The Big Day

Our big day arrived!  We woke up at 4:15am in order to arrive at the hospital by 6:15am.  However, we did not count on the snow squall that was occurring as we pulled out of our driveway.  Thankfully, we were both safe and on time…but we were very grateful for our early surgery time, as the roads were not nearly as congested as I'm sure they were an hour later.



My sister's husband, a NICU nurse, accompanied us to the hospital. The nurses checked Julia for about an hour, and the anesthesiologist and surgeon both checked in with us.  Dr. Galantowicz (surgeon) kindly said to our baby, "Julia, we have a date!"  Julia hadn't eaten since 9pm the night before, but she was still so sweet and happy.  She is just the sweetest little baby.  The nurses told us she had "won" the cutest baby award of the morning for being so sweet and happy, and they gave her a new toy.  She was able to have any comfort objects we wanted her to have, so she had her blanket, a stuffed owl, and her pacifier with her as went she went back in to the operating room.



I felt very energetic and calm right up until I handed Julia to the nurse in the operating room at.  I started to cry, and Julia, who had been so happy up until that time, immediately started to cry upon seeing my tears.  Such a sensitive little girl.  We had seen this several times with Natalie, where Natalie would cry loudly about something and Julia would then cry, but this was the first time that I realized she was paying attention to my emotions.  I may have tensed and shed tears, but I was quiet - and still, my sensitive little daughter reacted to how I was feeling.  So very precious.

Natalie and Aunt Sarah playing in the snow at home

At about 2:30pm, Dr. Galantowicz came out to tell us that the surgery went well.  He said that the echocardiogram showed that the repair was perfect: no leakage or residual holes!  The surgery took a bit longer than anticipated because the surgery team, despite their high-tech tools for placing IVs, had a very difficult time locating her veins, and it took them quite a bit longer to get her ready for surgery than anticipated.  The poor thing has A LOT of pinpricks on her arms and legs.  Dr. G did say that her heartbeat was a little funky, so that is something that will be monitored closely in order to determine if she might need a pacemaker.

(12/13/13 update: photos removed as seeing them is too painful for us.)

Getting to see her in the Cardiothoracic ICU was not nearly as traumatic as I expected.  She looked so much better than we had anticipated, and her incision is only about 1.5" long and perfect.  I expect more bruising and swelling to occur later, but for now she just looks like she has a ton of wires coming in and out of her.  One of the best things was how much she recognized us right away; she opened her eyes more and more and paid close attention to where mom and dad were.  We didn't expect that, either.

Tonight we are monitoring several things closely, so here are something things you can pray for.
1.  The heart block: Julia's heart isn't beating on its own yet; it is being stimulated by an external pacemaker.  We want it to start beating on its own within a week.  If that doesn't happen, then they will probably insert a pacemaker, which equals at least another week in the ICU.  This is a common thing, and the surgeon was optimistic that it will resolve on its own.
2.  Julia's breathing: she's still adjusting to her new breathing status.  Before, her lungs were used to a very different volume/pressure of blood coming through.  Then she had to endure a ventilator and a bypass machine, and coming out of sedation doesn't help.  So she has a nasal cannula in that gives off a fairly high pressure of air in to her nose so that she can breathe correctly.  Again, this is pretty common.
3.  Julia's chest tube: this tube empties blood that has accumulated around her heart.  Her chest tube has been clearing more blood than they would like, so they are giving her some blood components in order to try and stabilize the wound and bleeding.

Mental Preparation

Well, surgery is on as scheduled: Dec. 10, 2013, at 7:30am.  I have been praying and worrying so much about whether it will happen.  Now we have to process, in a very short time, what it will be like to have my sweet daughter actually undergo such an invasive procedure.  I do feel as though the Lord has continued to remind me that most of the suffering will be Taylor's and mine, and not hers - she will be blissfully unaware that it ever happened.



Waiting for the call that surgery was on was pretty stressful.  But in some ways, we were more at peace this time around.  Taylor and I both had a feeling ahead of time that Julia was still going to technically have a cold, but that the doctors would decide to proceed with surgery anyway.  Sure enough, Julia tested positive for rhinovirus, but based on last month's tests, they were confident that the virus is going away.  They will do another physical examination of her on Tuesday before surgery to make sure she still looks as healthy as she did on Friday.



