5.31.2011

Updates Galore! Revealing Gabriel's Middle name :)

I know I've been updating a lot lately- it's more than ever, actually. I think it's because I need to keep busy, to keep my mind going, to keep focused on what I can do and what I can change- because when I sit still it still feels like we are in the beginning of a slow motion car crash.

It's slow enough that you can prepare yourself in a small way, but there's no real way to see what's coming and what it's going to be like after it happens. So here I am doing laundry all day long, folding Gabe's things, Judah's things, sanitizing toys, cleaning out things that have been waiting for months to be cleaned out.

I washed all of Judah's stuffed animals. I don't know if that's a bad sign or a good sign, but I think it's better than other things.

God's still working on me, and luckily he's keeping me upright and in the right direction. It has to be God, because it's certainly not me. I'm the type of person that trips up the stairs- breaks my pinky toe on the edge of everything- multiple times, runs face into a glass door. So for those of you who are praying, please know that your prayers are like the men holding Abraham's arms for me- so continue praying, please.

Also- for those of you who recall, I posted about Sanctus Real's lead singer's family's son, Bowen, who has HLHS. Well, I was secretly hoping that he would write an encouraging song that relates to HLHS- and he did. They are also starting up their own nonprofit organization- and every time this song is purchased it will be donated to that organization. The song is called "All of Me" by "Matt Hammit" so please go and listen and purchase it on Itunes to support his new heart foundation. Their son is doing very well, and I believe I have the link up to the right for you to check it out. It's www.bowensheart.com

Now, the big reveal. I desperately love the name Gabriel James, but unfortunately I cannot use it- because in pondering names we found one that stuck like glue.

Gabriel Abraham. This lead to us calling him Gaberham, or if he's a chubby boy, Gaber the ham. We love this name not only biblically, but we also admire Abraham Lincoln.

Nick also said we could call him "Honest Gabe" (hehe)

Looking forward to meeting our little man, and so happy to hear this new song by Matthew Hammit.

:)

God bless you in every way imaginable!

5.30.2011

The Lihn Family

I had mentioned Sisters by Heart in a previous post, you can find the link on the right side of the page if you want to take a look at their website. They are the thoughtful women going through the journey of HLHS that are sending care packages to newly diagnosed HLHS families. It was such a beautiful and sweet package to receive.

The Lihn Family recently posted a youtube video of their daughter, Zoe's, first year- so I thought I would share with you all so you can see a tiny bit what the journey for HLHS looks like- although it is different for everyone.

Her blog is thelihns.blogspot.com



Please take a moment to watch her beautiful journey and to be praying for her and her family as well- as they still have the final surgery to look towards before they can breathe a sigh of relief for a moment.

Blessings and Love!

Julia

5.29.2011

Doing the best you can with the knowledge you have.

When I was in highschool, I was lucky to have a lot of very caring and supportive teachers in my life. Some of them would care from a distance, while others would truly get to know me and talk to me about what I was going through. I was blessed to have all these angels around me when I needed them most.

Once, I recall a conversation with a teacher when I was venting about having parents who didn't understand what I was going through (cliche, I know) and said all the wrong things. She then told me a bit about her life growing up, and she said- "But they were doing the best they knew how with the knowledge that they had. I took what I learned from them and decided what kind of a parent I wanted to be." She was/is an amazing mother, with an amazing relationship with her daughter.

This really stuck with me. My parents weren't bad at parenting (raising a teenager is not easy now days), but I realized then that all you have to work with is the knowledge that you have at hand- so when you don't get it right, it's not usually an intentional mistake. I think this taught me to be a lot more loving and forgiving towards my parents too (they are humans after all!).

We all have this idea of how we are going to parent our best and do our best- whether or not we know it yet.
We are going to get our kids shots, or not.
Going to brush their teeth before they even pop through.
We are going to never let them eat candy.
We are going to make sure they eat exactly what is recommended.
We are going to be the best at discipline.
We are going to be the most loving.
We are going to homeschool, public school, take them to sunday school, take them to parks, put them in preschool, put them in groups with other babies their age to develop their skills, not work so we can be with them all of the time, teach them to self soothe...


But when you find yourself sitting on the couch, your child blissfully sucking on a sucker- watching veggie tales on television (that you never were going to let them watch till they were 12), and wondering if they got enough nutrients to count as a well balanced diet from that piece of chicken you managed to squeeze in between the potato wedges and chocolate milk....

Somehow you realize that being a parent is a lot more difficult than just making the right 'apparent' decisions.

