Top Ten of 2011

So it's the end of the year already (how did that happen?) and everywhere there are year end recaps and best and worst lists and so on and so on.  So what's one more?

Our top ten (in my opinion) Not in any particular order (except for number 1):

10. Abby playing soccer in the spring.  She played so much better this year and had more fun.  She scored a lot of goals (not that anyone keeps score!)

9. Watching/listening to Eli playing by himself.  He sings about what he's doing, he uses voices for the toys, he has sound effects, it's adorable.

8. Visiting my Dad's side of the family in Kansas City in June.  I love when all the little cousins (our kids) get together to play, they are hilarious.  I love seeing my Grandma.  I love the excitement of a road trip and staying in a hotel.  It just makes me wish we all lived closer together.

7. Getting the chickens.  There, I admit it, my husband was right.  I LOVE the chickens.  They were adorable as chicks in a box in the corner of the kitchen.  They are hilarious to watch in the backyard.  I love when the neighborhood kids show up at my door in the summertime with a grasshopper in hand and want to feed it to the birds.  I love getting fresh eggs.

6. Abby starting Kindergarten.  She is so adorable with her little backpack on.  I love hearing about what she's learning about and her new friends.  I love to watch her learn to read and write and do math and learn about the world.  I'm a little sad she is growing up, but I'm learning to embrace it.

5. The fall women's Bible Study at church.  We read "Feminine Appeal" by Carolyn Mahaney.  I got to know some other women at our church a little better.  I only wish I could have made it to more of the actual discussion groups, but I loved the book.  I hope we do more studies like this in the future.

4. This one is for the kids: Abby and Eli going to Disney World with my parents and my Dad's side.  Boy do I wish we had been able to go with them, I really looked forward to it all year long.  I know they had a great time because I've heard all about it.  I'm happy whenever my kids are happy.

3. My third and final pregnancy.  I know I complained a lot about being hot and uncomfortable and a lot of the pregnancy was bathed in worry, but I have always really loved having a little life growing inside of me.  The anticipation and excitement of "what are we having?" "when will she be here?" "who will she look like?"  Yes I'm huge by the end of my pregnancies, but I love having my big preggo belly and feeling and seeing the baby moving around.  And I learned to trust God more so than ever before during this last pregnancy.  My husband and I grew closer together, I learned to appreciate my family and the little things more.  My extended family, my church family and my work family rallied around me and encouraged me.

2. The birth of Hannah Joy.  I love giving birth.  Is that weird?  This one was particularly exciting, the doctor almost didn't make it!  I have only experienced that unbelievable rush of love three times in my life as I held my newborn for the first time.  I cannot explain it, but I will always remember the feeling.

1. Bringing Hannah home from the hospital for the second time!  I am so thankful for the surgeons, cardiologists, intensivists and nurses that cared for Hannah during her surgery and hospitalization.  I was thrilled to bring her home for her first Christmas.  And that first Christmas with my whole little family was wonderful.

Happy New Year everyone!  Here's to an exciting 2012!

Welcome to the circus

Well we're back home and back to the chaotic life that I love.  I'm sorry I haven't updated the blog, but we brought Hannah home last Monday (the 19th) and I hit the ground running.  Where we left off after the last post:

The first few days after her care conference (my last post) Hannah was just hanging out not eating very well, she still had the NG in place and they were talking about sending her home with it since they felt I could manage it.  She accidentally pulled it out on Saturday afternoon and suddenly starting eating fantastic!  She really hates that thing in her nose I guess.  So they sent us home Monday afternoon.  It felt so great to walk out of the hospital with her after a month.  It was snowing and I wonder if she wondered where on earth she was going.

Our very loving and creative friend Anna made this welcome home sign for Hannah! I left it up for three days so all the world (or at least our cul-de-sac) could see our good news!

That night we had a little family dinner with the grandparents to celebrate Hannah coming home and also Abby's belated sixth birthday.  My mom baked a few cakes for me and I tried to make the princess in the dress cake but it is harder than I expected.  It's okay because Abby still loved it and really, cake tastes great even if it's just in a big messy pile on your plate.

I didn't realize Barbie was so tall, you need a lot of cake to make a dress for this lady.

