6.30.2011

Home from Seattle Consultation

Well- we are home. Still feel like my brain is lagging from the ride home, but Judah did wonderfully and practiced his walking quite a bit on the stops we took. He is practically a pro now. (I think he started walking and running at the same time- so his walking is semi dangerous as he is always at full speed- and not always at full balance). It's such a joy to watch him changing and learning these new things- darn my exhaustion level gaining by the day for the last 10 weeks of this pregnancy.

Our appointment went well, we were so happy to have researched and talked to so many other families with different heart issues (mainly HLHS)- because we knew what to ask and we feel like we really have a handle on what to 'expect'.

Gabriel has HLHS with AV- which is actually good. AV is a hole in the heart, but in HLHS it is a hole that is needed (he has 2 holes). If his 'septum' was intact, it would make surgically repairing his HLHS far more complicated, and the hole is helpful for the surgeries.

We were also told (there has often been back and forth on this) that his femurs and arms are measuring at least a week behind in growth- which could be from his short genes. (Nick and I are short people at 5'5" and 5'7"). What this indicates is possible Down Syndrome, as they have said before- but it doesn't 'really' indicate it, as it could just be a normal variant.

The only reason it matters if it is DS is that the complex 3 surgery heart 'fix' is apparently not possible for DS babies. The third surgery, the Fontan doesn't seem to go well with babies with DS- no one knows why- but they just don't fair well afterwards like other children.

Other than that- we wouldn't care if he had down syndrome, but no 3rd operation means the 'fix' for the heart cannot be completed- and we aren't really sure how they would go about it otherwise.

For now, we are going to just not worry about it- since it won't change the first or second operations and there is nothing we can do either way.

We left feeling vindicated as far as the amniocentesis goes. When we asked the Seattle doctors about it- they said they don't recommend an amnio- since at this point it carries a 1 percent chance of triggering preterm labor- which is the last thing we want for Gabe. Not only that, but when Gabe is born they will take some of his cord blood and do the same tests- which will be back to us with results in 48 hours. So in all reality, they don't need the test.

This made me want to HA in our doctors faces, but I just feel happy to know that we did the right thing for us and stuck to it. That's what really matters to us.

As far as breastfeeding goes, that option flew out the window, as until he is recovered a lot from his surgery he will not have the option of even trying. We will be pumping (we were donated a breast pump from an extremely generous woman- an extremely nice one)- and giving him everything we can possibly give him. This was a huge blow for me- although I did expect it. Not getting to breastfeed Judah and not really having an idea of how to pump enough to make it happen that way was so frustrating. I was so looking forward to trying again.

I also wanted to do a natural birth at a birthing center and be a sling baby carrying mommy with a hugely fat baby- and that's not the cards I got played. So yes, I am definitely dealing with some major disappointments right now. But I just want to get to see my baby. I want to be with him, and I want to keep him for as long as possible. That is what matters to me.

So we will head up to Seattle around the 15th of August and be there until birth. After birth, the surgery will take place between 4-10 days of life- and the hospital recovery for it is about a month on average.

We will get to hold Gabe for a few minutes when he is born. Then he will go to recieve a medication called prostaglandin which will keep his extra artery (PDA) open and keep him doing well until surgery. While his on the medication, he must be monitored closely- because it can make babies sleepy and sometimes they need intubation to remember to breathe. He will be transferred to the Children's hospital within a couple hours of his birth- and I will work on recovering to get over there. Although I want to be there the whole time, until I can get around well, I am probably going to let myself rest for a moment- since I exhausted myself so much trying to be with Judah when he was born that I could hardly function. I want to be there- but I want to be rested and ready to be there for my little one.

The Children's Hospital is wonderful. It was fun to tour, it has a pool that is open for an hour every day to Judah- very warm pool. It has a beautiful outside playground and some awesome indoor things too. It's going to be wonderful to have Gabe there, since Judah will have things to do too. My brother Jonathan is going to come up with us and watch Judah when we can't after delivery- and this makes it even better. A place to take Judah- woo!

At risk of overloading information, I am going to leave this here for today and write more later. Judah is looking for some Mom time fun- so Bless you and your families and keep us in your prayers <3

6.24.2011

Off to Seattle

I am supposed to be finishing up getting ready, but I thought I would do a short entry before we get everything put in place (since the car is getting adjusted at the moment, anyway).