When Judah eats something- and enjoys it- it melts my heart. Not just melts my heart... It gives me joyful delight- even if it's an oatmeal cookie and he wouldn't eat his gerber food... I am so happy that he is eating something that I want to do a dance.

Can you imagine feeling like that every time your kid eats? Because man, it makes eating a lot more fun. When I don't have to force in as many bites as I can get of his chicken broth with carrots and peas- this feeling of pure happiness fills my mind.

It is wonderful.

When I went into parenting, I knew that breast feeding was the best for a baby and I was so excited to be one of those breast feeding Mom's who was doing the best thing for their child.

Little did I know- that I didn't know anything about what being Judah and Gabriel's Mommy was going to be like.

I KNEW that babies should be introduced to solid foods after 6 months- little did I know I would be feeding Judah rice cereal or carrots at 3 months, just trying to get him to eat ANYTHING.

I KNEW all sorts of things that I had envisioned (after all the normal babies in our families with no complexities)... And my knowledge vanished with no trace of returning.

Being a parent isn't about knowing the right thing to do for a baby. It's about knowing the right thing to do for your baby, or at least doing the best with what you have.

No one has your child. That's why it's your child. No one gets to or has to make the difficult and life changing decisions that you have to make.

So before you think you are going crazy trying to schedule naps at the perfect times or do everything exactly the way it says in the parenting books-

Keep in mind- we are unique.

Just like some of us are going to have happy little chubby babies who breast feed like leeches and hit all the growth marks- never get sick- always reach their expected goals..

We are going to have babies who don't want to eat because something is wrong, who scream every time you try to put anything in their mouth, who need heart surgery, who are a little slower to the milestones than other babies, who hang out in the doctors office for a pass-time..

Hang in there- because as long as you are giving it your best effort- doing the best with the information and the experience you have.. You are doing pretty amazing :)

5.28.2011

A little venting...

Choosing whether or not to have an amniocentesis was a terrible thing for us. Although we like the idea of knowing whether or not we will have to prepare for a child with more 'needs' - risking our child's life to find that information out early seemed to be too much for us to handle. The risk is 1 in 500- or 2 in a 1000 as they explained to us. Neither sounded better.

When we found out our Gabriel 'Definitely has something wrong with his heart' from the high risk clinic- the doctor at the clinic practically slammed us into a wall with his opinions. He told us the risk of our child having a genetic anomaly was 40 percent or higher, which was incorrect, and he presented it to us in a way that made it sound like if we chose to keep our baby safe and not do an amnio, we were being selfish, and irresponsbile.

At this point, the amnio is not going to benefit us. It will benefit doctors in a small way, as they can find out if he has a serious medical condition (which there were no other signs of via ultrasound) that would leave him dying with or without surgery. In this case, they would not do surgery.

However, more likely than not if he had any medical condition, it would be Downs Syndrome. Nick and I were told before he we found out about the heart defect that he had indications of Downs. Those were all proved to be false indications (the ultrasound tech was measuring incorrectly). But it didn't phase us. Downs Syndrome children are not looking at not having a full and happy life, they aren't looking at being wheelchair bound, they are looking at being a little bit slower on the same milestones Judah is working on right now. They spend their life happier and more blissful than many, and many of them live normal lives, seperate from their parents, as they get older.

Going into the ultrasound at the high risk clinic I was hoping to myself... "Let it be downs, I can deal with that fine.. Please just let his heart be okay." But unfortunately, his heart was not okay.

Now, anytime a doctor presents the idea of your child having Down's Syndrome, I want to forewarn you they will present it like your child is part manatee. They will present it like a horrible loss- something that will be so much more difficult and horrible to deal with.

At our OBGYN appointment yesterday, our nurse was the ever happy lady she always is, helpful and friendly- getting all the referrals in place for us and praying for our little one. Our doctor is not the reason we go there, and we would have left months ago if our nurse wasn't so helpful and friendly- and a Christian, which is always a plus.

Our doctor came in, our large file in hand and opened up conversation this way. "So you talked with them over there and now you understand why you need to have the amnio- right?" Immediately I couldn't make eye contact with him- because he assumed that we had decided to risk it, and he gave me his opinion straight out with the way he said it.

"I mean, if there is a genetic condition it would change surgical options and- Blah blah blah." He started to sound like the doctor at the high risk clinic.

"Actually, we were told if he had Down's Syndrome it wouldn't change anything surgically, he would need heart surgery still." I said, feeling a surge of adrenaline, which I kept under control.

"Well... According to his notes if he had it it might change- like it could indicate other issues and change the way surgery would be done." I'm paraphrasing, of course.

