Post Op Update

The past few days have been a blur and I expect that my spelling and grammar in this update might be pretty hazy as well.  Alessandra had her thoracic duct ligated last Thursday along with the pleurodesis procedure.  The surgery took about 3 hours and she has a 2.5-3 inch scar on her backside in between her ribs.  A painful location, without a doubt, more painful than her sternal incision.  She was extubated shortly after surgery but was struggling.  The purpose of the procedure was to close off the duct that was causing all of that leakage in her chest.  It was a last resort since the other less invasive measures did not work.  For double assurance, after the ligation, the pluerodesis chemical was inserted through her chest tube into her chest cavity to inflame the tissue and seal up the leaking channels.  Another painful procedure.

The first day after surgery was a typical post-op first day.  She was heavily medicated and monitored to get her through the worst part of recovery.  By nightfall she had taken a turn for the worse and needed to be re-intubated.  She wasn't getting enough oxygen on her own and her lungs were working too hard.  Her heart rate was high and she was just so uncomfortable.  The idea was to give her some additional support for the night so that she can rest and regain strength.  We hoped to see improvement by Saturday but her lungs were worse.  The reason for this I don't know and can't understand.  It seems that her body reacted to the pain and invasion by clamping down and producing secretions, almost like RSV or a respiratory infection.  Part of her right lung collapsed and she started to run a low grade fever.  Her sats were terrible and her lungs sounded like crackling wax paper.

Since Ali is intubated, she needs to be heavily sedated to keep her from hulking out and rejecting the breathing tube.  Poor kiddo has been sleeping for days.  Now, we have had many ups and downs and trying times through this but last night was by far the worst night we have had.  Even though she's sedated, she was completely intolerant of anyone messing with her.  When the nurses try to suction her or simply re-arrange her position she clamps down so hard that the ventilator cannot support her and her sats drop.  Last night they dropped really low, like 15-18 low.  I've heard that the pulse ox isnt the most reliable measure, especially for anything below 60 and by looking at her she certainly didn't look that low, but still.... it was a new complication and low numbers that I have never seen before.  Wanna know how to turn your mom into a crying lunatic? Drop your sats to 15.

Today has been a little better.  We have her on a new sedative that she seems to be more comfortable with.  It has suppressed the hulk so far.  We started steroids today and the suctions seem to be more productive.  I guess we will know more with her x-ray tomorrow.  The goal is to get her off the ventilator as soon as we can since her Glenn physiology does not respond will with the positive pressures of the ventilator.  For now, she needs the support and the rest.  Poor kid has been through a lot and needs time to peacefully heal.

Of course there are other complications that come with the territory.  The combination of her response to surgery, going one day without diuretics and retaining IV fluid has caused her to be very swollen.  Everything in medicine seems to be a trade-off.  What fixes one thing, screws up something else.  We are trying to flush the fluids out of her with diuretics but she's still positive everyday, and of course low on potassium since the electrolyte balance is thrown off.   The second issue is that she has an line in her femoral artery for IV meds (I had a weepy rant in one of my posts about this line the last time it was placed because of the risks being blood clots...) well, this line has caused a blood clot.  The good news is that its small and not likely to break off.  She's getting shots of  (iforgotthenameofit) to help break down the clot and to keep it from growing much bigger.

Ugh- So that is where we are right now.  I will be sure to update once things get a little better. I know they will get better.  We always knew that it would be a rough first year.  I never expected it to be this rough.  We would really appreciate any and all prayers for Ali.  She is going through so much.  She such a sweet little girl and I love her so much. I cant wait until she can open her eyes again and feel good again. 
Thank you for reading,
Melissa

One Week

This first week has been absolutely amazing.  We are all enjoying Alessandra so much, she is such a delightful baby <3  Like all newborns her activities are limited to sleeping, feeding and pooping.  Her cries are so feminine and she is easy to console if she gets upset.  Bailey is such a proud big sister and jumps at the chance to be involved with everything, even changing diapers.  As for Mark, he is the most attentive father in the world.  I can’t even express how much I love him.  He has been strong and confident when I have been crazy and emotional.  He has been involved in every step of this journey and attends all doctor appointments with me.  I am so fortunate to have him as my husband.

Since being released from Phoenix Children’s Hospital we have taken Alessandra to two different doctor’s appointments.  On Tuesday she had her appointment with her pediatrician so that she could receive her HEP B shot and her second newborn screening test.  Her pediatrician says she is doing great, she has gained several ounces since birth weight which means we have this breast feeding thing figured out. 