I had planned to write so many posts about feelings and reflections during this time, and I hope that I will write them.  But just as quickly as I had insight and encouragement from the Lord about this time, I would often feel plunged in to despair.  I guess one message I have had on my heart is this: I am not strong.  At all.  So many people have said such kind things about how wonderful we are, but we aren't.  We're human, and we're getting through this time because the Lord sustains us, because our friends are superhumanly kind, and because we have to.  Right?  We all think, "I could never do that," when we see something difficult that someone else is going through.  I always thought that specifically about having children - that I could never watch my children suffer.  But, in February 2013, I learned at the 18 week ultrasound that yes, suffering would be something we would endure.  And we endure and persevere because we have to, we want to, and the Lord sustains us.

Please pray with us as we anxiously await the surgery, and as we entrust our precious Julia to the surgeons.  

Thankful Hearts

My heart is feeling so full of gratefulness and love.  The Lord has given us so much through so many of you.  Our life is rich and beautiful, and so much of it is due to you.

We have lived in three different states over the last two years, and in each place, we have been so blessed by love from family and friends.  I wish I could list each and every blessing that was given to us from you.  From your words, to your presence, to tangible gifts and cards…I just can't say thank you enough to each person that has loved us so well.  And I'm afraid that if I did list out the people that come to mind, I would forget some very important encouragers.  So, just know that to each of you, our hearts overflow.  Thank you.

This weekend, my parents spent one night with us on their way to my grandfather's 80th birthday celebration and my brother and sister-in-law's baby shower.  We were so sad to miss these family events, as Julia's health prevents us from traveling, but our hearts were with them.

To encourage us, my sister and brother-in-law spent the weekend with us.  Natalie LOVES these two, so their presence was a double blessing.  And because John is a NICU nurse, they are also world-class babysitters for Julia, enabling Taylor and I to go out on a date.

Thanksgiving will be a quiet holiday for us this year.  So, we decided to have Thanksgiving dinner this weekend with John and Sarah!  You all know how I love food, so here was our menu:

Rotisserie chicken from the store (suuuch a good choice compared to making it ourselves this year!)
Mashed potatoes and gravy
Sweet potato casserole (try this and you'll never go back to marshmallows: http://www.epicurious.com/recipes/food/views/Sweet-Potato-Pudding-with-Pecan-and-Gingersnap-Topping-361832
Green beans
Cranberry sauce
Applesauce
Aunt Gussie's rolls (family recipe!)
Pecan Pie Bars (because I've ruined so many pie crusts that I don't even try any more)

I think we should just freeze this stuff to eat on the real Turkey Day!

A Reason for Everything

Well, we've got our heads up again.  I'm an Allen, so I have this incurable optimism.  It is a good thing, but I'm aware that it can be super annoying to others.  :)    

We are so grateful for everyone's encouragement!  We have needed it.  Along with so many positive thoughts, prayers, and truths that you all have given us, here are two very concrete reasons why it is AWESOME that Julia did not get her surgery yet:

1.  One of my speech-language pathology mentors, with whom I did my pediatric inpatient rotation, reached out to me to tell me how good it was that the surgeon delayed our surgery.  She cited a recent pediatric patient who went in for a relatively straightforward surgical procedure.  Unfortunately, the fact that the family had been passing around a virus was not disclosed at the time of surgery, and the child was on a ventilator for two weeks.  That is definitely not an outcome we want.

2.  When we received the news that Julia had tested positive for rhinovirus, the medical team also informed us that about half the children that they see also test positive for this right now.  A common cold?  We thought that should be no big deal.  Well, we just heard from a local friend whose 11-month old, typical daughter was just released from the children's hospital after being in the ICU for complications related to... rhinovirus.

You know, it's probably good that we're hunkering down in this season, anyway.  When Natalie was a newborn in Tucson, we never had to deal with a real winter, so cold/flu season was quite different there.  I think we are learning in the extreme what it means to have babies on the east coast/midwest!  Not a bad thing to keep everyone well.

Natalie enjoying part of a care package that the sender probably had no idea would be as fun as it was.

