Book Review

Sunday, December 23, 2007

You may have heard of the author/historian David McCullough, the author of Truman, John Adams, and 1776. I recently read one of his earlier books, Mornings on Horseback. Winner of the 1982 National Book Award, Mornings on Horseback is a biography of Theodore Roosevelt, Jr. ("Teedie" - yes, that's how it was spelled) that focuses on his childhood and early political career.
I've always liked Presdent Roosevelt for what he did for the National Park System but did not know much about how he became President or what he did before that. "Wealthy, challenged, and unique" are words I would use to describe President Roosevelt after reading this book.

Wealthy: At a time when the majority of Americans had trouble putting food on the table, the Roosevelts were enjoying lavish parties at their home on 5th Avenue, vacationing overseas for months at a time, and spending their summers at their vacation home on Oyster Bay.

Challenged: Teedie struggled with a debilitating case of asthma throughout his childhood and teenage years as well as the premature deaths of his father (48), mother (46), and first wife, Alice Lee, at the young age of 22.

Unique: Teedie enjoyed hunting, taxedermy, reading, writing non-fiction novels, cattle ranching, sleigh riding, rowing, hiking, helping the poor, and politics. He also had nice side burns.

(Teedie at Harvard)

I hope you will check out this book.

Illness Update

Saturday, December 22, 2007

E and I went to a doctor on Thursday as we had had fevers for a few days and our throats were hurting a lot. (E's throat was so bad that she could not eat or drink). We were both diagnosed with strep throat and put on antibiotics. E also got a shot to speed up her recovery, as she had an "advanced" case. Thankfully, Caro has not shown symptoms of strep other than brief fevers on Tues and Wed night. This is truly a Christmas miracle given the high-level of contagiousness (sp?) of strep with children and Caro's weak immune system. As any reader of this blog knows, if Caro had come down with strep at this time, we certainly would have spent Christmas in the hospital this year. Now, with the antibiotics, E and I should be completely well by Christmas.

A Rhyme

Thursday, December 20, 2007

We have the flu,
And feel like poo,
Happy Holidays and,
Merry Christmas to you.

The Flu...

Wednesday, December 19, 2007

is what we all have:(. We are miserable and have been so since Tuesday. We are very grateful that Caroline's fever has been able to be controlled with Tylenol. Please pray for her - that she may get better and not have to go to the hospital. We really don't want her to spend her first Christmas there. Thanks.

The Wiggle Worm

Monday, December 17, 2007

On Sunday, I was getting ready for church, looked over at Little, and she was doing leg lifts. Here's the video (yes, the first video of ours on Love from LV - it's short but sweet) -

Still picture of the random leg lifts

"Give me all your presents...".

Little Miss Santa's Little Helper 2007, seen here wearing the honorary jacket

Little Miss Santa's Little Helper 2007 resting in the arms of her pagaent coach.

Thank you!

Sunday, December 9, 2007

My cousin Liz and her kids, Hannah, Zach, Claire, and Rhett, made Caroline wonderful cards and sent them to her after her last hospital visit. As you can see, Caroline loved them.

We are so grateful for all of our family and friends. Your love and concern help us each day.

Caro's back!

Thursday, December 6, 2007

Caro was discharged this evening from the hospital. So nice to all be home together again! Thanks to everyone for their love and support.

Famous Last Words

Wednesday, December 5, 2007

In yesterday's post, I said we'd be out of here in a day or two. Then, almost immediately after I posted, blood started coming out of her g-tube and, a few hours later, her hemoglobin levels dropped significantly! Hello?!?!?

Anyway, the blood thing is being blamed on the daily aspirin she takes (prescribed by her cardiologist after the ASD closure), so they're giving her additional meds to keep her stomach lining in tact.

While the doctor is considering a blood transfusion, I think they'll try a multi-vitamin drop with iron first to get those hemoglobin levels back up.

I talked with the doctor about bringing her home, and she said that if I think she's at her baseline now (her "normal" activity level) then, assuming no more blood comes out or anything, we can set tomorrow as a her discharge day. So that's the plan for now...

I'm so bored with writing all of this hospital stuff!!!! I want to post about books I've been reading and our Christmas decorations and Caroline's first haircut (that was on deck this last weekend because she desperately needs something done :) and apple cider recipes and all sorts of triviality!!

That's all I want (well, not all I want - Christmas wish list available upon request:).


Tuesday, December 4, 2007

This picture was taken a week or so ago - I just like it.

On Saturday around 6:00am, Bryce woke up to change C's diaper and to suction her (get mucous out of her trach tube). She started to get fussy, which is not unusual when we're messing with her. This time however her pulse oxymeter (a machine with a probe taped to her toe that reads how much oxygen her blood has in it) started beeping, telling us that her O2 levels were dropping.

We turned up her oxygen, suctioned her again (in case anything was blocking her airway) - still nothing - she just got madder and madder... and then went limp. We changed the trach (s.o.p. when she' s not breathing properly) - still nothing, now turning blue/purple and not moving, eyes glazed open. I ran downstairs and got the breathing bag (you connect that to the trach and push air in to breath for her) while Bryce held the oxygen flow directly over her trach. Bryce bagged her while I called 911. Our first time doing that.

