Hospital Discharge Day Photos

Here are some photos of LC's Wednesday exit from the hospital.

Before leaving they removed the steristrips that had closed her incision (Her sternum was cut down the middle and wired shut following the heart repair, but the only stitch she had was the one that closed the opening where her drain had been below the incision).

We were impressed with how quickly it had sealed shut and most of the ick around it is sticky from the strips that will wash off in the bathtub!

It took two full wagons to get out of the hospital, but she thought the parade was quite appropriate and would have probably enjoyed the ride on top of it all if she hadn't fallen asleep immediately after her last toy was loaded.

As I'd mentioned yesterday, we took LC with the understanding that she still has fluid collecting in her chest due to her compromised lung performance and we'll have to continue being hyper vigilant of germs at home so nothing settles in her chest to cause an infection in her lungs or surrounding her heart. We felt good about the choice, though, since no change had occurred during her last 3 days of treatment as an inpatient and despite the excellent care she received we think a little bit of uninterrupted sleep may be just the thing to get her breathing back in business.

We had her final shipment of oxygen tanks arrive today, so we continue to accessorize the house in baby furniture that "What to Expect the First Year" book never mentioned...

We are, of course, delighted to do it and just need to move them to the basement so neighbors won't question the chemical laboratory it appears we're setting up in our home. The delivery person for our medical supplier explained that, if one should fall and break at the top, the smallest bottles have approximately 2000 pounds of pressure inside. I'm sure Justin is currently sweating through his afternoon at work as his accident prone wife sits atop the small arsenal of missiles we've had delivered. I expect he'll arrive with a truck load of insulation and padlock to prevent me from unsupervised access to medical equipment when he gets home this evening.

We knew when we arrived home we'd see some changes in LC's behavior due to her improved heart function and, boy, have we...

We spent four months with a baby who slept around the clock and cried twice in our collective memory. During LC's second HOUR of crying last night, Justin asked if we were sure we had come home with the correct kid. She had endured a long day with no nap and was still trying to get over that rascal stomach bug so her fussing was well-deserved but we'd certainly never seen this side of Boom Boom before.

In order to establish she was, indeed, authentically LC we ran a warm bath and plopped her in it. Yep. It was LC all right. She was SO HAPPY to be in a bath tub again and loved having her hair washed and splashing in the water.

Justin asked if she could sleep in it for the night.

She did wake up during the night to be fed for the first time since she's been born and has started expressing more opinions about where she would like to be...She used to be quite happy swinging or laying in her laundry basket but now when there is an open lap to be had she is most specific about wanting to be IN it. (One of my favorite changes, I have to admit...she's an AWFULLY talented snuggler...)

She certainly has an increased percentage of awake time during the day and didn't fall asleep for a nap until 3:30 this afternoon! (She usually naps from 9:00 am to 12:00 and then, again, from 2:30 until Dad comes home around 7:00...)

One of the changes we're most tickled to see are the SMILES we're getting. It's nuts. They used to happen once or twice a day if we were super lucky...now she oozes with them and it is worth every stressful episode of the past 10 days, I assure you.

We're working hard to do whatever we can to get her lungs clear and she spent some good chunks of time this afternoon oxygen free and maintaining good sat numbers. We can't wait to introduce her to so many of her perpetual prayer warriors and can't thank you enough for every sunshine-filled smile we've received since you started...

We're Home...

And I'm exhausted so this will be super short but much longer tomorrow, I'm sure...

They recommended we stay another night, but despite fanatic levels of handwashing and spending 95% of our time in LC's hospital room, LC and I both managed to contract a stomach bug that tortured me during the night and required Justin to take the morning off work...I had hoped to keep LC from getting it from me, but it seems we were afflicted simultaneously...so we decided it would be best to escape before any more significant germies found us.

I'm feeling better this evening, LC is a bit crabby about the situation...looking forward to sharing some of the effects of her repaired ticker...it's been an education that I'm sure will be kicking us in the pants through the night...:0)...we couldn't be more delighted.

We are so thankful for the love and prayers we've been bombarded by and I am ashamed of the number of unread emails in my inbox that I discovered upon our return home. I promise to answer them after a good night's sleep...

Kaityn and Sam, where did you find such a cuddly big bear? I loved the writing on the card most of all.

Hays family we can't wait for a chance to show off those LC ears...oh my gosh...what a hoot...

Sweet dreams to everyone and good night kisses from courtney, justin and the very blessed LC Boom Boom...

Green Light

LC's morning Xray showed no change and her sat levels still fall without oxygen so her doctors have agreed to send us home with oxygen and monitors so she can continue healing there without the risk of picking up any other bugs creeping around the hospital.

We'll wait for her new equipment to arrive and get lessons in using it all and then hopefully pack up and head home when Justin gets off work.

Thanks for continued prayers that her transition is a smooth one and we're competent enough to manage a new set of equipment...We'll keep you posted on the day's events...

Tuesday Update

It is Tuesday, right?

We won't have word yet on LC's lung progress until after her morning Xray, but her breathing treatments seemed to go well and she was deep-suctioned at each of them, which I think will help quite a bit. They did try weaning her off oxygen again today but her stats fell to the 70 range within 10 minutes or so. Dr. O'Brien, LC's cardiac surgeon, stopped by for a visit and said he would consider sending her home on oxygen so we'll see what the floor cardiologist agrees to tomorrow. I think Justin and I are both very comfortable making the trip home as long as we have the tools to monitor her levels and support her if she runs into trouble. I know the environment of home would also be a help in healing for us all.

