The Iron Saga...

For those of you keeping up... we had our follow up with our pediatrician today. I told Abby that she wasn't going to get "stuck" with another needle and yet -- they did do a toe prick to see if her iron levels were rising. They've gone up a bit and so he lowered her dose of iron and is allowing us to give it every other day. We're hoping this gives her body a little break and a chance to gain some much needed pounds. His final words were, "You can do this, Abby!" Hurrah for the pediatrician.

More New Things She Can Do!

The picture doesn't quite capture it, but Abby could never hold on to her feet and bring them toward her mouth before. She does it whenever her tummy doesn't hurt and she's happy! I don't know if it's an age thing or a heart thing (i tend to thing the latter, of course) but it's pretty cute. Every time she has done it she spits up a little afterward from smooshing her tummy -- but she doesn't seem to mind. Yet another "new" thing she can do post surgery!  It was actually a bit chilly here yesterday so we busted out an outfit that should've been too small and too hot (it's from a friend in Bend, OR) and it not only fit her, it kept her toasty AND you can see her healing scar through the little hole. Cute, right? (I'm sure no one else thinks her scar is "cute" except for her dad and I). And of course, in lieu of giving the vitamins that make her gag and throw up, we have another way for her and Red the dog to get their Vitamin D. Thank God for warm So Cal weather!

1 Step Back....

Ugg. I hate to update with this....after all our good news. It's not that something bad has happened, but in the midst of severe sleep deprivation and exhaustion, it feels like a step back. I won't go into all the details, but in short, the iron supplement is still wreaking havoc on Abby's little system and she has trailed off in terms of how much she is eating again because of how much her tummy hurts and her constipation is affecting her. We're adding prunes to her diet so hopefully that will help... but the excitement that she is gaining lots of weight has really tapered off and the reality that this is going to continue for a few months is settling in. I'm really ready to worry about skinned knees, painful splinters and really ANYTHING other than weight gain. We are hanging in there and trying to take things day by day... and Abby will prevail! We just know it.

Cardio Follow-Up

Hurrah! We made it to our cardio follow-up today with a great weigh-in. FINALLY! Our cardiologist (pictured here with Abby) has always been very honest about how serious her weight gain (or lack of it!) really is and today we got a great report. Her pulse/oxygen levels were great and EKG was good too. We also did an echo. Because Abby's heart has been enlarged due to the hole making it work extra hard for all of these months, it's going to take some time for it to return to a "normal" size and also for a set of valves to adjust. At this point, the valves are a little "leaky" but we expect that to fix itself as her heart functions better and better. Her lungs sounded so good today that he lessened her dose of the medication to dry out her lungs from twice a day to once a day. Yes!

We also met Matthew -- a little guy who was having an appointment the same time that we were. He had his surgery a year ago, at 4 months and around 9.5 pounds -- pretty similar to Abby. First of all, you can hardly see his scar anymore....and his mom gave a glowing report about how by the time he was 8 months old, he was back to where he should've been for weight. I don't know if our little peanut will rebound that quickly, but Matthew was a big ray of hope for how quickly these little guys recover. In fact, you can see from the picture that her scar is already unbelievably different than it was 2 weeks ago (when she had surgery).

Seeing that Abby can't lay on her tummy till early December, she'll be a bit delayed with holding her head up most likely. This will slightly delay her ability to sit up and start crawling....but long before her first birthday, our cardiologist assures us that she will be "up to speed." She'll be playing soccer, racing circles around us...and if she wants, running triathlons by the time she's older. Good job, Abby.... keep on eating, girl!

Happy 5 Month Birthday, Abby!

I can't believe Abby is 5 months old... And that surgery is behind us. She hasn't had any painkillers for over 48 hours and it seems like she is out of pain. She had codeine for the first two nights home and then just Tylenol which we gradually spaced out so that now she is off of that too. Amazing, right? I'd still be complaining and laying flat on my back.