We bagged her and held up the oxygen. Her heart was still beating though, so we didn't start official chest compressions. After about a minute or so, she started breathing again and her 02 levels began to creep back up.

The EMTs/Fire Dept. arrived (4 big dudes carrying massive bags of equipment), marched upstairs to our bedroom and listened while we explained the situation. They didn't do much (said we did everything that was immediately needed) and set her on a small gurney to get her into the ambulance. The main guy told us that what we did probably saved her life. I'm sure he says that to everyone, but it was nice to hear all the same.

Bryce rode with Caro to the hospital while I gathered our stuff together. Once in the ER, she had two more episodes like the one described above. Luckily, the doctors and nurses were there to evaluate them and watch over her. The attending peds ER doctor said that the episodes were either due to seizures or hydrocephallis (swelling of the brain), and they gave her phenobarbital (an anti-seizure med). This medicine made her very sleepy. A CT scan was done and, from that, the neurosurgeon ruled out hydrocephallis, something we were very grateful for because the treatment for that is a surgery that places a shunt in her brain which drains extra fluid.

So, after 13 hours in the Peds ER, Caro was admitted and taken up to the PICU to be monitored. She got transferred to the regular Peds floor the next day and has been there ever since. Her neurologist told us that, based on what we described and on her EEG, MRI , and CT scan, what she had on Saturday was not epileptic seizures but breath holding spells. If children are prone to these spells, they'll start having them around her age.

They're not permanent (they can stop happening anywhere from 18months-4 years), and, as long as they don't last over 2 minutes or so (I know, 2 minutes of blue/purple baby that I'm bagging - what?!?) then we don't need to call 911 next time. The neurologist gave us some techniques to help her when they're happening as well as ways to prevent them. They don't exactly know what triggers this in some children's brains, but we're happy to hear they're not epileptic seizures, as those are permanent and much more serious.

We thought she might go home Monday, but she started breathing very heavily on Monday afternoon. She may have some sort of viral infection, but one that just causes the fast, heavy breathing - her sats are good, no fever and, she isn't acting like she's sick or in pain. Today (Tuesday), her breathing has slowed down, so it looks like she'll be out of here in a day or two (famous last words:).

Sidenote: she had a follow up hearing test done here. It looks like there is hearing loss, so she may need hearing aids. The ENT will give her one more test to know exactly what to do.

Life with Caroline is not easy. I wish we had more positive news to share, and I'm hopeful that we will someday soon.

Remember me?

Wednesday, November 28, 2007

"Just because my shirt says 'Smile' doesn't mean I have to do it"

This litte girl now weighs 14lbs. 9.5oz and is 26.4 inches tall.

Sorry it has taken so long for me to post since the last post - we've had a lot going on! But, I can safely say that we're now getting used to having Mr. Trach in our lives...kind of. We wouldn't be close to this point without our families. Both of our families came in town (at different times) over the week of Thanksgiving and they all really helped us get our home back in order. We are so grateful to them! They did everything from deep cleaning to errand running to Christmas decorating (Jack and Mel even washed windows). They also helped keep an eye on Caro, so Bryce and I could get more rest - we really miss that:).

Anyway, thanks again to all of them!

(Also, an extra special thank you to my Uncle Jeff, who gave us a very posh Thanksgiving day - any more details will make everyone green with envy.)

Living with a trach

Sunday, November 18, 2007

The last few days since we've been home from the hospital have been very stressful. Getting used to her new trach with all of its equipment has been awful. Plus, Caroline really hasn't been herself lately - not as animated or strong, drooling more, kind of listless, and she still needs oxygen, which is frustrating because we were told before that she only needed oxygen because her throat wasn't providing a strong airway. We're now being told that she may be off of oxygen in 4-6 months. We're trying to be patient and hope that all of this will sort itself out for the best.

We have a lot of new equipment to get used to: (From L to R) oxygen concentrator (purifies the air into pure oxygen to go into her tube), oxygen saturation monitor, nebulizer, portable suction machine (the trach, like any other airway, gets mucous in it so we suction it out every couple hours or so) -- not seen here is the humidifier (see post from a few days ago for the picture)

The medical supplies needed for one month.

It's all worth it for...

this little beauty (one of her first smiles since the hospital).

The Backyard

The Backyard

Bryce's BBQ on its patio, lovingly made by Bryce

Bistro Table (the only thing not put together by Bryce [by my dad instead]) on a patio put in by Bryce

Another view of the backyard (the second plant in on this picture is actually a small lime tree)

Front yard plants

Side yard (the plants are sage and the ground cover is cedar bark)

Well, after a year and a half of planning and slaving away in the hot Las Vegas sun, we are finally done with the back and side yards. As you can see, we've put in a brick circle patio, a cement paver patio, a small lawn (w/automatic sprinkler system), flowers, bushes, vines and trees (w/automatic drip system), and by "we" I mean Bryce. Bryce did almost every bit of this whole yard (with help from law school friends on installation and my dad with the bistro table). I'm so proud of him for sticking with this - great job, Bryce!
(PS - Don't tell him, but I still have a few more things to add in the spring: more flowers, a tree or two, tomato plants...)

