Friday, December 25, 2009
Sunday, December 6, 2009
Thursday, November 26, 2009
Wednesday, November 25, 2009
Sweet Ruby Christine,
We're so thankful for you! You are such a blessing to our family and we're excited to see the little person you are becoming. You are full of life and joy and haven't met a chair or stool or cabinet you won't climb.
You express everything that's on your mind and we never wonder what you are thinking. You are full of compliments and you frequently tell me you like what I'm wearing, or "I love your hair mommy!" You're also a bit of a drama queen...toe stubs and perceived injuries require a kiss from mommy in the exact spot of pain and that lower lip of yours has daddy wrapped around your finger.
You love to dance and sing and do ballet and keep me entertained all day long and sometimes well into the night! Daddy and I frequently wake to hear you singing to yourself at 2 am...only to fall asleep again.
You have brought so much laughter to our family, sweet Ruby. You are, quite simply, the delight of our lives.
We love you!
Daddy & Mommy
Monday, November 16, 2009
Elizabeth continues to be hospitalized (3 times since July, and two of them were for 10 days each!) and we continue to process with her all the things you're facing with Eva. While her experiences don't exactly overlap with Eva's (we haven't had to leave her alone in the hospital since her initial 2 month stay in the NICU.) she is close to Eva's age (Elizabeth just turned 4) and has spent most of her life at the mercy of procedures, drs. and nurses and simply doing what has to be done to make her body better even if it traumatizes her little spirit sometimes. It breaks my heart.
While family oriented hospitals and child-centered care are critical...I've become QUITE demanding when it comes to how we handle blood draws, IV sticks, surgery prep and other necessities...we also spend a lot of time at home and on our way to and from the hospital reorienting her.
*We've found music has been a wonderful tool for us. (We particularly rely on our faith and do a lot of scripture memory and sing songs about how much God loves us, how he will always be with us, how we don't have to be afraid and how he will take care of us. There's a Hermie & Wormie CD about being brave that has been so wonderful and she sings the songs when she's stressed or afraid and I know she's doing her best to muster courage.)
*We use our portable DVD player with abandon when she's going to or at an appointment or has to stay in the hospital. We've found that being able to escape the real world and hide in her safe little space has been really better for her in the long run. She never stays there forever....just when she's coping. That said, we're REALLY careful about letting her watch anything even mildly scary...since she seems so much more vulnerable to feeling afraid....mostly just happy, singsongy things.
*she has a silk blanket that goes everywhere with her, (at home it's just for sleeping, but when we do hospital or dr. stuff she gets it all day long if she wants) I also find that if she's having separation issues, having her Kiki (that's what we call it) with her provides her with a lot of comfort.
*We also do a lot of drawing and talking about procedures...playing Dr. with her dolls, (this toy has been so cool) practicing coping techniques with her dolls..."okay, it's time for your blood draw Dora, which arm do you want us to use? okay, I'll count to three...one two three....stick...owie, owie owie...all done! Wow Dora, you did so well! Did it hurt? do you need a band aid?" we do lots of that. As soon as she could handle it (3ish) I started being honest about where we were going and what we were doing...I felt better about not lying to her, and believe it's built a little trust...She's JUST gotten to a place where she can believe me if I tell her something won't hurt, or there are no sticks or we're NOT going to the hospital, only to Target! :) (However if she's already worked up, she'll freak out even for a weight or height check...so we're still in a window where her understanding of what's going on wavers)
*Finally, we really try to reinforce our presence, our constancy, and her safety...we tell her things like "mommy always comes back", "I'm staying right here the whole time" etc. Elizabeth is VERY concrete, so the more "rules" we can give her, the more we structure and order and routinize hospital stuff, the easier it is for her. When she does get beside herself we also do some calming techniques like taking deep breaths, blowing out, counting to 10 in Spanish, and giving her things to repeat...and having her sing her ABCs..."let's sing our ABCs once and then it will all be over". We let her sleep with her comforting songs on CD when she first gets home if she needs them, we also try to give her lots of room to need to control her environment in the days after a hospitalization. We do jump back into structure pretty quickly, because that's how Elizabeth functions best, but we let her wear certain clothes, carry around her Kiki and have a little more say in how the day goes while we ease back into our old life.
