Katie Mei's First Birthday Party

Since the five of us were finally back together again this weekend, we decided to celebrate the girls' birthdays while we had the chance. Jay had to leave again today (Sunday) so we pulled off a little birthday party yesterday. It turned out very sweet, and they both enjoyed it. Merrilee was very gracious in sharing her celebration with her little sister.

I let Merrilee make the cake, since she loves to cook. I bought a lemon cake mix and lemon frosting, and Merrilee prepared the mix. Then I let both girls lick the batter. Katie Mei wasn't too impressed at first, but after a few licks, she was happy to grab the scraper from me and finish it herself. Merrilee is already a pro at beater-licking, so I didn't need to coax her at all.

After cooling and decorating the cake, we headed out to the Mexican restaurant for dinner. Katie Mei is definitely a Mexican Fan, and really loves her tortilla chips. She devoured the white chili sauce with gusto, as well.

We came back from dinner and settled down to eat cake and open presents. I made the cake with six single candles on one side for Merrilee, and a number 2 candle on the other side for Katie Mei. Merrilee did the candle blowing first so Katie Mei could see how it's done.

After about the third chorus of the Happy Birthday song, it was Katie Mei's turn at the cake. She stood right up and starting huffing at it. She's had plenty of practice at blowing bubbles, and I always have to tell her to put her chin up to blow so she actually hits the bubble wand. So last night she starting blowing (she goes Fffff-ffffff, making the "f" sound when she blows), with her chin held high. I had to realign her so she was pointing down more toward the candles. Unfortunately, her short little Fffff puffs aren't quite long enough to blow out a candle, so I had to give her a little help after about the seventh try. She was convinced it was her own doing. She kept us all laughing and in stitches.

Then, of course, we had to get the classic face-in-the-cake photo. But Katie Mei just doesn't like to get messy. She was not going for the entire cake-munch shot, but she did manage to leave a little mouth imprint in the frosting. Then we all settled in for a slice.

We learned something new about Katie Mei. She doesn't like cake. At least not lemon cake. She took a couple bites of frosting, then proceeded to make faces at her dad as he tried to get her to eat more bites. We saw a few new faces on her that we hadn't seen before. We won't do lemon cake next year.

She finally forgave Daddy when he let her crawl into his lap and play tickles for a few minutes while the rest of us finished our cake.

After the cake, we went to the living room to open presents. She got a really darling Melissa & Doug surgeon puppet from Aunt Paige and Uncle Allan. At first she was a little taken aback by this "new person", but she warmed after after a few minutes. It really is a beautiful puppet. I love Melissa & Doug toys.

When it was Merrilee's turn to open presents, Katie Mei wasn't quite ready to stop. The very first present Merrilee opened was immediately appropriated by Katie Mei who didn't even think twice about taking it and walking off with it. We got another laugh out of that, too; well, everyone but Merrilee did.

After all was said and done, we had enjoyed another wonderful day together as a family. This weekend was such a blessing, and we were all sorry to see Daddy leave again after church today. We will miss him.

So I am now at home with my three lovies, ages 2, 5, and 6. I have to get Merrilee back on her home schooling schedule so we can get this year finished and be ready for second grade, and I have to get Jacob's school physical and shots scheduled for his first year of kindergarten at the Charter School. It's going to be busy, but it's such a blessing to have them all home and together. Right now they're downstairs playing together and keeping one another entertained. Despite the noise and mess, and even a little fighting, I'm just so happy. God is good. All the time.

May you all experience the blessing of knowing how precious your family is as well, and know that every moment you have together is a gift of grace that only comes from the hand of God.

Love,

Petrie

She Is Home!

Katie Mei was discharged yesterday afternoon and we got home around 11:30 pm last night! It was a long day, but worth every moment! She slept through the night, the short five hours of it, before she woke up at 6:30 am. I have to give her meds every four hours, so it wasn't a solid night of sleep for me, but I am just so glad to have her back that it's nothing to me to get up and prepare her doses for her.

She seemed very excited to be home, which surprised me. She was home for six weeks-six days, and was in the hospital for six weeks-four days. So it was almost equal time in both places. I wasn't sure how she'd handle the transition, but she flew right to her Fridge Phonics last night and started the ABC song. She screamed at the cat, and then challenged him to let her pet him. She found her own diapers and got one when she needed changing, and jumped right into Merrilee shoe bin this morning to try on Merrilee's church shoes. I don't think we'll have any problem with reintroducing her to home life! She was really thrilled to be back in the bath tub this morning, since sponge baths aren't quite as much fun, and when I left her to play for a few minutes (I was ten feet away across the hall talking to her, not leaving her unsupervised!) I walked back in the bathroom to find she had rewashed herself and was covered from neck to toe in suds and the bathwater was white with soap. It took a few extra minutes to rinse her enough so she wasn't slippery anymore! She is so happy to be home.