She's Home

Wednesday, November 14, 2007

We brought her home tonight...very hectic...tons of equipment...none of it worked as it should. Will post more when I come up for air. Glad to have her back though!

A Rollercoaster Week (now weeks): Days 9-14 - Trach Change, Training, and Waiting

Sunday, November 11, 2007

This place bores me.

Well, this past week has been primarily recovery from the tracheostomy and getting to know everything about handling a child with a trach. On Wednesday night our ENT changed the trach with no complications. This was an important step in her healing as the first trach change is when the ENT removes the sutures and examines her new airway. In our ENT's words after the first trach change, "the site is healing nicely."

Our ENT also stated on Wednesday night that we would probably go home "within a couple of days." We were also promised on the day of the extubation and tracheostomy that we would go home within 3-7 days. Well, my math skills aren't the greatest anymore, but according to my calculations, that would have put us home sometime between Tuesday and Saturday. Hmmm . . .

Well, seeing how we are still here, (I am actually writing this post from Caro's hospital room), once again we have been deceived by Caro's medical providers. Maybe they just really like her and want her to stay (her hair is quite an eccentric cloud of curly fun). Or maybe the hospital staff find my conversation witty and entertaining. Or just maybe there is a conspiracy between the health care providers to keep her here since we have good insurance benefits and they will certainly be paid (I have noticed that most of the rooms here are empty). Either way we're still here.

That said, things have improved dramatically for us all since we moved downstairs to the Pediatric Unit (from the Pediatric Intensive Care Unit) on Saturday. Our new room has a private bathroom with a shower, a nice bench/couch/bed for hanging out and sleeping on, a door that the staff do not keep propped open at all times during the day and night, less intrusive hospital staff that understand that 4:00 a.m. is a time for sleeping for most people and not for loud conversations in the halls or in your room, more storage space for our stuff, no visiting policy - the number of guests and the times they can visit are not regulated, and most importantly, Internet accessibility (I was able to catch up on some much needed work from 9:00 p.m. until 3:30 a.m. Saturday night/Sunday morning as well as post this blog today as a result).

Besides the drop down to the Peds floor this week, we also had CPR training with a trach, read mandatory manuals and watched a video on trach changing, and Erika even successfully changed Caro's trach on Friday for practice (I will be changing it later on before we leave). We also had all the equipment required for a trach (suctioning machine, humidifier, suction catheters, saline bullets, extra trachs, attachments for the trach, etc.) delivered to our home on Friday. Erika was trained on the use, maintenance, and care of each machine at our home.

We asked for the next gen/top-of-the-line equipment. However, as you can see from the pic of the humidifier below, I have determined that in medical-speak, I should always use the opposite word of what I actually intend to mean. I'm not sure why I had not caught on to this before given that we all know that in medical-speak, if you test "positive" for something it is always bad (negative), and if you test "negative" for something it is always good (positive). Regardless, good luck Erika hauling this monstrosity (weighing in at a hefty 40 lbs.) up and down the stairs with an oxygen tank and Caro.

This humidifier probably had its first use in the '50s.

Anyway, as late as Friday night we confirmed with the docs that we would probably be going home on Saturday or Sunday. I should have known, however, that in medical-speak the word "probably" is synonymous with "unlikely/ain't gonna happen" because on Saturday morning, the doc told us that he would never let a patient go home after a tracheostomy any earlier than 10 days after the operation. Best case scenario, he expected us to go home this Wednesday.

So they are basically just monitoring us now (Caro is stable) to ensure that we are comfortable with everything, despite our best efforts to prove that already. A quote from Angela on The Office comes to mind: "I love being judged. I feel that I can hold up under even the strictest scrutiny."

Except that we are getting tired of being judged. We are asked no less than eight times a day now by doctors and nurses alike, "so, do you feel comfortable with all of this equipment?"; "this is a lot of stuff, are you sure you understand?"; "I heard a report that you were overwhelmed by all of this, are you sure you can handle taking her home?"; "you understand the importance of the humidity, don't you?"; "can you suction her?"; "do you come from a medical background?"; you get the idea. We just want to take her home and it seems that unless we pass some unwritten, unspoken of test created in the minds of the practitioners here, we won't be able to. So that's my rant about that.

The silver lining in all of this is it allows us to have time to adjust to all of the changes that have occurred with Caro and become extremely comfortable and prepared for the new schedule of breathing treatments, oral medications, and everything else that goes along with having a trach and a child post-op coming home from the hospital (I counted six new prescriptions for meds that Caro will be on when we get home).

Hopefully we will be able to come home sometime this week (Wednesday is the day being mentioned most).