We had an ultrasound yesterday (apparently for no purpose at all, so we just got to have fun and look at Gabe). We told the tech about Gabe's special heart and she took a look to see if it was immediately noticeable.

She didn't say anything for a moment, so I asked if it was. "Oh yeah." She said.

I can't say I was expecting it to be gone or anything, but hoping that it was less noticeable was definitely in my head. Hoping for a miracle- but I think (as I have thought since we found out) God's miracle is coming from the surgeons and what their hands will do for Gabe.

25 years ago my baby would have died within 2 days of birth- nothing they could do- nothing could change it. 10 years ago his survival rate was probably in the low 20-30 percentage, if that high at all. Now, my son is looking at 85 percent success with all the surgeries, and upwards of 20 years before he will need anything else.

Knowing that I would have been preparing for immediately losing Gabe without a miracle- just 25 years ago- it's humbling to think about. I can't help but wish that our odds were 100 percent- but I will take 85 over 0 or 30 any day.

Now- calculating in the prayers that everyone has been sending out for Gabe, I'm giving him at least 110 percent survival chance.

Giving your child's circumstances to God doesn't mean not acknowledging that they are there- that you are going to go through an extremely crazy journey- that's reality. The journey may or may not have the outcome we are expecting (though at this point we don't really 'expect' anything). It means that you don't put the burden on your shoulders- because that won't give you the strength to fight the battle.

I know God is going to use Gabe's life for something beautiful.

And I am so excited to see what it is.

Just looking at all the other families with "Heart Babies", I know without a shadow of a doubt that Gabe will do something beautiful in our lives from the second we get to meet him (even from the second we met him via kicking :).)

There are so many families that have heart babies, and I am so happy to have them around- even though I wouldn't wish the journey on anyone- these families have hearts of pure gold. They are loving, beautiful, and they know the value of every second you have with your child.

So God- fortify our hearts through the journey we are on. Refine us into shiny gold people who make people excited for Jesus- excited for miracles- excited for love and it's amazing powers.

Back to the packing!

Bless all of you and your families. <3

6.20.2011

Raining Peace

I cried the day we found out about Gabe's heart. I cried the next day too. That was enough for me- because I mourned for the things I had been hoping for- and I let it go. I lifted up my hands and threw back my head and told God it was in his hands- because that's what you have to do.

You can't leave the burden of it on your own shoulders. You can't let it shove you down.

If you don't throw your hands up with the burdens, then you are suddenly in a pit of sinking sand. You are struggling, and you are fighting- but the harder you struggle the faster you sink... And it will become a load that is unbearable. You throw up your hands, lay down before God and crawl out of under the weight of it. It's not as easy as I would like it to be, but it's something you must do- for I know that God can't give you a miracle if you aren't giving him the problem.

Now- I laugh about it sometimes. I laugh at the small irony of my thought processes when we found out we were getting another sweet baby. I laugh at the ironies because it's not a weight on me.

People have a hard time reacting around us when we bring up Gabriel's sweet little heart. I don't bring it up often anymore, because no one knows what to say, how to handle it- and they usually end up awkwardly standing there, looking at me for clues as to how to react.

Some people find it weird that we make jokes about singing Christmas songs to Gabe to help his heart grow- but it puts a little smile in my heart and I hope Gabe can feel that too.

We leave on Friday night (if it goes as planned) for Seattle. Our appointment is all day Tuesday and we come back Wednesday (Nick has class on Thursday).

We don't know what to expect. We don't know if it will be better or worse than what we have in our heads- we don't know if it will change our plans- we don't know if it will change our lives even more than it already is going to- but the truly nice thing is that we don't need to know. We know that Gabe is in the best hands- God's hands. He has a place for him in our arms and in his arms.

At first, I was very concerned about getting Gabriel dedicated when he was born. I wanted to make sure it was done, just in case... But I realized very quickly that we had already given Gabe to God. We already dedicated him to God- and I don't have to worry about that. I don't have to worry about having a ceremony because we pray every chance we get that God will keep Gabriel in his arms and use Gabriel for his works.

HLHS is scary. We aren't ignorant of the complexities that we are about to face- but we are very well aware that it is far beyond our control, or our wisdom.

So God bless every family who is diagnosed in Utero with something complicated and scary- or even minor and scary. Bless them with the ability to lift up their hands and lay it down. Bless us to continue being able to lay it down as this journey continues. Bless families going through all struggles of life right now to be able to take the grace that you have given. Bless them with strength and with hope and with peace that surpasses what we can fathom in times of stress.

