Thursday, April 30, 2009

Normal? I do not think that word means what you think it means!

I was writing in response to Mckmama's post today and realized I too am settling into a whole new "normal". This normal is different than the new normal I thought I was getting used to a month ago. Here is what I wrote her;
Normal is relative. I am mom to a Downs child, a bi-polar child, 2 autistic kids, a Pfeiffers (craniofacial) child and now a BPD Lung baby.
Normal is relative. We too are learning our new normal. It consists of 24/7 Oxygen saturation monitoring, Oxygen machines and NG pumps. Oh how I long for the normal I used to have (though by many people's standards it was far from normal)

Each child always brings new challenges and unless someone has, like you and I, Sat endless hours over weeks and months with your child in a Hospital room watching them fight for their lives, they cannot understand our new respect for "normal".

The normal we long for consists of no machines to monitor or children's lives and no needing to be ready at a moments notice to live in a hospital.
The normal we want consists of children who don't listen and get into our stuff and sneak a second dessert or stuff an entire roll in their mouths!
The normal we long for does not have to carry an extra diaper bag full of medical equipment.

The good news is you will get used to it. This new normal will one day be routine and people will stare in awe as you maneuver everything and everyone and you will forget the old normal until someone points out that they "could never do all that you do" and then you will remember the old normal and realize that the new normal is not so bad and you realize that it COULD be worse. You could go back to that old normal without one of your children and you realize that the new normal with your child is MUCH better than the old normal without them...

Those of us navigating the New normal will navigate it together and be there for each other while we define our normal.

I am struggling with my new normal. My normal has been flopped around and honestly I thought my normal before was hard but this new normal is just starting to sink in. It is sooo much harder. I know or at least I hope that one day this new normal will be routine and old and I long for that day.
But now I am getting used to not feeding my baby from a bottle but from a pump and getting use to the fact that she may never be free from wires and tubes and I may never get to leave the house without that bag of medical equipment and I know that SOMEDAY it will be normal but now I wonder why. Now this new normal staring at me scares me. I do not know what to expect and I just long to be my old normal again. I have so many questions and feelings and thoughts and I don't know how to process everything. Do I give up on one child to allow more time for the others? What is this new normal? What exactly does this new normal have in store for me?
Today at mom's we were told that parenting is like being a Gardner, most of our time is spent on our knees. Perhaps it is time to hit my knees and find out where I am supposed to go and to ask for help and guidance and acceptance of this new normal.

Wednesday, April 29, 2009

Monday, April 27, 2009

Not Me Monday!

Welcome to Not Me! Monday! This blog carnival was created by MckMama.

Ok Here Goes, You need to write about all the things you did NOT do this week..

1. I did NOT buy a short bus in which to haul my children around in and my children do NOT love said bus. I also did NOT buy said bus without my husband's knowledge. Nope Not Me!

2. I did NOT forget to turn on my Daughter's portable oxygen tank when Tom, her and I went out to dinner. (and she was satting at 95 when I noticed that thing I did NOT do several hours later!) Nope again Not Me!

3. I did NOT forget to cap Soli's NG tube after a feeding and spill it on me. Not Me!
So what did you NOT do this week??

Thursday, April 23, 2009

Slightly Depressed

Orange for Stellan (a bit late but still)

We had another Pediatrician appointment today. Soli has not gained even an ounce since Tuesday. So I requested her NG tube be put back in. We see the GI dr tomorrow. I am so scared he is going to label her FFT (Failure to Thrive) She is only 6 lbs 11 ozs and her adjusted age is 1 month today.

NEWSFLASH: I am not supermom. I do not know it all. I am scared.

I cannot do any of the "normal" baby things with her. I want to pick her up and walk around with her but I can't in fact I cant hold her well at all between the O2 the pulse ox monitor and the NG tube. Forget about walking around with her. Every time I try to feed her she gags and acts like she is going to throw up. She is not gaining weight so I know I must be doing something wrong. I so not like it when I am not in charge. I do not like when things are out of my control. I HATE not knowing how to "make it better." I am stressed out about her eating and then stressed out about pumping too. I am so near quitting and just giving formula I mean obviously my milk must not be very good if she is not getting bigger on it. Maybe she would do better on formula. Maybe I would be less stressed about having to produce enough for her. But then it is exactly what I did not want to do. I wanted to nurse her for at least the first year and maybe more. But nothing is going according to plan is it? Thing is, This IS God's plan. Now I have to discover why? So If someone could clue me in so we can get past this then I am all ears...
Here are a few shirts I had made for Soli.... Oh and me!

Wednesday, April 22, 2009

Karma or God's Wisdom

This Sat I will walk in a walk I had participated in for years when I was little. Back then it was The March of Dimes Walk America. Little did I know 20+ years ago when I was walking with my dad that one day I would participate in the same walk years later in my daughter's name. How could I have known that money I helped raise back when I was 7, 8, 9, 10 or so would come around to help save one of my own children? I could never have imagined the life that was in store for me, I just knew, even at 7 years old, that those tiny babies needed my help. So I walked, I bugged my neighbors for pledges and walked the long walk. Granted I usually only made it to the first maybe 2nd Checkpoint but I was proud.
Now years later my child has benefited from my walking as have MANY other babies. I never participated thinking this may benefit ME someday just that I knew my walking would help save a baby somewhere.
Karma? Maybe. God's wisdom? I think so. These unknown babies were so important to me back then. God knew why because he had in store for me to one day be the mommy to one of these littlest Angels. He was preparing me I believe, for my future role. None my friends walked I was alone with my dad and a sea of strangers and I could not have been happier. Now on Saturday I will once again Join the sea of strangers in Sacramento to walk the walk. Only this year I will not be alone. I will walk proudly as the mommy to my own miracle. I will walk with my head held high, proud as ever carrying my miracle with the knowledge that my walking is helping to save someone else's Angel. And as I walk I will hold tightly and thank God that my prayers have been answered and Soli is with us. I will also hold her a bit tighter as I see all the teams honoring the Angels who were not as fortunate as Soli and left this world all too soon. But as long as there are babies like Soli I will be out there walking. One day we will be able to prevent Premature birth and all babies will be born healthy.

