Fantastic Friday

This morning we drove down to Hope for Olivia's cardiology check up.  It's crazy to think this is only the second time they've seen her since her Glenn.  All the grandparents, Brian and I had a little pool on weight and height.  So without further ado here's where she weighed in today at 6 months and 1 1/2 weeks. 

Height: 27 1/4" 90th percentile
Weight: 15lbs 13oz 50th percentile
Head circumference: we couldn't remember except that it's in the 95th percentile
Pulse Ox: 85-91

I was right on the money with the height and everyone was off with the weight.  Since she's got so many more rolls these days we all thought she was in the 16lb club.  I don't throw out the percentiles to impress - merely to show how far we've come post Glenn especially in the weight and head circumference.  Pre-Glenn Olivia's weight was anywhere from the 15-20th percentile and her head circumference was only in the 40s; her sats were usually in the 70's in the month leading up to the surgery. 

She is now officially off Lasix but we're adding baby aspirin back into the mix.  Since these heart kiddo's are more prevalent to get clots, the doctor feels that he'd rather be proactive.  Enalapril is still in the medicine mix and it doesn't sound like that's going to change for the near future.  When I asked about it today her doctor said that he'd like her to stay on it and as a preventative measure to keep the heart muscle from thickening.  I also took today's appointment to ask about planning for the Fontan and right now she's on pace to be about two before the third (and hopefully) final surgery.  We'll have at least one cath if not two before then. 

On our way out of the appointment we ran into Olivia's heart buddy - Jonah who is now 10 weeks old and looking soooo good.  It was wonderful to sit and talk with his parents about heart baby stuff like it was par for the course.  We also went and visited our friends at the Ronald McDonald house. 

Best news of the entire day?  Olivia is doing so well that we don't have to come back for three months...that's right NEXT YEAR!  After all the sad passings this week in the heart community a good checkup was most desired, but this was just the icing on the cake and we couldn't be happier.  I for one am relieved and my four day headache is starting to subside. 

Early Intervention Evaluation

We had the state funded Early Intervention group out to our house today to go over their various assessments of Olivia in the past few weeks.  Overall nothing shocking, the little missy is behind her healthy heart peers.  We got the standard "She's doing really well considering all that she's been through".  For all you heart families out there wondering exactly what that means here it goes:

• Muscle Tone - Olivia is currently on the low end of the normal range meaning that her muscles are not as strong and lack the edurance of a 5 1/2 month old because of all the time she's had to spend on her back
• Verbal Skills - A baby at this age should be babbling more and making sounds that start to actually sound like trying to form sounds like Ma, Ba, Da, etc; these are considered the building blocks that will eventually lead towards talking
• Symmetrical Strength - Olivia has always favored using everything on her left side, we attributed that to the arm immobilizer she had on post-Norwood for virtually the 1st month of life.  Subsequently she prefers to sleep on her left side, play with a majority of toys, and even turns her head to the left (which doctors also have said is an indication of reflux)
• Posture - Because she's spent so much time on her back laying flat with post-op surgical restrictions she tends to put her arms straight out and resemble a starfish whereas ideally she should be curling up into a ball like a roly-poly or armadillo - haha I know I couldn't come up with a better example

In short the state recommends that we start physical therapy sessions once a week as soon as possible and schedule another assessment with the speech pathologist in 3-4 months to make sure that the verbal skills start coming along.  Brian and I have decided that we want to wait a month to see how Olivia does later this week when we can start some tummy time and then in another two weeks when we can start doing exercises by pulling her up to sitting with her arms and holding her under her arms.  We will start putting her in front of the mirror every day for a little bit besides bath time to see if that will help her with the language skills as well.  Quite obviously she did not appreciate being talked about for such a long time because she scowled at all of us and then last night she played on her activity mat and talked on and on for over an hour. 