I can hardly wait to get Merrilee and Jacob home now. They will be so glad to see Katie Mei again, and I know she will be delighted to have them to play with.

Thank you to those who have faithfully prayed for us over the past six weeks. We are truly grateful for the outcome of this surgery, and give God the praise for all He's done.

Love,
Petrie

Confusion in Happy Land

I have no idea. Jay called today and said there was no drainage over last night. Yesterday there was too much drainage to talk about pulling the tube. As of later this morning, it's out. I am confused. And very thankful. But very confused.

I want to again say thank you to those of you who comment, encourage, and pray for us. Now we wait and see how she tolerates the lack of an exit for the fluid in there.

Love,

Petrie

Not gonna happen

They're not pulling the drain tube today; too much drainage as of yesterday.  And a cath is being scheduled for Monday.

I am in the valley.  I feel crushed, hurt, angry, and betrayed.  I know things could turn around anytime, but I just don't even feel like I have anymore hope.  I have been told over and over by the "professionals" that drainage always stops, and I believe them.  But right now that just doesn't comfort me.  I am going into the blank zone where nothing even seems to matter anymore.  I don't want to hear any more good news because I won't believe it, and I don't want to hear any bad news because I've heard too much and there's nothing I or anyone else can do about it anyway.

So we're back to just repeating the past weeks over and over again.

The Latest

After a couple days of craziness, I think things might be settling down. I came home on Sunday to take care of some school work and teach my class today. I also had to take care of a few other odds and ends around the house, so I've been busy. I'm supposed to go and register Jacob for kindergarten now.

Jay called last night and said Katie Mei's regular cardiologist wanted to schedule a catheterization for later in the week because Katie Mei's drainage was around 160 ml. I asked Jay to please check with the nurse because the drainage has been much lower than that for the past several days and I was afraid the doctor (who has only showed up about three times in the past six weeks) was not reading the chart correctly. Sure enough, the attending cardiologist of the week came in this morning and confirmed that yesterday's drainage was around 42 ml and that they would plan to pull her drain tube tomorrow (Wednesday) morning.

So that's where we are. I'm elated that we're at the point of pulling the tube, but I'm also on pins and needles because pulling the tube leaves us no back up if things go badly. Of course, they could take her in for an emergency procedure like they did last time and put in another tube, but outside of that, she's on her own.

Please pray with us that we're at a really good place in her recovery to take that drainage tube out and see how she does without it. Pray she tolerates the fluid that remains in there, and that she will stay stable enough for a few days so they'll let her come home this weekend.

We are missing Jacob and Merrilee something awful now, as well. We won't bring them home until Katie Mei is home, so that's another reason to pray that she'll be home soon.

And finally, please pray regarding all the follow-up care she'll need at home. I'm going to have to give her medications around the clock, constantly monitor her for any signs of distress, and make sure she drinks enough fluids to keep up with the fluid she loses due to the huge doses of diuretics she'll be on each day. She's presently on three different diuretics and is given them each twice a day. If she doesn't drink enough fluid, she'll dehydrate very quickly.

And here are some photos from the last week and this week.

Love,

Petrie

Little Pleasures

Despite the fact that Ms. Princess woke me up at 3:45 a.m. and screamed if I tried to lie back down, I managed to stay awake all day.  I got laundry done early (like before 7 a.m.), got a shower, and even took a walk during her nap time.  I ventured out farther than I've ever gone, but it was still only about 8 blocks from the hospital.  I went to the U of Penn bookstore and found some children's books.  She wasn't completely impressed by my selection, but she really hasn't shown much interest in books yet anyway.  She'd much rather watch TV.  She had a TV in her room in the orphange.  I didn't see a single book there.  She'll have to get used to books in our family.  We're a library kind of bunch.  One of the books I bought was one that Merrilee had as a toddler.  It's a Maisy Mouse paint book.  The paints are on the insides of the front and back cover, and you just use a wet Q-tip to moisten the paint to color the pictures.  She was interested in that for about 15 minutes and then moved on to something new.  

The Childlife workers are celebrating Volunteer week and had the children decorate hands and put messages on them for a bulletin board they're making.  I made a hand that said, "Thank you for playing with me so my Mom could take a nap."  Think they'll guess it wasn't Katie Mei who wrote that message?  These dot paints were really neat.  I think I'll buy some when I get home.