A Rollercoaster Week: Day 7-8 - Monitoring, Weaning, Training

Monday, November 5, 2007

Sunday morning, I arrived at the hospital to find that Caroline was already off the ventilator that was attached to her trach and was breathing slowly and deeply on her own. She was also rather fidgety and seemed uncomfortable (but not in pain). We asked the ENT and others that came in to see her about her fidgetiness and they said that because she had a foreign object in her body now (the trach), it would take her a couple of weeks to adjust to it. She would also have a lot of secretions (clear mucous, like the kind that comes out of your nose) through her trach and need frequent suctioning. She had a loose mask over the trach that gave her warmed, humidified air and oxygen.

Sunday afternoon we were finally able to hold Caroline, after not being able to since Monday. She is such a little doll!

Today we held her more, including Erika’s mom who held her for three hours in a row! Caroline looks beautiful without a nasal cannula in now and she can also lie on her back without having to move her head to the side to get air. We hope that the trach will help her to develop faster and maybe even sleep better. We also hope that she will be able to get weaned off of the oxygen entirely, although at this point she is still on 35% oxygen – whatever that means (no one has given us a satisfactory explanation yet).

Now we just have to wait until Wednesday when the ENT is expected to change out her trach for the one that she will go home with. We will also need to be trained on how to suction the trach and care for it ourselves. We expect to go home sometime between Thursday and Sunday this week depending on Caroline’s recovery time.

We can already tell that having a trach is not ideal and will require additional equipment to carry around with us whenever Caroline goes out or moves rooms in our home. It is also scary to think that like her G-tube, she can pull the trach device out of her neck at anytime. But unlike the G-tube, we cannot cover up her trach with clothing to prevent her from grabbing at it. Admittedly, I am not happy at all about her having to have this trach, especially given that we came to the hospital on merely a ¼ liter of oxygen. Caroline does not seem to mind it much though, and we are certain that this is the best thing for her right now. We just hope that this does not turn into a permanent thing. We also hope that she will be able to come off of her oxygen given that we thought her airway blockages were the reason for the oxygen in the first place.

A Rollercoaster Week: Day 6 - Trach Day

Well, the day had finally arrived, when we could finally find out if we were ever going to start moving towards leaving the hospital. Caroline slept most of the morning (w/o sedatives) in anticipation of what would happen that afternoon. She also went off of her feeds at 7:00 a.m., given the possibility that she may need surgery. The operation was scheduled for 3:00 p.m., however, at approximately 12:50 p.m., we overheard someone tell the nurse that the transport team was on their way to take Caroline down to the OR. Apparently, this was also news to the nurse as she began rushing to get Caroline ready by making all of her monitors portable and taking her off of her IVs. By 12:55 we were on our way down to the OR.

Just outside of the OR, Erika and I spoke briefly with the ENT and the Anesthesiologist before Caroline went in. The ENT assured us that he would go forward with the original plan to attempt to extubate Caroline and, only if that did not work, would he go forward with the tracheostomy. The time to determine the extubation was approximately 30 minutes and, if a tracheostomy was needed, that was also expected to take 30 minutes.

We waited impatiently in the waiting room for an hour and a half before we heard anything. A nurse that we recognized from the OR came out and she had tears in her eyes. We were worried that something terrible had happened, but she was only sad to report that the tracheostomy was needed and that the ENT had begun that procedure. We had mixed feelings – we were glad that Caro was okay given that we had waited so long, but we were sad that she was going to need a trach after all (making this her third surgery this year and second surgery this week). Another hour and a half passed before we heard from the ENT that the tracheostomy had been successful and that Caroline was waiting for us in her room up in the PICU.

Caroline was on heavy pain medications and slept most of the rest of that day.

A Rollercoaster Week: Day 3-5 – The Long Wait

The doctors decided to wait until Saturday (Day 6) to reattempt extubation. They hoped the 72 hours would allow any swelling to subside. To make that happen while the tube was still in place, they pumped her full of steroids to decrease swelling, which in turn caused her blood sugar to zoom up to 366 (steroids = Caro’s Halloween treat)! So, they also gave her insulin to counteract that – sometimes doing so too much, bringing her sugar levels down to the 40s. They also kept her on sedatives (Mommy and Daddy’s Halloween treat) to keep her from getting too upset about the tube.

This time, the ENT would attempt extubation using special sprays and scopes, to prevent any spasms and to see what was going on with her throat respectively. We really like her ENT and felt that he would do his utmost to keep her off of a trach. (He’d seen her prior to this hospitalization and knew that she had done just fine without a trach, a fact that most of the nurses and doctors here just couldn’t grasp).

The ENT did say that, if she couldn’t do well with this extubation, they would place a trach in the OR right then. So, to help prepare us just in case, he explained more about a trach and allayed some concerns.

He told us the following:
1) A trach is not permanent; it can be taken out when the doctors think she’s ready for it to go. Ninety percent of kids get their trachs out when they are three years old or 30lbs.
2) If a trach gets put in, it would be left in until a) swelling goes down (not long), b) all scheduled surgeries performed (by January), c) the winter (RSV season) is over, and d) her airway gets more structure and strength (???).
3) With a trach, she could still do everything she still does now – bottle feeds, physical therapy, tummy time, etc. Just no swimming.
4) A trach would not cause her to get sick with a cold or something more easily. It may get infected, but she could be given antibiotics for those infections.
5) Once the trach is removed, the scar left is very slight.
6) The trach comes with additional equipment (for suctioning and humidifying her airway).
7) With a trach in, performing her head surgery will be much safer, should we decide to go forward with that, because her airway will be more secure. Her recovery would also be faster (because it won’t be nearly as difficult to take her off the vent).