Post-Op Appointment

Olivia had her post-Glenn follow up at Hope yesterday, while they are typically non-eventful appointments to just get a quick once over regarding the incision, we had a little bit of a hiccup last Friday.  I was at the office on a conference call when I saw Brian calling in.  At first I didn't give it a second thought because I assumed he needed me to pick up something on my way home.  Then an email popped up with the title "Olivia's Chest" and a picture attached, my first thought "Uh oh".  I open up the attachment to find her chest with a red area at the base of her incision like a silver dollar.  I can't tell you the words that ran through my head after that.  The call ended, I squared up things at the office and took off paging Dr. Husayni and Gia to see what they thought we should do. 

In the meantime, Brian was feverishly getting everything around the house together so that we could take off in a minute's notice if necessary.  I get home and still no return calls from my pages - hmm this is unusual.  I called the Heart Institute and was re-routed to one of Dr. Ilbawi's Nurse Practitioners and explained the situation.  I mentioned that we had pictures that we could email and she was ecstatic.  Getting directly to the point - I ended up having to scrub up, remove all of the Steri-Strips and then wash her whole incision with warm soap and water (which she absolutely refused to let us do even a few short days before).  As a precaution they called in an antibiotic to fight off any infection that may have been starting.  Everything else was completely normal, Olivia had been eating like a horse taking 4.5oz every 2.5 hours, no fever and overall pleasant disposition.  So we were lucky no trip to Hope - however the staff was very honest in the event that anything changed over the weekend or leading up to the post-op appointment they may keep admit her for IV antibiotics. 

By Sunday it was clear that the antibiotics were doing their job and all the redness was going away.  Yesterday it was a confirmed infection, but Nurse Carrie said things look great and her sternum has healed wonderfully.  Apparently they see this type of incision infection relatively often.  It was only at the base of her incision which is the end of the disolvable sutures.  They put in a fairly large knot to tie things up and that takes quite a while to disolve and sometimes the body rejects it altogether.  While at the appointment, she was weighed 13 1/2 lbs, length 25 3/4", SATS 94%!!!!  Things are looking wonderful and we could not be happier.  In other heart baby news Jonah and his parents were able to go home on Monday and we are so excited for them.  Hopefully Olivia and Jonah will be able to have a baby date sometime in the near future. 

No Place Like Home

WE ARE HOME!  Olivia's hospital stay was 96 hours from the time she left the OR until the time we got in the car to get out of Dodge.  It's simply amazing as to how resilient these little ones are, I can only imagine that were it me having a heart surgery I'd be laid up for at least a couple of weeks and in far worse spirits.  Olivia on the other hand is thriving.  She's eating much better than we expected, she isn't showing signs of being in much pain and her staturations are only improving.  Last night she was anywhere from 90-100%; up from low 70's prior to the Glenn. 

More profound for Brian and I is that we are two thirds of the way there with Olivia's surgeries.  We were so excited when we came home from the Norwood but the excitment only lasted a few weeks before we started talking timetables for the Glenn.  Now we're looking at at least one year of firsts.  1st Halloween, Thanksgiving, Christmas - you get where I'm going. 

There is no way for us to know so soon if we will need some intervention between the Glenn and Fontan but today's echo was "beautiful" to quote the Cardiologist.  The meds are a little different too - Olivia's now on Enalapril to lower her BP post-op but it should be short term same goes for the Lasix - they'll review in a couple of weeks.  She's still on Prevacid for reflux, Reglan to help with her digestion, Poly-Vitamins & Calcitriol.  Bye bye to Digoxin and Aspirin. 

Tonight Brian and I are exhausted and looking forward to sleeping in our bed again.  More importantly we only have two doctor's appointments in the next month!  We were loving and living life before, but it's definitely going to be a nice change of pace without another surgery looming over us for the foreseeable future.

Sounds of Alarm

Like I said in this morning's post, I was too nervous to really acknowledge how good things have been going for Olivia.  Take a breath as she is still fine but this has certainly been one of the worst days that I have ever witnessed throughout the two hospital stays that we have weathered with her.  This morning started with the revelation that she has pneumothoraxes (extra air in her chest cavity putting pressure on her lungs) on both sides of her chest; a very common and treatable side effect from surgery.  Nevertheless, it was a setback and further delayed our ability to finally give her some food.  Her nurse was able to give her some Tylenol and Brian and I were comfortable enough to leave her and grab some breakfast. 