Wednesday, April 15, 2009

Soli PICU day 4.

Here I sit 4 days into the latest hospital stay for Soli. At first Dr's thought that she had aspiration pneumonia. Now they are saying they think she has BPD (her preemie lung disease) and some kind of winter virus on top of it. She is on 2 liters of O2 @45% . She is not tolerating her feeds well right now either. She is also very wheezy. She is not tolerating the volume of feeds that they want her to take so after they feed her she is throwing up. I need to talk to the Dr about upping the calories and lowering the amount she has to take in.

She has been having alot of Bradys (heartrate drops) she has had so many we have once again moved rooms. This time it was a move to a private room in the Intensive Care side of the PICU.

Well We just finished a bottle she ate 50ccs in about 8 min. I think the 50 is her limit and she seems to be holding it down now.I am going to fortify her 50ccs myself and see how she does.

I have been sitting here thinking about what it is I am supposed to be learning from this. From Soli. What is it that God is trying to teach me? I think He is trying to tell me to slow down.
There is so much going on in my life right now. Tom and Cheryl are clashing, Well Cheryl is clashing with Everyone. She has not gotten the memo that she is not the boss and she needs to figure out that she is a kid too. I know this is my fault because I have asked so much of her in her life. I have allowed her to take on more responsibility. She just does not seem happy lately. She is only 11 it can't possibally be the teen years yet can it??

I am feeling the need to change things. Some good, some not so good but changes that would overall be better. I can't say what all these changes are but some things are spending more time with the kids DOING things. Also Somethin I think Tom and I need to work on is our anger. We yell ALOT. Well actually sinceha came home from Iraq Tom is... different. He is more easily aggrivated and things that before would not phase him just really aggrivates him now. Small things make him angry and I honestly do not think he enjoys doing things as a family anymore. I do know that I handle the kids better, I have more patients than he does. So one thing we need to do it work on letting the little things go.
Another thing I am going to work on it keeping the house better. I need to get as schedule down and stick to it.

But for now I am just going to trust in God and trust that he has a bigger plan for Soli and that she will get better and this hospital stay, like her NICU stay, will be a memory soon. I have plenty of time lately to think. So for now that is what I am going to do. Sit here and try to figure out what God wants from this, What he wants me to take from this. I do know that so far Soli has taught me how much I miss my other kids when I am away from them. I am also getting a greater appreciation for Tom and his helping me out by allowing me to be with Soli. Though I must say we do not get much tome together and I know that is taking a toll on us. But I know we will get through it..

Sunday, April 12, 2009

I'm beginning to hate Holidays

Well, shortly after my last post Soli was rushed to Sutter via ambulance in respiratory distress. She turned blue and her O2 sates dropped to 61. I turned her O2 up to 2 Liters and she did not come up like she was supposed to. She was still blue so I called 911. The paramedic bumped her up to 2.5 L and got out the in-tubation supplies. Thank God she held her sats up long enough to get to the Hospital.
Once there she dropped again and she was given a breathing treatment. I was so relieved to look up and see Margie standing in tha hallway. I never wanted to hug someone more! She came in and they tried to get an IV and even Margie tried but the equipment in the ER is not set for a Preemie. Soli's Sats improved and Margie had to go give report but she said she would send someone down from the NICU to get an IV in her. After the ER nurses tried 5 more times and then the Nurse from NICU came down and after her 2nd try got a line in her foot. Poor baby was so out of it she did not even cry until the last stick.
So now it is 11:44pm and we are still waiting for a room in the PICU. I am beyond exhausted.

I will keep you all updated.. Please pray she is ok and we don't have to stay here long..

Happy Easter!

Wanted to drop in & Say Happy East to everyone!

Friday, April 10, 2009

New Laptop!!

ok so I think I am going to like this new laptop. Yes I splurged and got myself a new HP Touch Smart laptop. It allows me to actually write and then types what I write. This has got to be the coolest thing! - Well everyone here is doing great. Mac's appointment in SFO went great. She does not have to go back-till April 2011! Woo Hoo. Soli is nearly 7 pounds now. We go back to the lung Dr on Monday. Soli Saw the Heart Dr on Thursday and she is boarding high BP but she does not have to go back for 4 months. Things are a bit stressful lately. I find myself wondering no, wanting to simplify my life lately. I have been going thru stuff in the house and purging things I do not need. I have too much stuff but I am the kind of person who can't get rid of things I might be able to use later. I am slowly getting over that though.

Wednesday, April 1, 2009

Why We walk with March of Dimes

MacKenzie Born 6 weeks too soon

Riley Born 5 weeks too soon

Kassiah Born 7 weeks too soon

Caden Born 7 weeks too soon

Corbin Born 6 weeks too soon
Solange Born 15 weeks too soon

They are why we walk.... and will continue to walk for years to come.