Presence

A few weeks before Julia's death.

It has been over two weeks since Julia died.  That seems impossible.  Her little light was such a bright beacon of hope, and our world is dim without her.  We are so honored to have been her parents, and we are increasingly convinced of the purpose that her life has in Christ's kingdom, as so many have shared their sense of this.  We also want you to know: Please, do not be afraid of people with Down Syndrome.  If the Lord blesses us with more children, we would not fear a special needs diagnosis.  We would feel richly blessed to have another child just like Julia.

So many of you have asked what you can do for us, and how you can help.  I think I speak for many grieving mothers when I say that simply your presence is a help.  When you talk about my beautiful child, that is a help.  When you write a quick note on Facebook, that is a help.  An encouraging email is a help.  I have been asked with some trepidation by close friends if I've had any people say well-meaning but unkind things to us, and I have to say - no.  Everyone, literally each person, has been unbelievably kind and thoughtful in their words to us, and we thank you for that.  Simply acknowledging that there are no words in the face of unbearable pain: that legitimizes our struggle and helps us to feel understood.  The only time that we've felt hurt is when people don't acknowledge our pain and ignore the grief that we feel.

Come spend time with us.  Sit us with us in silence.  Invite yourself over.  Invite us out.  Even if we cannot accept your invitation, the fact that you want to see us, despite us being so very weary and in grief, means everything to us.

Reflection

I read this article on the Her.meneutics blog the day before Julia was born.  (Julia's birthday was July 13, and this article was posted on the 12th.)  It ponders why God allows and if he causes children to have birth defects.  I have no desire to get in to a theology debate with those who may want to do so, but this article very closely mirrors Taylor and my thoughts about why Julia was born with complications.

http://www.christianitytoday.com/women/2013/july/are-birth-defects-really-part-of-gods-plan.html?paging=off

Grief

Our home smells of lilies.  We are enveloped by beauty honoring our daughter.  We have felt so surrounded by love from family and friends.  Things are quieting down, and we are feeling okay with that. 

Grief is an incomprehensible state to those who have not experienced it in its fullness.  Every cell of my body aches.  Any tiny movement I make is painful.  Every sound I hear is hard to process.  Each exclamation point I see is like a small needle, relentlessly pricking me with reminders of happiness that are not my own.  Movements are slow.  I tuck myself in fetal position, instinctively knowing that this is the only way to heal.  I whimper and sob, primally following in the footsteps of mothers before me who have lost children.  I ask questions that make sense only on an emotional level, asking often, silently and aloud, “Where is she?  Where is my baby?”  I allow myself to hurt deeply, to have others provide for my every need, to not take care of my physical needs in order to tend to the needs of grief. 

I have removed very few of Julia’s things so far.  Her burp cloths still sit in the family room, and her diapers are in their usual place.  The breast pump continues to sit by my bedside as I slowly wean the hated machine.  Julia’s bottle rack was moved only to make room for the beautiful flower arrangements that now occupy that place, and her medicines thrown away to make space for food that others generously provided.  We have not fully unpacked our hospital bags, and her car seat sits waiting for her in our room.  Looking at the clothes that I wore on the night that she died brings visceral pain. 

And yet, the needs of our two-year-old are very real and bring us joy as well as reminders of the importance of continuing on.  Many have asked us how she is.  Precious Natalie accompanied my mother and sister to the hospital in the middle of the night as they journeyed to say good-bye to Julia.  She played in a playroom as we rotated supervising her while others kissed Julia a final good night.   Shakily, Taylor and I told her that the doctors couldn’t fix Julia’s booboo (we had told her previously that Julia had a booboo on her heart), and that we were very sad because that meant that Julia wasn’t going to live with us any more.  But, we said, we were also so happy because Julia is now living with Jesus.  Natalie processed this, and then wanted to play with the next toy.  She is a deeply sensitive toddler and doesn’t miss a thing, so I’m sure we will revisit this conversation in the future, especially as our routine returns to normal and Julia is not part of it.  But for now, Natalie has been so distracted by all of her visitors that we have only mentioned Julia a few times.   One morning she awoke and wanted to know where Julia was.  Another day she said she wanted to turn on Julia’s music box. 

