Rainy Day Reflections

It's sprinkling outside. A bit chilly. Overcast.

House is quiet.

I can't help but get wrapped up in my thoughts this blustery morning.

Jill's therapist just left.

Andy is on his way back from Henry's cardiologist appointment.

It's a strange feeling to know without a shadow of a doubt that I live a blessed life...but still feel sad inside too.

When little girls dream about their grown up lives, their husbands, their homes, their children...they never think they'll be "that" mom.

You know, the mom whose son has a cardiologist and whose daughter has a neurologist.

2 out of 3.

You never think you'll ever need to visit a Children's Hospital.

Or keep appointments with physical therapists.

Or quarterly echocardiograms.

The kids are fine. Don't get me wrong.

Henry's heart looks even better than it did at the last appointment. Jill is meeting all of her milestones. Lucy...well, she's just focusing on outweighing each of her siblings. :)

I really try to not worry about my kids. I honestly don't want to expend a single ounce of energy worrying about things that may never happen...but the fact is, I do.

And I hate it.

I don't want to make mountains out of molehills, but I also don't want to be the ostrich with its head in the sand either. It's a weird balance.

I'm not gonna lie. Every. single. day. I worry for my little Jill.

Some days worse than others.

She is fine and not showing any major issues at this point.

But the reality is that it's all a big, huge, fat, awful waiting game.

We know that she had brain trauma. What we don't know is if there are any lasting effects and/or what their severity may be.

We just have to wait and see how she progresses. Does she crawl? Does she walk? Does she speak?

The answers will all come in time.

But no sooner.

And that's hard.

My conversation with the physical therapist:

"So, do you see any reason to believe that she might not walk?" "No, it's too early." "So, you mean that it's possible that she might not be able to walk?" "Yes it is possible." "Is it possible that she might be perfectly fine?" "Yes." "Do you have a guess either way?" "No, it is too early to tell anything at this point. We just have to wait." "So you have no idea?" "No."

Clearly she's been trained to deal with parents like me. Parents who desparately want an answer sooner than it is feasible.

Now.

I had a bit of a panic attack the other day. Thinking that "ohmygosh, if Jill can't walk, we'll have to move! we can't live in a 2 story! but we can't afford to move! and then we'll have to retrofit the house and widen all the doorways and make an accessible bathroom and get a different car with a lift..."

Silly I know. Worrying about tomorrow's problems that may never come.

Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own.
-Matthew 6:34

My brain knows these things. But my mama's heart can't help it.

I guess it's just surreal to not be *guaranteed* that your little girl will one day be tearing around the house like a wild banshee.

She may be perfectly fine, but my reality is that that isn't a given. She may not. I don't know.

Only God does.

And I know that He has great plans for her. And Henry. And LuLu. And our little crazy family.

For now, I just love on my littlest girl and do what I can to keep up.

But I won't lie.

With every twitch and every little grimace, my heart sinks into my stomach and I cringe. Oh how I wish those little glimpses and reminders that everything isn't *quite* normal would just go away. She doesn't do it nearly as much as she once did, but they are still there. They haven't gone away completely.

And it makes me sad.

And while I hate not knowing what life will bring for us, it gives me hope. I have hope that this will all just be a phase we look back on.

Like I told the therpist the other day:

"I really hope this is just a giant waste of your time."

"I do too."

And if not, we'll keep on keeping on. Because regardless, I wouldn't change a thing. I don't understand it all, but I know that there is purpose.

And when I find stories like these, I just think:

"If SHE can do it...surely I can."

I'm Pretty Sure

A warm summer Sunday afternoon +

Daddy washing the cars +

Clothing optional +

Dirt +

Water +

not getting in trouble for it =

A 2 year old boy's version of Heaven.


(grandmas may want to click some of the photos to see the full extent of his muddy grossness)

Who on EARTH...

...decides it's a good idea to potty train their 2 year old little boy this weekend...

...when they also have not-quite three week old twins???

Yeah, that would be us.

Because we are gluttons for punishment.

But really, there are a few reasons this *might* be a good time:

1) Henry is pretty ready. He is aware of what is going on.

