Happy One Year Adjusted Chloe and Faith!

I'm going to scream. Twice I've written something and twice I've accidentally deleted it because I'm on the laptop. I GIVE UP! Maybe another day, this one is in the toliet for multiple reasons.

Walking

This morning we went to the March of Dimes walk in Grand Rapids. We had breakfast there and they had lots of things for Kylie to do. Chloe did well, she was a bit cranky but then she fell asleep and that was okay.  I want to send a Thank You to all those who donated to us. We both reached our goal of $500 each.
We got home just after noon and then Aunt Jan-Al picked up Kylie to spend the weekend at their house. She said she was going to take Kylie to an indoor play place.  Jan-Al sent me a picture and it looked like Kylie was having tons of fun.
Tomorrow we are having family over to celebrate Chloe's adjusted 1 year birthday. We froze her cake from January and I'm going to pull it out of the freezer for tomorrow.
I've got to post early than I do, I feel so brain dead right now. I usually have stuff on my mind that I can post but when it comes time to post, I can't think of anything to say. It's not like nothing is going on.  Chloe had a pre-appointment for her developmental assessment. The woman came in and asked some questions about how much is Chloe eating, sleeping, peeing, etc.  She seemed to think Chloe was doing good but we'll know for sure on the 14th at Chloe's appointment. 

 

Pinkalicious

Sunday I took Kylie to see Pinkalicious. She loved it, we had fun. Pinkalicious Pinkerton is a little girl who loves pink everything and most of all pink cupcakes. She eats so many cupcakes she turns pink and needs to eat green food to turn back to normal. 

On Saturday a couple of friends took me out for some pampering. A pedicure and manicure and then dinner. It was very nice to get away. Although I think my toes are very sensitive. This was my first pedicure and when the person used the pumice stone, they scrapped my toes and actually scrapped my toes, one on each foot.  Besides that part, it was great.

Chloe is doing a lot better.  She seems to be teething, nothing showing through yet but she sure is a cranky pants.

Today's events

What's happening today you ask? Well, there are three things I can think of.
Chloe is home because of her fever yesterday. She is doing much better and the her temperature at noon was 99.3. Hopefully it stays down. Because Chloe is home, I am home.  Joel is doing a JA in a day today.

Our tax woman called yesterday with a question on social security numbers, so I called today and found out someone stole Faith's ID. I heard that can happen when a person dies, there a vultures waiting to prey. The tax woman is sending us a form that we sign and send in. We have her card so there shouldn't be any problems verifying it.

Today I am 33. I'm still waiting for my surprise 30th birthday party : )  (sorry Joel, have to pick on you.)

Frustrated

I am frustrated with just about everything at the moment. Let me list them.
1. Chloe has a fever of 101.8. I thought when I picked her up from day care she looked tired and after I fed her dinner I took her temperature. I gave her Tylenol and put her to bed.

The next two go together.
2. Joel isn't making any progress on the house. Just to recap, our whole downstairs isn't really livable. He needs to do the kitchen, bath, and dining areas as well as finish the living room (minor things in there). Oh, and there is a leak from the 2nd floor bath tub pipe that we have a storage container catching the water.
3. Joel isn't really home to work on any of the house. He's working overtime right now and it doesn't look like there's any end in sight. This has been happening all year and it's just tiring.  More for him. He came home tonight and was upset he wasn't here for Chloe and her fever. I told him I had it under control.  I'm not sure if he has to work this weekend.  I hope not. Kylie has a class at the library Saturday morning and then I'm taking her to Pinkalicious on Sunday. So he needs to watch Chloe and hopefully fix the leak.
I need to get better at preparing dinners ahead of time as it's 6 when I get home with the girls and it's nice to have some play time after dinner but if we don't get done eating until 7, we only get an hour of play and then it's time to get ready for bed, which seems to take an hour.

4. I couldn't give red platelets today at the blood bank because my iron is too low. It's been a point or two lower than what's allowed. I told her I tried to eat the iron rich foods like Cream of Wheat, but then I just read how coffee and tea inhibit iron absorption - oops.  She told me to drink orange juice as the vitamin C will help absorption and then try next week.  I went straight to the store and got the iron pills and some OJ. I had to take iron when I was pregnant but the type I had was awful because I couldn't take it with food and then I would usually just throw up because it made me so nauseous. I think I took them before bed and that helped but boy they were gross pills.

This isn't really a frustration but it will cause some worry. May 14 is Chloe's next developmental appointment.  I think she's on track but they are the official word of where she falls developmentally. I got the letter today reminding me of the date and that someone will call and come over to our house to do some pre-work like last time. I hope Joel can be around for that. She's got her cardiologist appointment on the 11th and her 15 month check on the 18th. We're going to be busy bees in May.  I know she also has an eye appointment sometime in June (I think it's June).

I should mention we had gone to Iowa this past weekend for my niece's First Communion.  It was nice going and I wish I had more time with my family. I'll be taking the girls in June when my brother is in town as well. That will be nice.  The visit was nice but I felt withdrawn. I don't know what was going on. I partially blame my mood on the Hunger Games books. I was reading Catching Fire.  I don't know how to put this but reading the book (don't want to give too much away) and reading large chunks at a time had this heaviness to it, like a sense of doom. I realize I need to stay away from those type of books because it's not what I need now.  I did finish the series so that's done.

Chloe's fever hasn't returned, maybe it's just a fluke. She had that once this year and it's happened to Kylie too.  I thought Kylie was going to be sick today because last night she fell asleep in the car and I put her in bed when we got home and she did not want to get up for anything. She slept for just over 12 hours!  Guess she had some catching up to do. She rarely seems to take a nap at day care, too much going on I guess.  It's hard to wake her up too. I would like to say "Mom and Dad, I am very sorry about how I acted when you would wake me up."  That goes to my brother and sisters too.  What goes around comes around.  I see me in Kylie when she doesn't want to get up and is grumpy - that's me, totally me.

