Rambled Mutterings of a Worried Mommy

I don't even know where to start. It takes me two hours to fall asleep at night because I have so much stuff on my mind. I feel like I've been in a free fall since we were first told that Kian has a bicuspid valve.

People have been so nice. A few women on boards and blogs have told me about loved ones (always men btw) with the same diagnosis. All have managed to live very healthy lives. (Thank you to everyone who has given me a hopeful story of someone with this heart defect--it helps me so much.) I'm hoping for the same result but I'm so frightened because there is nothing I can do to protect him. Except send him for this procedure and hope for the best.

The procedure is now on Tuesday July 3rd at 7:30 a.m. We have to be there at 6:00 a.m. to start the intake, prep Kian for the procedure and meet with the doctors. We'll be getting up at 3:00 a.m. to feed him because he can't have any breast milk for at least four hours before the procedure begins. I almost feel sorry for the nurses around him when he wakes up after the procedure. He is going to be enormously hungry after at least eight or nine hours with no food. I'm looking forward to his happy smile when he sees us after the procedure, but what I really think I'm going to see is the howling face of my boy screaming for food. Just so long as I see him awake, I suppose I really won't care.

Angie is acting out a bit lately. We haven't told her that I'm going to the hospital with Kian. We didn't want her fretting over it for too long. Chas's Mom will watch Angie while we are at the hospital. I love his Mom but I really don't want anyone around right now--I'm too tense. The reality is that someone has to watch her. If we used my Mom again, Angie would forever panic at being left with her because we had Mom watch Angie after the fire and during Kian's birth as well. Plus, I think Chas is worried he'll snap at Angie due to the stress he's feeling. I think he believes he'll behave better for his Mom.

I can explain the details of the procedure in a matter of fact way. I've done it several times this month. But when I stop and think of them performing it on my boy, I feel like I'm going to faint. When Angie was two months old, I felt bad getting her immunized for the first time. I thought that it was a lot to put a little person through when they don't understand what's happening. Now look what Kian will need to endure. Apparently, we won't be with him when they use the anesthesia. I feel awful that he's going to be in a room of strangers and he won't see any familiar faces before he goes under. I hope he doesn't feel abandoned.

I hope this procedure works for him. He is such a sweet little guy.

Happy Dance: Misadventures of a Bead Snob

I finished the Cancer Awareness Blackwork Design tonight! What do you think of my compromise? The design is stitched on an oppy lugana using Grape Slushy, Heather's Sweets and Kiwi Lime Pie from Six Strand Sweets. I started to use Mill Hill beads to complete it because MH beads are fine (or so I thought) when they are not placed directly next to one another. However, I promptly pulled out the first bead (too thin--you know how uneven the widths of the MH beads are). I had toyed with some delicas earlier and decided to use them instead. I settled on #117, left over from my GTK kit thanks to the wonderful kitting at European Cross stitch, for the purple, and #274, from a Bead Collectors Pack also thanks to ECC. I used Piecemakers size 28 so that I could really enjoy beading (note to self need more Piecemakers). I'm very pleased with the result--it looks very nice in real life.

Now I just need to gather the supplies for finishing it. My plan is to make a little book with this design and the Labrador. I need to find some nice fabric with blue, purple and green for the cover. I may even go wild and try my hand at trimming the book with ruched ribbon.

The news regarding Tina's health is not good. According to my Mom, Tina was told that either she attempt some stem cell treatment, or she only has one year to live.

I guess it doesn't hurt to hope for a miracle.

More stitching stuff

Here is the completed Angel Labrador Puppy I mentioned a few posts ago. This design was a freebie from The Vermillion Stitchery a few years ago and had been a UFO for a while. The freebie was actually a chocolate labrador but included a conversion for a black lab. I thought the conversion looked more like a grey lab so I added some DMC 310 since Tina's lab (Pepsi) is actually black. I'm still not sure I like it, but it looks nice on the scan. Oddly, one of the grey shades looks purplish in fluorescent lighting. I also chose not to stitch the bit connecting the halo to the dog. I want this to be a guardian angel for Tina, not a dog in a costume. I hope she likes it.