2) The kid has a diaper rash like you would not believe. He sits in his poop...and knows it. It's out of control and the only way I can figure out how to heal his little bottom is to get him out of diapers once and for all. (Although Joanie's secret weapon of Baby Aquaphor + Burt's Bees Diaper Ointment is AWE.SOME. Thanks!!!)

3) While the girls ARE little, the good part is that they sleep a lot right now. My thinking is that the longer I wait, the more awake they will be...and the harder it will be to deal with potty training and two 6 month olds??? I could be wrong...

4) Frankly, we are averaging about TWENTY FIVE diaper changes a day between all three kids. (Granted, the vast majority are the girls). It would be nice to whittle that number down...even if it's just a little bit...

This may be a miserable failure of an experiment.

I'll keep you posted.

How's Henry?

I wasn't quite sure how Henry would react to having not one, but TWO little creatures here taking away the attention that has until recently, been solely his. I am so happy to say that he absolutely ADORES his sisters. He wants to hold them and pat them and is sure to let us know if one of them is crying. In fact, the other day, when Jill was crying, he found his Stinky Corner Blanket (his most prized of all possessions), and put the stinky gross corner on her and patted her. This is HUGE. Huge. I love my girls, but that boy just melts me.

Soothing Lucy. I just love how this picture shows him trying to pat her quiet with his grubby little hands!

My family. And I couldn't imagine it being more perfect.

He can't seem to say Jill's name, but he says Lucy...only it sounds like "Juicy". Super cute. He seems SOOOOOO grown up to me all of a sudden compared to the girls. It makes me happysad (a word invented by my friend Lindsey).

Unfortunately, he does sometimes act out for mom and dad. He threw himself on the floor the other day and tends to have melt downs fairly easily the last few days. Luckily, it's not TOO bad, but you can see that he is dealing with the transition in his own way, and I would rather it be this way, than for him to be aggressive towards his sisters.

My sweet friend Lisa came by yesterday and took some pictures of the kids. The babies were com.plete.ly uncooperative. I felt so bad. But you can see that the photos are still darling! Thanks Lisa!!! (You can see more of the photos she took on her blog...and don't forget to check out her FANTASTIC jewelry!!!!)

As for me, I feel great today. Apparently a lot of my icky feelings were due to the infection/fluid build up and now that it is being drained and I'm on antibiotics, I'm feeling like a million bucks. Okay, maybe not quite a million, but at least fifty thousand bucks. I actually changed my first girl diaper today! I know, I know, I'm totally spoiled. Family has been in town helping and has pretty much handled all of that so that I can focus on healing and mastery of nursing two at a time.

Happy Birthday Little Man!

I'm two!!! My mommy says she has no idea how that happened!

Daddy took me to Toys R Us and we came home with my very own toolbench and tools. And they live in the garage so that I can help Daddy whenever he is working!

He also bought me a basketball hoop...and I have been practicing my bank shot diligently.

Grandma and Great Grandma came up for my birthday and bought me my very own birthday cake! And I got to blow out the candles...I tried to not spit too much...I promise!

HAPPY BIRTHDAY to my sweet little boy!

Chores

Am I breaking child labor laws when I assigned a twice daily chore to my 23 month old?

How about if he *likes* to do it and thinks it's a game?

How long do you think I can play off that feeding the dogs is a ton of fun?

Whatever, for now, it keeps me from having to do it, so I'm gonna go with it as long as I can!

Henry's Heart: Post Op Appointment

(This is a picture from Easter, but I just hate posting without photos)

We had our first appointment with the cardiologist since the surgery. Everything looks fantastic and the doctor is very pleased with the results. We have to go back in 3 months and after that, it will be longer and longer between visits. He doesn't think that Henry will need to have the surgery repeated, but that if it were to be needed, it would likely be when he is a teenager and does all that growing.

I don't know the names or units of measure, but for reference, a normal heart has (some) measurement between 1-2. Before the surgery, Henry's was 3.8. Today, it is 2.1.