When we came back from breakfast to the PICU all hell had broken loose.  One of the little guys that had his heart surgery at virtually the same time as Olivia had coded.  Worse still I had just stopped by his room this morning to talk with his mom and relish in the fact that both of our little ones seemed to be on the right road to recovery.  Brian and I quickly hid out in Olivia's room to check on her and silently prayed for the best down the hall.  It was not to be so, a little while later we could hear his mother screaming for her baby as the medical team did their best to save him.  In a last ditch effort Dr. Ilbawi and his staff put him on ECMO but currently things look grim.  Within the next few hours four more cardiac babies/kids would code.  Some on the floor of the PICU, one in the cath lab, and another in the actual clinic for Norwood babies. 

You can feel the anxiousness of everyone's emotions when you walk onto the floor right now.  I find myself trying to avoid eye contact with any of the family members although they have been sweet to continuously ask about Olivia and offer up their prayers.  I don't know where the road will take any of these little ones that has battled so fiercely today, but I do know that I will be haunted for the near future and never forget the sounds of that mother screaming as she feared for the life of her child.  For all of you who can look at your healthy children at home - no matter the age - please take the opportunity to tell them how much you love them as you never know what the future may hold. 

I will leave you with a little bit of optimism.  Olivia's pneumos have started to go away on their own and we were able to give her 4oz of Pedialyte which she sucked down like she's been in the Sahara.  Her color is looking good and we're going to be able to feed her the next time she wakes up. At this point we'll take stable as a huge moral victory given the situation on the floor. 

2nd Update

They just came out and let us know that she's now on the heart/lung machine starting to work on the repair and everything is going as it should be going for now.  We should be getting another update around 1PM CST. 

Off in a Flash

We woke up this morning somewhat leisurely because we didn't have to be at the hospital until 10.  Around 7:15 the phone rang and it was the hospital asking if we could get there as soon as possible to move up their surgical schedule for the day.  Surrrrrrrre, no problem we'll be out of the house in fifteen.  Sorry Olivia, that last bottle you were looking forward to, yeah not going to happen.  I was in and out of the shower in two minutes and Brian had the car loaded up by the time that I was dressed and Olivia was changed.

Off we went, only to really realize we weren't going to gain much time due to the traffic in Naperville between the hours of 7-9am.  We finally got here around 8:45, they took us up to pre-op where we went through the normal Q & A and waited some more.  To her credit, Olivia was very calm.  Smiles were few and far between but can't say that I blame her.  She definitely knew something was amiss.  The surgical team just wheeled her back a few minutes ago and depending on the amount of time it takes to get lines in and make it through the scar tissue it may be another hour or more before you hear from us.

Thank you all for your contiued well wishes, prayers and love. 

Blood Donations

Hi Family & Friends in the Chicagoland area that are interested in donating for the little Missy on her upcoming surgery.  You need to do a few things to qualify and donate specifically for her, I'm sorry I didn't get the info out sooner, I only know this stuff now because Grandpa ran into some roadblocks and gave me a heads up.

You need to call ahead to schedule the donation that will specifically be set aside for Olivia.  The blood has to be donated between Today and Monday due to Dr. Ilbawi's instructions.  Please be aware that some Lifesources in Chicago will not facilitate these specific donations so you need to outright ask if they can or they will when you're calling to set up the appointment. 

Also, you need to know her birthday - 3/27/10 as well as her full name, the date of surgery (8/5), that it's being performed at Christ Hospital in Oak Lawn and our home address.  If you do not have our home address please text Brian or I to get it from us. 

Olivia is A positive and can accept blood from either O or A (doesn't matter if you're positive or negative).  If you need to know specifics about whether or not you qualify as a blood donor please refer to the Lifesource website http://www.lifesource.org/donatingQual.asp for donor eligibility information. 

That should be it for the specifics as it pertains to the donations.  Thank you all for the interest!