Natalie has been saying something that she never said before. – “I’m afraid.  I afraid I gonna get hurt.”  And I think this means she is afraid she will get a booboo that will make her not live with mommy and daddy any more.  So we have been constantly reassuring her that she does not have to be afraid, and that she will always be with mommy and daddy. 

From Natalie, too, come our least expected holy moments.  A few days ago she was examining a flower arrangement, and I handed her a rosebud that had broken off.  She placed it back in the arrangement and identified it as the “baby.”  She proceeded to point out the mommy, the daddy, and then asked, “Where’s Natalie?”  We found a Natalie flower and joined it closely with mommy, daddy, and baby.

There was also the moment today when she began singing the chorus to Mumford and Sons’ song, “I Will Wait for You.”  It brought all of us to tears.  And then there was the beautiful moment at Julia’s service in which Natalie, who had been running around the foyer, arrived at the icon of Jesus’s death and said, “I running to the cross!”  We all are, dear girl.

Julia's Life

This is the slideshow of Julia's life from her memorial service.

Daddy's Goodbye

This was Taylor's goodbye to Julia at her memorial service on Saturday.  I am working on filling in more of the details of her miraculous story and will share them as soon as I can.

For our sweet baby Julia Christine Shipman, July 13, 2013 – December 11, 2013.

Dear friends, this is a sacred moment.  Thank you for sharing in our life and in the life of our sweet Julia.

Looking out at all of you here, I am reminded of another sacred moment: the day Christine and I made our vows to each other seven and a half years ago in the presence of many witnesses – and many of you here now were there with us then.

Do you remember that day?  If you were there, you may remember that we stood up front with our parents, who read a prayer for us from the Book of Common Prayer.  One of the things they asked the Lord was this: “Give them wisdom and devotion in the ordering of their common life, that each may be to the other a strength in need, a counselor in perplexity, a comfort in sorrow, and a companion in joy.” 

A strength, a counselor, a comfort, a companion.  Christine, I pray that the Lord would give me the grace to be all of those things to you as we pick up the pieces of our hearts.

And dear friends, we could not have imagined the degree to which we would need each of you to serve these roles in our lives as we have this year.  Part of our gathering here today is to acknowledge God’s faithfulness to us in a time of unbearable pain, and a very important part of that faithfulness is expressed right here in this room.  Simply by your presence here. 

It is important to us, in turn, that you know how grateful we are for the ways in which you have been the means of God’s grace to us in such a time as this.  We have needed you, and will continue to need you.

I’m sure that you understand that it is not easy for me to be up here speaking about Julia when losing her is still so fresh, so raw for us… when every fiber of our being cries “No!  I do not want to be here.  I want to have this week back, and do whatever it takes to keep our precious baby.”  I did not want to speak here this morning; I thought it would be too painful.

And it is painful.  But I concluded yesterday that I would regret it if I did not at least make the attempt to tell you about Julia… to at least try to capture the essence of who she was to us.

As her parents, Christine and I are sad that although many were touched by Julia, that we were the only ones with the privilege of experiencing the fullness of her beautiful spirit day-to-day.  And as Jesus reminds us, a light in a dark room ought not to be kept hidden.  Its light is life-giving, and it must be shared.  And so I would like to share with you about this little light named Julia.

Some of you may not be ready to hear some of the things I will share today.  And that’s OK.  But I must share my extraordinary experience with this little girl.