Also, the pressure difference between the two chambers of a normal heart is about 10. Before the surgery, Henry's was 70. Today it is 16. (He said that it is impossible to get it completely to the normal range, but that this is so close, it doesn't matter).

(It's funny, I'm usually really particular about knowing the units of measure and exactly what things are, but in this case, I don't so much...I guess I'm most concerned with knowing my son is better!)

He said that he will always have a murmur (which is just a sound, not a condition), so to be prepared that doctors for the rest of his life will probably make some comment about it. But not to worry.


On the way home from Santa Barbara, we had to re run over a deer on the highway. Blech. It was one of those things where if we swerved, we might have swerved into a semi in the lane next to us or rolled, so we had no choice but to go over it. SOOOO glad we drive an SUV!!! SOOO glad it was Andy driving!!! Nasty though. Gotta go to the carwash.

It's really pretty simple

Farm animals you can feed for free +


A $0.98 stick of blue rock candy +


Stealing the rest of mommy's butter pecan ice cream cone +


A bubble gum machine +


Artistic self portraits +

Cousins coming to play for the weekend +

Who take you to the park and give you more attention than you know what to do with=

A PERFECT WEEKEND.

Entry Site

We pulled off Henry's bandages today.

Awful.

Terrible.

Ugh.

The can do heart surgery through a pin-prick hole, but they can't come up with adhesive that doesn't practically rip the poor kid's skin off????

"Owie, owie, Daddy! No, Daddy!!!"

I was nauseated. The kid was shaking in pain.

Ugh.

Anyway, I thought I would take a picture of the entry site.

If you click the picture to blow it up you can see better...

See that little dot of a bruise? I think that's where they put in some kind of needle...

Now go just to the left of that dot...you'll see a teeny tiny cut.

THAT'S the entry site.

No stitches, staples, nothing.

Can you BELIEVE they can do heart surgery through a space that small???

And can you BELIEVE that only 15 years ago this same thing would be open heart????

Un-be-liev-able.

(I posted this because it was interesting, but also because I remember being so frustrated that I could never find any info or photos relating to this procedure on the internet...so I 'm hoping that maybe some other mom can find this helpful and help ease her nerves as she prepares her own child...)

Surgery Side Story

"I didn't tell you this yesterday because I didn't want to freak you out...but when you were napping during Henry's surgery, one of the other moms in the waiting room got a phone call from the OR...her baby was having heart surgery to repair a hole in her heart...it was supposed to be just like Henry's surgery...just a cathedar in her groin...and apparently something went wrong and they were having to do emergency open heart surgery and it would be at least another 3-4 hours..."

Thank you Andy for having the wherewithall to not tell me this yesterday. And thank you Lord for having me asleep during this phone call...

I only post this because it reminded me of the seriousness of our ordeal.

I certainly didn't want to make things a bigger deal than they needed to be, but I also didn't want to forget the gravity of my son's heart surgery.

Before the surgery, sometimes people would say things like "well, at least it's not a big deal..." or "oh that sounds pretty routine..." I know they meant well...they were likely trying to reassure me or make me feel better, so I'm not saying that they were purposely belittling the experience. But, I always felt a *tad* frustrated at those comments.

I knew that his valvioplasty (?) was a relatively "simple" procedure with relatively low complication rates. I was infinitely grateful that we were able to go the "easy" route. I didn't *really* worry too much about complications...but I did know that IF something were to go wrong...it would go REALLY wrong. There was really no middle ground. Either it was going to go smooth as silk (which thankfully it did), or it was going to go horribly wrong.

This was my son's heart. A vital organ. You could go from "simple procedure" to losing your child on that table in a matter of minutes.

I didn't freak out about this too much, I knew the statistics, but in the back of my head I knew it was a possibility. It doesn't happen often, but it happens to some people...and I desperately didn't want to be one of those people.

I often prayed: "Please do not have the doctor come to me in the waiting room with his cap in his hand and looking at his feet..."

With Henry's boundless energy today it's been almost too easy to forget about yesterday's events. But I am humbled at the reminder that we were very blessed, and I don't want to forget that.