We have been having daily OT meetings to assess LC's eating status. We try the bottle out and Connie, the occupational therapist, watches and gives suggestions on modifications that may prompt LC to latch to the bottle and feed. We've tried positioning her on her side, placing my hands around her mouth or under her chin, laying a finger across the base of the bottle nipple to keep too much from going into her mouth...everything but dangling the kid from the ceiling but she isn't feeling it. Luckily she isn't forcing the bottle OUT of her mouth, she just bites the nipple between her little gums and wrinkles her nose up tight. Then she snorts out of her nose and starts wacking the bottle with her little mittens. Frankly, it looks like she's trying to kill the thing.
LC seems to be taking the lessons seriously, however, as she's been assigning herself homework outside of her lesson times. Although she refuses to show Connie her secret talent, as soon as Connie has left the room LC goes on a mad sucking spree. She can produce an AMAZINGLY LOUD sucking sound and spent most of the day perfecting both her form and volume. She can literally be heard outside our room at the nurse's station. The nursing assistant actually woke me at one point and said she'd been looking around LC's bed and couldn't find LC's pacifier. "Thanks for your effort, Faith, but the kid doesn't have one. Some kids have imaginary friends. LC has an imaginary binky." The upside, I suppose, is that we'll never lose it.

Connie said some kids never take to a bottle and she thought LC would be one of those. She suggested thickening her formula until its thick enough to spoon into her mouth. LC seemed to tolerate that well enough and we'll try that again. Connie also said that some babies go straight to a cup and showed me some techniques for thickening her formula and using a small medicine cup to feed her with. Pray for patience and you'll find yourself feeding your kid over the course of an hour from the cap of a Nyquil bottle. . .


I don't suppose this post is any longer, as promised, but I'll post some pictures Justin took as a means of compensation. He stopped and picked her up a headband to wear for Mardi Gras. Unfortunately her headband was actually intended to be a hair tie. While we were able to wedge it onto her melon (let's hear it for below average head circumference) after a bit it was beginning to cut off brain circulation so we couldn't risk that accessory for long...

LC's respiratory therapists recommended we keep her as vertical as possible. This is a little tricky since LC doesn't have strong enough muscles to support her head yet, and we can't support her trunk with a hand on her chest. We've done some lap sitting with a pillow and that seems to be popular...

I don't recall the exact wording of the message, but I believe this was taken during an oration LC was delivering regarding her thoughts about her hospital experience as a whole. It's just as well the exact text isn't reprinted as there may be some inappropriate vocabulary involved. We're working on correcting that...

Peeking over her lap pillow...

Celebrating Fat Tuesday...Dad wouldn't let her earn any Mardi Gras beads this year, but he gave her bunches of sparkly bracelets for showing her scar...

Longer Post to Follow

I will post a longer entry when Justin is off of work and on LC patrol...computer popularity slows down then as well and I should have time enough to post some updated photos.

Answered prayers: LC is loved and cared for by very compassionate and attentive nurses who have vowed to call all area Home Depot stores in order to keep Justin from purchasing an oxygen tank and setting up his own LC intensive care unit at home.

LC continues to smile as much as she squawks and her lengthened hospital stay has allowed for more meetings with an occupational therapist to explore some of her feeding issues.

Continued Prayer Requests:
LC's trial run of the oral diuretic was unfortunately not a successful one and she actually needed an extra dose of IV medication to compensate for fluid that collected yesterday. One helpful treatment of LC's lung condition is deep suctioning of fluid and gunk from in and around her lungs. They don't do deep suctioning if the patient is listed as potentially going home, so LC didn't receive any yesterday. Today she'll continue respiratory treatments, increased diuretics and deep suctioning every 6 hours to get her lung back in business. Her respiratory therapist also said that the pain she has coughing and taking deep breaths due to her sternum being opened and wired shut is a significant slow down on her recovery. She's avoiding coughing and deep, inflating breaths because it hurts an awful lot to take them. We'll hopefully see progress as some of her chest pain begins to subside. Unfortunately, she's also being weaned from pain meds, so that may take a bit more time.

Another unexpected development resulted from an echocardiogram LC had yesterday. Before surgery, some of you may recall that we went in for an echo to determine if she had a coarctation of her aorta. The echo revealed a significantly lower blood pressure in her lower body than in her upper and we have seen one of her feet in particular lose blood flow completely for a short bit of time. They've discovered that LC did have a coarctation and it's one that is rare to present itself with the type of septal defect she had. The AV canal correction and PDA were corrected by going through the front of LC's chest, but the coarctation is more near her back and would have been dangerous to address in last week's surgery anyway. We will be following up with Dr. Kaine to see what the plan of attack will be for this new development but her cardiologist this morning did NOT feel they would need to reopen her chest or do any interventions immediately. I am SO thankful and praising God for that one, because I know I could not handle going through all of that again so soon.

LC had a crazy night due to hospital scheduling (What sadist schedules a 4 month old for a 3:00 a.m. chest Xray????) and is working hard to clear her lungs and strengthen up for the trip home. We don't have any speculated time/date when that will be, but we'll definitely update you on any new developments.

Thanks for your continued love and prayers...they've certainly carried us over stumbling blocks that would have knocked us down without them...

Another LC Update...

Today would have been my first day alone on hospital duty, but Nana Cam decided to stay an extra day. It's a good thing she did, since it will give her a little more peace of mind than leaving after LC's rough Sunday.
Her X ray this morning showed no change. Her upper right lobe just doesn't want to fill up anymore. She's had respiratory treatments every 6 hours to try and inflate her lungs, but it just doesn't feel like responding yet. In order to come home, she also needs to be able to take a diuretic effectively through her tummy, but in order to keep the wet under control she's still needing to take her medicine via I.V.
Her cardiac surgeon felt good about discharging her based on her heart performance and correction, but her cardiologist in charge of our floor wants her to stay another day to focus on strengthening her lung. I'm all for that, since I wouldn't have good monitors or oxygen support at home if anything should go wrong.
LC was up quite a bit during the night, but for an altogether different reason than last time...She has discovered the pulse/ox monitor on her toe and figured out that its red light is actually connected to her foot. Thus, she is in charge of its motion and can create her very own laser light show once the lights go out. So that's exactly what she did...for quite a while...complete with sound effects.
We'll find out more about her lungs from her doctors this afternoon and will continue respiratory treatments in the meantime...here are some pictures of LC on the mend...Thanks again for all your continued support and prayers...