To understand Julia, we must first be reminded of the nature of God, her Creator.  The Bible is God’s bright message of His salvation to a dark world, and many stories from His Word could suffice.  But in trying to capture the essence of my experience with Julia, I am particularly struck by the story of Elijah seeking refuge and direction from the Lord when his life was in grave danger.  From 1 Kings 19,

“And God said, ‘Go out and stand on the mount before the Lord.’  And behold, the Lord passed by, and a great and strong wind tore the mountains and broke in pieces the rocks before the Lord, but the Lord was not in the wind.  And after the wind an earthquake, but the Lord was not in the earthquake.  And after the earthquake a fire, but the Lord was not in the fire.  And after the fire the sound of a gentle whisper…”

Dear friends, this is as close as I can come to describing Julia’s life.  Julia was a gentle whisper of God—a soul closer to the veil between this life and the next than I have ever known—quiet, humble, and like other babies in many ways, yet from the beginning, somehow in a special way closer to the raw, unfathomable power of the creating God of the universe than you or I.

She was a spiritual being in a sense that is difficult to describe.  We know from God’s Word that each one of us is a spiritual being—that we are conceived as “souls with bodies.”  But it was even more than that with Julia.  I wish I had time to relate all the stories that made this so… like the magical moment when she picked her name at 18 weeks gestation; or the time when a young girl with Down syndrome ran to pregnant Christine to emphatically greet Julia while she was still in the womb; or when we stood in an airport security line in February with an older couple with a grown son with Down syndrome, and both instinctively knew at that moment that Julia would be diagnosed Down syndrome (which she was, in utero, the following week); or even the startling vision I had the evening before her death, of Julia’s risen spirit, grown and beautiful, standing on the staircase, pleased to see me as I arrived home from work.

I cannot express enough that it was just different with Julia—her soul was more present, more accessible, more immediate.  Those that had the privilege of meeting Julia and holding her will know what I mean when I say that her eyes sparkled with eternal joy, that the deepness of her gaze held something wondrous and mysterious that transcended words or heart defects or genetic anomalies.  Julia’s beautiful, wonderful, sparkly gaze touched me to the core of my soul, deep calling to deep, and convinced me more than anything before in this life that God loves me.  I cannot describe to you the gift that this child was to my spiritual journey: a cairn marking the way, a light in the dark, urging me to live a life worthy of that which God, in his mercy, has made me to be.

Julia was the sweetest baby.  We were amazed at her incredible patience.  She rarely cried when she wanted to eat, even when she was overdue and we were slow to get her what she needed.  Any time we scooped her up, her face would light up and she would beam ear to ear as we lifted her out of her bouncer and cuddled her close.  For Julia, her desire to be cuddled superseded any other need.

And yet, from the moment we learned of Julia—and this may sound strange to many of you—we also knew with more conviction than we cared to acknowledge that we would not be able to keep her.  Christine particularly had the sense early on that our time with Julia would be brief—so much so that she felt the need to record this sense in her journal entry for April 21^st of this year, three months before we would get to meet Julia.  I relate this and other brief anecdotes only to point to the nature of Julia’s existence with us.  This world was not her home, and the Lord made that clear to us in many ways.  But he also made it clear in all these incredible circumstances that we were chosen for her and her for us.

As for Julia’s choices, it is not lost on us that the name she chose for herself, Julia Christine, literally means “young follower of Christ.”  And it is also not lost on us that Julia went to be with Him at a time when we pause to remember His coming to the Earth He created as a baby, and wait in eager expectation for the risen Lord Jesus to return and make all things new.  With all of my being, I believe that she was His from the beginning, and this world was truly not her home. 

Come, Lord Jesus. 

Amen.

24 Hours

Oh, how much has changed in one short day.  We have lost our dear girl, and it is impossible to plumb the depths of our sadness.

At 11pm on Tuesday night, Julia was doing beautifully.  By 1:45am, the medical team had decided that it was time to stop trying to revive Julia.  What happened in the meantime is hard to describe.  She began to look pale, and the nurse called several colleagues in, one at a time, until the room was full.  The attending doctor could not find a pulse, and suddenly we were witnessing an excruciating scene involving the medical team doing chest compressions on our daughter (whose chest was already wounded from surgery) for over an hour.  After she had been intubated, they worked on getting her heart to pump manually.  Our surgeon came in at midnight to take over her care.  What a privilege to have a world-renowned surgeon caring for our daughter in the middle of the night.

