Friday, October 26, 2007

Newbie and Lindley Updates

Hello bloggy friends! This will be long, so you can read it in sections and pretend I'm actually still providing you with daily reading! :D

I haven't been sick the entire time since I last posted. Just busy. Here's the latest...skip to below the dotted line if you just want a Lindley update.

Most exciting news is that we're having another baby! Woo hoo! Don't ask me how on earth that's possible. We had put fertility drugs and baby production on the back burner when we found out about Lindley's surgery. But Ironman had a birthday, so things happen. Gifts have to be given despite stressful circumstances, etc., etc., etc. Apparently God and/or my ovaries don't need Clomid to make me ovulate. Sayings are cliche for a reason, and things apparently DO happen when you least expect it. It really does happen when you stop trying, and that's why there are so many families out there with an adopted child and biological child practically the same age.

Men and those not wanting to read girl stuff, skip the next paragraph. Because of my infertility problems, I have to take meds to make me have a monthly "visit." If by day 40, the "visitor" hasn't come on its own, I have to take medication to make it start. After that, all of the blood tests, ultra sounds, and infertility meds can begin.

Due to the conditions of the past month or so, I wasn't tracking cycle days very closely. Usually I'm watching very closely and taking home pregnancy tests like they're free and come with a complimentary candy bar and wine cooler. This month I was simply waiting for day 40. I had the flu for a few days with legitimate aches, chills, and a fever, so when people jokingly implied that I was pregnant, I didn't even get the joke.

I had been VERY anxious before Lindley's surgery, so I was put on some anti-anxiety meds which happily got me through what otherwise would have been an emotionally draining two weeks full of sobbing in hospital bathroom stalls, the car, or wherever. After being home for a few days, I quit my anxiety meds cold turkey. I figured I'd be fine.

I was fine for a few days, and then the crying started. Crying out of the blue. I couldn't stop thinking about a little boy I met who was a cancer patient. He was bloated, had barely any hair left, and had to wear a little mask to protect against germs I guess. He asked me if I had seen his Cheese Nips. We walked through a hallway of the Ronald McDonald House trying to solve the case of the missing Cheese Nips when his father found us and took over. The hallways are filled with huge pictures of children that are fighting cancer or other life-threatening illnesses. I never wondered why I was so emotional because I knew what all I had just seen with my daughter and other children. It made sense to be a wreck, but I also thought, "I have to go back on the anti-anxiety/anti-depressant meds again until I get some distance from all this." Unfortunately, the meds I was prescribed had some side effects I didn't like. I couldn't get in to see that doctor because I had never even met him before. The end of January was when I'd meet him.

I felt there was no way I could wait until the end of January to deal with my emotions being all over the place, so I made an appointment with my primary care physician. Besides worrying that I was sliding into depression, I've been dizzy for weeks now. Before the surgery, I distinctly remember feeling like I was going to pass out while visiting my sister. In the waiting room the day of surgery, I had a couple of times I felt lightheaded. From then on, I've had a non-stop feeling of lightheadedness, so I also made the appointment to see if I had an inner ear problem going on.

Last weekend I realized I was approaching day 40 mark. I was still dealing with flu issues, so I didn't buy the pregnancy test. Stress and illness are two major factors in having a late start date of a cycle for a healthy woman. That combined with my infertility issues...I didn't even consider getting my hopes up. I finally made myself buy a 3 pack of cheapy Walmart home pregnancy tests on Monday night...end of day 39. I threw them on the counter and Ironman saw them. He kept asking me if I needed to pee--which I didn't see as any of his business. I also thought he was just being weird. Totally forgot about even having the pregnancy test.

I normally would wait until the next morning, but I was so sure it would be negative that I took it that night. I barely even glanced at it afterwards and was about to throw it in the trash when I saw the positive. I never get anything even remotely close to a positive on pregnancy tests. Mine are always blatantly negative no matter how I hold them up to the light in search of a faint second line. My heart stopped when I saw the positive sign, so I immediately tore into the next test and it came up positive as well. I didn't even have the presence of mind to think of a clever way to tell Ironman. I just plopped next to him on the couch and handed him the two tests.

He kept saying, "What? What? I don't know what I'm looking at!" We were both stunned. We loaded up the kids and drove over to tell my parents who were very excited. The next morning I used the third test on a NEW cup of urine...still somewhat convinced that there was an error making the pee the previous night bring up a false positive. So by the third positive home pregnancy test...I was convinced the cheapy Walmart 3 pack was faulty and that I needed to buy a different brand in case there was some sort of freak accident on the Walmart assembly line.

