Surgery Day

Yesterday was an extremely emotional day for Mike and I.  I literally spent 15 hours with my little girl and Mike spent a good 8 hours (he spent the other part of the day with Zander).  I was petrified of today's surgery and wanted to soak in as much quality time I could with Zoe.  She was extremely cranky due to her not having been able to eat at all.  She is hooked up to IV's which she is getting nutrients, just not food. Zander spent the night at Nonni and Papa's since her surgery got bumped up to 9:00 a.m.

Glenda, one of the Chaplin's came to check on us to see how we were doing yesterday. She gave us and Zoe a blessing yesterday since all the Catholic priests were unable to come yesterday afternoon.  We were pleasantly surprised that Father Peter came last night from one of the nearby parishes to anoint Zoe.  I truly believe with the power of prayer from our friends, family, people's congregations, Zoe has beat alot of odds.  She's one special little girl and we are so blessed.

While I was in the shower this morning, one of Zoe's nurses called.  Mike and my heart dropped when we see Children's Hospital on the caller id.  She was informing us to get in soon as they will be taking her no later than 9 a.m.  I don't think Mike has ever driven as fast as he did on LSD.  I think we got to the hospital in 10 minutes.  We were able to hold her for a bit before shift change at 7 a.m.  One of the pediatric surgeons came up to tell us she was bumped back to 12:30.  While we went to go indulge in Starbucks and bring back the nurses coffee, we were getting extremely nervous.  Ironically, we weren't scared of the surgery itself, but the anesthesia part as well as having a breathing tube.  We soaked as much family time as we could.  10:00 a.m. the nurse called and Zoe was the next surgery in line.

All I can say is no one can really understand what Mike and I are going through unless you've had a child in the NICU (not to mention all the diagnoses we've had).  I can't even begin to tell you our emotional state of mind when we were walking down the hallway with the surgeons to get her prepared for surgery.  A 5 day old baby going to go under is entirely too scary for any mother and father to go through.  I couldn't stop crying, then looking over to Mike kissing our baby girl good bye until after surgery just would break anyone's heart.  All I kept telling the surgeon team and anesthesiologists was to take care of my baby girl.  We hugged eachother and said everything is going to be ok. We headed to the cafeteria hand in hand in to attempt to eat, all of which we ended up throwing out our lunch.  We waited impatiently in the waiting room for the telephone calls from the nurse throughout the surgery.  Then before we knew it, it was 1:45 and we got the phone call she was done.   Her breathing tube was removed after surgery (which is a good thing).  She did not have malrotated intestines, just had a duodenal atresia, basically a blockage in her small intestines.  (they cut the blockage out, then sewed the two ends together).  She did amazing.  Our little girl is such a fighter.  We gave Dr. Madonna (our surgeon) a big hug and said thank you and rushed to be next to our little girl's bedside.  We can't hold her until late tomorrow or possibly on Sunday due to all the tubing. :(

She has yet to eat since birth. She's hooked up to an iv which is giving her all her nutrition.  But you can hear her little tummy growl, she's feisty since she hasn't eaten, and clings onto her paci for comfort.  She's down weight since she hasn't had any milk (she's truly a peanut, seems so fragile to hold her).  She probably will not even begin to try to have any milk for another week.  They have to wait until all her stomach bile, left over amniotic fluid, etc. releases from her obstruction.  They plan on starting her on milk this week, either by bottle (they have to see how she does) or it will be through her iv.  Her NICU stay is about 6 weeks or more, and it truly depends on how well she does with eating.

With pumping every 2.5-3 hours, I'm not really sleeping.  Its extremely hard to get up with that routine when you have a toddler who sleeps through the night, and now have a baby who isn't crying at home for her mommy to feed her.  I will admit I hit the snooze button alot, but I'm really trying to breastfeed/pump this time around.  With Zander, unfortunately, I never could.  Just wasn't in my cards for him.  And with Zoe having multiple spleens and other stuff wrong with her, I just want to make sure she is as healthy as she can get in the hospital.