No News is Good News

I met up with the Little Lady, Grandma & Grandpa at Hope yesterday for her appointment.  The Grandparents have her on Fridays while Brian and I work, which I think they throughly enjoy.  Anyway, I got there and we didn't wait too long before we were called back.  Getting a BP was super dramatic as it was last week but this time Miss Michelle picked up Livvy and had a chat with her to let the little one know that she isn't out to hurt her, whatever it was it worked.  Michelle ran the BP unit once more and got a great reading now that Liv was nice and calm.  Thank God Michelle has the patience of a saint to sit there and make Olivia feel comfortable enough so we can get vitals taken.  Sats were even better than last week, height is now 25 1/4" and weight is around 12lbs 1oz - which pleased Dr. VanBergen despite the fact that Brian and I revolted last week by only trying the formula fortifying a few times before we threw in the towel. 

They are pleased with everything and say things look good for us to wait for the Glenn until 8/5 so that's the official date.  All else aside, it was just a lot of waiting around so here's the best pic we have thus far of Olivia & I compliments of Grandma & Grandpa. 

Pebbles and I hanging out in the waiting room

Tough Choices

We are nearing the Glenn and with that or any other invasive procedure comes the mental preparation for all that Olivia, Brian and I will face with the surgery and Olivia's overall recovery.  I had so much time before the Norwood, from week 20 of my pregnancy on to think and stew about it over and over how giving away our baby girl would be when the time came for her surgery.  I think by the time the surgical day rolled around I was numb to the emotions because of pain, sleep deprivation and shock to the whole delivery that it just didn't seem to shake me the way I thought it should have or would have. 

This time around, I haven't had as much time to think the whole process through.  We've been too busy focusing on the wonderful ups and small downs with Olivia's day to day to look too far in the future.  I do know that when we go in for the pre-op appointment I'll have to sign the consent forms that warn us against all the risks ranging from infections to strokes and/or death.  It's the third time in Olivia's life that I'll be signing off on those terms but it's been very clear from the start of our journey with HLHS, either we go the surgical route or we bury our baby. 

Based on all the heart families out there, July has been a hard month on our little ones.  There have been some babies that are now angels watching over the rest of those that continue on, those that are fighting for their lives today and those parents that are having to contemplate signing off on DNR's or end of life care for their little ones.  Knowing that's going on somewhere out there for another set of heart parents (or just parents in general) just makes it that much more rewarding when I end my workday to get home to Olivia.  I never want to entertain the idea that one day she may not be here with us, but that is our reality so I try to cherish each day as it comes.

Isn't She Lovely?

Of course I'm biased and blindingly in love with my daughter and all that other totally partial stuff, but the picture of her that Brian took yesterday is my favorite to date.  It also helps that her ridiculously large grin is because Brian figured out if mimics the snorring pattern of the 3 Stooges that Olivia finds this to be the most hysterical thing that she's ever heard. 

Unfortunately this beautiful smile and great mood didn't last all day because we went back to trying the formula fortified breast milk.  Bottle 1 went down all right, she only took 2 oz but I didn't really worry about it because I figured she needed to get used to the new taste.  Bottle 2 while we were at dinner with Grandma & Grandpa went down even better, she took all 3.5 oz.  However, once we were in Babies R Us getting a few things, the whole situation got a little interesting.  First, she was fussing because she had a wet diaper, so I changed her, but as I was changing her, she started thrashing around which is never a good sign. 

I picked her up only for her to really belt out some high pitched crying and I could feel her tummy fairly hard against me.  I looked down at her and she was turning very Smurfy from forehead down to neck.  I went over to Brian to get some Mylicon from the diaper bag, which of course he was in the midst of exchanging and we had to root through an entire shopping bag full of stuff before we found it.  We dosed out the Mylicon, I gave it to her and put her pacifier in which lasted for about 30 seconds before I heard the trouble coming.  Oh yes, projectile vomit in the middle of the Babies R Us.  We had to improvise and strip the little lady down in the middle of the store and make sure that no one slipped in her puddle of formula (sorry for the image).  We hightailed it to the car and Grandpa took over as wheelman  so Brian and I could be in back with Olivia in case she had another episode.  Thankfully she seemed much happier since her tummy was rid of that formula and she was smiling by the time we made it back home. 