The fourth home pregnancy test was showing a positive almost as soon as it hit the pee cup. No need to take it out, put the cap back on, and stare at it for 2 minutes to see the result. At that point, I was feeling more confident that we did indeed have another Flawed/Ironman on the way...until that night when I searched for the instructions that come with the pregnancy test. I was looking for reasons a test could give a false positive. The answer: a cyst on the ovary can give a false answer.

ACK! My heart sunk. I have polycystic ovaries. That's why I have to have ultrasounds done every month before starting Clomid. I called the nurse this morning, and she ordered a blood test. After a couple of hours, she called me with the results that I am definitely having a baby. She estimates I'm probably six weeks today and that the baby will be due June 23rd. My progesterone levels are 25 which means all is well in baby world. Woo hoo! My appointment on November 7th will give us more details. I'll have a sonogram that day.

So I cancelled the appointment with my primary care physician to ask about an inner ear problem. The dizziness is caused by my blood volume changing due to having another person bunking in with me. The weepy days were apparently just hormones. I've felt great again for the rest of the week. Especially now that I can stop telling myself, "If we can't have another baby, it's my fault." It's always a bummer to know you and your spouse really want another baby, but your own medical issues stand in the way of it happening.

Wow. I hadn't expected to go into such detail, but at least baby #4 will have a record of the angst I went through just thinking that he/she may or may not be a reality. We want you so much baby #4 aka: PR--Positive Result!

Lindley is doing SO well! I keep meaning to take a picture of her incision so that you'll see how amazing she looks. I can't believe it's only been a few weeks since her surgery took place. You can't tell by her activity level. She's dancing and playing just like before. She doesn't seem to have any issues about her incision anymore-in regards to having people see it. She doesn't want it touched. She doesn't even want water sprayed on it in the tub, but she's getting more relaxed with time. It still seems to cause some discomfort when she lays back.

I wasn't able to go with them to her follow up appointment at the hospital because I had the flu, but she went through it like a pro! Ironman said she didn't cry even once. A lot of tests were skipped because we had just done them in the ER the Sunday before. The nurse did a lot of scrubbing on her torso to remove the adhesive she wouldn't let me go near, and Lindley allowed her to do her job with no fussing at all.

She came home on lasix, but now she takes zero medication!!!! For the past year she's been on Enalapril. Now she needs nothing. Thank you, God! Her surgeon as well as the ER doc said her leakage is basically non-existent. No further surgeries are ever expected in her future. She goes back to see the doctor in December. I can't remember the schedule after that, but the appointments are few before they completely stop.

One thing we weren't aware of until we were about to leave the hospital is how bad things looked when they went in to do the surgery. They were worse than expected. The leak had caused more enlargement than they realized. I'll have a hard time explaining the next part, so heart parents, don't laugh at me. I have the operative report right here, but it's in doctor English. To the rest of the world who knows as little as I do about the heart, there's a part around the outside of it that eventually you grow into and don't have anymore if I understand correctly. Children still have it. Is it called pericardium? Anyway, they used part of that to fix a problem that still existed after they repaired the cleft.

To those who will understand: There was still a portion of the posterior leaflet which tended to prolapse. In order to fix the posterior annulus, they used a small strip of autologous pericardium and placed them from about 7 o'clock to 3 o'clock in order to limit any dilation of the posterior annulus. They used a thin strip of autologous pericardium.


So all is well in the Flawed & Disorderly household! I couldn't feel more blessed and less worthy. Props to the big man upstairs who has brought Lindley through this ordeal so beautifully and shown me He works in mysterious the fertility drugs. And for the record, I was never exposed to any of the countless x-rays Lindley went through. Ironman went with her each time. When they brought the machine into the ER, I was asked to leave the room. They didn't even ask me if I could be pregnant. I was ordered out, so kudos to the ER for SOMETHING.

This song has really stood out to me for the past year and a half. It's one of my favorites. I really relate to the parts about the darkness closing in, etc. I can't sing it at church without getting teary. I was not the model of strength in faith. I was full of fear and doubt. I wish I could say I went through this whole experience blessing His name, but with anxiety and fear grew cynicism and a little bitterness. Not just aimed towards God but life in general. It's easy to bless His name when the world is all as it should be. I relied on prayers and felt that would make a difference, but I held back on giving all my fears over to God. For that, I am sorry. If I went through another crisis tomorrow, I'm still not sure I could go through it without fear. It's a journey for sure. Faith and trust building is a long process. Anyway, here's the song:

Blessed Be Your Name
by Matt Redman
album: Where Angels Fear To Tread (2002)

Blessed Be Your Name
In the land that is plentiful
Where Your streams of abundance flow
Blessed be Your name

Blessed Be Your name
When I'm found in the desert place
Though I walk through the wilderness
Blessed Be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say...