The second appointment we had was with the cardiologist earlier this afternoon.  She endured the EKG and echocardiogram like a little champ, she was even awake for most of it.  Our cardiologist confirmed that she does not have any obstruction in her pulmonary veins, which is really really really great.  She has minor to medium stenosis in her pulmonary arteries, but that is a good thing given her anatomy.  If the arteries we not narrowed, that could risk too much blood flow to the lungs.  For now, it is looking like we are on track awaiting the Glenn procedure.  We are not sure when this will be, but it could be in the next few months.  Our goal now is to keep her in a “bubble” away from illnesses, help her to gain weight and continue with daily antibiotics.   

Here are some cute pictures that Mark took of our little baby.  I love being married to a photographer:)

Getting Close!

Getting close! I’m 37 weeks and little Alessandra is now a full term.  This is such a HUGE relief for me.  I went into labor prematurely when I was 7months pregnant with Bailey.  Fortunately, with the help of medicine and 2 agonizing months of bed rest… labor ceased and I was able to carry her to term.  Premature labor was a fear of mine this entire pregnancy but it is now one less thing to worry about.

I am dilated 1.5 centimeters and am carrying the baby super low. She’s almost ready!  My original due date was the 4^th of July, but it looks like I will be induced at 39 weeks, making my due date sometime in the final week of June.  At my appointment last week Alessandra was measuring at about 5.5 pounds and I’m hoping she will be over 7 pounds by the 39^th week.  This is my excuse for eating 9 meals a day plus ice cream.

So far everything is still going really well.  Alessandra’s heartbeat is strong and she is growing exactly as she should be.  She kicks and stretches constantly and now that she’s bigger those sharp movements can really hurt.  If we didn’t know about her cardiac issue, we wouldn’t have any indication that her health was compromised.  She is progressing exactly as she should.

I have my final appointment (as a pregnant lady) with the cardiologist tomorrow.  I’m praying that her heart will look the same if not better than last month.  The last echo showed that she did not have a significant amount of fluid around her heart, which is great news.  Too much fluid could indicate possible heart failure.  I’m also hoping we can get a clearer view of her pulmonary arteries to confirm that the blood flow is adequate.  I am crossing my fat, swollen fingers that this appointment goes well!!

~Melissa

Johnny Cage...Chun Li… Sonya Blade…M.Bison…

Few updates to add…. We had an appointment with our pediatric cardiologist on Tuesday and just to warn you, the following explains my (very) basic understanding of the heart.  I would hope that any heart experts would forgive and direct me if I am incorrect about the cardiovascular physiology.

After the echocardiogram, our doctor was able to confirm that our baby's pulmonary arteries have visible and adequate blood flow to the lungs.  This can mean a lot of different things but most importantly it means that our baby does not have pulmonary stenosis or an obstruction of her pulmonary valve.  This was really encouraging to learn about because it’s one less surgical procedure to endure.  However, what cannot be measured in utero is the amount of flow resistance from the single ventricle to the lungs.  If the resistance is too weak, then too much blood flow could oversaturate the lungs.  From what I have read, this is a common possibility with single ventricle babies. If there is too much volume in the lungs, and not enough volume carried out through the rest of the body the heart can overwork and the lungs can become congested. A flow resistance issue is a possibility to prepare for; however, it doesn’t mean that our baby will have a problem with it.  In fact, she may be born completely stable! If this is the case, we may even be able to take her home and fatten her up for a few months before surgery becomes necessary. 

This experience has been life altering.  Mark and I have had to learn so much about life and what ‘thinking positively’ means.  The uncertainty is the hardest part.  As much as I want to celebrate any shred of ‘good’ news, I’m also cautious to balance my emotions because I don’t want to grieve every bit of ‘bad’ news. Even though I may not be celebrating my pregnancy the way I planned, I’m still very appreciative for every bit of good that has come from this experience so far.  We have been blessed with a team of fantastic doctors to work with who have been not only thorough but also patient and understanding.  Aside from medical professionals, we also have amazing family, friends and new friends who have reached out and shown so much love and support. 

Mark and I are still deciding on our daughter’s name….we have some ideas and will hopefully decide soon.  I really-really like the idea of using a Mortal Kombat or Street Fighter name, but then I remember that I’m 29 and should be more mature than that.

~Melissa