This is the cancer awareness freebie I'm working on as well. I think I 'll need to frog at least some of it. I tried researching the proper color ribbon for lymphoma. Some websites have it listed as lime, but another one states that this color is not recognized by the American Cancer Society (who knew it could be such a big controversy). Purple/lavender is used for general cancer awareness instead. So I started it with the purple and it looks nice. It even matches the labrador's gown. However, when my Dad came up for Angie's birthday party, he had a big lime green lymphoma awareness ribbon magnet on his car. So I've decided to go back to the lime color. I just wanted to post a picture of the purple because it looks so nice. I'm using Six Strand Sweets for this design and I have a nice lime color. I even have one that is both purple and green that I considered using. I think I'll stick with a solid color. I thought about frogging just the outer stitches and leave the inner work in purple. I don't know if if would look odd. I suppose I could do that and if I don't like it, I can just frog the center too.

In other stitching news, I am almost done with Ballet Pigs QS. I have roughly 300 stitches remaining. I tried to count them, but the best I could do was get over 100 before I became lost. It's mostly odd confetti stitches and missed stitches now. I'll need to go over it with a magnifier to be certain I've completed all the stitches. Maybe, just maybe, I can finish her by the end of June/beginning of July.

Finally, I received my sample of hand-dyed fibers by Vicki Clayton. As luck would have it, my set included blues, purples and deep reds--among my favorite shades. They are only half yard lengths so I'm not sure how I'll use them just yet, but I am curious since so many stitchers rave about them. Maybe I'll attempt a biscornu. Judy Odell was tempting us to try making one on her bulletin board, so maybe I'll give it a try.

That's all my stitching news for now. Obviously, I'm a bit more focused on Kian this month.

Medical Update

We took Kian to his cardiologist today since they postponed the valvuloplasty. Chas spoke to her yesterday and made it clear that we weren't happy and that she had set up these time lines.

She suggested that he should come in today to see how he is doing.

They did an ECG (and for the first time Kian did not fuss during the test). The very good news is that there appears to be no change in his condition. The doctors felt very reassured by the tests and did not feel the need to do another ultrasound (which disappointed Angie as she wanted to go to the "dark room"). Our primary cardiologist seems to think that Kian is still in a good place for the procedure.

We talked in a bit more detail about the procedure and things to watch for regarding Kian's health. I am slightly comforted after talking to her and greatly relieved by the fact that he is not substantially worse. But I still worry.

Now we just have to get to July 3rd and hope the procedure works for him. A few women on the stitching boards and elsewhere have mentioned that they know someone (a spouse or another child) who have a bi-cuspid aortic valve, have gone through surgeries and done just fine. I'm hoping that we'll be lucky too.

I'll be asking for some additional time off (just a few weeks and some days after that). We also won't be able to introduce Kian to his great grandparents. The Doctor suggested it would be best not to subject him to the stress of a six hour car trip. Hopefully, he will get the go ahead to travel after the procedure.

In answer to Janet's question: in the U.S. there is no agency that oversees hospitals and can make referrals to other locations. Hospitals are private enterprises and lots of medical issues (like where a person can be treated and sometimes things like what medications the doctor can prescribe) are determined but what type of medical insurance a patient has. With my insurance, we could go to the Cleveland Clinic, but the reality is that they probably could not treat Kian before July 3rd. They probably wouldn't even be able to see Kian by that time. We just have to keep all fingers and toes crossed and hope that things remain the same.