Sorry

I want to start with an apology about yesterday's note.  It shouldn't matter if no one post or gives money, I hardly ever do myself on Facebook or emails, but yesterday I felt it did. I've got a lot going on right now that I can't write about.  This means I should be writing in my journal but I haven't.  I was feeling like I was in 3rd grade again and no one wanted to play with me or be my friend (can you see the need to be accepted coming through?).  I was alone.  I was feeling that way yesterday.  I know I shouldn't feel that way because I know people love me and do care, I was only looking at Blog results and that shows a different story.  I just feel no one wants to keep hearing about me and my life.  Things have calmed down considerably since last year.  I know I need to continue as part of healing - the real healing would be to read all I've written on Caring Bridge and here.   I do want to give a big Thank you to those that did comment and let you know you don't have to do it again.  I see you face to face or get texts and emails from you so I know you care.  And no one feel obligated to give money.  I had made $500 my personal goal when I signed up for the March of Dimes walk, then our work came out with an incentive package and if you reach the top ($500) you get all the perks they are giving.  One is executive recognition and I thought "if we get that maybe more people will hear our story."  I don't really know what the recognition is - our name on a piece of paper that the whole company sees and a letter from the CEO telling us thanks would be my guess now.

I'm putting this past in the past and moving forwarded for a brighter future.  That's what I have to keep telling myself.

I want to put the focus back on the girls in my life.  I said I would tell the story of a devotional I picked up and I'm ready to share.  This devotional says "Faith" on the front.  There were others that said "Hope" and "Love" but of course Faith spoke to me.  I picked this up over a lunch hour along with a wooden painted bird I found that said "Faith" and brought it into work. The bird sits on my desk.  I was showing off the Bible, New Testament with Psalms and Proverbs to our department administrator.  The front page has a piece of scripture and then "Presented To...By...On the Occasion of...Data"  I'm not sure what to put in there but the admin said I should put to me by Faith and that's a great idea.  I felt the scripture was actually talking to me.  It's says "Faith is the confidence that what we hope for will actually happen; it gives us assurance about things we cannot see."  Hebrews 11:1. We have a plaque that says something similar but it didn't make sense until I read this version.  This is why we gave Faith her name.  I remember saying "I put my trust in the Lord and I'm praying his outcome is the outcome I want as well."  I thought it was too until that fateful morning of March 4 when we got the phone call from the doctor.

Should I stop?

Maybe it's just the day I'm having but I feel like I should just stop doing this blog. No one ever comments on it. Only family has given to our March of Dimes. So I guess no one cares.

I think I know what is weighing heavy on my heart about March of Dimes.
First, this is their mission statement:

The March of Dimes Mission
To improve the health of babies by preventing birth defects, premature birth and infant mortality. We carry out this mission through research, community services, education and advocacy to save babies' lives.

This is a good mission.  I don't know how much they do on educating about birth defects, when a defect is found.  As I said that might be on the doctor' shoulders. 
They also give grants and our doctor in Milwaukee has benefited from these grants for his TTTS research.

This isn't what's on my heart. What's on my heart is that we have a situation where we have one beautiful baby girl and one beautiful baby angel. It's puts us in a awful place. To have the happy and sad.  I feel like MOD only wants to hear the good stories and how things worked out well for all.  Happy ever after.  The stories posted at work are about twins born premature but are fine now, or the singleton births.  I can contact someone about sharing our story and I think Joel would like to (or is okay with it) but I don't know now. As I said, I believe we had more time with Faith because of the research.  But she did die. MOD does provides bereavement items and books. I think we got them at the hospital since DeVos has a MOD representative there. Who, by the way, was great.
I don't know, I feel so lost again.  I did have a good talk with my counselor yesterday. I just pray I can put into action her suggestions.

In other news:
Yesterday, Kylie said to me. "Mom, something happened at school." I was immediately alert and said "What?" She's looking at her thumb nail and says "I'm broken. Next time we go to church, I'm going to tell God I'm broken." Aw, that's sweet.  I said "Me too."  Her thumb nail was broken a bit and I realized right now I never did cut it. I think she forgot too.
She said something else that I wanted to make sure I write down. Now I forget. 

I do have to say she is calling Chloe "Buddha." I don't know where she got that from but it's "Buddha, Buddha, Buddha. Buddha Bear."

Chloe aka Buddha is such a cutie.  She gets this big grin on her face when she stands all by herself.  No more walking yet, but soon I'm sure.

 

March of Dimes

Just wanted to let people know that Joel and I are doing the March of Dimes walk in April.  We both have a goal of $500 each.  I'm providing the links for those of you who would like to give. Research funded by the March of Dimes helped both girls tremendously. I don't think Faith would have lived as long as she did without the steroid to develop her lungs and the surfactant that was used right after birth to help open her lungs. Chloe benefited as well from the same things.  I am disappointed that they are not doing any research with Twin to Twin Transfusion Syndrome. Plus March of Dimes takes a neutral stance on abortion which weighs heavy on my heart. I have more praying to do in respect of March of Dimes.  Maybe what needs to be done is I and others need to tell MOD that the research to find birth defects should be used to educate parents on what to expect from their child but that it's not always a straightforward case (child is born without any problems or not as severe as thought).  No matter what that child will love its parents and it just wants love in return. I know this really falls on the doctors' shoulders, the education, but MOD can encourage it.  I hope that makes sense.
I leave the decision to give up to you. 

http://www.marchforbabies.org/LisaEmerson and
 http://www.marchforbabies.org/joelemerson