After crafting, Katie Mei found an Easter Peeps bubble blower and a dish of suds on the kiddie table.  I showed her once how to use it, and when she got the grip and squeeze down pat, she was a bubble-blowing nut.  She used up all the suds and then smeared the drips on the table.  It was fun for her, and I love the fact that she's finding some activities that she enjoys.  Playing with the toys just seems to drag her down.  She's into interactive things, not static toys.  Unfortunately, much of what she likes requires other people to be involved.  This is going to be hard when I get back to homeschooling Merrilee and Katie Mei can't occupy herself.

Bubble-blowing fun.

Toward evening, one of the Childlife employees came by with a wagon full of stuffed animals.  She said they were donations (and there had to be at least 30 of them with a bunch more still in the playroom!) and she wanted Katie Mei to come and pick one out.  So she chose a black kitty and a went for a pink unicorn, too.  Tasha told her to take both of them since they had so many.  So our pile of animals continues to grow.  When we went back into the room, Katie Mei put the kitty on the couch and started playing with it, making it walk and meow.  But somehow, the meows turned into barking.  Hmmmm.  Then she immediately grabbed the two animals to her and started singing to them.  I grabbed my cell phone and got the last of it on video.  It was so cute.  She's not much of a stuffed animal fan, so this was a surprise.

And on a final note, I think I know what her problem was at 3:45 a.m.  She's got a molar coming in on the bottom left side.  Just what we needed; a toddler who is teething in the midst of recovering from heart surgery.  I've got her back on Tylenol around the clock for the night...I want to sleep!!!

Love,

Pet

Just tryin' to lighten things up

Coloring is not her favorite thing to do, but sometimes I can get her to spend a few minutes occupying herself with crayons or markers.  Mostly she likes to take the pens from the nurses and scribble on their notes.  She pulls this trick on all of them.  She reaches out her hands and acts like an innocent, curious baby who doesn't know what a pen is.  And as soon as they say "Oh, you little cutie.  Do you want to see my pen?" she snatches it away and starts scribbling on the nearest paper surface.  Fortunately she hasn't learned yet that it's possible to scribble on other things.  I have a feeling she'll figure that out at home on our walls or something of more value than paper.

Katie Mei acting shy, but enjoying the xylophone bells during music sessions in the playroom.  She doesn't just jump into any activity; she always stays back from the crowd and observes for awhile before deciding she's willing to participate.  She's going to be our deep thinker who investigates matters thoroughly before making decisions.

She's a very curious child and she learns routines and rules very quickly.  Nurses are always amazed at how cooperative she is when they have to do any procedure on her, including painful stuff.  She cries during blood tests and when her chest tube is flushed, but never fights or pulls away.  She offers her leg for blood pressure checks, lifts her arm for the thermometer in her armpit, offers her foot for the pulse-ox tape, and takes all her meds very well.  She's got the use of most of the medical equipment down pat.  I think she could probably do her own echocardiograms now if she had to.

She would spend hours on my lap each day if she thought I'd let her.  This is a common position for us (minus the psychedelic light thingy on her forehead), and she loves to climb on my lap.  That vinyl-covered couch is my bed we're sitting on.  

 She demands a lot of my attention, and I'm glad she enjoys it--great for the bonding and attachment. However, there are lots of times when enough is enough and she's mad as heck because I won't hold her like that anymore.  She's gotten very possessive of me, and when an adult comes in to talk to me and she wants my attention, she often pouts or starts to cry quietly.  Gonna be trouble when she gets home and I start lovin' on my other two!  

You can see the chest drain box on the floor next to the crib.  That's what I kicked over today!  Fortunately it only dumped out the water from the water seal and not the slimey chest fluid.

We walk these halls for as long as we can before a) we have to get hooked back up to the vacuum, or b) I go nuts doing the loop more than six times.

Singing to her baby. This girl loves to sing.  She has started picking up books and singing, which I imagine came from the few weeks at home when she went to church and saw us singing from a hymnal.  I don't know where else she'd come up with holding up a coloring book and singing toward it.

This is Ms. Naughtiness.  We go through routines like this all the time.  She loves to try to play tricks on me, and even when she makes me mad by doing this, like doing it when I'm trying to change her clothes or diaper, she always seems to get me to start cracking up.  Just watch the devilishness in her eyes.  She's got a streak, and doesn't hesitate to use it.  She's mostly a very happy, funny child, but she can throw a tantrum.  The good thing is that if I get her laughing when she's mad, she gets over the mad pretty quickly.  She has a tendency to always try to do the opposite of what I say, so if I tell her to sit up, it's an automatic invitation for her to flip herself back.  She loves this game and we do it almost every time I put her in the crib.  

Hope you enjoyed the lighter side of things today.  We all need a lift from the weather and the tedium of this hospital stay.

Love,

Petrie