We had our surgical follow up today and Abby got her last childrens hospital sticker! I busted out an outfit that looked too big-- and it's almost too small-- thanks Heather Motichko! The surgery follow up was pretty uneventful -- great blood pressure, great vitals in general and some weight gain! When she saw the nurse coming at her with the blood pressure cuff, she burst out crying. She's got a little post hospital trauma going on, I think. It just so happened that our favorite nurse came in to snip the stitch where her chest tube came out and we were outta there - hopefully never to return! The picture on the left is us waiting for the nurse to come snip that stitch. After our cardiologist appointment on Monday, we don't have another appointment for awhile... we have plenty of questions for him about what Abby can handle seeing that she hasn't been on her tummy yet and we aren't encouraging any turning over, which I think is usually happening by now.

Before I get lots of choking comments about that second picture, please know she had on those Disney Princess goodies for all of 5 seconds. Little Eliza Bock wanted Abby to have candy (thanks for the box of See's, instead, Kelly!) and to share in the joy that is Disney jewelry. Abby looks pretty happy... just perfect for her 5 month birthday.

Spit up and Pumps

Lovely topics.... But for the first time in Abby's life, she split up twice today. I'm so happy! It means that she's got a full tummy! She actually had a little tummy hanging over her tiny 0-3 size pants. Yes!! She weighed 9.5 pounds today.

I'm almost scared to say this outloud but it looks like for the first time since Abby was 2 weeks old, I don't have to use my breastpump at every single feeding. I feel so..... Free! And proud of my growing eater.

Iron Woman

Oh how much more fun watching Iron Man would be than watching my little Iron Woman suffer. Taking oral iron really bites! But I guess it's better than a blood transfusion. My Dr. says that he has this conversation post-surgery with parents twice a day -- their child is in pain, they need relief. Ugggg. We're giving Abby just a tiny bit of diluted apple juice (oh, the things I've given her that I have sworn I wouldn't give her till she was older...) to help with the constipation (and hopefully the crying.) We didn't take the iron yesterday and had a pretty good nights sleep and very little fussiness today. But our Dr. convinced us we had to resume ... so here we go. He also said not only will it constipate her but it will also make her nauseous. Awesome, right? I told him that he might need to have the straightjacket prepared for me when this few months is over. That's right...she'll be on this stuff FOR A FEW MONTHS. When I heard that I almost cried. So, please pray for Abby's digestion of this stuff, very little pain and ultimately, her anemia to be completely resolved sooner than later! Here are a few pics of her doing her new favorite things -- sitting up and getting as many things into her mouth at once as she can; as well as listening to classical music and "hanging out" (hence the arm on the pillow) with Sofie the Giraffe.

Leaving you hanging...

So sorry everyone. The girl pooped. With great relief. For everyone. And we actually got a little sleep last night!!

Yowzers

I almost blogged this morning asking all of you to pray that Abby would poop. Seriously. I was that desperate.i just couldn't puy Abby down long enough to so it. She had one of her worst mornings ever today--6 hours of terrible crying because of gas. We assume it's from the iron she is on for her anemia. She also has a slight rash which we will call the doctor about tomorrow. Just when we thought we were good to go! Thankfully Grandma Nieporte is here for a few days to help out. God bless those of you who brought us dinner!!

Thank you for all of your cards, emails and phone calls... We expect this Christmas to be a very special one, especially because we pray that Abby will be on the other side of this.

One week ago...

I cannot believe that one week ago today, Abby had her surgery. It seems like it's been a month!

We had a meeting with a lactation consultant today and Abby did great. She is eating well - taking in lots of milk in record time. We are praying that it increases and that weight gain really begins. She continues to have abnormally fussy times but we know she has been through a lot. We look forward to this Friday at her first surgical follow-up.

Little Changes

Here is our little monkey - after only being home a few days. Most of the time, she's happy... just like her old self. There are other times when she's a bit more "needy" than before (heck, wouldn't you be if they cracked your chest open and messed around in there?). I am already starting to see bits of her scab come off -- it really us unbelievable how quickly her little body is healing. She still makes a little "eh" sound in some positions like she used to (as if it's hard to breathe) and I assume this is because her lungs are still so "wet" from all that extra blood getting pumped to them for 4 1/2 months. In another few months, they should dry out. A tiny change that I noticed today is that she used to not let you hold her up to your shoulder. She'd arch her back and not stay in that cuddly place.  I never thought that had to do with her heart...I just thought it was a preference on her part. Today, she snuggled right up to my shoulder and hung out there. Huh! Who knows....  We started her on her avocado diet again today and she's eating just about every 2 hours or so. Just like when we brought her home from the hospital the first time. We have some folks bringing food over this week and I'm so thankful because the new level of sleep deprivation that kicks in around 5pm is pretty staggering. We continue to pray for the same ole' things.... dry lungs, her anemia to resolve, her heart to return to it's normal size (in due time) and for her to pack on the lbs. 