At this point, I knew exactly what to say to make him look like a big flabbergasted man with a PHD that means zilch.

But I held my tongue.

The fact is, that our son has a complicated heart defect, and they won't know until they are opening him up on the table what he has going on. The fact is, our son is going to be tested for every thing under the moon when he is born, and I will probably get to hold him for all of five minutes (if that) before he is rushed away to another hospital where he will be tested and monitored and stared at for days.

Why would I risk my sons life for the tests that they will be repeating when he is born?

We reached this decision the day before our doctors appointment, that we were not going to do an amnio, because the small risk is the same risk that our child would have a heart defect, and he does.

And for that 1 person in 500 who loses their baby, it's 100 percent. Their baby could be perfectly healthy, and they have to live with that every day. We decided not to risk that pain.

So this is my vent- in dealing with doctors they want the information as fast and as easily to them as possible. They do not put their patients preferences or hopes first, and this happens to be our preference. So please, don't let yourself be pushed into tests or anything that you are not comfortable with. Doctors will throw out numbers that are inaccurate, outdated, incorrect, or just made up to get you to do what they want, or because they are too lazy to look it up themselves.

We have discussed letting them do an amnio when he is full term, so there would be no risk of miscarriage, and that is of course an option that we will discuss as it gets closer.

Why do they need the information now? Well. Because it's more convenient for them.

God bless us to stay strong and make the best decisions that we can in the next months/years.

5.24.2011

2 Years of Marriage and Blessings :)

Judah is currently watching Veggie Tales while attempting to eat my apple. He is one determined guy, that's for certain.

This morning I could tell Judah was going to be in a good mood. When he's slept well and is ready to go, he wakes up babbling and giggling away. It's refreshing to hear, because when he starts off a day well, it makes it easier for us parents to start off the day well too.

Yesterday we celebrated 2 years of marriage. The shortest, longest years of our lives. Nick and I decided to remake one of our first dates and went to Pojos (a small style gaming place with tokens and tickets and all that fun stuff). We played a few games (beat Star Trek, thank you very much), won some tickets (that Nick gave to a small boy, who was very excited) and took pictures in a booth. Then we went to dinner together at Chilis, thanks to a nice gift card my parents gave us :). A migraine tried to ruin our plans, but we managed to keep it to a minimum so that we could enjoy our time together.

Who knew that after having kids alone time would become so much fun? We laughed, talked about dating memories, early marriage memories and just enjoyed being best friends.

I am so lucky to be married to the perfect person for me. We are so alike and so different that marriage has always been interesting, never boring... Especially with all the random difficulties we've had.

--

Recently I've felt so blessed by our difficulties. Of course, I wish we would have had it easier with Judah's first year... But at the same time, I realize so much more what blessings we have. I always thought Judah was going to be the 'weird problems' baby... But who knew that we'd be here!

Since I am quite the jokester (much like my father), I like to lighten situations at times with a reference to the oddities.

For example- in explaining to my brother overseas (Afganistan) of Gabriel's heart condition- I told him... "Well... Half of Gabe's heart is two sizes too small." followed a few minutes later by... "It's actually extremely rare, even for a heart condition. We are like the winners of the 'weird things your kids can be born with' lottery."

But all in all, I think going into what we are about to face, no matter how small or how big- we have a small amount of preparation that we wouldn't have had. We've dealt with feeding tubes and know about saturation (how much oxygen is getting into the bloodstream), we've seen a little bit of what it looks like after surgery (nothing like what we will, I'm sure), and we've experienced the hospital prison time lag... Which is what we are not looking forward to the most. < 10 minutes in the hospital is equal to an hour. (After you've been there a while). >

Also, we aren't going in blind sighted. We know we have to be strong about what we demand for the care of our child, and since I don't like to be demanding... It's rough to get used to. But when you become a parent, you also become a 'mama' and 'papa' bear. You can't let people ignore your requests, and you can't let them get by without explaining everything they are doing to your child and the reasoning behind it.

-----------


For those of you in prayer with us- please pray for one of the Mama's from the sight heartsisters.blogspot.com

They recently sent us an extremely sweet package with things for Gabriel, a hospital gown (mini sized), onsies that button up on the side, a notebook and pen, baby leg warmers, a pacifier and a blanket that attaches to it (never lose it! woohoo) and a sign for our carseat that says not to touch baby without washing hands first. It was amazing to recieve, and it came with a letter that was also very sweet and encouraging.

The group is founded by 10 mommies who have had babies with HLHS.