The fussiness wasn't quite gone though, even though we went back to regular milk again she had another melt down at 9 and again at 1 am.  We had to give her Tylenol which I hate to do because I don't want it to become ineffective for her when we need it for pain management after the Glenn, but she was exerting more calories than she has been taking so we needed to quiet her down.  This morning it seems that things are going well with her and Nonna and the doctors have already said that we should just leave things where we are right now and re-assess on Friday.  If all goes well tonight we'll be able to take a nap together, which if I haven't mentioned before when Olivia falls asleep on me that moment becomes one of the best moments of my entire life each and every time.  I love to feel her little heartbeat on me and take it all in.

The Glenn

Game on.  Please know I say this figuratively as I am not looking forward to the Glenn surgery but I am looking forward to Olivia being 2/3 of the way done with her surgeries by the end of the summer.  We are set to go on August 5th.  I am not nervous, at least not yet about the prospect of going through this all again.  We were told to expect anywhere from around a 4-6 day stay in the hospital provided all goes well with the surgery.  I already know from the Norwood recovery that Olivia has plans of her own and will do what she sees fit the duration of the stay. 

Brian's last day in the office for the short future will be July 30th.  After Olivia has the Glenn he will be staying home with her using FMLA during recovery while I'm back in the office.  I have no worries, Daddy and daughter will have a ball together spoiling each other with all the individual attention to one another.

Our pre-surgical appointment is on the 2nd and hopefully it will be all green lights.  We know that she needs this procedure to continue with her fight.  Her color isn't as good as it once was and her sats are starting to creep down as she continues to outgrow her shunt.  Last night I laid her on her Boppy and she lifted her little head all around to check out the world.  It was one of the more pure moments of joy that I have ever experienced.  I also know that without grief I would not have as much appreciation for that moment of joy. Currently one of the heart families that I know through the blogs is undertaking the fight of their life.  Their little boy Luke has a particular difficult case of HLHS and the prognosis is grim right now unless "a miracle happens" according to the doctors.  All of these heart babies are miracles and I can only hope that Luke's family gets one more miracle for their team. 

In preparation for Olivia's surgery, we are going to donate blood for her and have it set aside.  If you are local, please feel free to donate to her cause.  Any Lifesource in the Chicagoland area is acceptable 3-6 days prior to her surgery date.  She is A positive and can accept A blood (either positive or negative) and Type O as well.  If you're not a match but still want to donate just as a gesture, that is soooo much appreciated as the blood banks always need donors.  I for one have never donated before and am looking forward to making my first contribution.  It's just another way that she has changed the way that I think, I don't even know if I'm a blood match and I don't care.  If Olivia can't benefit from my blood, someone else in need will.  She changes my life on a daily basis.

Cath Results

We have been in recovery with the Munch now for about 2 hours and all is well.  She was super fussy when we first came in and her poor little voice sound like that 80 year old woman that's smoked all her life once again.  The nurses explained that she was probably parched from being on the vent and wanted us to start giving her Pedialyte.  It was slow going since she's never had it before.  After she had about an ounce she got extremely fussy and threw it all up but had a few nice burps in there too.  Apparently she just had some extra air in her tummy that she needed to get out in a bad way.

The results from her cath were very positive and didn't require any intervention.  She does have some narrowing of her left pulmonary artery but we've been told that's pretty common with these hypoplast babies.  It's something that they will monitor closely and if necessary balloon open during the cath getting her ready for the Fontan (surgery #3) because they will go in from a different entry point.  There was a small difrence in pressure readings from the top of the aortic arch to where the arch is grafted on the Sano shunt, but they didn't see any narrowing so there was nothing to balloon.  Again, these are things they will watch but no cause for alarm.

Assuming her vitals and subsequent feedings go well, we will be out of here around 6pm tonight.  I for one cannot wait because she just looks uncomfortable with all the wires and her poor little arm strapped to an immobilizer.  Don't worry Olivia - Mommy and Daddy are going to bust you out of here!