diuretic) to try and rid her body of the extra fluid.  I guess time will tell.  She continues to be very congested all the time but it doesn’t seem to bother her.  The data from her pacemaker still shows little to no use so they turned down the setting to see if she is really using it or not.  We will know for sure in a month.  It is so cool how they can read it and adjust it with a computer! 

We added the GI doc to her list of specialists due to constant throwing up and failure to gain weight.  Luckily, after switching her to a thicker formula she throws up much less and seems to be gaining some weight (we go Thursday for a weight check).  Keep your fingers crossed!

We started seeing the PT to help strengthen her core.  She has already shown some improvement!  She is trying mightily to crawl, but just doesn’t have the arm movement and strength to do it.  The PT does not think that she will likely ever crawl, but I have learned to never underestimate our little miracle baby!  As long as she can walk, who needs to crawl anyway?!?!  It is pretty amazing, but she can pretty much pick up anything she wants to.  She either uses both hands, or if she is laying on her back she uses her feet.  It is really neat to watch her figure things out.

We have scheduled Annie for her first hand surgery, pollicization (moving the index finger to the thumb position), in January.  The surgeon only does one hand at a time due to the intricate and delicate procedure, so she will have the second hand done a month after the first.  We have selected a doctor in West Palm Beach, FL, so it will be a challenge logistically speaking, but we are willing to do whatever is necessary to make sure  she has the best and most experienced surgeon.  Her third surgery will take place when she is between 2 and 3 years old, at which time she will have the radius on each side lengthened, which will straighten out her wrists.  We have done countless hours (days literally) of research and feel good about these procedures.  We have also had the opportunity to speak to a couple of families that have first hand (pardon the pun) experience with the surgeon and procedures.

Between her weekly OT, biweekly PT, and continued doctor’s visits I have decided to work part time.  I now get to spend all day Tuesday and Thursday with my sweet girl!

Doing Well

Tuesday, May 17, 2011 9:49 PM, CDT
I am happy to report that Anastasia is doing remarkably well.  We saw the cardiologist last week and he reassured us that she is on the mend and looks great.  They read the data from her pacemaker with a machine called the interrogator.  Love the name!  It literally tracks every heart beat with the date, time, rate, etc.  We were thrilled to learn that she is only using the pacemaker less than 1% of the time, if at all.  Halleluiah!!!! 

The only real remaining issue at this point is with her feeding.  She is not really overly excited about eating during the day (not sure how she could be my child, haha!).  We are working with a speech therapist and our pediatrician, so hopefully we will have resolution in the near future.  I am sure she would LOVE to get that NG tube out of her nose!

Next up for Anastasia is dealing with her hands.  We see the orthopedic surgeon on May 23rd for a repeat set of x-rays and a recommendation for treatment.  From everything I have read she will be tackling those surgeries when she is about a year old, which will be here before we know it!  Unfortunately there is not a pediatric hand surgeon in Nashville that is vastly experienced with correcting radial club hands, so we are researching other pediatric surgeons across the country.  Nothing is ever simple with our sweet little Annie, is it?!?!

In other news, it is with mixed emotion that I finally return to work at the end of this week.  On one hand I am excited to get a little normalcy back in my life, but on the other I am not ready to leave Anastasia yet.  To some degree I feel like I was robbed of our precious bonding time.  Instead, the last 4 months have been replaced with congestive heart failure, 2 hospital stays, 2 major surgeries, a scary infection, endless doctor appointments, etc.  She is finally healthy and now I have to leave her.  The good news is that my mom will be watching her for the next 6 weeks so I know she will be spoiled, um, I mean in very good hands.

We could never have made it through all of this without the continued love, support, and prayers from our family and friends.  Thank you doesn’t seem to say enough….   


Monday, April 18, 2011 10:16 PM, CDT
There’s no place like home!!!  We got to bring Anastasia home this afternoon after what seemed like an eternity.  Just today she found her voice again and cooed away all day.  It was true music to my ears.  She must have known that she was getting set free today.  She is still on more medicine than most senior citizens, but hopefully in time she will be able to come off of most of them.
Here's for hoping we all get some rest tonight without all of the beeping and endless interruptions to take vital signs!