We have no idea whatever happened to that little girl. I'm really hoping that she ended up okay and other than a few stressful hours and a big scar, she'll be just fine.

It is done.

And it feels wonderful.


Our day started at 4:40 a.m. We showered, ate a quick breakfast and headed out.

We got to UCLA at 6:30, were admitted and called to the prep area in a flash. Henry was scheduled for surgery at 7:30.

I want you to know: my biggest fears for the day weren't really related to the surgery itself. I was confident in the doctors and the procedure. I was just really sad to think of handing my precious boy to the doctors and watching them walk away with my boy screaming...or him being hysterical while they put him under. I just worried (a lot) about him being terrified of the process and us being unable to explain to him what was going on and why. I am ECSTATIC to report: it never happened.


We changed him into a hospital gown and then they gave me a little syringe of some red liquid to give to him. They said that in about 10 minutes he would get loopy. And loopy is an understatement!!! I have never wished to have the video camera so bad in my life! His eyes were half open, all glazed over and everything was HYSTERICAL to the kid. He giggled and laughed at everything as if he had just smoked the biggest joint known to man-kind. Andy and I laughed so hard at him. I just said "Son, I better not see this face in 15 years!"

When the anesthesiologist had called me the night before to ask some questions, I had asked if it would be possible for me to sit with him until he was completely under. He said he would check, but parents aren't typically allowed in the cath lab...


Well, I'm glad I asked because they let BOTH of us in the lab! Luckily, Henry was so high that he didn't even care that they were laying him on a table and sticking him with stuff. He just laid there looking around. We got to stay there until he was totally asleep. It was so nice to see how easy it was for him and I believe it was instrumental in keeping my stress levels to a minimum.




We left him and went to the cafeteria, had some breakfast, and then hung out in the waiting room. I was even able to nap for 40 minutes. Before we knew it (about 2 hours), the nurse called to say that the procedure was over and had gone well...and that they would call when we could go see him.

The surgeon came down to see us in the meantime and said that the valve was actually more narrow than it had been a month ago when he checked in his office. He also said that it was really pliable and responded well to the ballooning...and reminded us that just 15 years ago, this same procedure would have involved full open-heart-crack-your-chest-open-surgery!!! Praise God for medical advances!!!

About a half hour later, they called the waiting room again and said they wanted "only the mom" to come up. Andy's face fell. "Gee, I guess I'm not special enough." "Apparently, they think you were only a sperm donor...sorry babe."

I rushed up to the recovery room and found my little man groggy and attached to what seemed like a million machines. He was fine. Within minutes, he was trying to rip off all of the IVs and connections...and crying the most pitiful mournful cry of "Daddy! I want my Daddy! My Daddy!!!" We were supposed to stay in that area for an hour, and they only allow one person because it's so small. The nurse took pity on my child, so she arranged for us to be moved to the main recovery area in a half hour instead so he could see his dad.

And here, was BY FAR, the hardest part of the entire experience. I would have never guessed it.

My instructions:

Keep your not-quite 2 year old, very active boy, laying flat on his back with his leg straight...for the next SIX HOURS.

Right.

While Henry was a little groggy at first, and maybe not quite his usual self, he wanted nothing more but to sit up in the bed. After about an hour, I asked if they could sedate him, because seriously, this wasn't going to work. Nope. They couldn't give him anything stronger than Tylenol...we were just going to have to deal. So Andy and I spent an exhausting 6 hours absolutely FIGHTING with an increasingly alert and energetic child to lay flat.

Awful. Absolutely awful. Time crawled.



He did finally take a 30 minute nap...but it didn't last nearly long enough...


Finally it was 4:00 and we were discharged. Henry could sit up, walk, whatever he wanted.


It wasn't until we were in the parking garage waiting for the valet to bring our car that I cried. It was over and the relief was incredible. 2 years of cardiologist appointments every 3 months, constant worrying about impending surgery, worrying that his heart wasn't working right, wondering how he would do when the day came...all of it was over. I was overwhelmed. And thankful beyond belief...