You probably are already doing some or all of these things, but hopefully there's something helpful that you can tweak for your purposes.I know some of it is more for inside the hospital, but the more we can minimize her fear and sense of aloneness there, the easier it has been to come home and get back to normal. We also do a LOT of praying for Elizabeth's little spirit to be protected from fear. I don't know how you'd feel about that, but we believe it's helped protect her mind and heart through some VERY traumatizing experiences and allowed her to "bounce" back and feel safe and at peace much more quickly.
Saturday, November 14, 2009
Wednesday, November 11, 2009
Friday, November 6, 2009
Tuesday, November 3, 2009
The girls had a grand time (they especially loved their second cousins) and we were so thoroughly impressed with their "travel-ability", we thought we'd turn around and drive them to Cincinnati next week for a Turner Syndrome Clinic appointment for Elizabeth. We arrived home Sunday evening, completely exhausted and totally unprepared to start the work week...but really, really thankful for our family...and air conditioning, and in-car dvd players, and a 70 mile an hour speed limit and lunchables, and dr. pepper...
Wednesday, October 28, 2009
Wednesday, October 14, 2009
Our dear little bug, You are 4 years old today! You are such a blessing in our lives and a constant source of joy and delight. You are God's gift to us and we are so thankful for every day we share with you.
We'll like you for always
As long as we're living
Our baby you'll be
Happy Birthday Sweet One.
Mommy, Daddy and Ruby
Friday, October 9, 2009
Wednesday, October 7, 2009
Sunday, September 13, 2009
We're home! A day early! We're thrilled and exhausted and looking forward to sleeping in our own beds tonight. On Thursday Elizabeth lost her IV and it took SIX tries before they were able to place a new one...she was traumatized to say the least and we drew the line and said if she lost another one, they'd have to figure out another option for getting her meds into her. We were able to get the team to agree that if she lost this one, we'd have 7 days under our belts and it was probably safe to go home on oral antibiotics. Then while the nurse was changing her tubing this morning, it clotted off and that was all it took to get the discharge orders rolling! We're so thankful for your prayers, for meals from good friends, for visits and a wonderful arrangement for Ruby to spend the week with her buddy Sophie, for amazing nurses who adore Elizabeth and gave her such gentle (except for the IV incident) care, and that once again God has sustained us with his grace.
Here are a few highlights from the last few days of our stay.
~Our friend Adam (who's a Pediatrics Resident at Children's) recommended Elizabeth get seen by the music therapist and she had a wonderful time! It was certainly a highlight of our stay and we're thinking of working with her again in the future
~Ruby's super excited to have her sister home
~Part of Elizabeth's fan club...the nurses who've cared for her this week...they fight over who will get her each day, it's pretty cute.
~Elizabeth was ready to go!
Love, The Harms
Thursday, September 10, 2009
Tuesday, September 8, 2009
We finally got taken off precautions and isolation and made our way to both the playroom and the roof-top garden today! We had a lovely time roaming the halls, and as usual, Elizabeth charmed the nurses, saying, "Excuse me nurse! I need a graham cracker!" and "Okay, I need to go back to my hospital room now, we will see you later."
Monday, September 7, 2009
Today was another good day for Elizabeth. Her cultures are still negative and we expect them to be since she's on such strong antibiotics. We're still on contact precautions, which means no trips to the roof-top garden or playroom, but we get to stay in our private room...technically, since her stool cultures have come back negative for anything infectious, we could be off precautions...but we're not going to bring that up to anyone just in case they decide they want our room. Personally, I think the nurses are in on it but because Elizabeth is such a doll, they're just turning a blind eye. My first clue was that even though she's on isolation, a half a dozen of them take turns coming in to ogle over her. She just charms their socks off like it's no big deal.
Sadly, Elizabeth lost her IV this morning. They typically don't last more than 3 - 5 days for her before clotting off, so to lose it on Day 4 is not surprising, but it did mean an extra poke today. The IV transport team (they're the ones that escort kids in ambulances and helicopters etc. and thus are really good at placing IVs) was available, so they came and got her set up with a new one in no time...on the first try!