Pacemaker Surgery Update

Tuesday, April 12, 2011 10:58 PM, CDT
Anastasia did great today!!  It was such a relief to see her big, beautiful eyes looking at us as we walked into the recovery room.  It turns out she did not need a Rolls-Royce, rather a Cadillac would do.  All that really means is that her conduction was better than they expected so instead of putting in a 5 lead pacer they were able to put in a smaller 2 lead pacer.  Woo hoo!!!!!

Her belly is super swollen and she has been in A LOT of pain, but I am hopeful that they can get it under control as the night progresses.  For whatever reason her nurse in the ICU right after her surgery was not overly keen on giving her pain medication and for some idiotic reason I ignored my motherly intuition and went with the flow (i.e. didn’t demand for them to give her pain meds).  Um, hello, do you see the large bulge below her heart?  Think it might hurt?  I have had enough surgeries to know that once the pain gets away from you it is hard to get it under control.  The good news is that Anastasia finally graduated from ICU to the acute care floor this afternoon and it is a lot more peaceful for all of us.  Our nurse rocks and has the same pain management philosophy as I do (i.e. bring on the morphine…or margaritas).  Hopefully we will be sprung from the hospital altogether in a couple of days.

I am SOOOOO very thankful that Anastasia came through today with flying colors but I am also very sad today.  They handed me an owner’s manual (okay, it is technically a patient manual, but you get the idea) for her pacemaker, and low and behold the cover only had pictures of senior citizens on it.  How depressing.  The marketing folks really need to reevaluate!!  I think a picture of Anastasia would be a perfect addition to their cover, don’t you?  Anyway, again, I am extremely relieved and happy that she did so well today, but that doesn’t take my sadness of the situation away.  I also miss Alexander like crazy and feel so guilty for being away from him so much.  He is in wonderful hands with his daddy and our parents, but I still feel so bad for him.  My heart aches to be with him. 

Thank you for the prayers…..Anastasia is proof that they work!  Please pray that her pain eases and she recovers from this surgery as quickly as she did last week.  She is a fighter, that’s for sure!

Monday, April 11, 2011 7:53 PM, CDT
Well, they tried to get Anastasia on the surgery schedule today to no avail.  They had her all ready to go, yes, that means she was STARVING most of the day, but just couldn’t make it happen based on the other cases that were going on.  She is now scheduled for tomorrow morning at 8 am.  Apparently she is in need of a “Rolls-Royce” of pacemakers.  I still don’t really understand much beyond the very basics as far as pacemakers go, but I am hoping to get an explanation at some point in the near future. 

It has been a long day of hurrying up and waiting…..for instance they told me I should get Stephen here by 10:30 because she was a go for 11.  At 11:30 they came to tell us hopefully it would be in a couple of hours.  At 2 they came and told us never mind, it will be tomorrow.  Oh well, at least everyone will be nice and fresh since she will be the first case!  Annie was fussy again today, even after she finally got to eat.  She has been sleeping all afternoon and evening so hopefully she will feel better when she wakes up!

We had a very strict day nurse today, which was interesting.  The good news is that she still gave Anastasia excellent care, AND it gave us something to joke about.  Too bad it wasn’t April Fool’s Day otherwise we would have definitely played some jokes to get her goat!  She definitely needs to take a chill pill, or a shot of tequila !

I really miss my other baby, Alexander!  It is hell to be away from him for so long!  Hopefully we will be home soon!  At least he LOVES all three of his grandparents and his daddy, so he has been in excellent hands during my absence.

Rolls-Royce, here we come!   


Saturday, April 9, 2011 5:29 PM, CDT
Back on the rollercoaster, but this time I was ready for the dip down at least.  I ran into Dr. Fish in the hallway yesterday afternoon and he pretty much prepared me to anticipate for Anastasia to go back into complete heart block (he definitely rained on my parade!).  Sure enough, she had to go back on the pacemaker this morning, which means she needs to have a permanent pacemaker put in next week.  Sucks.  Big time.  But, at least there is some comfort in knowing that we will not take her home and one day out of the blue her heart will stop beating.  But still, it sucks.  She will go back to the OR on Tuesday to have it put in.  They say it is a fairly quick and simple procedure.