With that information, we spent a lot of time preparing our minds for either outcome on Saturday, and we began to pray for the outcome that would make her the strongest the fastest.

A Rollercoaster Week: Day 2 – Re-Intubation

The next day, doctors and nurses monitored Caroline closely. To monitor a child who is intubated (when a breathing tube is placed through the mouth to keep the child breathing), the doctors keep a close eye on her blood/gas test results. They get these results by taking a little bit of her blood every so often to check the amount of oxygen, CO2, and other gases in her blood. (She’s always hooked up to monitors that give them a general idea, but the blood tests are more accurate.) As the numbers look better, they allow her to breathe more and more on her own, and when she seems ready to take over breathing completely, they pull the tube out.

So, her blood/gas test results stayed strong throughout the day, and she was breathing more easily. She also remained somewhat sedated (standard operating procedure for an intubated kid because the tube usually bothers them so much otherwise). During the day, her pulmonologist (lung doctor) evaluated her. We asked him about the trach issue from yesterday. He said he wasn’t positive Caro needed a trach. He said that it may be something we need to look at in the future but not during this hospitalization, unless, for some reason, we couldn’t get her off the vent.

That night, the attending doctor (a different one from the night before) told us that they thought they could extubate (take the tube out) her that night. We approved and watched as the nurses and doctors again took the tube out. She only went for about a minute before her skin color and her monitors made it clear she needed to be re-intubated.

We were baffled and hopeless. What could be causing her all of these problems? When we brought her in, she wasn’t even close to requiring ventilation. The attending doctor said (and this was later confirmed) that he believed the vent tubes irritated her throat to the point where it was extremely swollen. Because her airway is already weak, this causes severe blockage. He said he’d work out a plan of action with the ENT (ear, nose, and throat) doctor and the pulmonologist.

On a positive note, her cardiologist came in to check on her again, and her ASD remained nice and closed, so at least the procedure was a success (a fact that was difficult to remember…strike that…was completely ignored that night).

A Rollercoaster Week: Day 1 - ASD Closure

Sunday, November 4, 2007

We arrived at the hospital at 6:00am (?!?!)...

and, after waiting for an hour...

a nurse brought us back to a surgery prep room and got Caro ready for surgery...

We picked her up, went with the doctor and nurses into the OR, and kissed her goodbye...

The procedure lasted 3 1/2 hours (they told us it would take about 2 hrs.), and, just as we were about to tear into the OR to get answers, the OR nurse came out to tell us that the doctor closed her ASD (hole in her heart) using the catheter procedure! No open-heart surgery needed! The doctor said it took him awhile to close the hole, and he was worried the device wouldn't hold. But, after checking and re-checking, the doctor determined the device would indeed hold.

They decided to have Caro recover in the PICU (Pediatric Intensive Care Unit). We went up to see her around 11:30 am. She was off the ventilator that they had had her on for the procedure, was breathing hard and her heart rate was high. The cardiologist and anesthesiologist were concerned but decided that she would recover. We always knew she would take awhile to recover, so we weren't worried.

The PICU attending doctor however came in and seemed concerned- too concerned given she had never seen Caro before and had only been observing her for about an hour. She asked Bryce if we had ever been talked to about putting a trach on Caroline. The answer was no, no specialist has ever mentioned that to us. Before we came in for the procedure, she only needed a small amount of oxygen given through a cannula. I tried to push aside the doctor's question, but it kept annoying me that she brought that up. We asked other doctors on the unit about her question, and they said not to worry about it.

Unfortunately, as the day went on, she kept breathing harder and harder. We thought she might have to go back on a ventilator, which, while serious, was not that big of a deal to us - we knew her recovery would be difficult.

Then, the PICU doctor then came on and started telling us all of the reasons why Caroline should have a trach. And we were like what?!? Are you seriously talking to us about a hole in my daughter's throat right now?!? Basically the lady had no tact/bedside mannner - no one, let alone a doctor who had never seen Caro before that day, should've brought that up the night of the procedure - something that I made clear to her a few hours later (in front of another nurse, Bryce, and my was late:)).

After that discussion, Caroline actually started to breath easier. We got less and less worried. However, the nurse then took her temperature, and it read 103. I had been holding her, so, with Bryce's help, I put her back in her crib to help cool air circulate around her. As we got her situated, she stopped breathing and turned blue. The nurses and doctor did an emergency intubation (put breathing tube back in). After that, with the help of sedatives, she calmed down a lot and was able to rest.

To be continued...

Our Little Founding Father

Sunday, October 28, 2007

Thank you to everyone who has offered us your support, prayers, and faith at this time. We feel good about tomorrow and know that all will be well.