In the middle of the night, watching her light show...

More light show...

Just hanging out...

We found a use for those Hello Kitties!

Don't they look pretty?

On the mend...

Extending Our Stay...

Sorry for the late post...my hands have been a bit full this morning. LC and I stayed at the hospital last night and convinced Dad to go home for some much needed rest, since he heads back to work on Monday. That's about all that was required to make sure we had an eventful evening.
The main number that's being watched for LC is the level of oxygen in her blood. Before she was corrected, her oxygen saturation levels were usually in the mid-80's (80% saturated...). She was allowed to stay there, although that number is below where it should be, because increasing the level of oxygen in her blood by putting her on oxygen support would actually accelerate the work load for her heart and we were working to buy as much time as we could for her to grow for her surgery.

Now that her heart is repaired, we should be seeing higher saturation numbers, but the set back with her partial lung collapse continues to compromise things. We tried weaning her from her oxygen yesterday for spurts and in the evening she was able to maintain a level in the 90% range on her own for more than 2 hours. Unfortunately, things didn't go as planned during the night and, even with her oxygen on, she was falling into the low 80's and high 70's. She was also very uncomfortable and struggling to cough up the gunk that's collecting in her chest.

Today she's having a rough go and her morning Xray showed a wet chest that will keep her in the hospital for at least a few more days on an IV diuretic. She's also being weaned from her pain medication because it's keeping her from having bowel movements and those are a chore even without something slowing her down.
She's pretty uncomfortable today and we're praying that her chest is able to dry up soon without catching any of the goodies that are floating around a children's hospital at this time of year. Please continue to pray for comfort for LC as she tries to clear her chest with muscles and an incision area that is still very sore. We're so blessed to have come as far as we have and thank you so much for sticking with us and keeping us in your thoughts and prayers for the final leg of our journey home...

Snuggling Daddy...

...and Nana

Accessorizing...

This one shows the IV in her neck...she still continues to take her diuretic this way and will need to graduate to an oral dosing before she can come home. It hasn't been re-dressed or changed since surgery because it was a NIGHTMARE to start it and there are strict and threatening orders from her surgical team that the sucker needs to STAY PUT. :)

Saturday Update

I apologize for not being able to respond to emails with the time I spend on the CMH computer...I actually haven't had a chance to read them, either....Hopefully wireless will be restored next week at some point and, if we're here, I'll definitely spend a chunk of time getting back to the many of you I've noted in my inbox!

LC's chest Xray this morning showed a wet chest (congestive fluid still around the heart and lungs) as well as a lung that hasn't fully "inflated" yet. She'll be on pulmonary treatments today and tomorrow and continue to be on oxygen. They took her off her oxygen this morning and she maintained an oxygen saturation level above 90% for a little while, but then gradually fell down below where she was before her surgery. We don't mind giving her the time she needs, of course, since we want her respiratory system to be super strong before we head home.

Although Nurse Anna suggested we give Tylenol a try as LC's pain medication today, she's still pretty fussy and uncomfortable around the time her next oxycodone dose is due. We'll keep her on that pain medicine today with longer intervals in between before we take her off completely, since she rests well on the medicine and gets some much needed sleep.

Dr. O'Brien says her chest Xrays improve each day and the goals for LC to meet before she leaves the hospital are graduating from pain medicine and oxygen support and having a clear respiratory system.

We've also met with our OT, Connie, regarding LC's feedings and it looks like we'll go home on the same ng feeding schedule LC arrived on until she's healed a bit. Then, we'll have a swallow study done and see the rate that LC's stomach is emptying, since there's reason to suspect it's emptying slower than it should. Connie said LC may never use the bottle to eat and we'll need to see if taking her straight to spooned feeds is optional or if she'll need to have a g-tube placed until she's in her toddler years. Either way, the end of the ng feedings and toobie may be in sight...
We're excited to be able to focus on something beyond LC's heart repair and will be anxious to report on those developments as well.

Thank you for your continued prayers for LC as we work with her cardiac and respiratory support crew to get her ready for lift off. We can't wait to celebrate a discharge date with you and know your ceaseless prayers and encouragement will be to thank for it...

Quick Update

Wireless service won't be usable until sometime next week, apparently, so I'm sending a quick update via another public computer. Sorry for the space in between posts this will cause. Luckily, I was able to find a more remote computer this evening (baked goods for nursing staff seemed to help in locating it) so I was able to upload a few photos as well.

The most exciting news and development has been our recent move out of ICU and into a room on the cardiac/transplant floor! We left the ICU at 7:00 this evening and are hopeful that LC's able to continue on a positive path toward continued strengthening and healing. We have a 5:00 a.m. Xray to see how her post-operative healing is going as well as check on her partially collapsed lung. She's staying on a bit of oxygen for the time being as well as her pain medication every four hours and it's helping tremendously in giving her the rest she needs to help her recovery.
We are so thankful to report that Day Five brought our first signs of the "old LC" back to us and we couldn't have been more delighted. She spent most of the day throwing her feet over her shoulders and displaying her bottom to anyone willing to look and shared that sunshine personality with everyone who had written her off as Princess Grump based on yesterday's disposition.

Justin and I were so happy to see her feeling better we didn't even mind that Nurse Tina got her first smile and we both collapsed into a Ronald McDonald nap room for an hour this afternoon, more from relief than anything else.

We're not out of the woods yet, but we feel so much closer and can't begin to thank the multitudes of people who have brought her through this week through the power of your repeated prayers. We couldn't wait to share some images to hold when you're helping us send up prayers of thanksgiving...


Sam!!! You were RIGHT! LC loves her fuzzy blanket!! Kaityn, you can't see them, but she has quite a few Hello Kitties underneath it...

Lounging on Dad's lap...still her favorite spot to be...

Yum, yum, yum...

It seems Dr. O'Brien left all mischief production centers fully operational...mittens will continue to be featured in the wardrobe...