Poor little Annie also had to have a feeding tube put down her nose because she is not feeding well.  She has started her coughing and gagging business when she eats which is an unwelcome development.  I swear it has something to do with the formula that we have to fortify her breastmilk with.  We switched to another one for babies with allergies, but that has not helped.  It is the strangest thing that she gets congested when she eats.  From what I have read on Dr. Google reflux can be the culprit, which she was being treated from prior to surgery, so possibly they need to return her to those meds.  Who knows!

On the positive side, they were finally able to remove Anastasia’s chest tubes today.  Those suckers were really big and apparently cause a lot of discomfort, so I am thankful that they could pull them.  They also pulled the central line out of her neck (due to high risk of infection) and placed a pic line yesterday.  She has been very alert today, which is a welcome sight!  She opens her big eyes and looks around.  No smiles yet, but hopefully those will come soon!

Needless to say I am a bit on the grouchy side today.  I am so ready for all of this to be over and done with.  I can’t even imagine how Anastasia feels!  No worries though, I have put on my big girl panties and realize that she is improving every day and we will be home soon.  Our neighbor in the ICU, Annabelle, has been here her entire life (264 days to be exact) waiting on a heart transplant.  They got the call today at 4 am that they finally have a match.  It has been a flurry of activity around here and everyone has been really excited.  Please keep Annabelle in your prayers for a successful transplant, and also the family that so graciously gave the heart of their little loved one.  I can’t imagine the grief….. 

Surgery Day

Tuesday, April 5, 2011 11:37 PM, CDT
Anastasia made it through surgery and is doing well at the moment.  It has been an extraordinarily difficult day with many ups and downs, but those are to be expected given what she has been through today.  I am too spent to write too much, so here are the important details:

·         VSD- full repair made with the exception of a very small hole remaining (which is fairly common).  VSD was 10 mm, which is considered very large
·         ASD-same as above.  Crazy that we did not even know she had an ASD (hole in the upper chambers of the heart) and that is was the same size as the VSD
·         PDA (patent ductus arteriosus)- successfully closed.  Nope, didn’t know she had this issue either
·         Right after they closed her chest she spiked a high fever (104) which is a sign of a condition called Malignant Hyperthermia (Google it for explanation- it is a rare disease (of course!)).  At first the anesthesiologist said he didn’t think she had it.  Then he went and did some research and spoke to “the experts” and said they were certain she did have it.  Now, at rounds tonight they are back to thinking she might not have it based on some other tests they have run.  They will continue to repeat the tests.  Yep, another roller coaster
·         Anastasia is still running a slight fever so they have her surrounded by ice packs.  The thought just make me cold
·         Due to the fever spike in the OR they were unable to give her anesthesia reversal medication so she has been heavily sedated all day.  She is starting to slowly (and I mean the very slightest amount) wake up tonight which is a wonderful sight!!  She is breathing so well that the plan is to get her off of the ventilator at midnight tonight.  Go Annie go
·         She quickly developed a conduction issue so she is currently on an external pace maker.  The hope is that she will overcome this issue; however, if she does not she will have to go back to the OR to have a pace maker put in.  We should know in about 7-10 days

I think that covers the highlights of today.  It was SOOOOOOO hard to see her for the first time after surgery.  I am sick with fear every moment but I am trying to cherish the “ups” that take place.  I know she is surrounded in love and prayer and she is in His hands.  We never could have made it through today without the amazing support system of family and friends that have been by our sides.  We feel your prayers and ask for them to continue.  Annie is a special little girl with a lot of fight!