On a lighter note, we thought we'd give you an early Halloween treat. Awhile ago, as C's hair was falling out in the front, we joked that she would make a good Founding Father for Halloween (a la Thomas Jefferson - long, red hair pulled back in a bow, with little britches, tights and shiny black shoes, and, of course, her stoic look rounds out the picture). We finally gave in, so, here she is, our little Founding Father...

We didn't make her stay in that outfit for long. Here's a picture from the end of tonight's feeding, all relaxed and prepared for tomorrow.

ASD Closure

Thursday, October 18, 2007

Here's Caro showing off her improved coordination (bringing her hands to mid-line) and exploring things with her mouth.

On October 29th, Caroline's ASD will be closed with a catheter procedure. You may remember that as recently as September, her cardiologist told us he thought an open-heart operation would be required to close the ASD. However, after some consideration and consultation with other specialists (and, we think, some prayers on our part), the cardiologist now believes he can close the ASD with the much less invasive catheter procedure.

The procedure will last about 2 hours. Typically, this is an outpatient procedure, but the doctors think they'll keep Caro overnight. Bryce and I feel that this is the right course for C; it will make her much stronger in many ways (breathing, therapies, etc.) and will prepare her for her cranial surgery if we go forward with that.

Although the cardiologist thinks he can close the ASD with the catheter procedure, he said there is a possibility it may not be successful, in which case they would perform open-heart surgery. We obviously really don't want that but feel good about going forward with this.

So, we have decided to have faith that all will be well. We've also decided to ask for your faith, prayers, and fasting on October 28th, the Sunday prior, on behalf of Caroline - that her procedure will be successful so open-heart surgery won't have to be done. With everyone behind us, Bryce and I know that we can drive up to the hospital on the 29th with courage in our hearts.

Thursday's Thought

"Think of a thought for the blog?!? How about 'people need 8 hours of sleep!'"

-Bryce to Erika, after Erika continued to look for quotes for the blog at 11:00 at night

Stats Update

Tuesday, October 16, 2007

"I'm recovered and back to working on my head control!"

"Ok, now I'm tired."

Caro had an appointment with the Gastroenterologist (GI) doctor today, and she is now.....

12lbs. 11.5 oz. and 26 inches!

These numbers are especially good considering she was very sick/in the hospital for some of the month.

Funny dialogue with the GI today (note - PG language ahead) -

Doctor: (Walks into the room, sits down, looks back and forth between Caroline and her chart) Wow, she really looks great, doesn't she?
Me: Yes
Doctor: Really, I think she looks very good - getting chubby, nice pink color. REALLY, she has improved a lot.
Me: Yes, yes I agree - it's great to see.
Doctor: I mean, when she first came in, she was skin and bones, no cheeks, I could see her ribs...(widened his eyes)...scared the hell out of me!


Easy Asian Potstickers

Monday, October 8, 2007

Your vote decided! The recipe you wanted is "Easy Asian Potstickers" - well, Cook's Illustrated called it "Easy" anyway. It's easy once you get the hang of it, but, let me tell you, this recipe is worth any trouble it takes - they're excellent! Also, make sure to use excellent ground pork (the first time I made this, I bought the pork from Whole Foods - A+; the next time I made it, I bought the pork from Smith's - B+).

Makes 24 dumplings, 6 first course servings

We prefer to use gyoza wrappers. You can substitute wonton wrappers, but the cooking time and recipe yield will vary (see the chart below Step 3). Potstickers are best served hot from the skillet; we recommend that you serve the first batch immediately, then cook the second batch. To freeze potstickers, place filled, uncooked dumplings in the freezer in a single layer on a plate until frozen, then transfer to a storage bag. There's no need to thaw frozen potstickers; just proceed with the recipe.

3 cups minced napa cabbage leaves
3/4 teaspoon table salt
3/4 pound ground pork
6 tablespoons minced scallions (about 4 medium scallions, white and green parts)
1/8 teaspoon ground black pepper
4 teaspoons soy sauce
1 1/2 teaspoons grated fresh ginger
1 medium clove garlic , minced or pressed through garlic press (about 1 teaspoon)
2 egg whites , lightly beaten
24 gyoza wrappers , round, (see note above)
4 teaspoons vegetable oil

1. Toss cabbage and salt in colander or mesh strainer set over medium bowl. Let stand until cabbage begins to wilt, about 20 minutes; press cabbage gently with rubber spatula to squeeze out excess moisture. Combine cabbage and all other filling ingredients in medium bowl and mix thoroughly. Cover bowl with plastic wrap and refrigerate until mixture is cold, at least 30 minutes and up to 24 hours.
2. Place 4 wrappers flat on work surface (keep remaining wrappers covered with plastic wrap). Place one slightly rounded tablespoon filling in center of each wrapper. Using pastry brush or fingertip, moisten edge of wrapper with water. Fold each wrapper in half; starting in center and working toward outside edges, pinch edges together firmly to seal, pressing out any air pockets. Position each dumpling on its side and gently flatten, pressing down on seam to make sure it lies flat against work surface. Repeat to form 24 dumplings. (Filled dumplings can be refrigerated overnight in single layer on baking sheet wrapped tightly with plastic wrap.)
3. Add 2 teaspoons oil to 12-inch nonstick skillet and quickly spread oil with paper towel to distribute evenly. Arrange 12 dumplings in skillet, lying flat on one side, with all seams facing same direction, overlapping just slightly, if necessary. Place skillet over medium-high heat and cook, without moving, until dumplings are golden brown on bottoms, about 5 minutes. Reduce heat to low, add 1/2 cup water to skillet, and cover immediately. Cook, covered, until most of water is absorbed and wrappers are slightly translucent, about 10 minutes. Uncover skillet and increase heat to medium-high; cook, without stirring, until dumpling bottoms are well browned and crisp, 3 to 4 minutes more. Turn off burner and slide dumplings from skillet onto double layer paper towels, browned side down, to blot excess oil. Transfer to platter and serve immediately with Scallion Dipping Sauce (see related recipe). Let skillet cool until just warm, then wipe skillet clean and repeat with remaining dumplings and oil.