At 1:45am, Dr. Galantowicz came over to us and said, "I can't do this any more.  It's not right."  We had known this intuitively much earlier, so we agreed immediately.  Dr. Galantowicz buried his head in his hands while holding ours, and said, "This shouldn't have happened.  This has never happened like this before.  This is wrong."  The team really wasn't sure how Julia's condition had changed so quickly.  He later said to us, "Julia had bad mojo all day.  Her case is evidence that there are forces greater than us at work."

At this point, the team's best hypothesis is that the blood pressure in her lungs got too high and caused her heart to shut down.  Our doctors will go over every tiny detail of what happened last night, and then they will look at the autopsy results.  Based on this, they will give us their best guess of what happened, probably some time after Christmas.

The funeral service for Julia will be on Saturday, December 14, at 10am.
Heritage Christian Church

7413 Maxtown Rd, Westerville, OH 43082

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!

Getting to Know Julia

Julia is our sweet 15-week-old daughter.  She loves to smile and gurgle at mommy and daddy, and she has a newfound fascination with "The Very Hungry Caterpillar" stuffed animal.  She is sweet and calm, and she rarely cries in a manner typical of a 4-month-old.  She does use increasingly loud vocalizations to get our attention, and we are loving the way that she is communicating with us.  She has just begun occupational therapy and is working on skills like holding her head up and feeding.



Julia also has Down Syndrome (DS).  She has a heart defect that is common for children with DS, called a complete Atrioventricular Septal Defect (AVSD).  Roughly 20% of children with DS have this type of defect.  When Julia's body was forming, her heart did not form correctly.  Rather than having 4 separate chambers in her heart, Julia has essentially one large chamber.  The walls that are supposed to separate atria and ventricles are incomplete, and instead of two valves regulating blood flow between atria and ventricles, she has only one.


Normal Heart

Julia's VSD (the ventricular, or lower, part of the defect) has been described as "massive."  Her heart is ever so slightly unbalanced so that her left side is a bit stronger than her right.  All other components of her heart (arteries, veins, structures) are in perfect condition...and we should know, because this girl has already had lots of tests and imaging done to determine what her surgical needs are!

 

 Complete AVSD

This heart defect impacts children quite significantly before the repair.  Instead of the oxygenated and deooxygenated blood flowing methodically through the heart and out in to the body, it mixes together because of the lack of walls and appropriate valves.  So, Julia's lungs get quite a bit more blood flowing to them than she should, making it hard for her to breathe correctly.  To compensate for this, Julia has been on Lasix (a diuretic) since she was 2 weeks old, and this has helped her quite a bit.


Repaired AVSD

Problems Julia has had resulting (at least in part) from this heart defect included difficulty feeding, difficulty rousing, and weakness.  The first month of Julia's life was very, very hard, because feeding her was so challenging.  She appeared to be suffering, and she probably was.  She still struggles with feeding in some ways, but she is definitely getting enough calories, though she is only 10lbs.  What many of the other "heart moms" tell me is that these children are like different babies once they have this heart surgery.  Suddenly, all those calories that were sustaining a failing heart are now able to be used for more fun activities, such as movement, interaction, and getting nice and fat!  


The early days...in the NICU

Nationwide Children's Hospital, in Columbus, OH, has the #5 pediatric cardiology program in the nation.  Julia's surgeon, Dr. Mark Galantowicz (google him!), is a pioneer in many different types of pediatric heart procedures, including "bloodless" heart surgeries, where no blood transfusions are required.  He flies all over the world giving talks and performing procedures on children who greatly need them.  We feel incredibly blessed that all we had to do to get this surgeon to operate on our daughter was...ask.  Just ask.  Our cardiologist assured us, "This surgery is the bread and butter of pediatric cardiothoracic surgeries."  In other words, it's very common and straightforward, and most of the time, outcomes are great.