Poor baby girl:

Open Heart Surgery Scheduled

Saturday, March 26, 2011 11:15 PM, CDT
I don’t particularly like rollercoasters.  The ups and steep downs scare me and make me sick to my stomach.  Why is it that our lives have turned into one that never seems to end?  I know, it supposedly builds character, but please, enough already!  Upon discharge from the hospital the cardiologist that watched over Anastasia during her stay told us that he was hopeful that she would be able to make it 5 more weeks before having surgery.  He went on to explain that children that are older and bigger do a lot better and have less complications overall.  He also said that since Anastasia is so young and her hole is so large that the surgery would be more difficult if it had to be done right now because there is not sufficient tissue to attach the patch to.

Imagine my surprise when I received a call from the cardiothoracic surgeons office on Thursday (the day after she got out of the hospital) informing me that she had been scheduled for surgery April 5th.  WHAT?  That was only 12 days away, not 5 weeks.  I explained what we had been told upon discharge about the 5 weeks, but she told me that Dr. Fish was involved and he feels she needs surgery sooner rather than later.  That call literally took my breath away.  I knew this day would come, but I really did not think it would be so soon.  I am glad that we see Dr. Fish this Tuesday since he has been out of town the last week. 

Anastasia continues to have issues with throwing up.  We saw the pediatrician yesterday and he added Prevacid to her drug regime to see if that helps.  He also adjusted her feeding schedule to a slow, continuous feed for 10 hours at night so we don’t have to wake her to feed her.  Last night went really well and she pretty much slept through the night.  She still coughed quite a bit, but once I picked her up and patted her back she calmed down and went right back to sleep.  Her coughing spells really scare me, so I can only imagine how she must feel. 

I still cannot believe that her surgery is going to be in 10 days.  I suppose I will never really be ready for it, but it just seems too soon.  It is so very hard to see your child struggle so much to do the simple things like eat and breathe.  I know that the surgery is the answer to make her well, but I would do anything to make it different for her.  I am absolutely terrified that she won’t make it.  I am very, very sad and it is difficult to think of much else.   Actually, it is difficult to think in general.  Good thing I am not working right now.  Speaking of which, I am lucky to live in a state that allows for additional FMLA leave time for the birth of a baby.  Instead of the standard 12, I have 16 weeks. 

I don’t know what I would do without the support from my wonderful family and friends.

Hospital Stay

Sunday, March 20, 2011 10:51 PM, CDT
It has been a really rough few days for sweet Anastasia and her stressed out parents.  She was admitted to Children’s Hospital yesterday after a long Friday night of gagging, holding her breath and looking really pitiful.  There are several things going on it seems.  They think she has reflux, thus the sticking out her tongue and gagging, so hopefully some Zantac will help with that issue.  She has also started struggling with feeding and slowing down on weight gain.  They increased her calories the latter part of last week by adding more formula to the breast milk to get her back on target with weight gain, but she has been struggling with the increased density.    

Ultimately, last night they decided to put in an NG feeding tube to assist her with her feeds.  She is expending too much energy eating, which causes her to burn too many calories, which is counterproductive.  She is allowed to feed from the bottle for 20 minutes and then takes the rest via tube.  She did really well the first 12 hours but then started throwing up.  We are going to back the calories down to see if that helps the situation.  Unfortunately, she has lost a little bit of weight in the last 24 hours.  Hopefully we can get her caught back up in the next couple of days. 

They reported that she has very wet lungs, which is more than likely a combination of her heart condition and what seems like a really bad cold.  She is very congested, has a terrible cough, and feels really crappy!  She is just so pitiful looking.  She has literally cried more in the last 24 hours than she has in the last 9 weeks, so much so that she is hoarse.  It breaks our hearts to see her struggle like this.  She also has to have oxygen support which oddly enough can be more detrimental than helpful to someone with a large VSD.  Apparently it is a fine balance between keeping her oxygen level where it needs to be but not giving her too much, so they are working to wean her off of it.  From what I understand, which with limited sleep and tremendous stress is somewhat sketchy, they are trying to determine if her symptoms are more related to her bad cold or congestive heart failure.

Even though this situation is dreadful I am relieved that we are in such great hands.  The nurses have been incredible and have gone above and beyond to care for Anastasia.  She has constant ups and downs throughout the day, but I am hopeful that she will start to have more ups than downs soon!  I really miss her happy little coos and smiles that I have not seen for awhile.  I can’t wait to have my precious little Annie back to feeling better.