The girls were still baking away, unscathed by the ordeal. I didn't stress out like I thought I would. Henry wasn't even in pain. It was easy. Too easy.

God is so good to us it's ridiculous.

We spent a few hours in the hotel room we had booked and decided that it would be best to just head home that night. Let Henry wake up in his own crib, and us in our own bed.

We pulled into our driveway at 12:15 a.m.

This morning, I found Henry jumping in his crib. In fact, he's jumping on our bed as we speak. You would never, in a million years, know that he just had HEART SURGERY less than 24 hours ago. Unbelievable. I think he might be a little sore later today, but for now, he is bounding around like a crazy man without the slightest hint of pain...

...the only hint of surgery is the bandage on his groin, a band-aid where his IV was, and a hoarse little cough from having the tube down his throat.

Really, think about it: 24 hours ago (exactly as I type) someone was TOUCHING his HEART. Not his kidney, gall bladder or other non-essential organ. But his HEART. And he is fine. More than fine.

PRAISE GOD!!!!

What you can do...

...lots of people keep asking if there is anything they can do to help...cook meals, etc. But at this point, I'm not sure that we need that. The doctors tell us that recovery is relatively easy and doesn't last long. If I find that a meal would be helpful, I'll be sure to let someone know! Really!

But, what you CAN do is say a little prayer for us in the coming days. Specifically:

-Traveling mercies. That we are safe both ways.

-For an uneventful and successful surgery.

-That the girls stay cooking and aren't affected by the stress of their brother's surgery.

-That recovery really IS easy and short!

Thanks in advance for all the love and support! We very much appreciate it!!!

House Arrest

Henry's surgery is in just a few short days (Thursday to be exact) and in an effort to keep him healthy and sickies free, I have put him on strict house arrest. He hasn't been allowed to go anywhere...so if I have to run an errand, either Andy has to do it, or I wait until he's home so that he can stay home with Bubble Boy.

Luckily the weather has been nice so we spend a lot of time in the backyard, so he doesn't seem to have cabin fever yet. I, on the other hand...

Interesting update on his heart surgery:

We were told that we would have to stay overnight for monitoring...but apparently Henry is the first on the surgery docket that morning...which means that he should be having it done by about 8-8:30 a.m. (we have to be at UCLA by 6:30) Assuming he doesn't have a reaction or things don't look wonky, we could be discharged late THAT same afternoon! (I guess that originally he wasn't going to be first on the schedule so that's why we were going to have to stay overnight). This is fantastic...I was wondering how on earth I was going to get ANY sleep in a hospital chair 31.5 weeks pregnant with twins...now it doesn't look like I have to worry!

My OB insists on me taking a copy of all of my prenatal records and even my hospital bag. Just. in. case. I don't *think* I'll be going into labor, but I'll bring everything with me and hope that my preparedness means I don't need it after all (because you know if I leave it all at home is when I'll need it!).

Just Like Daddy

Henry is in LOVE with his Daddy.

No, seriously. I mean, he LOVES LOVES LOVES his dad.

He watches so intently whenever Andy is doing something and wants to copy *everything* he does. Whether it is out in the garage working on a car, unloading the dishwasher...even feeding the dogs, the kid wants to do it if his dad is doing it. If mom is doing it? Nah, not so much. :(

The last few times that Andy has mowed the lawn, Henry has been really scared of the mower. I thought that a good way to maybe overcome his fears would be to get him his own lawn mower so that he can help! Worked like a charm!!!


It is really important to us to get (and hopefully keep) our kids involved in tasks around the house. I know that for now, it's all a novelty and soon enough, helping daddy will require the pulling of some teeth, but we figure that we will embrace this helpful heart while we can. With a family of five (and likely six eventually), our kids will HAVE to help...whether they like it or not...because being a part of this family is going to have to be a team effort.

So, we make it a point to include Henry in all of our tasks even if it means that it takes 20 minutes to unload the dishwasher, or that there is pancake mix and batter all. over. the kitchen counter, or waiting for him to wake up from a nap before the lawn is mowed. Besides, it makes for really cute pictures! :)