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:)

Baby Steps

I’m huge……My stomach is a giant beach ball, I can’t see my feet and maternity clothes are so, so dorky.  I’ve started wearing what were originally designed to be dresses for normal-bodied girls as t-shirts for my misshapen body.  It’s okay though, looking like a dork is something I can handle.

We met with the Cardio Vascular Surgeon (Dr. John Nigro) last week at Phoenix Children’s Hospital.  He answered many of my questions, but was careful not to make any predictions or assumptions.  If our sweet baby is born with her heart as expected, or better than expected then the two operations she will need are the Glenn and Fontan procedures.  The Glenn operation will be around 2 months of age and will reconstruct her heart in a way that will improve circulation enough to sustain her until she is about 3-4 years of age.  That’s when she will need the Fontan operation which should help sustain her until early adulthood. 

There is so much about this that scares me because the ‘what-ifs?’ are endless.  ‘What if she doesn’t have a spleen? Will she recover okay from the operations?’ ‘What do her pulmonary veins look like? Are they obstructed?’ ‘What if her condition is painful for her?’ It’s easy to get caught up in an endless cycle of troubling thoughts but I try to remind myself to be stronger than that.  This might seem off topic, but do you remember the movie ‘What About Bob?’  Mark and I just watched this movie recently and Bill Murray plays a multi-phobic patient who worries about everything ranging from germs to having Turette’s syndrome. His psychiatrist gives him two solid pieces of advice: 1). take baby-steps and 2). take a vacation from his problems.  Maybe I’m going crazy myself because I’m trying to take the advice from a movie-shrink but the two principles ring true.  I can’t plan out the next 5 years of my life, but I can take issues as they come each day.  So far, my priority is maintaining my health and working on a birth plan.  This is something I can manage each day.  Also, I can’t focus on all the risks without getting depressed so instead I try to focus on all the possibilities.  Technology, medicine and surgical practices have advanced so much over the years; there is no telling what these humans will be able to do 10-20 years from now.  I’m afraid of losing my daughter, but I don’t have to worry about that because I know there are just as many opportunities as there are risks.  This baby doesn’t need a mom who is going to be troubled and scared, she needs a mom who is going to be punk-rock and proactive.

After meeting with the surgeon, we got a tour of Phoenix Children’s Hospital.  That place is really really nice.  Everything is clean and designed so creatively.  It feels more like Disneyland than it does a hospital, and I’m grateful for that.  From what we experienced, the staff was so happy and positive. I think that someone has to be pretty special to work there.

Yesterday, I had my OB appointment and received nothing but good news.  Our baby girl is 4.5 pounds already and is developing great.  Her fluid measures are all normal and her heart rate is perfect.  My health is pretty good also.  My blood pressure is fine, my (ummm…what is another word for urine that sounds less gross?)  tests are reporting that all my organs are functioning as they should and that I’m well hydrated.  Even though everything is going great pregnancy-wise, my doctor still recommends that I begin the non-stress tests (NST) now that I’m 33 weeks.  This means that I have to go to the office twice a week (ugh) so that the baby’s heart rate and my contractions can be measured for about 20 to 30 minutes.  It’s difficult because I’m still working and trying to accomplish work and doctor appointments will be challenging, but it’s worth it to know that we are taking the necessary precautions to take care of this baby.

(We are almost decided on a name, I’ll let everybody know soon!!)

Melissa