It has been REALLY hard to be away from Alexander, but luckily he has had my mom, Aunt Katie, and Cousins Ryan and Emily to keep him busy and happy.  I wonder what kind of bad habits I will have to break.  HAHA, just kidding of course! 

The Beginning of Congestive Heart Failure

Monday, March 14, 2011 3:20 PM, CDT
The last week was a somewhat eventful week for Anastasia, which included an unscheduled trip to see the cardiologist followed by lots of tests (EKG, Echo, Chest X-ray, blood work).  She has had a difficult time tolerating the medication, and was throwing up every 12 hours (and we are not talking spit up, we are talking emptying the contents of her stomach throw up) and was very sleepy and lethargic. 

Most parents would be jumping for joy that their 8 week old was already sleeping through the night.  Me, not so much!  It is really difficult to get her to eat if you have to wake her up, and eating is our top priority at the moment.  The cardiologist mentioned that we might need to discuss a feeding tube (she had only gained 3 ozs in 10 days), but then said if we were going to go that route that he might go ahead and speak to the surgeon to discuss the possibility of just going forward with the VSD repair sooner rather than later.  SCARY!  I really want her to be able to wait until she is a safer weight before having the surgery, but I guess it is a balancing act.  They reduced her dose of Digoxin so I am hopeful that she will be able to tolerate the new does which in turn will help her heart work better; therefore giving her more energy to feed.  It’s frightening that something as simple as sucking on a bottle wears her out so much.  It’s hard to believe how quickly she seems to be deteriorating.  She has gone from eating 21-24 ozs a day down to 14-17 ozs a day. 

I guess we are just holding tight to see how she does this week.  I feel like we are in really good hands with Dr. Fish and the Vandy team and they are actively following her progress (for instance they wanted me to call them today to report her feeding and diaper totals over the weekend).  Word on the street is that Dr. Fish is the best pediatric cardiologist in town so that gives me some peace of mind.  In other news, my mom, sister, niece and nephew are on their way to Nashville.  Yippee!!  They are driving from Dallas so they won’t be here until Tuesday, but I am SOOO excited!! 
That’s all for now!  Prayers for Anastasia are always welcome!!

Tuesday, March 1, 2011 10:34 PM, CST

Anastasia got the once over by the Cardiologist today.  I am not sure why I was taken so off guard, but for some reason I was not really expecting that she would already be showing signs of her heart condition, but apparently she is.  According to the doc most babies start to show signs between 6-8 weeks, so she is right on schedule (she turned 6 weeks on Sunday).  Maybe I was so taken aback because we cannot physically see any of the signs yet (thank goodness), but still, I would have thought that somewhere along the way I would have at least put the thought in my head that we would arrive at this day.  Maybe it is part of my subconscious denial?  It didn’t help that the doc was a complete ass to me today, but I won’t bother ranting about that.  Let’s just say I am going to refuse to take the last appointment of the day ever again, which seems to be the only time they want to schedule us!  Grrrrrrr…….. 

Anyway, the signs she is displaying are an enlarging heart (viewed via chest x-ray) and irregular bloodflow in her heart (which seems to be taking a shortcut straight through the hole, instead of taking the normal course).  The good news is that she is still gaining weight, albeit she is in the lower end of the weight percentile for her age.  She weighed in at 9 lbs 6 ozs.  Going forward we will be fortifying her breastmilk with a teaspoon of powered formula for each of her feeds to give her extra calories (the magic number we are aiming for before they will do the surgery is at least 11 pounds).  Additionally, she has been started on 2 medications.  Digoxin which is given to help the heart beat stronger, and Lasix which is given to help prevent the body from holding too much fluid.  We go back in a month at which time they will do another echocardiogram.  It looks like we might be looking at surgery sometime in May.

It was a very long afternoon and Stephen and I both feel kind of emotionally drained.  It’s a lot to take in and digest.  And quite frankly, it’s hard to believe any of this is really happening.  I know some sleep will help me gain my perspective back.  Thanks to my wonderful mom, who insisted on taking the monitor so she can get up with the baby, I will be able to get some rest tonight!