Showing off her battle scars...

Way to Go, LC Belle!

Still Blogging from a Shared Computer...

Thank you, thank you to all of LC's heavenly advocates...

LC's central line comes out today!!!!!

This is something we've looked very forward to...She's on a new dose of pain medication that is digested rather than given through her IV, so it takes longer to kick in but stays in her system longer as well. It will allow the PRN of morphine to back off and keep her more comfortable at a more constant level. We're looking VERY forward to that, as we had a capital G grumpy kid yesterday and this morning she is sleeping like a lamb.

LC is also up to the full feeding rate she was at before we came into the hospital and we're very happy about that, too! She has a full belly and has been celebrating with some diaper percussion for her morning nurses...Justin and I know a bomb is sure to follow so we thought it looked like a good opportunity to hit the cafeteria and wish LC's nurses our very best...

We'll post again when we can find a free opportunity...things look promising for a room on the cardiac floor, but all rooms are currently occupied so we'll what the day brings...

Thanks again for all your prayers, request, thanksgiving and praises sent up on LC's behalf...

Another Brief Update...

This afternoon with LC is a little more high maintenance as she's decided she is NOT enjoying her stay and would prefer to be elsewhere. She does NOT enjoy her multiple toobies, wrist restraints and is not going to sleep in case she should miss an opportunity to share her opinions.

Luckily, we have some extra hands on deck today as Grandpa Fred and Grandma Janet came for a visit. They're certainly getting an earful.

We're watching LC's breathing again, as she has returned to the deep belly breathing on one side that we saw before her lung collapse. They have her on her side (another reason for protest) and have suctioned her to try to improve its performance. Her doctor said it may be due to her chest trying to compensate for swelling/pain related to the incision during surgery and she may just be trying to avoid aggravating that area.

Her doctor would like her to stay in ICU for one more night so they can monitor her lung performance and fluids, but if they have more patients arrive in need of her spot they'll move her to a room on the cardiac floor. We'll keep you posted if any relocation occurs and in the meantime are still hoping to get wireless service back in business so we can post some updated photos of LC.

Thanks for checking back with us to see the progress and impact of your prayers...

Short Entry...

I am using a public computer that many people are in line to use, because we're having trouble getting wireless connection here in hospital...

I just needed to update with praise, praise, praise and thanks for many answered prayers...

LC is OFF the BiPap machine...
LC has had her drainage tube removed
LC is off her heart meds
LC is off her catheter and has had a BM AND continued urine output since...

Thank you, thank you for lifting her up higher than we can on our own and surrounding us all with encouragement and shared faith in God's goodness and mercy for LC on Day #4...

Nothing New to Report...

We'll go with a "no news is good news" philosophy and just report that LC is resting very comfortably with her evening dose of Ativan. Justin disappeared for a bit this evening and I'm not 100% sure he wasn't investigating the possibility of obtaining a dose for his wife as well.

LC's kidneys are kicking and I can't celebrate that answer to prayer enough. I think a long, deep nap will be just what LC needs to keep her headed towards overcoming today's stumbling block and the BiPap machine seems to be taking the breathing job of her "to do" list which will hopefully allow for further healing.

Today was probably the hardest for Justin and I as well, so we're especially grateful for the kindness and encouragement you've all continued to show in support of Lady L. We're hoping for a friendlier day four, but we're sure we can face whatever it has in store for us with the support and love we've been continually saturated in...thank you ever so much...

Status Quo

After an afternoon chest X ray, LC's doctors decided she will need to remain on the BiPap machine (thanks for the spelling, cousin Robin!) in order for her lung to continue to receive support. We hate to see her have to come back from additional setbacks but are SO thankful they didn't feel a return to the ventilator was necessary at this time.

LC's also collecting a lot of gunk in her chest that she isn't strong enough to break up through coughing. It's a rotten time of year to have sticky stuff collecting in your chest, especially when we're surrounded by lots of patients here due to respiratory infections. It's awfully thick and difficult to suction out without some coughs from her, so continued prayers for LC's respiratory system, strength and healing are ones we need most right now.

Her kidney function continues to be steady and we're so grateful the additional diuretic doses are keeping her fluid levels in a good range.

Thank you, thank you for continuing to keep LC's name in your heart and on your lips...

Day 3 Afternoon Pictures...

Here are some Day 3 Photographs...

Here is LC showing off her leggings of the day...Dad picked pink hearts and they're quite a hit.

LC's still receiving oxygen support but the blur at the bottom is her foot in motion, on its way down from being up by her ear. She's sleepy and sore but you wouldn't know it from the waist down...it's been pretty constant motion this afternoon...

Even elephant noses look better with the proper accessories...

Lunch Time Update

LC will remain on the bypak machine (elephant trunk) to try and avoid returning to the ventilator. Prayers that we can keep LC off that ventilator, since we were so excited about being off before...

LC's returned to two of her heart med drips in order to improve her circulation. She had cold hands and feet, which wasn't usual for her, so they'll see if that improves blood flow to her extremeties...

PRAYERS ANSWERED...

WE HAVE URINE PRODUCTION!

...and a sizable amount, at that. My list of worries had begun to grow, so I was delighted to see her catheter bag filling late this morning after her additional Lasix dose.

LC will have another chest Xray to see how her lung is responding to the bypak machine and the reduction of chest fluids. The goal will be to remove her from the bypak machine and bring her back to independently breathing, but we're happy to give her rest and a break as she works to heal her heart and lung.

Thanks to those praying for little Mia as well. She's a swollen bug this morning and has swollen around her ventilator too much to consider removing it. That makes things a bit uncomfortable for Mia AND her mom, so keep them in your thoughts today as we hope Mia's swelling reduces at the site of her surgery...

Rough Night

Prayers, please...

Last night LC had a partial lung collapse. We noticed lots of grunting sounds when she breathed and she had started breathing with her belly again. During the night her oxygen levels fell and her heart rate rose from 120 into the 190 range. A chest X ray this morning showed the lung collapse and the new elephant-looking accessory is in place to support her breathing and try to correct the problem.