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

Blessed be Your name
When the sun's shining down on me
When the world's 'all as it should be'
Blessed be Your name

Blessed be Your name
On the road marked with suffering
Though there's pain in the offering
Blessed be Your name

Every blessing You pour out
I'll turn back to praise
When the darkness closes in, Lord
Still I will say...

Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name
Blessed be the name of the Lord
Blessed be Your name
Blessed be the name of the Lord
Blessed be Your glorious name

You give and take away
You give and take away
My heart will choose to say
Lord, blessed be Your name

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Friday, October 19, 2007

Lin's follow up

Good news: Lin's appointment went really well. More later.

Bad news: I've been puking my guts up since the night before last. I think today is going to be a better day. I'll update you on Lin's appointment when I'm feeling better.

Monday, October 15, 2007

Our ER Trip

Update: Photo removed for safety reasons.
An update on Miss Lindley.
(Here's a picture of Lindley that my sister took last month, I think.)

About 5:30 a.m. Sunday morning she started throwing up. A much longer story a little shorter...I called her cardiologist in Fort Worth. Found out it could just be a virus or a sign that fluid was building up around her heart. Watched her grow more weak and pale by the hour. The cardiologist told us we could stay in our town to have IV's hooked up for fluids, a chest x-ray, blood work, and an echocardiogram. She warned us we'd have to go through our town's ER and that it would be a 6 hour process since it was a Sunday. Very close. It was 5 hours in the ER. Good times.

The cardiologist was pretty sure it was probably just a virus, but we were scared to take the gamble and keep her home. Once family came over to keep the other kids, Lindley suddenly perked up and made us feel like maybe we were jumping the gun on the ER decision, but before long she grabbed her blanket and laid down on the floor by her grandmother's feet.

We decided to take her to the ER---8 1/2 hours after the vomiting first occurred, so we were tired of waiting to see what would happen.

There was no kind of sedation, and obviously children were not their speciality like Cook Children's. I don't know how many IV's were stuck into her veins before they finally called a pediatric nurse and were successful. Words can't describe the combination of Lindley seeing another hospital bed and nurses combined with being stung with needles and blood running out of her arms onto the sheets on both sides of her. Blood curdling screams for 3 hours straight is the best I can do to describe it as people held down her arms and legs and proceeded to do blood tests, IV's, chest x-rays, and an echocardiogram.

We promised her the echo wouldn't hurt. We didn't think about how hard the tech would be pressing down all around her incision over her broken bone down the center of her chest. We also didn't know that the tech wouldn't notice she had stuck a lead (or whatever they're called) on top of the hole where her chest tube entered. When that was removed, it ripped off the scab. SCREAAAAAAAAAAAAMS all around. We wanted to hit her. We've been specially doctoring that spot for an entire week trying to get it to heal properly.

Then it was just a matter of waiting around for our local ER doctor to get all the results to the on-call physician in Fort Worth. We turned off the lights, and Lindley fell asleep for almost two hours. She cried and whimpered in her sleep every few seconds almost the entire time. I've never heard her do that before.

Yesterday was horrifying compared to our experience at Cook's. I think the difference was that I knew they were hurting her because they were incompetent. The screams at Cook's were usually out of fear and not pain. I know their incompetence was partially related to the fact that they weren't trained to deal with a child like her, so I didn't get furious enough to file a complaint or anything. I'm just really glad it's over. The thought of having to take her back to Fort Worth on Thursday to do it ALL over again is something I DREAD!

Hopefully by then her virus will be gone and none of our other children will be sick.


Wednesday, October 10, 2007

We're Home!


Sorry I'm just now updating! We got home Monday evening. We've been exhausted!

Lindley is a little sore, but that's to be expected. We're still having to keep her from running through the house and playing too roughly with her siblings. She has that broken bone down the center of her chest that will need 6 weeks to heal. She has one other wound besides the incision that we're having to take care of once a day. It's a hole in her side where the chest tube entered.

Understandably, the hospital experience was pretty traumatic for her. She is so shy and flips out just going for check-ups to the pediatrician. There were always people coming in the room touching her, sticking her, flushing IV's, etc. For whatever reason, they would pull her out of bed at 4 a.m. to weigh her. She lost 5 pounds which is a lot when you're only 32 pounds to begin with.