Recently, one of them lost her son, Travis. He was 1 and a half. He was in the hospital for one of his final surgeries- and it looks like due to human error, he was lost during recovery. As you can imagine, his family needs all the prayers the can get at this time... Please be praying for them.. Here is their blog site if you would like to send some encouragement their way.. dicarlofamilyupdates.blogspot.com

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Finally, some great news!

We found out that our insurance will be accepted at Seattle's Children's Hospital! So now we just need to figure out all the odds and ends of delivering Gabe- and getting everything pre-authorized. We of course are going through lots in our heads, but it's so nice to know that one thing is off of our plate for worry.

So thank you for the prayers, God is working in our lives.

We appreciate all the love and support we've been shown.. Thank you so.

<3

5.21.2011

Life with Judah and Planning for Seattle

I suppose it's not very fair that my little Judah bear hasn't gotten any fame here lately. For those who have children I'm sure you can relate to some odd quirks and funny stages- so here's a few of Judah's.

Judah has obsessions already. It's been this way since about 6 months... maybe earlier. When I say obsession, I'm not talking like little cute obsessions... I'm talking like his mother's obsession with Chai tea during his pregnancy. It's a little overwhelming sometimes!

Judah is obsessed with a few things, but the number one- HUGEST obsession is doorknobs. Yes, the things posted in the middle of a door. Judah loves doorknobs, he MUST touch them, turn them, open and close them, have his hand on them... And relatives are finding that helping him reach a doorknob (though he hardly needs the boost anymore), is a really... really bad idea.

Once you indulge him by propping him up, it doesn't get better. It gets worse. You cannot walk away from the doorknob of his choosing. You cannot distract him easily, in fact... It could be a challenge of it's own.

This obsession is his main, although banisters are also in the running, as well as cupboards with knobs on them.

He also is in love with his grandparents, who are hilarious and mystical people whom he adores with all of his heart, as well as Uncle Jonathan, who is super fun!


------------------------------------------------------------------------------

In other news:

After looking over the hospitals in our area, we have decided there is no way we are having our baby boy have this operation anywhere unless it's at Seattle Children's Hospital.

Comparing Seattle Children's to any hospitals nearby is almost laughable. Their scores are impeccable and their success with the Norwood and in preventing infections after the procedure is amazing as well.

Their Pediatric Heart Program is nationally recognized and they do at least 1 Norwood procedure a month.

We would have considered the hospital in Salt Lake City, however their infection risk is in the yellow... and considering that is the number 1 cause in complications after heart surgery on these little ones... I won't risk it.

So we are going to be making calls Monday to figure out how to get a referral and schedule an appointment with Seattle Children's Hospital. This means that we will need to travel over there and make a plan for where we deliver Gabriel. From what I understand, it will most likely mean I deliver Gabriel in Seattle at a different hospital, he is transferred to the Seattle Childrens, and Nick of course goes with him to make sure everything goes swimmingly- while I stay behind and recover. Sounds kind of lonely on my end... But I'm sure we will get it worked out within the next 3 and a half months.

The other complexity this brings is how it will work out for insurance. I am on Medicaid because of my pregnancy, and that means the new baby would be as well... So I'm not sure how it will work with Medicaid and being in Washington.

Nick has insurance through his work, but unless I lose my Medicaid (I will 6 weeks after Gabe's birth), I can't be put on it. Now, we aren't sure if we can put Gabriel on it from birth or not, so this is what we are working on finding out. If it will even make a dent in his medical bills... So much to think about.

Well, I guess the jist of this blog is that we still need lots of prayers- for funding, insurance, and a plan to get Gabriel placed in the hands of the best doctors in the best hospital we can get him to.

<3

God bless you and your families!

5.19.2011

Preparation

Congenital Heart Defect:

A heart defect that is present at birth/in the womb.

Some babies born with congenital heart defects inherit them genetically from a parent... But for even more of us- it's a mystery why they happen. You are baking your baby, taking your prenatals, eating healthy, avoiding smokers, not drinking, and taking it easy... But somewhere around 7 weeks- something just doesn't go right in the heart.

Gabe's heart defect means that one side of his heart is two sizes too small (As I like to say). The doctors are currently assuming it is is his left side (Hypoplastic Left heart syndrome), but it could easily switch sides. Not only that, but it could look a lot better at the next ultrasound- or at the very least a little bit better.