LC's kidneys have also not kicked back in yet and her diuretic dosing has been increased from every 12 hours to every six. We knew she'd come out of surgery with a heart that was mostly corrected and her struggles would be in her other systems' response to surgery and recovery. While her heart is maintaining and doing its job, she's struggling a bit in her respiratory and renal systems and is in need of prayers for strength and healing today...

We'll keep you posted on her progress...

Ending on a Sweet Note...

Nurse Mary Kate didn't want that darn catheter to be the last thing we remembered from our second day, so she found JUST the fix...

Two Steps Forward...

...and one squirt back.

Prayers for LC's kidney function, please...she hasn't produced any urine since about 2:00 this afternoon and had to be placed back on the catheter this evening. It took three unpleasant attempts with four nurses and 3 catheters but they finally got the job done.

They'll try another dose of Lasix (LC's current diuretic) and then may also see if an additional diuretic Rx will help stimulate some urine flow. The catheter DID reveal and drain urine from her bladder which was a blessing, since it meant impurities, etc. were being filtered out, but that final step is an important one and will need to be something she can accomplish without the catheter in...

Also, our friend Alayna has, once again, found a friend for us in ICU! Fortunately for her, she gets to stay home this time, but she sent us her good pal, Mia, to be a neighbor just a few doors down. The best part is that Mia is joining her family the same way LC joined us and it's been awfully nice talking with her Mom while Mia snoozed a bit...Please keep little Mia in your prayers as well...we'd feel selfish not to pass her name along to such powerful prayer warriors! Mia is a few months older than LC and had surgery to remove a cystic hygroma and scar tissue from an earlier surgery at Children's Mercy this morning. Mia will need to stay the night and tomorrow as well, since they need to watch her closely for infection. She's more alert and aware than LC and having an awfully sad evening that is NO fun for her parents to watch, I'm sure, so they could all use prayers for peace and healing for tiny Mia.

We're starting to feel a bit guilty or, at least, annoying in our repeated requests but we've been amazed at God's response to your prayers and can't think of attempting to hope or move forward without them...

Sweet dreams from the bug...

Day Two Photos

Here are some photos of LC's 2nd day...I'll start with tamer ones in case some fan club members have queasy stomachs and don't feel like viewing more graphic ones that will be posted at the end of the entry...

This is the room Justin and I stayed in last night. It is the entire room but we were

extremely grateful to have it. The floor also has two public restrooms with showers we could use this morning. The rooms are provided by the Ronald McDonald charities for families with a

child in the intensive care unit. When LC's moved to the cardiac floor we'll be

able to stay with her, but while she's in ICU we spend our days in the waiting area or

cafeteria when we aren't visiting her. It's extremely great to have a place to come that's directly in the hospital but also allows us to have privacy and a place to shower and rest.

I spent most of the night clinging to the edge of bed as Justin worked to force me out of it. A good deal of time was also taken up winding my way through the Labyrinth that is Children's Mercy Hospital trying to figure out my way back to the PICU. Luckily, they also allow rooms to be available from 1 to 4 for naps, as needed, and I caught a very helpful power nap on sleep number 85 for an hour or so this afternoon...

This is LC's med tower. Each monitor is responsible for monitoring the

drip of a different medicine. If you'll look closely you'll see only one monitor is

still on and being used. That's the dopamine for her heart and will continue into this evening.

She'll also continue to be given morphine for pain.

Here's a close up of LC's restraints...they'll be staying on as long as her

drainage tube and central line are still in place.

Waking up a little bit...

Here's LC getting some well-deserved sympathies from her favorite fan...

Here's a close up of LC's chest...the blue tube at the bottom is draining fluid from behind her heart and lungs and will need to be removed before we can

officially pick LC up and snuggle her again.

Here's our rock star without her ventilator! Way to go, LC!

We'll continue to send pictures as we can and are looking forward to featuring photos of LC being held...of course, those will be of Dad holding her since he's jockeyed for position every time we enter her room. It's also her favorite spot to be, though, so I guess we'll let it slide...

We feel so blessed to have LC surrounded by your prayers and encouragement and can't thank you enough for perpetually sending them up on her behalf...

Afternoon Report

LC's off the ventilator!!! She was able to have the tubes removed and, so far, is keeping her oxygen level up breathing on her own. She does have some oxygen help being delivered from a tube under her nose, but nothing as invasive as the ventilator.

LC's been able to get some nice, sedated rest now that they've taken her off her sedative medication. Her doctors said she'd stored most of yesterday's dosing in fatty tissue (WHAT fatty tissue???) and is finally metabolizing it and getting the benefits.

Around 2:00 her eyes opened up and she's been looking around in a rather drugged and random sort of way. (Not unlike her mom after a child-sized dose of Benadryl...) Her blood pressure did go up a bit and that was attributed to experiencing pain, so she was given a dose of morphine and has started to snooze again.

LC has been running a fever this afternoon that spiked at 102.5 Her doctors haven't done bloodwork regarding it, yet, and are hopeful that it is her body's response to some of the trauma it experienced in surgery and they've been able to slowly bring it down with Tylenol this afternoon.

ANSWERED PRAYERS...
THAT VENTILATOR IS OFF and looking to stay that way as long as she's able to stay in the semi-conscious state she's in now comfortably. It's a big hurdle for LC and a big sigh of relief for mom and dad...
LC's DOWN FROM FIVE MEDICINES TO ONE and she will most probably be weaned from her dopamine later on this evening.
LC'S FEMORAL LINE is being removed...one toobie down, just a few more to go...
LC IS RESTING COMFORTABLY and still managing to make her dad feel adequately flirted with, even in her medicated state.

LC's laying peacefully on her back right now, arms splayed out to her sides, just basking in all the sunshine you're sending her...thank you for the appeals you're continually making on her behalf. We hope you're experiencing some of that sunshine, too...