She used to take her medicine daily so happily and never complained. Now it's a scream fest that involves trying to get the meds down her throat before she spits them back out. Before she loved getting nakey. Now she doesn't want anyone to even lift her shirt because they did that to her constantly in the hospital. She seems self-conscious when she has to take off her shirt in front of her siblings. She puts her arms up over her incision. We have to rub medication into her incision and the wound from the chest tube, and that (along with anything else involving going near her shirt or giving her medicine) is another scream fest that requires her arms and legs to be pinned down so we can apply it.

Hopefully things will calm down as soon as the hospital becomes a distant memory. I wish we weren't already going back next Thursday for follow-up appointments. We felt like SUCH idiots on Monday. We talked to various people in the check-out process. Signed some papers. Told all the nurses good-bye. Walked clear across the other side of the hospital to get to our car. We even had Lindley buckled into her car seat when I received the phone call, "Uh, where are you? We haven't released Lindley yet. The cardiologist still has to see her, and we have to go over more information with you." AAACK! Once she said that, I remembered she said she had a folder for me. Lindley wigged out when we had to take her back to the hospital room and sit there for another hour as the world's slowest whoever she was went over every piece of information in the folder multiple times. Then the cardiologist came in, touched her, pissed her off, and started another crying binge that I almost joined in on.

Currently, I'm most concerned that Lindley isn't telling me when she's hurting because she knows she'll have to take medicine. She cringes when I have to lay her down to change her. She can't sit up from a lying down position very easily--especially if it's on a really soft surface.

The kids go from room to room to play. Though we check in on them constantly, it scares us to death if we hear Lindley start screaming. She shouldn't fall down or have a toy shoved into her chest. Her bones are wired together, so it's a strong hold, but we still have to be cautious. We also have to be very careful that she doesn't get sick. The incision and wound from the chest tube are direct lines to her heart, so it's also crucial that no bacteria finds its way through there.

I think that pretty much updates the situation and Miss Lin. I've appreciated you guys as always! I'll update as I get new information. Later!

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Friday, October 05, 2007

Just Kidding!

Lindley wasn't able to go home today after all. The cardiologist yesterday must have been smoking crack. I wasn't comfortable with the thought of her going home so early because she still looked really weak. She hadn't even stood up yet. Her echocardiogram showed great results this morning! Woo hoo!

The reason she's not being released is that she's anemic. This morning she was back to not eating, and what little she drank was immediately thrown up. She was very weak. The doctor said she probably wouldn't get to go home until Monday. I wanted her to be well enough to go home today, but I could tell she wasn't. I'm relieved they knew as well as her mother to keep her under medical supervision. :) I couldn't imagine her traveling 3 hours in a car seat in the sickly state she was in.

After her nap today, good things happened! She finally agreed to walk! She was very careful and played with her brother and sister in the toy room. She had her heart monitor tucked into the back of her pants. Then she became very fatigued and her Pappaw carried her back to bed. She didn't eat her dinner. :(

That is all for my updates. I'm doing a ton of laundry tonight at the Ronald McDonald House before heading back to the hospital. We've only slept here two nights, but the kids have taken naps here during the day. Anyway, I know we'll be wanting to jump in the car and leave when Lindley's released and the rules of the RMDH are that you wash every linen from the mattress cover to the blankets to the bedspread. Plus I've still got all the normal stuff like towels and sheets to wash as well as vacuuming to do. I cleaned the bathroom this morning thinking I wouldn't be here tonight, so I'm going to keep it nice and clean by not staying here anymore! I slept on a twin bed, and Michael slept with Lindley on the full sized bed the one night he was here.

I hear that people still share full sized beds even though they were born in the 20th century and have full sized bodies like those of us born further into the decade (as if I'm tall). My grandfather was a tiny man and would have fit perfectly in a full sized bed with his wife. My husband is 6 feet tall and his shoulder span hogs the bed. I'm not into touching while sleeping, so we're used to a king sized bed. We whine even when we have to share a queen because our butts touch when we lay on our sides.

Why am I telling you all this? I'm whining. I'll shut up now.

That is all.

Lindley May Leave Today!

She may be going home today!!!! ACK! They're doing an echo this morning to determine how she's doing. She has a halter monitor on that is mobile, and she still has an IV in each foot, but all the rest of the tubes came out yesterday. It didn't feel too good while it was happening, but she's doing pretty well. Evenings seems to be the time she feels best. The scar isn't as scary as I expected. A lot of fluid is still draining from a couple of the places where tubes were, but we were told not to worry. What else? Ummmm....she finally ate a little food yesterday!