Angie told me today that she doesn't like going to Kian's doctor. While we were in the exam room waiting for the doctors to speak to us, she told us, "I'm glad we got to take Kian home." I feel terrible that we are so tense about this situation all the time. I know she is picking up on the stress, although she doesn't understand exactly what is happening. I hope she knows how much we love her. I tell her that everyday, but I'm just not able to spend as much time with her as I had hoped. I wonder what she will remember from this time in the future. Will she remember fun things like playing in the shower? Or will she just feel neglected and ignored after Kian's arrival?

For his part, Kian shows no signs of illness, which is probably part of what really frightens us. He giggles and coos at us even when he's not on the changing pad. He's a very cheerful little guy, so long as all basic needs are being met.

So that is our lives in a nutshell: we're trying to hold on to our versions of sanity and normalcy with our two beautiful kids.

@#$@@$@@%*&^!!!!!

Kian's procedure has been postponed.

Not because it isn't necessary.

Not because he has miraculously been healed.

Not because a child more ill needs to take his slot.

Why?

Because they learned that they will not have surgical back up in the event that surgery is required immediately.

Why?

Because the person they thought would be certified this week, wasn't.

No I'm not kidding.

How does one of the highest rated children's hospitals in the country not have a Plan B?

My husband referred to it as Shaken Faith.

I just hope that my child, and actually any of the other children whose surgical dates were postponed, don't suffer for this incompetence.

Reasons #45 and #46 for why I hate renting....

After the fire and while we still lived in the temporary apartment, the landlord put in a new roof (rather than painting Angie's room which still has soot stains around the vent). To be fair, it did need a new roof. However, I have been pulling piles of rusty roofing nails out of our driveway (in addition to the bits of broken glass I keep finding). They know we have a child. Why couldn't they be bothered to ensure that our yard would be safe for her?

And then lets discuss what they did to the flower beds.

On the shady side, they dropped screws from the old gutters. In the course of planting this year's bed, I've found at least thirty in the front of the bed. I haven't managed to dig much around the very ugly shrub at the back of the bed.

On the sunny side, they placed a large pile of rounded stones at the base of the drain, wich covers some of the vines and the wild strawberry, but was necessary. However, directly in the middle of the bed, where I had several pretty flowers, they piled a huge mound of dirt. Not soil from another part of the bed. Sandy, yucky dirt with rocks burying my flowers. The tiny rubies dianthus blooms every year as does my other dianthus. Somehow they managed to just miss the hydrangea I planted last year. Why couldn't they throw the dirt behind the other ugly shrub (the twin to the one on the shady side)? Then at least it would have killed the weeds rather than actual flowers because nothing grows in this dirt.

I must remove this mess before I can plant on the sunny side.

And they tore down the wooden window box leaving a ragged edge and then painted it a darker shade of grey than the house (which has white trim). I had flowers in a coconut liner. They were just tossed to the side in an unattractive lump.

They seem to have a sentimental attachment to this house (it belonged to the wife's parents I believe) but you would think that they attachment would lead to some sort of desire to keep the property attractive and in good shape (don't even ask about the condition of the driveway).

Age Old Dilemma

There is a spider crawling on the ceiling. Once upon a time, I would carefully remove the critter and gently deposit it outside. That was until I moved to North Eastern Ohio where the darn things bite.

So...

Do I talk Chas into killing it upon his return?
Or do we keep it as a defense against the mosquitos?
Or do I just leave the room and try not ti think about it?

Just Enjoying It

As is typical of the days preceding the descent (ascent? I suppose that depends on whether you use sea level or latitude to measure) of relatives and friends, we are scurrying to clean our home. The mad dash to tidy. The fevered passes with the vacuum and swiffers. The desperate planting of flowers (some of which have been patiently waiting to be planted for a month). The cathartic hosing of the house's exterior to remove the lake fly infested spider webs.

Angie's birthday party will be this weekend and we are trying to appear more orderly than we actually are. Not that we fool anyone--they know us after all. Still, we feel the need to present a clean home. We're funny that way.

So Chas took Angie to Gymboree earlier. As he was leaving, he asked what I would do to entertain myself while they were out--go for a walk, drive the car (now that my doctor has cleared me for everything), etc.