Glenda, one of the Chaplin's came to check on us to see how we were doing.  She gave us and Zoe a blessing yesterday with holy water and with St. Padre Pio's oil since all the Catholic priests were unable to come yesterday afternoon.  We were pleasantly surprised that Father Peter came last night from one of the parishes nearby the hospital to anoint Zoe.  I truly believe with the power of prayer from our friends, family, people's congregations, Zoe has beat alot of odds.  We hung a rosary on her bedside and prayed together for a safe outcome.  After the blessing Zoe seemed very calm.  It was truly amazing to see.  This meant alot to us to have her blessed as well as our parents. Zoe will have a formal baptism sometime in the near future, we just wanted God to watch over her during this big surgery.

I feel like a horrible mother to Zander.  This little boy is having such a hard time not seeing his mommy and daddy like he normally is (god bless my in laws).  Tonight Nonni and Papa dropped him off and he wanted nothing to do with Mike or I.  Literally screamed and ran around the house and waited by the front door pounding on the glass.  Clearly he's upset with us and I can only imagine he feels like we've abandoned him.  It took 45 minutes for him to not scream, only by coaxing him to draw pictures with me.  Its 9:35 and he doesn't want to sleep.  But I don't care.  He needs this time to be with me.  I have one child in the NICU who needs me and one child at home that needs me.   Its so hard.

Oh and I broke the ice with the other two moms in the room.  Unfortunately one of the boys (Carter) got transferred yesterday.  Zoe got them each hats for their NICU stay for Valentine's Day.  We met little Xavier's parents, he's a 28 weeker and one of the cutest little boys ever.  Its nice to know we have other parents who know what we're going through to actually have some conversation with while we're there. The nurses, doctors and staff have all been amazing.  Its just entirely too sad to see how many families are visiting the NICU every day for different reasons.

Thank you all so much for all the wonderful support.  I do believe since we had so many people praying, her outcome has become better.  I know its still a bit confusing on what is exactly wrong with her.  After today, long story short.  She has a vein that isn't connected to the right heart chamber, its basically rerouted (Interrupted IVC).  However she's getting all the proper blood flow and isn't causing her to have any heart problems.  She has an extra vessel in the Right Ventricle (Double SVC).  Not harming her at all.  She has an ASD hole (hole located in between the upper two chambers;  http://kidshealth.org/parent/medical/heart/asd.html).  She has a VSD hole (hole located in between the bottom two chambers; http://kidshealth.org/teen/diseases_conditions/heart/vsd.html  ).  She has multiple spleens (polysplenia).  And she has duodenal atresia (http://www.ncbi.nlm.nih.gov/pubmedhealth/PMH0002117/).  However her intestional problem should be rectified after today.  There is a chance she could have bowl obstructions again later in life, which we are aware of the symptoms of that.  Overall, she has Heterotaxy Syndrome.  What she has is entirely too rare (one in a milion) and not much research has been done.  http://heterotaxysyndrome.com/what-is-heterotaxy-syndrome/.  She has no chromosonal defects and as far as we know no genetic defects.

Zoe will have to be watched closely over the next year to see if the holes close or they will have to operate on her.  Other than that, as of now, she'll be able to do everything normal like any other little girl.  Our little girl just has a great story to tell one day, and luckily her mommy documents everything in her and her brother's life.  Not to mention she has all the wonderful momentos and cards that you all have sent her all put away safely.

I'll leave you with some pictures of Zander and Zoe from this week....we're hoping to go back to normalcy really soon.... now we just hope and pray Zoe recovers well and is on the fast track to being home with her brother.  We will update our blog with her recovery process and growth as well.  We will have professional photos done while she's in the NICU as well, this is apart of her story and I'm happy to share it with everyone.  People need to be aware of Congenital Heart Defects and realize that this is the number one cause of infants death.  And any of Zoe's problems could happen to you or someone that is close to you.  Mike and I have become so knowledgeable in such a short amount of time.  We plan on being involved with the CHD organization and help raise money and awareness, so more research is done.  And I only hope my story reaches out to someone else who I can maybe help in their journey, because ours has just begun.  Let me tell you, its not easy, and it hasn't been easy.  All I know is, its brought Mike and I closer than ever before, and we truly hold on to Zander a little bit harder each night before he goes to sleep.  We're blessed to have one perfect son and one perfect daughter, no matter what she was diagnosed with.

Sorry if alot of this is repetitive, I'm entirely too tired and on no sleep with puffy eyes.  I'm amazed I even got to blog tonight!