<3 Bless you.

6.19.2011

Fathers Day!

Ten Reasons I Know My Husband Was Raised Well:

1: My sweet husband apologizes when he does something that he knows was wrong or hurt me.
2: He forgives me when I am ridiculous
3: He loves Jesus with all his heart
4: He has a very disciplined mind
5: He prays for me all the time
6: He tries his best to make me happy when I am struggling
7: He helps me out with anything I ask
8: He loves his parents
9: He knows what priorities are and how to organize them
10: He is a social butterfly

And finally, I know he was raised well because he is a GREAT Dad.

Nick is the only one who can get Judah to take a nap when Judah has decided to forgo nap time.
He loves his baby bear with all his heart- and he loves being around him. Nick talks in a small voice to Judah a lot of times- and I feel like that is a number one sign of a good Daddy- the ability to communicate with your little one on a little level.

Even when we disagree on things- I know that my husband is quick to forgive, quick to change, quick to apologize, quick to forget- all things I wish I was a lot better at.

So for fathers day- I really am thankful to my husband for being the man that his parent's raised him to be.

I never have to worry about Nick not forgiving me. I never have to worry about him getting angry enough to hit- he doesn't have a bone in his body like that. I never have to worry that he will betray me. I know he was raised with values- and they are similar to the values I was raised with (if not the same). I don't have to worry that Nick will be drunk (or drinking, for that matter). I don't have to worry about him not coming home.

And with a worrier like me as a wife, it's so nice to have a truly morally structured husband who knows who he is and knows what he believes.

It reminds me a lot of my Dad- and that's really great. I never worried about my Dad being drunk or walking out on my Mom, smoking, or hitting us. I never had to wonder about my what my Dad believed and I never had to wonder if he loved me. My Dad never had the issues that a lot of my friends Dad's did. I never found a dirty magazine or website at my house. I never saw my Dad turn to cigarettes or alcohol to cope with things.

I'm proud of my family, and I'm proud of all the fathers in my world.

I know my husband had parents who know what they believe and stand for it on a daily basis. I know he is proud to have a father like he does- a father like mine who does his best to be an example to his children and to love them with all his strength.

And for all you with fathers like ours- you know how nice it is too.

I know the reason why my father and Nick's father, and my husband now are such good fathers. It's not because they are perfect or because they never did a bad thing in their life. That's not the point.

They are great fathers because they fiercely love us, just like they have been loved- and just like their heavenly Father loves them. They are Christian, Men of God. They fight the temptations that are most difficult, because they stand for what God is and who God says he wants them to be.

They are great at discipline, and not just with their children. Being a disciplinarian means that you have to be able to discipline yourself- and that's where they succeed. Being a mighty man of God does not mean that you are inhumanly perfect and unrealistically have no sin in your world. It means that you fight off the sinful natures of the flesh and stand for what you know God has called you to be.

Thank you God for putting such great examples of fathers in our world. <3

6.10.2011

Plans!

It feels so nice to have things falling into place, but it also feels like we are about to hit the downside of a big roller coaster hill.

We are headed to Seattle in a couple short weeks to have the ultrasound and echo done for little Gaberham :)

He is much chubbier than Judah at this stage, as getting up to use the restroom every 2 hours all night is already getting pretty tiring at 27 weeks! Less than 13 weeks to go... Gulp!

Our plan at this point is to check out both Seattle Childrens Hospital (where Gabriel will be transferred after birth to receive the best care possible) and to also check out University of Washington- where I will be delivering. They work closely together and I am hoping that it will benefit us greatly.

I am hoping that Gabriel might be able to stay at University of Washington for a couple days after birth, pending that his stats are good and his heart can wait the expected week or so before surgery (praying for that). That way I will be able to stay with him for my recovery, or at least near to him- and I will get that time to bond... or at least mildly bond- with my little man.

Our last birth experience we had to have Judah taken away to the NICU within a few minutes of birth... so I know what we are looking forward to in that aspect. It was really hard. It was more than hard, it was physically painful. I think that all the hormones your body surges through after you give birth give you the will to fight off cougars for your child- and I felt like I was in grab my baby and run mode. Letting strangers have your little new tiny baby is awful... So I am hoping that getting to meet the nurses and doctors and see where we will be might fend off that stress a little bit. Nick will be with the baby when I am not, so that will relieve a tiny bit of stress too- knowing that he will be in good hands.