Keeping Up

Discharge took forever yesterday. At first we were really excited (here's a picture of the three of us) and Abby in her "going home" outfit. Of course it is "kimono" style (per her daddy's instructions) so as not to make her put her arms over her head. Thanks "Auntie" Pam and Nada for letting us bottow such a "hopeful" outfit! Pretty soon, she was worn out from waiting.




They handed us our bag of breast milk, Grant put masks on all of us and off we went. I've never seen Grant move so fast. Seriously. Have you ever had a hard time keeping up with him? He was all but running through the lobby so as not to get any germs on Abby. He was moving so fast I couldn't even get a picture.

Once we got home, Abby did pretty well. She cried for awhile and was fairly inconsolable -- we thought it was from pain but as soon as her daddy took her outside, she calmed down. It was a rough start, but Grandma and Grandpa had cleaned our house and had some dinner for us when we got home. We will be sad to see them go today after all that they did for us while we were in the hospital. We gave Abby some Tylenol with Codeine which we thought would knock her out. She woke up every 3 hours to eat -- which is a good thing for calories and a bad thing for our sanity! We are so happy to be home....and now the long road to full recovery begins. We think that in 8 weeks she will be completely healed (the bone will be healed) but hopefully long before that she will be doing great. This morning we started consulting at the medication chart -- the poor girl is on lots of stuff.

We go to the surgeon this Friday for a once-over and to check on her anemia, her lung, her heart...and all of the other things that are still unresolved. Then one more cardiologist appointment the following Monday. We continue praying... and thank you all for our love for us. We'll keep you posted as the next few days progress.

Home!!

We are headed home today!! Apparently her lung looks better than yesterday. The surgeon doing rounds this morning said it's nothing to worry about. Thank God!!

Now we get to end our stay the way we started it- with brain numbing paperwork - and a boat load of medications. She is still on a med to dry out her lungs, iron for the anemia (which might cause tummy issues so again, we pray for good eating), a med to combat tummy troubles and a disgusting tasting vitamin. When she's not eating she'll be taking meds!

We've got follow up appoinents in the coming week wig the surgeon and the cardiologist.

As far as our hospital stay was concerned, we could not have endured without your prayers. Thank you just doesn't seem to cover it. But thank you! We feel so blessed to have walked through this embraced by all of you. More to come....

Saturday!

Prayers remain the same till we see out Dr. this morning.
-anemia
-increased eating
-hole in her lung
-oh-- and lessened pain at her iv site-- every time they put anything in her iv she screams
-wisdom for discernment in caring for her if they send us home today

Friday night

Our girl continues to hang in there but she's been pretty fussy of late. Maybe it's all these "visitors" that come in to do things to her that make her cry. If i were her, I'd be pretty over it, too. Please pray for a good nights sleep... Especially since we've got 3 other little ones all in the same room. Thank you!

Recap with Photos!

Please see the post below for prayer requests for today and an update on Abby....

This was the night before her surgery. Our good friend, Kim Getty gave Abby this sleeper when she was born. Little did she know that it would be very appropriate to have this whole heart over her heart the night before it was going to get patched.

This was at 5:30am at the hospital....with a shirt signifying our theme -- HOPE! (thanks to Grant's mom for the shirt!)

The three of us right before we put her in her cute hospital PJS

The high fashion of Children's Hospital. This was before we were told to wait -- which turned into a few hours in which we thought we might get bumped. Abby didn't cry at all even though the last time she ate was at 2am.

I'll spare you the picture of both Grant and I crying after we talked to the surgeon and got the incredible news.

Here is Abby in the CTICU (we hid most of the scary wires and tubes) -- you can see the bandage covering her incision. This is close to what she looked like the first time we saw her after the surgery. 

And finally -- this is TODAY!! Our happy girl with her glorious scar.... WE LOVE HER SO!