Choosing the Right Wrap: Tasters preferred the slightly chewy texture of gyoza-style wrappers to thinner wonton wrappers, but both styles produced terrific potstickers. Although we developed our recipe using round wrappers, square or rectangular wrappers can be used as well. Here's how to adjust filling amount and steaming time. Because the smaller wrappers yield more dumplings, you'll need to cook them in multiple batches. (For wrapping instructions, see instructions below.)

Round gyoza (3 3/4 inches diameter), fill with 1 rounded tablespoon, steam for 10 minutes
Round wonton (3 3/4 inches diameter), fill with 1 rounded tablespoon, steam for 6 minutes
Square wonton (3 3/8 inches square), fill with 2 rounded teaspoons, steam for 6 minutes
Rectangular wonton (3 1/4 inches by 2 3/4 inches), fill with 1 rounded teaspoon, steam for 5 minutes

STEP BY STEP: Wrapping Potstickers
The instructions below are for round wrappers, our preferred shape. If using square wrappers, fold diagonally into a triangle (step 2) and proceed with the recipe. For rectangular wrappers, fold in half lengthwise.
1. FILL: Place rounded tablespoon of filling in center of gyoza wrapper.
2. FOLD: After moistening edge of wrapper, fold it in half to make half-moon shape.
3. PINCH: With forefinger and thumb, pinch dumpling closed, pressing out any air pockets.
4. FLATTEN: Place dumpling on its side and press gently to flatten bottom.

STEP BY STEP: Clearing the Air
During testing, we discovered that air left between wrapper and filling can cause "ballooning" during steaming, as the wrapper puffs up and away from the meat. The result? A messy first bite. Once we were mindful to press the air out before sealing the wrappers, our potstickers came out right every time.

She's Home!

Saturday, October 6, 2007

Caro on Wednesday

We got to bring Caroline home this afternoon! Her infection is clearing up thanks to antibiotics. We now have several medicines to give to her for the next few weeks which will help her continue to get healthy. She's now back at her regular level of oxygen. She is exhausted (as are we!) and has been sleeping a majority of the time since Thursday. Thank you for your support during this hard time - we appreciate your calls, emails, thoughts, prayers, and other acts of service.

Caro today before being released - so tired!

"She'll be out tomorrow"

Friday, October 5, 2007

That's what we were told today - again - they may mean it this time. She has a UTI but is being given antibiotics for that - not a serious thing, except that we get to add a pediatric urologist to her doctor roster. Her fever is gone, and her lungs are clear. She's still very drowsy and lathargic and hasn't quite been weaned back off of the increased oxygen they initially gave her in the ER.

Today was an "it's too hard" day. I keep attempting to write what I feel and then I delete it because once it's on the screen it looks trite and I don't want pity - I just want to tell the truth. Because this hospitalization has been awful. There's no other way to say it.

Today, for instance, a test for her bladder involved the nurse putting in a catheter while I had to hold her legs down and she screamed in pain and kept going through diaper after diaper during the insertion. Or the diagnotics staff that poke her 3 times to find her veins each time they have to take blood samples. Unfortunately, this torture is only the tip of the iceberg.

There's the constant interruptions by nurses and other staff (including a nurse "asking" to show her students Caroline's g-tube because they've never seen one in person - like she's some kind of wierd oddity - just when Caro has finally drifted off to sleep), alarms perpetualy beeping adding quiet stress to each moment, and, the most bleak, listening to the crying and scared children in the other rooms. When I hear them, I remember what I keep trying to ignore - that she's going to have to be in and out of hospitals her whole life - the place where the negative parts of having a child with special-needs - the worry, the fear, and the isolation - are abundantly accentuated.

So, that stress peaked today. But, as I'm writing this now, I remember two points. First, I remember gratitude - for my husband, for our families, for our spiritual and financial stability, for the simple fact that Caroline is with us at all. Second, I remember to live one day at a time, that I can do one day. I can't do my whole life, but I can do one day.

