I know I missed Tuesday this week

but I have come up with a list of subjects to cover for the next couple of weeks. It's mostly a "sad" list as it is for me to write about our friends from the Ronald McDonald House over the summer. I think about them all the time and want to put down some of that experience so I never forget, as I'm getting old and I have a tendency to forget a lot these days - my DH would confirm this enthusiastically.

This Tuesday was going to be about Baby Justice. A full term seemingly healthy little boy born to a late teen aged mom. I met Justice's "Grandma" at RMH shortly after we arrived there. We had something in common - we are both named Jill. So she was probably looking at me and guessing we were around the same age and here she is a "grandma" and I'm a first time mom. I keep referring to Jill as quoted Grandma because her son was not the father, he met the mom while she was pregnant and stepped up to be a father to this baby as the birth father was not in the picture. Jill was at RMH because the mom was still hospitalized in a different part of the state. This is Jill and Justice's story.

Justice and his mom came down with infections shortly after his birth. The small hospital where they lived did not know what was wrong with Justice, he was full term and a healthy weight, but everything they tried couldn't cure the infection. The hospital transferred him to the next larger facility, which only kept him a couple of days before moving him on to Mott Children's Hospital. Jill had come with Justice as he moved from one hospital to the next since his mom was still hospitalized herself and couldn't travel. Jill kept vigil at Justice's bedside as the doctor's at Mott tried to figure out what was wrong.

Eventually, Jill's son and Justice's mom came to RMH to be with Justice and Jill returned home for a week, then she came back on the weekend. Justice seemed to be improving and the doctor's thought they had his problem figured out, there was something going on in his liver. The doctors tried a few things and finally settled on doing chemo to kill the bad liver cells. Justice was approximately 12 weeks old at this point.

After a couple of days of chemo, something went wrong and Justice began bringing up blood from his stomach. Jill's son told me that the hospital had called him at 7 that morning to say that Justice was not going to make it. Justice passed away later that day. Jill arrived too late, she was too far away. I felt so bad for her and for Baby Justice. Justice's mom didn't really seem to comphrend what was going on, she was still recovering from her infection (MRSA) which had colonized in her C-section wound and she had undergone surgery to remove some of the infected tissue before she arrived at RMH. Emotionally, Jill was the only one attached to Justice and to this day I wonder how she is coping and I'm praying that she finds peace in knowing that Baby Justice is no longer in pain and he is a beautiful angel now.

Well I've already blown one

New year's resolution. I was going to write at least once a week here. I had picked out Tuesdays as my day to write. I'm a little behind. lol. I guess this entry will have to make up for the last 2 Tuesdays.

We had a nice, quiet Christmas and the same for the New Year. We did go to a friend's house for NYE and as the clock struck midnight, my precious baby girl was snoozing in my arms. DH & I gave her kisses and then kissed each other - 2009 was history and we are both looking forward to happy, healthy 2010. Maybe one with a little less drama.

Right now I'm in the process of getting our application in order and ready to mail off to the Shriner's hospital in Chicago. We are getting a second opinion for Laura's leg. Last week her PT felt her bone and in her opinion it seems to be too thick to be a fibula, meaning she's not missing her tibia. This matches the initial diagnosis of her missing her fibula and what I've believed all along, from what I could tell when they did the x-ray of her legs back in October. DH thinks that the drs. can't be wrong, like how could they not tell which bone is missing. But I think of all the mishaps that happen every day at hospitals so much that they now write on patients where to operate, since they are removing the wrong organ from the wrong person, etc.

Until Tuesday, it's getting late and slowly over this evening my darn throat has progressively gotten sore and it's not just allergies this time, I can tell it's the real deal as my left ear is hurting too. :( What a way to start my weeks vacation.

Interesting blog post

helps me feel a little better to know I'm not alone, and what I am experiencing is real.

http://chdbabies.blogspot.com/2009/08/nicu-parents-trauma-may-last.html

The last two days have been a little odd as DH and I had a huge "stupid" fight right before I had my therapist appt. on Monday night. Since the fight we've been rather cordial to each other, and I think he realizes that he was an ass but I don't know if he realizes the fight really wasn't about the bottles not being made. We have a lot to work on.

Gloomy day outside, it's definitely a pj day

Yesterday was a beautiful sunny day and now the winter gloom has set in.The only thing to brighten this day is Laura's giggles and smiles. Hard to believe she's six months old and growing so fast. She loves mashed potatoes and oatmeal. And yesterday Daddy gave her some cranberry jelly, the first little bit slid down her throat so fast I don't think she got a chance to taste it, but the second bit she loved, rolling it around in her mouth and smacking her lips.

We had out family Thanksgiving yesterday because DH had to work on Thursday. Thursday my sister came over and we had Thanksgiving lunch together. It was the first peaceful Thanksgiving in a while. In the past either DH or my sister have done something to tick each other off and then there are words or worse silence and the whole day is crappy. Mostly it's DH getting ticked over nothing and then getting even more ticked because I don't "side" with him. Right now they are not speaking to each other, over a couple of stupid things DH has done but I don't blame my sister for wanting an apology, which she won't ever get. I rarely get an apology from DH when he's wrong. Probably because he's never "wrong" in his eyes.