Official Diagnosis

Friday, February 25, 2011 10:56 PM, CST
Anastasia’s preliminary diagnosis, Holt-Oram Syndrome (“HOS”), was officially confirmed today.  I never thought I would be thankful for such a diagnosis, but oddly enough I am extremely thankful and relieved.  HOS is not known to carry any other significant issues (other than the ones we already know about with the arms, hands, and heart) so that is why I feel such relief!  HOS is often referred to as the hand and heart syndrome, which given Anastasia’s VSD and radial clubbed hands, is fitting for her. 

I feel like I have been marking time since all of this began during that 23 week ultrasound, not knowing what our precious daughter’s fate could be, but now I feel a sense of peace and hope that we can finally move forward with the knowledge that Anastasia will be okay once she gets through her heart surgery and hand surgeries.  We meet with the Geneticist at the end of March, which will hopefully shed some additional light on this rare syndrome (affects about 1 in 100,000). 

Next up is an appointment with the cardiologist on March 1st, so keep your fingers crossed and say some prayers that she is still doing okay.

Thanks for your continued love and support!  It helps more that you can ever know!!  

Here is a picture of the first time I got to hold my sweet baby girl

Background Story

Our journey began during our 20 week ultrasound, which was a routine scan to determine gender, general development of organs, and overall health of the baby.  Everything appeared to be “normal”; however, we were told that our little bundle of joy was not in a favorable position and the heart could not be fully visualized.  We were assured that this is typical and were advised to return in 3 weeks for a repeat scan. 
Feeling confident that all would be well, I showed up for my appointment, sans Stephen, fully expecting a quick scan for confirmation that everything was in perfect order.   An hour later I was told that something was amiss with the position of the heart in our baby girl’s chest and I would need to come back in 4 weeks for another look.  A few possibilities were mentioned as the cause of the positioning, including the possibility of nothing at all. 
After a very long month of worrying we returned for our repeat scan, at which time we were told that the baby appeared to have a condition called Tetralogy of Fallot but we would need to see a pediatric cardiologist for a confirmation of diagnosis.  It was also mentioned that the baby’s wrists appeared to be in a fixed position which could signify a chromosomal problem.
A week later we were worked in to see a cardiologist at Vanderbilt.  After a fetal echocardiogram Tetralogy was ruled out but a definitive diagnosis could not be established.  It was evident that the right atrium was enlarged but the reason could not be determined.  We were also told that there might be a hole in the heart (Ventricular Septal Defect, or “VSD”) but due to the poor positioning of the baby that could not be determined either (you see a theme here?).  We were advised to come back in 6 weeks for a repeat echo.  In the mean time we had an amniocentesis to check for chromosomal abnormalities, which came back negative.  The hands are still in a position that they refer to as clubbed hands and we will not know the severity or cause until birth.  It could be a birth defect that can be corrected over time or could be a chromosomal condition, or a neurological condition.  
In mid December we had a repeat fetal echo, at which point a diagnosis was finally made.  They were able to determine that our baby girl has a significant VSD and enlarged right chamber.  Due to the size of the VSD the pediatric cardiologist anticipates the necessity of open heart surgery at 3-4 months of age.  He also suspects that the enlarged chamber is due to the vessels being attached improperly (which can be addressed when the VSD is being repaired); however, confirmation will not be able to be made until birth.
We are scheduled for a c-section on January 18th at Vandy

Wednesday, April 4, 2012

To Blog or Not to Blog

I have struggled with this decision, but ultimately, I find it therapeutic to write about my family, so blog it is!  Also, we have an amazing network of friends and loved ones that have supported us through rough times this past year, so it helps having a place to give updates to everyone at the same time.  I have been posting on CaringBridge, which is a great site, but it is dedicated to those with serious health conditions.  While we (Anastasia) definitely qualify for the site, I think it is time to move to a new site. 

So, here I am.  It might take awhile, but I will get some posts moved over from the last year that detail our journey through open heart surgery, pollicization surgery, and other happenings along the way.