The next few days are somewhat of a blur, I remember laundry and unpacking and doctor's and dentist's appointments and Christmas shopping and preparations all while trying to remember how to be a mother of three again.  Thank goodness for pizza delivery and my mother.  Jeremiah is back to working five 8 hour day shifts so he is home in the evenings for dinner, I couldn't be more thrilled, it's so wonderful to sit down as a family for dinner together.  And he's here for bedtime routines and everything!

Christmas was fantastic.  I was really worried that Hannah might spend her first Christmas in the hospital and it really bothered me.  I'm very sentimental and all I could think of was how that would ruin the magic of Christmas for my other two kids.  I will have to post a whole thing on Christmas.

I decided to finally take Eli's pacifier away the day after Christmas.  Did you know that the day after Christmas Santa comes back to the houses of all the 3 year old boys and girls who still have pacifiers and he takes them back to all the little baby elves at the North Pole, then he leaves the kid an extra present.  Then the kid goes to bed and cries all night long for his pacifier, then he's fine the next day.  I wish we'd done this a few years ago.  Next up, potty training.  Poor Eli, he's kind of the forgotten middle child right now.

Eli's "bubbas" waiting on the front step for Santa to come pick them up.

Eli is really starting to get into "boy" mode.  Light saber and a sword.

As far as Hannah goes, she's still struggling with eating and weight gain.  We are going to see the cardiologist again on Friday morning for a weight check.  If she hasn't gained enough weight then we will end up back in the hospital for the weekend.  Praying that doesn't happen, but I'm packing a bag before the appointment tomorrow morning.  Hannah has been struggling with a little stuffy nose, but she is generally eating better than she did last week at this time.  Also, she has started sucking her two fingers on her right hand, just like her big sister.  Doh!

Happy New Year!

Today was the care conference.

This morning all the docs had their care conference where they discussed Hannah, among other things.  It seems that they are all in agreement that they do not want to take Hannah back into surgery!  Phew!  The concern was could they actually fix the tricuspid valve and if they got in there and found they couldn't then what would they do?  They feel that she can be managed with medications and go home on them with follow up.  She may still need surgery down the road someday (months? years? we're not sure) or she may never need surgery, I'm still praying for the Lord to heal her tricuspid valve.

The concern now is that she is not eating very well.  Over the last four or five days Hannah has taken in less and less formula and has lost a little weight.  She has had a swallow study to check her ability to eat (excellent!) and the speech therapist has been here for several feedings and tried different nipples.  Hannah can't get the first ounce of her bottle down fast enough and then it's like she just stops and looks at me like, "done."  Sometimes she gets really fussy and starts crying and I wonder if her tummy hurts.  She will love me sharing this with everyone when she gets older, but Hannah has always been a  gassy kid and it's even worse now!  She is on a lot of constipating meds and I think that combined with her increased fussiness and her difficulty burping during feeds has made her a VERY gassy girl.  During her feeds she seems to get uncomfortable and I'm thinking eating may start a ripple effect in her gut, then she gets fussy because of the pain and cries even more, it's a vicious cycle.  I'm planning to look online to see if there is some little tummy massage moves I can do to try and help her.

This morning she got another NG (feeding) tube placed in her nose, so far she's doing okay with it.  We try to feed her and then the nurse can give her the rest of the feed thru that.  The hope is that she picks up her oral intake and can go home soon.  There is a possibility that she may end up with a G-tube if she can't eat everything and start gaining weight.  That's the little port button thing that goes through her abdominal wall right into her stomach.  We just have to see what the next several days ahead bring us.  I'm not sure how long the docs are willing to give her to see if she can improve her eating, but I'm really getting anxious to get home before Christmas.  A few weeks ago I bought Hannah some Christmas jammies and I would like her to wear them at home on Christmas Eve.

She is sleeping happily at the moment, no small miracle since she has decided that sleeping during the day is for losers.  She gets to distracted by everything and then gets overly tired and really fussy.  Despite all that I can still get her to smile sometimes.  My cousin and her family stopped in briefly on Sunday and Amy came back to meet Hannah for the first time and the baby started smiling at her!  I look forward to the time when we are home and my super happy smiley baby is back.  You think I'm posting a lot of pics now!