Simply the sweetest (15 weeks old)

There are several possible complications, but most of these are pretty unlikely.  She could require more surgeries if the repair doesn't go well and she still has a lot of leakage from her heart.  This isn't terribly likely for Julia, as she has very minimal leakage right now.  She could also require a pacemaker if the electrical rhythm of her heart is disrupted during the surgery.  The greatest risk for Julia is actually something that would be managed with medication.  Because she is doing so well right now, we know that her body has compensated for the defect by increasing the lung-artery pressure.  In fact, her heart defect is so large and her lung-artery pressure is so high that she doesn't have an audible murmur - even the cardiologist can't hear it.  This is good right now, but when the defect is repaired, she will likely have to be on medications to help her body get back to normal.

She will be on several medications for about a year, and eventually we will only see the cardiologist once annually.

Julia's surgery is scheduled for Wednesday, November 6.  We will likely be in the hospital for about a week as her body recovers.  These kids recover amazingly quickly, though weeks 2-3 at home are the most crucial in terms of her risk of infection.  Because of this, we will likely be quarantined at home for about 4 weeks to avoid infection.

Why am I doing this blog?

I decided to publish this blog for three reasons:

1.  To give people an easily accessible means of knowing how to pray for us.

2.  Because I want to have some kind of memoir of this wild time.

3.  I benefited so much from other blogs who gave me play by plays of their child's heart surgery.  I wanted to be another resource for others who may need that encouragement.

I intend on publishing a lot during the surgery on November 6 and the following week or so we'll be in the hospital.

Some Things We Are Learning

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*I'm not sure why the video isn't showing up.  Please click on the link to hear Shane and Shane's "Though you Slay Me."  It's powerful.

It is difficult to summarize concisely all of the things that the Lord has been teaching us in this season of our lives.  It's been a hard time!  This song captures a lot of the emotions that we have been feeling.  When Peter says in John 6:68, "Lord, to whom would we go?" that echoes a lot of my thoughts.  Though I don't understand all of the trials we are facing, He is sufficient for us.

Deuteronomy 30:6
“The Lord your God will circumcise your heart and the hearts of your descendants, so that you may love Him with all your heart and with all your soul, and live.” 

This verse speaks so deeply to us right now.  Our hearts are being fully, painfully dedicated to the Lord though this trial, as we wait for our daughter's heart to be physically perfected.  We trust that He will draw us to Him so that we may live more fully.

From Paul Miller's book, "A Praying Life:"
"Another author of an otherwise excellent book on prayer said that prayer was mainly about us being with God and not about God answering our prayers.  As an example he mentioned that 'mothers in the days of high infant mortality used to pray desperately that their children would not die in infancy.  Modern medical techniques have put an end to those prayers in the West.'  Maybe.  Or maybe modern medical techniques were developed in the West because young mothers in the West were praying for the lives of their children."
[You can imagine how I reacted to that one!  Thank you, Lord, for the many mothers who have prayed for their children.]

Expecting Julia

The following is reposted from an earlier blog entry in April.

Some of you know that I'm reading the book "Expecting Adam," by Martha Beck.  The author learned that she was expecting a baby with Down Syndrome and chronicles her thoughts and experiences, some of which she said were magical and/or spiritual.

Today we had our own magical moment.

We went to Duke Gardens in Durham, NC, with Taylor's parents.  While walking along a path, a small, elderly Asian woman saw us taking photos and offered to take a family picture for us.  We chatted with her for quite awhile about Natalie, about the coming baby, and about our family.  She kept saying, "You're so lucky.  You're so blessed.  You're so fortunate."

Suddenly, I felt child-size arms around my waist.  I looked down, and an Asian girl roughly seven years of age was hugging my belly.  Staring right at my belly button, she said, "Hi!" and skipped away.  It was only after she moved along that I realized...she had Down Syndrome.

Welcome to the world, Julia.  Your life has a beautiful purpose, dear one.