Still don't know what to think of the counselor, we've had two sessions and I don't know if it's really helping or not. I guess it's too soon to pass judgement. But I have recently come to realize that some of what I'm feeling maybe the effects of physical changes I'm having. I finally broke down and checked my blood sugar and it was sky high. Reading up on the Effexor I'm on, there is no proof that it can cause diabetes or high blood pressure but it has been reported, and I know that all the stress I feel can also be a contributing factor. I'd like to stop taking the Effexor since I'm on such a high dose but I'm afraid. The withdrawal effects are horrendous, and I did experience some of them back last year when I had the flu for a week and I didn't take it for almost 2 weeks. I may have written about the complete meltdown I had while DH was gone to the store. But I also know that was because I had stopped cold turkey and you are supposed to wean down on the med to minimize the withdrawal effects.

S c a t t e r e d . . . .

That is my brain right now. I'm seriously on the brink of losing it, I think. Today it was my keys, we were all ready to walk out the door only I couldn't find my keys. I was an hour late to work and the sitter because of my damn keys. I looked everywhere, even the place I eventually found them - the diaper bag. I had checked all the pockets twice when I finally looked inside the bag and under Laura's nebulizer they were hiding. Errr.

I have an appt. with a counselor tomorrow. I feel so overwhelmed that if something doesn't change I don't know what's going to happen. I love my little snuggle bug and I would never do anything to her nor would I ever hurt myself, I just feel like I want to go hide in a closet or a corner and never come out. Not good when I'm the breadwinner in the family and the economy is in the toilet.

Things that I would love to happen (even though I know they are not possible):

1. DH to take care of DD for whole week by himself - everything bottles/formula/baths/medicines & breathing treatments, etc. and take care of the dogs too.

2. If #1 would happen, I would like to sleep for 2 solid days of that week w/o interruptions - no questions from DH about #1.

3. 2 days of this week I would attach myself to the washer/dryer and take care of all the laundry that has piled up in our basement because of us spending the summer away from home and leaving in such a hurry there's laundry that's been on the floor since May! I'm so embarrassed to admit that!

4. So now I have 3 days left - 1 day to clean all the windows, walls and floors. 1 day to clean all the closets out. 1 day to clean the kitchen cabinets/pantry/fridge out and clean the fridge, stove and reorganize all the cabinets.

Whew, then I'll need another week to recover from all that cleaning. So maybe I should sleep one whole to energize for #'s 3 & 4 and then take the other whole day of sleep to recover. :)

But that's just a fantasy - the reality is one day the laundry will be done but I'm guessing not before the year is over, and maybe the kitchen will get done Thanksgiving weekend. The windows will have to wait until spring as it's starting to get cold out. But somehow I do have to get the living room/dining room back in order for the holidays or we'll never have anyone over.

The hips are good . . .

but that was about all the good news we received. Other than the toe on the left foot can be moved up and over and one of the big toes (or part of it?) can be removed so that it will be easier for Laura to wear a shoe.

They won't do that surgery until she's at least a year old this way the foot is bigger and easier to work on. As for the right leg, they are just going to "wait and see" how it grows and develops -- ie. they don't want to do anything but amputate when she's a bit older.

Last night I lay in bed thinking about this and crying. Am I being selfish in wanting to keep her leg? What would she want? I feel like what ever decision I make it will be the wrong one. I'm afraid if we wait much longer then there won't be any hope in straightening out her leg, even if it is shorter than the other one. It looks like it is growing but it's hard to tell.

She cried when we were at the dr.'s office after the dr. left the room to double check the u/s results. It was more of a "I'm scared" cry and as DH and I comforted her we said "we're not going to let them cut off your leg" and she seemed to settle down and be happier after hearing that. Or that's my personal opinion on her reaction.

And I feel horribly selfish when I know there are people out there that have lost a baby or a child this year, that I'm even wasting time on something I have no control over. I should just be enjoying every minute I can with Laura. I still cry every night as I rock Laura before bed and sing Popeye the Sailor man. I sang that to her in the NICU, as a way to tell her I knew/know she's a strong little girl, right now her spinach just happens to be formula.

Just a quick update

as more information will follow either this Thursday or Friday after we have our follow up with the orthopedic dr.

Laura had the u/s done on her right leg this past Tuesday and while the dr. doing the u/s didn't really talk to me about what he was looking at/observing he did talk the the resident that was watching to learn and the tech who was making notes on the u/s machine to correspond with the pictures. Things did not sound good. They are still saying the Tibia is missing as opposed to the original hospital reports that it is the Fibula that is missing. Also, sounds like the right hip is not good and Laura is missing her Achilles tendon in the right heel/ankle.

If her hip socket isn't good I wonder if they would even go as far as recommending her to have an amputation. And we're not doing that anyway. I guess time will tell what our options are.