I've been asked about how we're doing as parents. Ironman is feeling much better now. The cardiologist seems to think she's a 1+ now as far as leakage goes. You may remember on a scale from 1 to 4 that she was a 3+ before. A 1+ is considered good and hardly any leakage. If the soochers (sp) hold, it's possible she may never need surgery again. Then again, I heard one story of the leakage coming back after only 7 months. The point is, this news gave Ironman much needed relief. He refuses to leave her side.

I slept in the Ronald McDonald House last night for the second time, but he stayed with her. I was allowed to sleep in her bed on the PICU floor, but it's not allowed on the regular floor after they had a horrible situation with a parent who rolled over on his child and smothered it. The children aren't hooked up to monitors on that floor, so when the nurse came in to do vitals, she couldn't find the baby in the bed. She rolled the dad over who was sleeping on the bed/couch for parents, and found the baby under him. Horrible story!!!

Anyway, Ironman's doing much better. You might recall I've been pretty much a basket case leading up to this whole ordeal. I didn't completely divulge how miserable I was, but the anxiety of it was really putting me on edge. The good thing is that I was completely calm and at ease through pre-op day, the waiting through surgery, and ever since. I didn't get the happy pill I set out for, but on Thursday night before surgery week, I was given Cymbalta that takes 1-2 weeks to work. I'm not sure if I have Cymbalta to thank for the peace or God or God for giving me Cymbalta. Ha. Anyway, I was not at all my normal spazzy and worrying self for whatever reason. The stress has not gotten to me like it usually would, at least I think Ironman is still in one piece. I was also given an Rx for a sedative but found I can't take it for a couple of reasons. One is that it makes me too sleepy. Two, if I take it at night with my new sleep meds, I do bizarre things which I can't talk about here. But I'll save them for rainy day when it's okay for me to be sleepy and weird.

Better get ready for the day. I woke up extra early this morning, but now it's time to get up and around! Thank you for all your sweet comments you've been leaving!

Wednesday, October 03, 2007

Lindley Day 2

Just a quick note to thank you guys as always for all your kind words.

Lindley is doing well! Her leakage before was a 3+ on a level of 1 to 4. Now she barely has any leakage at all! The breathing tube was removed before she was sent to the ICU. Yay! They are currently taking out several other tubes. Ironman told me not to watch, so I'm taking this opportunity to update you. She's been sedated most of the time. She cried for hours last night asking me to give her something to drink since they had to dehydrate her during the surgery. She was only allowed one ice chip every 30 minutes and her lips and tongue were parched. I felt horrible for her. She didn't understand why I wouldn't give her something to drink.

Today she's been more agitated as predicted. She's waking up more and wanting to pull out the central line that goes from her neck down into her heart. She's angry that I won't take the tube out of her neck. She's been asking for her grandparents to hold her, and she wanted to see her twin sister and little brother. Unfortunately her twin was scared to see her as she is and didn't want to be around her, but Lindley cried when we took Gracie away.

So I'm happy to report the surgery went well, and now we're praying for a speedy recovery. I'm ready to see her back to being herself.

Gotta run! More later as I have time.

Monday, October 01, 2007

Pre-Op Day

Hey Friends,

We're here in Fort Worth at the Ronald McDonald House! I really appreciate you, Anonymous (meow) for offering to cover our stay! Thanks to insurance covering so much of Lin's surgery, we're no longer spazzing out about all the expenses, but THANK YOU! Hugs! We've got it covered.

I have to make this super fast.

Just wanted to let you guys know the surgery won't start until after 1 p.m. Tuesday. We're second in line for surgery. And it's estimated to last 6 hours. We've completed all of the pre-op stuff for Miss Lin. She was a trooper.

My parents are all set up at the nearby RV park. The RMDH is incredible just as everyone said it would be. I can't believe just the amount of food they provide for free. Currently the toilet in our room is malfunctioning and the floor was all wet, but someone should be here within the hour to fix it or we'll change rooms. They've got everything from exercise rooms, to games rooms, to media rooms, to play rooms. There's kitchen after kitchen. I've never seen so many dishwashers in one place! Or refrigerators! This place is awesome. And they only charge $15 a night. Chili's is catering tonight's dinner. If you want a worthy charity to contribute to, this is the place.

I have to cut this short because my battery is about to die. Just wanted to give you guys an idea of what's going on.

Thanks as always for your thoughts and prayers! I'll update you as soon as I can.

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