In reviewing hospitals... I will say that although St. Lukes is potentially the best hospital in Idaho- I wouldn't recommend it for any parent with a child that has an issue. The medical staff was non-informative, uncommunicative, uncompassionate, and they lied to our faces a few times.

They didn't respect our wishes (mine to breastfeed), and they would run tests without our knowledge. Not to mention not even informing us when they inserted an NG tube (feeding tube) into our 2 day old infant without our knowledge or without informing us what it was for. When we asked the purpose (Judah was eating well)- they said it was to remove bubbles from his stomach..

This was pointless in a newborn infant who had not undergone any surgery and was eating well. It was not only that, but the way that they couldn't explain why they needed to place it was so upsetting. Then when we asked if it could be removed (since he was eating fine and always had been at this point)- they told us it would be painful to remove it. Just in case anyone doesn't know- it isn't painful to remove it. Uncomfortable, perhaps, but Judah didn't even cry. If they wanted to practice inserting an NG tube on an infant, they should buy a doll. Not use my little child for a practice target.

The staff also repeated tests on my son, because they lost his chart (more than once). My husband and I trusted them, and hadn't really worried about this, but we noticed pretty quickly when it happened. I remembered the test and asked why they were doing it again. They had no idea.

We were given to interns who told us if we took our baby home he might die.

Just so anyone who is confused knows... Our son was not on the verge of death. He was doing fabulously. He just had stridor.

Stridor= noisy breathing.

It wasn't effecting him at this point in any way- they just couldn't figure out why he sounded so scary. No joke. The stridor would not effect him until he was months older, and it would certainly not kill him.

So telling a scared new couple of parents that their son could die if they took him home because you have never encountered Stridor before (they were new interns).... Bad idea!

I am looking forward to working with people who are not only professional, but who have practiced medicine for longer than a few years and aren't doing their internships. I am looking forward to being prepared to be our son's advocate and to make sure no one touches his toes without giving us a good reason.

I love being a little more prepared to deal with doctors and nurses. I also think it will be lovely to deal with ones from a more well known hospital- and a hospital that is truly prepared for the situations that may arise.

I'm sure St. Lukes is great for babies with normal little issues- but my kids are extra special.

:) Okay, maybe every mommy feels that way.

Anyway, be praying for our gas tank, our trip up on the 25th, Nick's work to be accommodating, Nick's school to work with him well and for him to stay on top of things, Judah's traveling abilities, finances for all the small things, a babysitter for the 28th (all day ultrasound) and extremely amazing knowledgeable doctors.

Also continue to pray for Gabe's heart and that chance of a miracle coming through. I would definitely not mind forgoing all surgeries and having my baby at St. Alphonsus in Boise. I really was looking forward to that 1 hour massage afterwards ;)

Bless you and your families! <3

6.06.2011

Taking a break from reality

Huge knot in my stomach this week- so I am fighting it off by taking a break from reality (or our current pregnancy reality) to just focus on what I have.

I have a beautiful little Judah Alexander Malachi McAllister who is an absolute joy and handful, a hardworking husband and family all around.

Sucking in this moment- breathing in the air.

And of course, dreaming good dreams. Last night I dreamt of singing in a congregation and speaking in tongues. Got a little dream church, I suppose! Just what the doctor ordered!

Bless You!

6.04.2011

Rough week in the Heart Community.

I haven't sent out any cards in a few weeks, and I am so sorry. I keep starting to write them and not being able to finish- I don't know what my problem is!

This week in my 'heart' community we lost 3 little ones.

Please say a quick prayer for Baby Easton's family. He was the youngest of 3 boys- his infections became too complicated and he was taken off of support yesterday.

http://www.facebook.com/profile.php?id=1232111844

This is her facebook if you would like to send her a message of support and love.

Also... If you can...please say a prayer for Christina, who lost her baby daughter on Monday. Elianna was 13 days old. The doctors were planning her discharge but then she aspirated and was lost. It's been a heartbreaking week...

And Seth's family as well. http://www.youtube.com/watch?v=OTs-I3gYujU

Pray for their families strength and peace in their hearts- throughout this rough time.

Keep praying for Gabe's heart too! We will have an ultrasound in a couple weeks- but the echo isn't scheduled till the 30th- so no news on his heart until then.

<3 Bless you and your families.
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