Surgery Postponed

You can tell I'm an iPhone newbie because my finger is always over the camera.

We received a phone call on Saturday evening saying that Julia had tested positive for rhinovirus, a common cold.  On Sunday, the surgeon confirmed that he was postponing the surgery until December 10.  This was shattering, truly.  I cannot believe how many hurdles we have faced this year.  Especially after they examined her on Friday and found her in perfect health, with no symptoms of a cold.  They said that because the risk of pneumonia and difficulty extubating is increased so much in kids with viruses, and in kids with DS, that postponement is essential.

This is so hard for many reasons.  We have worked hard not to expose ourselves to any viruses.  I know, in fact, exactly where we got it: at the pediatrician's office, where we waited for less than 5 minutes in a waiting room full of sick people, for Natalie to get her flu shot in order to protect Julia.  The next day, Natalie was sick.  Oh, the irony.



I had no idea that postponement would be so long.  When we heard it would be 6 weeks until she could have the surgery, I wanted to crawl in to a hole.  Because in fact, that is what we will be doing until then.  And it is essentially what we have done for the last few weeks.  We haven't had any children at our house in months, and our only interactions with other kids have been outdoors.  We don't go to church and we don't put Natalie in the nursery.  Julia is with me nearly 100% of the time.  I continue to pump for her to gain antibodies.  We didn't do Halloween.


Well, we dressed up.



But, with lots of encouragement from so many of you, I've got my head up again.  The extended quarantine - especially during the Christmas season - is what I am least looking forward to.  I feel bad for Natalie, being stuck at home with mom.  But, we will get through it.  

How I Feel About Surgery Being Postponed (PG Version)

AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHH!!!

Also, there was a broccoli incident.  :)  No, I have no idea who threw it against the wall...

Pre-Admission Testing

We went to Nationwide Children's Hospital today for "Pre-Admission Testing."  It wasn't too bad; just long.  We left the house at 8:30am and returned at 2pm.

High point: Meeting Dr. Galantowicz.  What an incredibly kind man.  Very gentle and sweet with Julia.  Very peaceful and down-to-earth.  Some of you know that we had a "hilarious" meeting with another surgeon in Raleigh, just to learn a little more about the surgery.  Whereas that individual treated us as if we were scum that some how came to inhabit his office, Dr. Galantowicz was kind, attentive, and treated our daughter with dignity.

This is such a happy hospital.

Low point: Blood draws.  Julia is such a trooper during all of these appointments, and she is so adorable and sweet despite some of the things they put her through.  For instance, the blood pressure cuff left significant bruises on her leg today, yet she didn't whimper a bit.  However, when she got her blood taken, she screamed.  This is so unusual for her, so you know it had to hurt.  When we got blood drawn about a month ago, she didn't even bat an eyelash; I wish I knew what was different today.  Her blood was pretty thick today.  The one good vial will go to testing her thyroid level, as her TSH level a month ago was sky-high and led to her being put on Synthroid.  The other vial that they got wasn't usable because it had a clot in it.  Thankfully, the doctors decided she didn't need to have all the other blood drawn that had been ordered because they saw how much pain she was in.  We'll know Monday if her TSH level has come down sufficiently to allow for surgery on Wednesday.

Beautiful spaces.

Everything in between:
We met a lot of wonderful people today who may care for Julia when she is inpatient.  They swabbed her nose to check for any viruses; we'll know on Monday if she is clear and will be able to proceed with surgery on Wednesday.  They did a complete physical on her and got her weight (4.65 kilos [10.25lbs]!  Dr. G congratulated me on "really fattening her up!").  A nurse practitioner went through the surgical process in detail with us, which was so helpful.  I'll spare you the details, but we talked for an hour and half about this.  Some interesting facts: Julia's heart will be stopped while her blood pumps outside her body during during surgery through the heart-lung machine.  Tiny stitches will be made to attach 2 Gore-Tex patches (yep, same material as your rain jacket) to her heart wall to separate right from left side.  Her one common heart valve will be gently separated in to two (the mitral and tricuspid valves).  Her breastbone will be separated so they can repair her heart, but it should repair itself quite quickly.  They use dissolvable stitches to repair bone!!

How Julia feels after such a big day!