We've also learned that once we're done with her current course of antibiotics, she'll go on Penicillin prophylaxis to keep her from getting Strep Pneumonia again. Apparently, this is a common treatment for kids with sickle cell anemia, who also have non-functioning spleens or their spleens have been removed, and it works really well!
On the family front, we're all holding up, but the reality of 8 more days here is a harsh one. We're tired already and Matt and I are a little like two ships passing in the night...Please pray for our stamina.and for Ruby's sense of well-being during all the shuffling this week! By way of encouragement, we had a fun afternoon surprise when two sets of friends came, one with coffee, thanks Amy! And one with dinner, thanks Bronners! For a while, the guys took the kids to the garden and the gals stayed in the room and chatted with Elizabeth...it felt normal and really, really, nice.
Finally here are a few pics from today. Ruby realized she could use some Bible Reading time today too...and then thought she could learn a thing or two about parenting from one of my favorite books. We found the cutest toy for Elizabeth...a little girl in a hospital bed, with an IV pole and removable slippers and lots of other fun things...She had a ball playing with her today and even took her to Dora's playground for a treat. I guess she wasn't on contact precautions.
Thanks for your prayers, they're our lifeline!
Sunday, September 6, 2009
Saturday, September 5, 2009
Because it's a weekend, things move slowly at the hospital. We still don't have a name for the bug yet, so Elizabeth is getting frequent doses of "broad spectrum" antibiotics. The sooner we know what bug we're dealing with, the sooner they can narrow the antibiotic down to something that will treat exactly what she has, and we'll be able to cut a few doses out, so everyone will get more sleep. Right now she's getting 4-6 doses each of two different IV antibiotics around the clock...that makes for lots of day and night-time activity since each dose sets off an "almost done" alarm, then an "all done" alarm and then requires a flush, which sets off an "almost done" alarm, then an "all done" alarm...which in the middle of the night wakes up both Elizabeth and Daddy and means a call to the nurse to ask her to come turn off the alarm. It's NOT a great way to spend ones sleeping hours. Needless to say, we'd appreciate your prayers for good rest for all of us. In yet another act of mercy, our friend Jesse stopped by and brought me caffeine this afternoon and brought me back from the brink. Thanks Jesse!
E's definitely feeling better, though the antibiotics are wrecking havoc on her GI tract and I think it makes her tummy feel crummy. Our biggest challenge is keeping up with our healthy toddler in a germy, room filled with medical devices! Ruby's got energy to burn and we're looking forward to E being off of isolation so we can all head to the playroom. When it's not raining we'll also be able to take walks in the 8th floor garden.
Here are some pics of the girls (this is the best smile I could get...I was being upstaged by Angelina on the TV) and our game of candyland this afternoon.
The girls don't get it yet, so Elizabeth was more interested in collecting all the "tickets" and Ruby wanted to take her gingerbread man for a walk...
Daddy and I managed a fierce game over their heads and Daddy pulled out a win thinks to his mad skills and mommy drawing the candy cane at the last minute...
Friday, September 4, 2009
his mercies never come to an end;
they are new every morning;
great is your faithfulness.
Thursday, September 3, 2009
Last night Elizabeth complained of abdominal pain and had a low grade fever. This morning, her fever began climbing and managed to get as high as 105! Obviously, we took her to the ER and she's been admitted for another severe infection. It's too early to know where the infection is coming from, but there's no obvious source. The doctors (myself included), worry that she's having another bout of bacteria in the blood stream. Time will tell. After looking very sick for the whole day, IV fluids and antibiotics have Elizabeth looking a little better. She was even strong enough be her brave little self, and thank the nurses who drew her blood. Sara is staying with her overnight in the hospital, and unfortunately, the hospital is full enough that no private rooms are available and she's lost her ear plugs!
In addition to praying for Elizabeth's health, please be praying that Sara will be able to get some sleep too.
Tuesday, September 1, 2009
Monday, August 31, 2009
We arrived home safely early Sunday morning after -in the only snaffu of our entire trip- our return flight was delayed 3 hours. The trip was perfect. We came home feeling so refreshed! The girls had a marvelous time with Granna, E's ear infection symptoms disappeared, and for the first time ever they were both completely healthy the entire time we were gone! Thank you so much for your prayers!