It's complicated

So today marks 25 days in the PICU, Jeremiah started a little tally on the white board in here.  Talked to the cardiologist and surgeon this morning, like I do every morning and feel a lot more informed.  Hannah had an ECHO on Thursday, the cardiologist that looked at it feels that her tricuspid valve is leaking a moderate amount.  This isn't really new information, but their explaining it to me is.  The thing with all the information and the various docs that are involved in Hannah's care is that it takes awhile for all the info they all throw at me to sink in, and I piece stuff together a little at a time.  I believe that is a gift from God so that I'm not so overwhelmed at once.  

I will be an expert in cardiology before this is all thru.

So pray that Hannah's leaky tricuspid valve fixes itself.  Or at least that she can tolerate it and improve enough to go home.  If she improves (eating better, weaning off oxygen) she can go home.  If she continues to hover in this state where she is not eating all the time, needs oxygen, can't seem to get ahead of the complications than the surgeons might have to go back in and try to fix her valve.  That's MIGHT.  It's not on the books yet, we're just taking it a day at a time (like we have been) to see how Hannah does.  If she needs surgery it may be soon, it may be in a few months or a few years, it all depends on Hannah.  I'm just beginning to understand this now.  It's kind of complicated, I know.  I wish I had taped the surgeon's explanation this am and I could stream it up here, I wonder if he would mind coming back in and doing the whole thing for me again!  There is a very nice diagram on the white board, I wonder how often he has to draw it for parents.  

The tick marks are in the upper left hand corner, I know there are only 24,
we add the new one at the end of the day.  I don't know what 44 is, but
isn't that a nice drawing of Hannah's heart?

If you have questions feel free to send them my way, I will try to answer them.  If you have a minute pray for the leaky tricuspid valve, I might have to nick name it.  

But I don't wanna blog (whine, whine)

It's been over a week since my last post, sorry about that.  I started out so good with frequent updates on Hannah, but the last few days I've just been putting this off like I used to put off writing papers in college.  We've kind of slowed down in the exciting positive stuff happening.  She had her chest tubes out last Thursday and has kept them out (so far), but not a lot of other progress has been made.  If anything we haven't really moved forward or backward, but just kind of got stuck and now we're completely stalled.

Okay, so I also must admit that I'm feeling a little sorry for myself and that might be clouding my judgement, but not by much, I think the docs are frustrated too.

Before Hannah's chest tubes came out the doctors decided that she didn't have a chylothorax after all.  It seems she had a leaky RA line that had slipped out of her right atrium and as they were infusing her lipids into her IV it was leaking out into her pleural space (that's in her chest) and then draining out the chest tubes, looking very much like chylos.  Whoops.  Funny huh?  Yeah, not really.  But I was glad to hear that she could eat regular breast milk again and didn't have to keep her chest tubes.  So out they came and she started eating regular food again.  Then over the weekend she got really fussy and fought all her feeds, stopping after only a few sucks.  We were worried she might have developed reflux or an allergy or something, turns out she was in withdrawal, whoops again.  Sunday night she got some methadone (yeah, like ex-heroin addicts in treatment programs are on, no stigma there) and started doing better.  Long story short (to late) she's back to not eating very well and they have put her back on the fat free breastmilk/formula combo.  She still has some fluid around both lungs, it may be chylos, maybe not, time will tell.  She doesn't have reflux and the speech therapist that did a swallow study on her yesterday said she has one of the best swallows she's seen in awhile, aww thanks.  She started vomiting after her feeds overnight so that's no good, not sure why.  She is currently out on a field trip to interventional radiology getting a PICC line, that's a peripherally inserted central catheter, so she can get lipids and other fluids and have blood drawn without having to poke her so much.

I'm over it.  Really, over it.

I wanna go home.  Before Christmas.

I spent yesterday and this morning sulking but I know it could be worse, she doesn't have cancer, she won't need more open heart surgeries, at least I will get to take her home again someday.  I'm just discouraged that this all seems to be taking so long and she seems to develop random complications that delay her going home.  I'm ready to go as soon as she is, now to just get Hannah on board with that plan...