Lunchtime Update

LC's catheter and temporary pacemaker wires are gone. MANY of her meds have been taken off and she's moved down from receiving 90% oxygen through the ventilator to 28%.

Her ICU doctor, Dr. Allen, came in and said he'd like to attempt removing the ventilator. Brave parents that we are, Justin and I chose this time to head out to the waiting room and update the blog (i.e. hide from the visual trauma of the tube removal in order to lessen impending parental guilt complex)...

LC's face looks a little less puffy, but she is still having more dry diapers than they would like to see, especially now that the Lasix (diuretic) has started.

She is DEFINITELY coming out of sedation and her eyes are opening and druggedly swirling around as she's trying to come to the surface. She absolutely knew when Dad came to visit, though, and her eyes shot open and she turned to lock 'em straight on him. (I have lost him forever...) Her hand shot out and clamped right down on his fingers...I could almost hear her asking him to take her to snuggle on the sofa to watch the action adventure movies mom prohibits when she's around...

We've got a long way to go, but your prayers have brought her farther than we ever imagined we'd be at this time on day 2. We have heard some talk from doctors of moving LC out of the ICU if things continue to go well by tomorrow, but we'll see what the rest of the day brings.

Thank you, thanks, thanks for continuing to lift us up and carry us through...

Morning Update

LC's night was relatively uneventful, but she's super puffy this morning and will start back up on the diuretic and heart medicines she was taking before her surgery.

LC's blood pressure dropped this morning, and her nurses wanted to push fluids to increase it, but Dr. O'Brien took her off two of her heart meds instead and wants to see if that will improve her BP rate.

PRAYERS ANSWERED...
As I left to shower this morning a cardiac nurse was removing the temporary pacemaker lines that have been in LC's chest since surgery. Her ICU doctor felt the irregular rhythm readings could have been a faulty monitor setting because a junctural rhythm they'd indicate is usually faster than the one shown on the actual print out of LC's heart rhythm. This means the temporary (and permanent) pacemakers aren't being regarded as potentially necessary anymore and LC's doing a nice job of setting a good cardiac rhythm.

LC's ICU doctor felt like the weaning process from the ventilator could begin today and said the degree LC was trying to breathe on her own was positive and a good sign. They stopped all sedation meds at 9:00 this morning, but don't expect any immediate results from that since her metabolism is slow. She'll spend the next 24 hours coming more and more out of sedation and the respiratory therapist will be in to continually measure her conscious, independent breathing levels.

LC's catheter is being removed today and her fluid output will be measured by weighing diapers. This should be more comfortable for her and one less tube to jostle or pull as she's turning somersaults in her hospital bed.

We'll do our best to post some pictures later on today, although it's being forecast as an ugly Tuesday with some of the events scheduled for Miss L. Prayers please, for her comfort and her nurses' patience as she does her best to recreate a cyclone of plastic tubing and monitors in her room today...also for success in her attempts to breathe independently and have her ventilator removed in the next day or so...

Good Little Monster...

LC continues to be the Tazmanian Devil of the PICU. Her night nurse moved her arm restraints so instead of being on opposite sides of the bed she restrained both wrists on the same side. She said it was a "can't beat 'em, join 'em" strategy since LC was going to lay on that left side whether they liked it or not. The position looks A LOT more natural for her and she seems to appreciate the gesture.

They started a new sedative that strictly sedates and isn't intended to alleviate pain. The night nurse said they reserve it for their Downs babies and their professional football players.

LC's PROGRESS as ANSWER to PRAYER...
LC is doing well in maintaining a low blood pressure, so they'll begin weaning her off her blood pressure meds during the night to see if she's able to stabilize her BP without aid from the medications. This is a welcome sign of progress as it begins to reduce the 9 medications she's currently on...

LC seems to be working to breathe on her own and her night nurses have lowered the input level of her ventilator since she isn't requiring a higher oxygen dose due to the amount she's able to contribute on her own. Tomorrow will still be rough, but we're happy to see any indication that she's on her way to being ventilator-free...

CONTINUED PRAYERS...
LC's renal system is beginning to slow down more than is adequate to rid her body of excess fluids. Her night nurses said this is fairly typical of patients who came in on a prescribed diuretic and they anticipate LC being placed back on the diuretic she's been taking for the previous four months. While this sends her medication total in the upward direction, we've anticipated continuing the diuretic and heart medications she came into the hospital with, so we're comfortable with the medications and are happy to see something in her treatment plan that isn't accompanied by a learning curve...

LC's heart rhythms continue to be irregular and the temporary pacemaker is still a possible intervention although they're not using it now. The rhythm pattern created by a contraction of her right atrium isn't showing up on occasion, but she doesn't show signs of distress or impact to her blood pressure during those times of irregularity so they'll wait to see what impact those irregular rhythms have on her overall status before using something to help regulate her heart's conduction.

It sounds like the individual most in need of prayer tomorrow (outside of LC, of course) is the poor, unassuming day nurse that will be assigned to her case. Apparently Dr. O'Brien is very predictable in his request to bring his patients out of sedation once the initial 24 hour time period is up and that means Wild Thing will be toobied and free to contort herself without influence from chemically induced wooziness. While under sedation this evening the night nurse found LC with her feet wrapped up in the tubes beside her forehead, so her day nurse has quite a day in store...

I may need to get a few hours of rest myself...tomorrow may be an "all hands on deck" sort of day...

With constant thanks for continued prayers...ch

No Photos This Time...

When we last visited LC we found her in restraints, with her arms tied to the sides of her bed. Even with her arms tied she was still bent over, nearly backward, with the back of her head arching back toward her heels. Her arms are horizontally fixed, but those noodle legs are headed in every which direction and toes are tangling up wires and tubes into a jumbled mess.