Here are the questions we are preparing to ask at the next ultrasound:

1. Is it safe to deliver naturally? (I've read that usually the answer to this is yes)
2. Will we be able to transfer him to Seattle Children's Hospital (Their success rate is 8 out of 9 for the Norwood procedure, which is the first open heart surgery he will have)- or will we need to make arrangements to have the baby in Seattle for this to happen?
3. Will Gabe need to undergo the typical 3 surgery procedure?
4. What kind of things should we prepare for seeing and experiencing in the first days and weeks of Gabe's life?

And of course, many... Many more questions. The tough part is that most of the questions we ask cannot be answered- the specifics about surgery, whether or not we will be able to breastfeed... if I will need a c-section... It all depends on how God wires Gabriel's heart together now.

So those of you who are prayer with us, continue to pray for Gabe's little heart.

I am still sending out cards with hearts in them for those of you who would like to have a reminder to pray for Gabe's heart over the next months. Let me know if you are interested <3

julia.o.mcallister@gmail.com

5.14.2011

Between your head, and your heart.

Not being able to do anything to help your little one when something is wrong. Worst feeling in the world.
So today, I am working on making cards for Gabe. I am sending them out to whoever wants one, whoever is willing to pray for his health, his strength and of course- his heart.

If you would like to receive a card with a red heart in it to remind you to pray for Gabe- please email me your address and I will send one to you. My email address is: julia.o.mcallister@gmail.com

Gabriel's next ultrasound is in 7 weeks. Today he is 23 weeks old (womb time- :))

"I lift my eyes unto the hills- Where does my help come from? My help comes from the Lord- the maker of Heaven and Earth."

God bless you and every family struggling with a congenital heart defect.

FACTS:

1 in 100 babies are born with a congenital heart defect.
That means 40,000 babies in the US this year alone.
Every 15 minutes, 1 baby is born with a heart defect.
Congenital heart defects are the number one cause of death in infants and children, although children's cancer research receives 5x the funding for research.

5.12.2011

What we know:

Throughout the past few days google has been up constantly. Even when I'm dreaming, I am dreaming of Gabe and holding him.

The research is both encouraging and also awakening.

1 out of 100 babies are born with a heart condition of some type. Gabe's (from what we understand) is one of the most rare (1 percent of heart conditions), but not the worst. God definitely has made Gabe's path and has his days numbered.

I want to note that we have no idea and no control over Gabe's condition, other than to pray God's perfect will for his health and for his life. We will love him for every second we have him. We will love him the day he is born, till the day he isn't our responsibility- and if that means God blesses us with him for 6 minutes or until long after we are in heaven, either way we have put him in God's loving hands. We are praying for Gabriel to have a long life filled with joy and love- of course!

This condition is not genetically inherited. It's unknown why or how it happens, but somewhere when Gabe's heart was about 7-8 weeks old it didn't go according to the normal procedures. It wired itself differently, gave itself a different kind of engine than the ideal.

The good news, is that this engine can be worked on. The reason why this engine is working now, is because of two things. 1: Gabe doesn't have to breathe, so the part of the heart that drives oxygen to the lungs doesn't need to be used. and 2: When in utero, all babies have an extra artery supplying blood to the body. So if it is like they think and the left side of his heart is the small one, then even though the aorta isn't big enough to do the job alone, it has a buddy helping it out right now.

Once Gabe is born, that extra artery disappears within 24 hours if he isn't given a medication to keep it open for an extra week or two. So at birth, he will be taken away for testing and to have the medication administered. They will check everything else on his little body and ideally let us have him a day or three before he is taken in for his first surgery.

The first surgery will be the most tricky, and has a 60 percent success rate. His heart is strong, and he has great odds. He shouldn't be exposed to any illnesses in between his first surgery and second surgery. The second surgery (90 percent success rate) will take place anywhere between 5-8 months old. The third surgery (also 90 percent) can take place between 1-3 years old.

The most dangerous complication is infection. Of all the heartbreaking stories, this seems to be the common problem. We will definitely be preparing our lives for Gabe, so expect to be sanitized anytime you want to see him :)

This is what we understand so far, though things can and may change dramatically when they look at Gabe's heart in 6-8 weeks. It could look better- blood flow could have increased to the left side- increasing the left ventricle and artery's size.

Lots of things to be praying for Gabe's body's healing and the doctors hands as well.

5.09.2011

Not underestimating.

Today was difficult. The emotions are hard to process- and I don't know how people process them normally. Is there a normal way to receive difficult news?

I'm not underestimating God and his ability to heal and change- and prayers will be fervent, I am sure.

We were told today that our son has a heart defect and will require surgeries to live. The prognosis is good. Lots to take in.

God bless our little Gabe <3

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