Not going home just yet

Just as we were getting ready to pack up... Our cardiologist took a look at her recent lung xray and he saw a small hole. He said this is very common but wants to keep her one more night to make sure it closes. Please pray for it to close so she doesn't have to have a tube put back in to resolve it.

Abby is finally feeling more like herself-even flirting with the doc who did her echo this morning. She has these great moments and extrmely fussy moments- most likely because she had open heart surgery just a few days ago and she's still sore!

They started her on iron this morning to combat the anemia which might upset her tummy- the prayer for better eating continues in light of that.

She's really doing well. Lots of pictures to follow this afternoon!

Day 4 - Hope!

Abby's theme song (on loan from Grace Bowne)

I have a hope
I have a future
I have a destiny
That is still awaiting me
My lifes not over
A new beginnings just begun
I have a hope
I have this hope

God has a plan
It's not to harm me
But it's to prosper me
And to hear me when I call
He intercedes for me
Working all things for my good
Though trials may come
I have this hope

I will yet praise Him
My great redeemer
I will yet stand up
And give Him glory with my life
He takes my darkness
And He turns it into light
I will yet praise Him
My Lord My God

-Tommy Walker

Day 3- Update 3

Abby's nose tubes have been taken out and her oxygen levels have been really great as of this afternoon. She really did wake up for a few hours (before the new pain meds were given) and she even managed a few smiles and her signature "teradactyl scream". The first signs of her acting like herself!

She does need to step up her eating and we are still praying for her wet lungs, anemia and a clean echo tomorrow.

Nighty night! (at least until it's time to feed her again!)

Day 3 Update 2

Abby's drainage tube and pacemaker wires (left in after surgery in case they need to adjust how her heart is beating) are out and her incision is uncovered for all to see! It's a glorious thing... a reminder of God's perfect healing. For being someone who gets woozy around blood, I am quite enamored with it.

Prayer requests:
- that Abby can breathe really well (her oxygen levels stay high) without the tubes in her nose
- that she really starts to "wake up" and eat well
- her iron levels would go up and no need for a blood transfusion tomorrow because she is slightly anemic
- that her echocardiogram shows a wonderfully patched heart

Day 3 update

We are waiting to see about Abby's lung xray to see if this tube can come out. If they do that, they will take all the tape off of her chest and check out the wound as well. They turned off the oxygen in her nose for a bit and she wasn't doing perfect just yet so it's back on... Just lowered a bit. After some conversation, even if they remove the tube, we won't go home today. Grant and I agree that we need some more time here - and it isn't because of the awesome hospital food!! We have held off holding her a lot because of her drainage tube but we were told today that moving her around and making her a bit uncomfortable is the equivalent of an adult being asked to walk around after surgery. She needs to do it. So I'm holding her as I write this--she is stil pretty drowzy from the 4am codeine dose. More soon...

Day 3- Just Barely

As we begin day three, I am shocked that they are talking about sending us home soon. Can you believe it? We want to stay a bit longer... So we will see. We are sleeping on this little couch just barely big enough for both of us, under a window, right next to Abby. We fell asleep laughing that we feel like we are at camp- lots of people in a very small space. She has been nursing like a champ so far tonight. We have to negotiate with all of the wires and tubes just to get her out of bed and into my arms. And i could never do this without Grants help. How do single parents do this?

Last night she got morphine at 4 am and didn't get another pain med until 4 pm this afternoon- Tylenol with codeine. She's moving in the right direction! We heard that they might remove her large chest drainage tube tomorrow- and they give her morphine for that because it's quite painful. From there, they monitor her for 3 hours or so to make sure that that was a good decision. And then they may kick us out. Prayer for dry lungs and no more anemia would be appreciated.

We have met lots of kids who have never even been home- they came here when they were born and months later are still fighting to get healthy. We feel so blessed in light of these stories. God has answered our prayers in ways that have exceeded our expectations.

We love reading your comments!! Thank you for walking through this with us.

Day 2 - The 6th Floor

Things are a little scarier up here just because we don't have one on one nurse care. Its more lile 4 patients per nurse. The great news is that she hasn't had morphine since 4 am and we are in a great room with one another sweet little girl, a big window and a view. I was able to nurse Abby but we still haven't held her because of her big chest drainage tube. We hold her hand, stroke her head and sing to her most of the time. The doctors came by and said her lungs sounded good. She will stir and cry from time to time... But we are figuring it out. We can't believe that just over 24 hours ago she had open heart surgery. All in all, she is doing very well. Tonight we sleep in the room with her.