It's a pretty yucky thing to watch, since she's straining against LOTS of tubes that are sewn into their spots. They assure us she isn't moving because she's in pain, though. They say kiddos with Down syndrome generally metabolize sedatives much differently than kiddos without, and LC is an exceptional example of that! While they usually sedate most kids her size on a four hour schedule, they're needing to sedate LC every HOUR to keep her still. Even then, she's proving her toobie pulling talents run deep and manages to grab and tug at all her countless tubes even when she's supposed to be deeply under.

While LC's acrobatics aren't worrying her nurses they aren't a visual treat and the restraints are hard to see even though we KNOW they're keeping her safe and medicated and well.

We were assigned a room in the Ronald McDonald family rooms and are now drawing straws over who gets to set the sleep number on the twin bed we'll be sharing. I'm not concerned, as Justin will most probably fall asleep within the first 40 seconds and I can crank his 50 back up to my desired 85.

PRAYERS FOR TOMORROW...
Her liver performance continues to be slightly abnormal. Her doctors are waiting to see if reduction in swelling and fluid congestion improve her liver function and reduce its size.

Tonight LC began showing signs of abnormal heart rhythms. These may be caused due to swelling and her heart may be conducting impulses at the steady rhythm but unable to communicate it through layers of swollen tissue. We've been told she may need a temporary pacemaker if the abnormalities continue and decisions about anything more permanent will be made if the difficulties continue when her swelling and inflamation subside.

Tomorrow's biggest challenge is the plan to begin weaning LC off the ventilator. Despite their enthusiasm and energy while sedated, her nurse warned that kids with Down syndrome typically turn into lumps when it comes to breathing on their own..."They move all over when we don't want them to, and when we ask them to be awake they immediately fall asleep..."

In order to test her readiness for the ventilator, they'll need to bring her out of her sedated state enough to experience what's going on around her and to be conscious enough to attempt breathing on her own. We've been told it will be difficult for LC and watching the process will be an unpleasant one for us as well. Please pray for patience for us all and peace for LC Belle as we try to cross the hurdles that will bring her out of ICU...

These are the milestones we'll be working toward:

• Independently breathing without the ventilator
• Setting and maintaining the pace of her heart without the pacemaker
• Being weaned off continuous feeds of various heart medications and maintaining healthy heart function without them
• Feeding independently
• Removal of drainage tubes, central line and various other wires and contraptions

Your prayers have been a physical force that carried us through LC's surgery and the hours afterward. Your encouragement has overpowered the fear and anxiety we were wrapped up in when this day began and allowed us to see hope in the potential pain tomorrow will bring.

You've taken ownership and stock in the heart beating in LC's chest and we can't say enough about how sweet it will be to fall asleep surrounded by the power of your prayers and resting in amazing grace...

Posting from Exile...

We managed to be excused from LC's room on our 2nd visit this afternoon.

We went in to see her and she was sleeping and resting like a good girl. I thought it would comfort her to hear her favorite bedtime song. Unfortunately, I'd underestimated her enjoyment of the tune and it sent her into a flailing spree that shot her eyes open and sent toobies flying everywhere. Her PICU nurse suggested Mom "back off" a bit and Justin sent me to sit in the plastic chair behind her tower of beeping machinery.

Not long after, Justin sat down in a recliner he found nestled against the toilet in LC's room. The nurse felt it necessary to help him move the chair and demonstrate how to recline it. Unfortunately, Justin's attempts to set the chair back into an upright position were awkward and violent enough to bring her out of her desk chair again, leaving her post at documenting LC's vital signs to pull Justin out of his pleather trap before he propelled himself across the room.

After he'd left the chair the nurse subtly suggested we visit the Ronald McDonald waiting rooms where they had beds for family members to nap on from 1:00 to 5:00.

We can take a hint...

LC's catheter bag was FULL when we went in for our 2nd visit and the drain relieving fluid from her heart and lungs had started to turn from blood into a more watery pink fluid. These are all GREAT signs for LC and such welcome answer to your prayers. We just can't thank you enough...

First Visit...

LC's outdone herself in the accessory department...she's connected to quite a few impressive looking monitors and towers of machines. She's on quite a few new heart medicines and other medications to help maintain a steady blood pressure.

So far they are closely monitoring her post-operative swelling and the performance of her kidneys and renal system. The bypass machine sometimes "stuns the system" and her urine output was slow to start but Dr. O'Brien came by and pushed on her belly and she filled her catheter bag right away.

One prayer topic is LC's liver function...Her liver is enlarged and about 3 inches lower than it ought to be. The numbers monitoring her liver function are also slightly off and have been sent to a lab for further evaluation. I'm not sure when we'll hear back on those, but it could be a response to the bypass machine, a response to the post-operative swelling, or caused by the congestion her heart was experiencing before surgery. We're praying her liver reduces in size and begins functioning normally during the next twenty four hours and she continues to pass fluids efficiently and keep healthy renal functioning...
Thank you, thank you, thank you for your continued prayers for LC Grace....

11:30 Update

Dr. O'Brien came out to let us know that he had completed the repair and she was being moved out of OR and into pediatric ICU. We'll be able to see her in an hour or so and she'll stay sedated and under for the next 24 hours. We'll send additional updates after our visit.

Thanks for continued prayers for...
Minimal swelling and chest pressure as LC's heart responds to the repair
Comfortable rest for LC as she heals
Healthy response to the anesthetic and medications she's received today
Her heart's ability to successfully set its own pace again and not require any pacemaking devices

We're so grateful for how far your prayers have brought her and thank you so much for your continued intervention on behalf of little LC Grace...

10:45 Update

They are finishing up the repair and putting in tubes to drain the fluid that will accumulate around her heart following surgery. These tubes will remain in place during her recovery. We haven't heard whether they'll be able to close her chest or if they'll need to leave it open in the ICU to relieve chest pressure.

When the repair is finished they'll be bringing LC off of the bypass machine and she'll rely on her own heart and the ventilator to do the breathing and blood circulation for her.

More updates to follow...

9:45 Update

LC is on bypass now and Dr. O'Brien is doing the actual repair. He reported everything looks good and we'll expect another report in 45 minutes or so...thank you so much for your continued prayers...