Not out yet

Thursday, October 4, 2007

She's still in the hospital - may get released tomorrow. She seems much more stable. She slept all last night and most of the day today. Her fever has stayed away, and her lungs sound clearer. One bad thing, preliminary tests show that she has an infection in her bladder and/or urine; we'll know more tomorrow after the official results from that and from the kidney ultrasound they did today have been evaluated. The docs didn't sound too concerned about it, but they do want to know everything before we're sent home.

Getting better

Wednesday, October 3, 2007

After another awful night last night (slept maybe 1 hr. the whole night and had an incident where her O2 saturation levels went down to 27%), she's doing better today. This morning, her temp was around 99.9, but by 5 or so it was normal (98.6). Granted, that is with Tylenol, but they've been giving her fewer and fewer doses of it and the fever's still down. The docs aren't using the word "pneumonia" any more - now saying slight respiratory distress. By the end of the day, her lungs were sounding much clearer and her breathing treatments (albuterol/pulmicort) have been reduced by half. Plus, she's started sleeping peacefully this evening, so hopefully that will continue through the night.

The physician's assistant even said she may get to go home tomorrow, but we haven't heard that from the offical doctor yet so we'll be keeping our fingers crossed.

Sidenote, the cranial surgeon called me today. He conferred with Caro's cardiologist, who agrees that the open-heart surgery on her ASD should be done before the cranial surgery and that it can be done soon. They both want to talk with a few more colleagues, so we'll see... ugh, no more hospitals, no more doctors!!!


Tuesday, October 2, 2007

Caroline was admitted into the hospital this afternoon. She was up all last night coughing, very congested. Then at 7am, we took her temperature and it was 102 degrees. I took C into the pediatrician, and by then, the pediatrician's office had her fever at 105.5. The pediatrician also diagnosed C with an ear infection, diarrhea, and respiratory distress. She decided to have her admitted to the hospital right away. Bryce met me and we drove to the ER. Once in the Pediatric Triage area of the ER, her temp was still at 103 - they immediately administered medicine. After 4 hours of examinations, x-rays, blood tests, and IV insertions, she was officially admitted to the Peds Intermediate Care Unit (one level less severe than Intensive Care and one more severe than the Regular Peds Unit). She tested negative for RSV (good!), and her temperature started going down because of the medicine - last number was at 99.8. The results of her chest x-ray didn't indicate severe pneumonia, but the doctors still think she has slight pneumonia based on her symptoms of fever and respiratory distress.

They think she'll be in there for about 2 days, but it will all depend on if what we saw today is the worst of what she has or only the beginning. Tonight they'll be giving her respiratory treatments every 2 hours and suctioning her airways every 4 hours. We can't believe this is happening after all we've done to protect her, but we truly feel like she'll recover and come back home with us to continue thriving. We just have to accept that this health rollercoaster comes with raising Caroline.

Will keep you posted as we can.


Sunday, September 30, 2007

(Here's Caroline in her Sunday dress playing with her toys.)

(Here's Caroline - now sick of her Sunday dress!)

Caroline has had a few interesting appointments lately. We met again with the cranial surgeon about the surgery for her fused sutures (ridge in her forehead). He told us that, while he would like to perform the surgery soon, he has decided to postpone the surgery for a few more months after speaking with a pediatric anesthesiologist. The peds anest. said that her ASD (hole in heart) should really be corrected before her head surgery takes place; that specialist thinks that the surgery will be too much for her heart in its current condition. The cranial surgeon still wants to speak with Caro's cardiologist and a peds anesthesiologist who specializes in cardiology to confirm this opinion.

This update is good and bad news - we like to hear that the surgeon is willing to postpone the surgery to allow Caro to get stronger, but, to repair her heart, the cardiologist has told us that he will need to perform open-heart surgery, also very risky. I guess it will still be a few more weeks before we've made a decision on the surgery.

The surgeon did say that he thinks Caroline looks stronger than she did at her last appointment - he was very impressed with her improvement. I don't know if I've posted about her jaw before, but there was some discussion between the docs about operating on her jaw to bring it forward thus allowing her tongue to fall lower in her mouth and stopping it from blocking the airway. However, the surgeon thinks her jaw has now lowered and her tongue is coming forward enough to make that surgery unnecessary - good news!

We also met with Caroline's geneticist for the second time since she was born. Many of you know that the geneticist gave us very scary news at our first meeting with her; she told us that Caroline has a high risk of passing away within the first year of life because of how her translocation formed, mainly due to the increased risk of apnea, aspiration, or seizures. She did say that, if Caro makes it to her first bday, that will be a very good indicator of a longer life span.

So, with that background, we went into this appointment with trepidation but did receive good news. The geneticist said the risk is still there because she hasn't turned 1 yet, but the fact that she hasn't had any apnea episodes, aspiration, or seizure is a very positive sign. She thought Caroline looked better and stronger than at the last appt. and said B and I must be working a lot with her for her to have made that much progress. I know it's because all three of us have been blessed with resiliency, patience, hope, and faith.

Sunday Afternoon

Sunday, September 23, 2007

When I was cooking this afternoon, Bryce put Caroline up on the bar. She started laughing and giggling a lot - so fun!

"Dad, I'm on the counter!"

Playing hide-and-seek with her bunny

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