What have I done?

I've been sitting at the computer whilst snuggling our beloved son who has been napping on me for two hours. He started on my shoulder and has worked his way into a cozy little bundle on my lap.

I'm just enjoying it.

Heroic Meme

Your Score: Micah Sanders

You scored 70 Idealism, 37 Nonconformity, 50 Nerdiness

Can we play Scrabble tonight?Congratulations, you're Micah Sanders! You're good-natured, intelligent, perceptive, and naturally inclined toward technology. You're also quite innocent and loving. You've got a fondness for computers and Scrabble. Your best quality: You're extremely perceptive Your worst quality: You can be a little demanding at times

Link: The Heroes Personality Test written by freedomdegrees on OkCupid Free Online Dating, home of the The Dating Persona Test

I did not predict that result. So I'm a ten year old, albeit a super smart, level headed ten year old.

I do enjoy Scrabble. Chas and I played it frequently before Angie joined us.

I've been meaning to say this for almost a month: The last eight minutes of the Heroes season final was the best television I had seen since "The Doctor Dances."

Photo Time

We drove to a birthday party on Saturday so I managed to stitch on my mystery project for the HAED BB Challenge SAL. I can see myself finishing the first page sometime this year. I started a bit on the second page--couldn't help myself.

I really like the HAED designs. There is something soothing about stitching all these tiny little x's to make a colorful blob. Yes I am a bit crazy.

I forgot to scan the Angel Lab puppy. Silly me, I looked right at it and forgot that I hadn't posted it yet. Oh well, I post it another time.

Additionally, here are some photos of the sling in action. You can't see the satin stitched edge because Chas didn't understand the importance of including it in the photo. Trust me, it's there. Ignore the tired looking lady in the photos: that is me holding Kian.

Isn't he handsome?

Procedure Scheduled

Kian's procedure is scheduled for 7:30 a.m. on June 22nd. The cardiologist first told the hospital the wrong time frame and our appointment was to be much later this month. Chas spent some time yesterday clearing it up. We both breathed a sigh of relief that it was sooner. Still, it is going to be a very long two weeks.

I'm second guessing everything right now: Is he breathing too hard? Why is crying? Is he in pain? Is it his heart? We don't have much to look for in the way of symptoms. The cardiologist suggested "crying."

Um, he's a newborn; they do that frequently ma'am.

Chas used the phrase "ticking time-bomb" to describe the situation. As in, it could have gone off at anytime in the future and we wouldn't have known why. It's better that it's been diagnosed so that we can treat it, as frightening as it is for us.

I think we both feel like we're running a race to save Kian. I feel breathless half the time.

Seriously

Kian has been diagnosed with a bi-cuspid aortic valve which has developed into aortic stenosis. To look at him, you would never realize that there is anything wrong with him. He is a typical baby and only cries when he's hungry, sleepy or wanting a diaper change. Or if he wants me to hold him. He is precious.

What all this means is that he needs to have a medical procedure within in the next few weeks to attempt to stretch his aorta. He'll need to go under anesthesia and will be in the hospital (with me) over night if all goes well. Angie was with us in the doctor's office and she was jabbering away while the Cardiologist was explaining everything. I thought she wasn't paying attention, but then she blurted out, "We can't leave Kian alone." I reassured her that he wasn't being left alone. I'm constantly surprised at how attached she is to him.

Chas, my generally cynical husband, is being optimistic. He turned to me and stated, "We'll get through this the way we always do: together." I go back and forth between hope, worry and being terrified.

We are so very lucky that this was discovered at all. We are so lucky to live near one of the best pediatric hospitals in the country. At least we have a chance to save him.

But, as I said, my emotions are all over the place as we wait for the procedure to be scheduled. I'm hoping that this procedure will work for Kian. He may need surgery eventually. I'd like for him to have that chance too.

Please keep Kian in your thoughts and prayers.