9:00 Update

LC's lines are in...they took longer than expected to get them all placed, but they're ready now to begin the actual surgery and repair. Dr. O'Brien has made his first incision and LC's heart will be temporarily stopped in the next 15 minutes or so as she's hooked up to the bypass machine...

LC's been checked in and handed over to a team of nurses eager to get a squeeze of her before surgery...she looked sweet in her Sylvester and Tweety OR gown and slept through the entire process but opened her eyes as we gave her to Nurse Beth...(or, I should say, as we pryed her out of Dad's fingers to give her to Nurse Beth...)

Our nurse practitioner, Kathy, will be updating us every 45 minutes or so...thanks so much for your continued prayers throughout the morning and days to follow...

One Last Entry Before the Big Day...

This is a weak attempt at sending thanks for the many ways you've shown LC she'll be in your thoughts and prayers on Monday. Please know that personal thanks will follow when my brain is not as wildly scattered as it is now...

THANK YOU CANNON FAMILY for the surprise goodie bag and your continued encouragement and friendship. We can't wait to spend more time with you and watch these girlies grow together...Alayna will be LC's first official tutor!

THANK YOU AIDAN for the incredible artwork and wonderful writing. (Does your kindergarten teacher know she has a GENIUS on her hands?) We packed them both and they will decorate LC's hospital room with your X's and O's and sunshine.

THANK YOU HARTWELL FAMILY for the amazing M & M's and creative card for LC! I never thought I'd find an M&M that I'd be hesitant to eat, but I just can't bear to munch such a thoughtful, cute treat! The ketchup bags are carrying LC's goodies to the hospital...Siera, you'll be delighted to know I brought MULTIPLE changes of clothes and matching accessories...

THANK YOU KATHY and LEE for the sweet outfit to wear in the optimistic hope that we'll tolerate more than a diaper after surgery. We can't wait to put it on!

THANK YOU CURTIE JO JO for the Valentine goodies and the Heartbreaker onesie that LC wore today. Thank you especially for the music your mommy collected and the M&M's you sent to keep Auntie Cotes happy and sedated.

THANK YOU LISBONA FAMILY for doing our dishes when we return from the hospital. You are too clever.

THANK YOU NANA CAM for the soft socks and caterpillar and all the sweet munchies for entertainment and self-medication purposes.

THANK YOU GG GRACE for the pretty angel. We put it in her cupboard and LC loved the sparkly gem for her birthday.

THANK YOU GRANDMA JANET and GRANDPA FRED for the roaring lion that Justin forgets to turn the switch off of so I step on it in the dark at the 3:00 a.m. feeding and nearly wet myself from the fright. We're having a good time with that one.

THANK YOU AUNT KATHRYN, DAVE and DAN for the pretty string of valentine hearts. We hung it from LC's ceiling fan and she can't take her eyes off it!

THANK YOU OHIO FAMILY for your continued prayers, verses, treats, and encouraging words. We love you very much.

THANK YOU ALL for your constant prayers and support for LC over the past four months. We've stood in awe of the abounding love that has been brought into our lives by a tiny misformed heart and can't imagine what this angel will accomplish with four working chambers...We only know that we'll have your prayers and intervention on her behalf to thank and cannot wait to share her sunshine with you in the months to come...

Updating the blog during LC's hospital stay will probably be sporadic, at best, but I will do my best to update throughout Monday and keep everyone posted on LC's progress and surgery results. Brief updates should be possible during tomorrow's surgery so keep checking the blog for new information! The nurses will take LC tomorrow at 6 a.m. so we hope to have a finished surgery before lunchtime...

God's Surgeon for LC...

We had originally believed we would have Dr. Lofland as our surgeon for LC and had placed a lot of confidence in his national recognition and level of expertise. We were disappointed when we learned her surgeon would, in fact, be Dr. O'Brien and had worried over whether that choice for LC would be best.

When we made an inquiry into the possibility of surgery with Dr. Lofland we were told LC's surgery would have to be postponed until April to coincide with his surgical calendar. After meeting with Dr. O'Brien and discussing LC's surgery and the procedure we both decided the earlier surgery date with Dr. O'Brien would be in LC's best interest and agreed to the February 16th date with Dr. O'Brien.

Today I learned from our congenital heart defect support group that Dr. Lofland has taken a 3 month leave of absence due to a case of dermatitis on his hands that won't clear up.

Had we changed to Dr. Lofland, LC's surgery may have been postponed for an unknown amount of time...

Dr. O'Brien will be taking over all of Dr. Lofland's cases which will mean an extra load for him. Thankfully, LC's surgery is the first on his list after Dr. Lofland's leave of absence begins.

Please include a huge thank you in your prayers for LC for God's grace in assigning a doctor we doubted and the lessons in faith he's sending us when we let go long enough to learn them...

Superhero Snooze

We are pooped! LC's Pre-Op appointment was at 9:45 this morning and we finally got out of there just before 2:00...
She was a brave soldier and we met many people we'll see again Monday morning. She''ll be the first out of the shoot at 6:00 a.m. and then we'll see her again after 5 hours or so.

I forgot to take LC's picture before the appointment, so you'll have to get the "after" shots instead. Dad designed a special onesie for her and we turned her favorite blanket, Blooey, into her superhero cape.

She's about as wiped out as I've seen her. Things went well right up until the blood draw and that girl would NOT bleed. They would find veins, but that blood would not flow. After two attempts in the head, each arm and a foot with a break in between to get a vascular technician with an imaging monitor to locate veins we FINALLY collected enough. It was a rough go, though, and LC needed to be put on oxygen before the show was over from screaming herself into a state of purple rage. She's tough stuff, though, and resting up to help me with some treats for our nurses...

Thanks for keeping us in your ongoing thoughts and prayers. We're so encouraged by all of you and are especially grateful for you in joining us in celebrating LC Boom Boom and how far she's come...