Day 2- On The Move

They are kicking us out of the ICU! It's great news... But we wanted to stay a little longer because the care is so great. Abby is doing well - she took another bottle this morning and is ready to nurse later today! She is a little anemic so prayers for her to not get extremely anemic and need a blood transfusion would be great. Thank you! Grant and I continue to be amazed at our great God who is overseeing every moment of her recovery.

Day 2

Grant and I were able to get a few hours of sleep tonight, popping in on Abby off and on. She still has a large chest tube draining extra fluid from her chest and a line in her neck and arm. She's on morphine and a mild sedative if she gets really uncomfortable as well as a number of meds but she is definitely kicking those legs when she isn't happy. In fact, she kicked out the iv in her foot. This was after I was able to give her her first bottle!! She downed 2.5 oz in about 3 minutes- I'd say the equivalent to a slider! We are on our way to that cheeseburger!! The nurse also said if things continue like thus there is a chance she will get moved out of the icu today. She is getting such great care I am not in a huge hurry for that to happen but it will mean she is doing great. Night one was a big success! I know.... Pictures coming soon.

Surgery update 3

She is off the breathing tube!!!!! Hurray!!!!

Surgery update 2

We just saw Abby and while she has an insane amount of wires and tubes coming out of her, she is doing really well. It's going to be a long few days of recovery but she's already coming in and out of anesthesia and kicking in protest to the tube down her throat. A good sign!

We love you, our whole-hearted girl!!

Surgery update !!!

2am - abbys last feeding
530am - arrived at hospital
840 - (long wait to get taken to surgery... We almost got bumped) she went into surgery. We weren't supposed to get an update for 3 hours at least
11am - surgeon found us and said it went absolutely great, she does not have heart block and in an hou we can see her.

Her lungs are really wet (a result of the "huge" VSD the surgeon said) so prayers for them to dry out would be great. She will be on a breathing tube for awhile but....
She's safe! She's out of surgery! We are so relieved and happy! Photos and more updates after we see her. I am so humbled by your outpouring of love and prayers. Thank you!!!!

Surgery update 1

We're Ready!

Okay, people! We spent all day at the hospital doing paperwork and all the pre-op business including a chest x-ray. I believe they want to compare the before and after x-rays to be sure her heart was repaired correctly. Here is a picture of Abby at the beginning of the morning as well as one of Grant, mid-McMuffin (he said it was on sale and he just had to get one -- ewwwww.) before we headed off for blood work and lots of waiting before a physical.

Right now, everyone at our house is taking a nap including Grandpa, who just got into town a few hours ago. We just got the call that we are ready to roll for tomorrow. We have to be there at 5:30am (whew!) which means that we are the first and only surgery tomorrow for our surgeon (unless an emergency comes in, which very well might). Thank you, God! There is always the chance that we could get bumped, however, so prayers for that, please.

Abby has to fast from about 2am on... so it should be an interesting night seeing that she doesn't eat very much at one sitting and eats rather frequently. Once we get there, they will give Abby a little gas, she'll drift off and then, the surgery should take 3-4 hours. We assume it will take another hour or so for her to get settled with her nurse in the ICU and another few hours or so to wake up, where we'll be there, waiting for her. She will be intubated for 24-36 hours, we've been told, after that. We can talk to her and touch her before the tube comes out but we can't hold her until then. So, we go to bed tonight with peaceful hearts, praying against fear and infection and bacteria and heart block... and knowing that God holds all of this in His mighty hand. Thank you to all of you.... we love you!

The Night Before The Day Before

Tomorrow morning at 9am we'll be at Children's for our pre-op. As I mentioned, Abby gets some blood work done, gets a physical and we fill out all kinds of brain numbing paperwork. After that, we wait until tomorrow night for the final call telling us what time surgery will be. We're hoping she'll be first up -- at an ungodly hour -- and that we don't get bumped due to an emergency. We had a great weekend with her and can't really believe that "this" week is finally here. It's time for a whole heart, baby girl....

Thank You!

Today was a big day -- some wonderful people spent their time giving their blood at Children's Hospital. I even heard that Cortney and Kati ran into each other while they were giving. I love it! We can't thank you enough for caring for us in this way. Grant spent a few hours giving platelets and now, we await Monday for our pre-op work up day. Abby gives a little more blood, gets a once-over (to make sure she isn't sick) and at that point, we'll hopefully be cleared for surgery. Have a wonderful weekend!

Did You Know...

When we sat in our pediatrician's office when Abby was 5 days old and he said, "I hear a little something...." Grant looked at me and said, "Is this like what Marlowe had?" Grant went to college with Marlowe's parents and she had her heart surgery a few years ago. Her parents started informing all of us about CHDs and I was surprised by many of the facts that they shared. I thought I'd share some of the "awareness" with you. For instance, did you know...

-- Congenital Heart Defects are the #1 birth defect and the #1 cause of infant death related to birth defects.

--1 out of every 100-150 babies born will have a CHD. (1 out of every 800-1000 babies born has Downs Syndrome).

--In the US there are nearly twice as many deaths due to CHD than that of all forms of childhood cancers combined. Yet there is 5 times more research for pediatric cancer than for CHD.

--There are approximately 35 know Congenital Heart Defects.

--With advances in medicine, many of those born with CHD will have their first and sometimes only corrective surgery before age 2.

(Most facts are from the American Heart Association and March of Dimes)

So, thank you Larry & Debbie for preparing us before we knew we needed to be prepared for this. It's good to know that Abby isn't going down this road alone and it's true that the surgeons really did make us feel that they do this surgery all the time.

A Bruin Future

Yesterday, Abby had a special guest come to the house! Her "Auntie" JJ came down from Northern California to give her some in-person love before her surgery (and to have a glass of wine with me). To Grant's great pleasure, she came donning this mask in order to make every effort not to give Abby any Nor Cal germs. :) She also brought a glimpse into Abby's future -- a UCLA cheerleader uniform in a size 2. I figure Abby can wear it for the next 5 Halloweens! Hurrah!

The Second Biggest Question

After "why now?"(see previous post) most of you want to know how we're doing. I'm so thankful to report that after numerous visits to our local cardiologist where I thought I was doing great, but would leave in tears, after our visit with the surgeon, I am feeling completely peaceful and hopeful about Abby's surgery. Somehow, in the midst of those 4 months of constant feedings and feeling the weight of her surgical success hanging in the balance of a few pounds, I began to feel like "that" phase was never going to end. I knew it would, literally, but emotionally I just couldn't get my arms around "the next step." Now that we have a date on the calendar, my heart is flooded with hope! Many, many times during those months, I read Spurgeon's wise words :

"Who told you that the night would never end in day? Who told you that the sea of circumstances would ebb out till there should be nothing left but long leagues of the mud of horrible poverty? Who told you that the winter of your discontent would proceed from frost to frost, from snow, and ice, and hail, to deeper snow, and yet more heavy tempest of despair? Don't you know that day follows night, that flood comes after ebb, that spring and summer succeed winter? Then hope! Hope forever! For God will not fail you. Do you not know that your God loves you in the midst of all this?"

So, thank you all for your concern. We know that October 13 is going to be a very long, hard day, but we are deciding to trust God -- this is HIS problem to solve. The even better news is that Abby is none the wiser...and happy as can be.

The Truth

I told Abby today that she only has to live through one more Monday with a broken heart. She looked at me with that intense gaze... so I'm sure she understands. :) As I begin to force myself to think about the details of her surgery, I am constantly reminded of the verse that says "Finally, brothers, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things." – Philippians 4:8. I have a friend who says that sometimes just thinking about what is "true" is enough to handle and I'm finding this true of the surgery. Instead of thinking about all that could go wrong, I'm thinking on what we do know to be true and not speculating on the "what ifs". Ahhhh......

All Clear

On Friday we found out that Abigail's blood work came back perfectly normal. This is great news namely because it means we won't have to meet with a hematologist, which could've delayed surgery. Along that same line, we know many emergencies come through Children's Hospital and we hope that one of them doesn't bump her surgery date and time. We actually do not find out with absolute certainty that her surgery is on the 13th until the night before. For now, we're extremely thankful that so far....things are lookin' good.