Sunday, March 23, 2014

Still Waiting

We finally got a letter from the neurology department saying that Cora's MRI showed further abnormalities of her brain. That's about all we know. We'll meet with the neurologist next week to figure out what it means for Cora. That's a really long time to wait!

Cora also had an evaluation at the Guild School, she met with speech and physical therapists for about two hours and then asked me a ton of questions. They concluded that at her age (4 months) she is developmentally at 1 month of age. She will begin seeing occupational, speech, and physical therapists next week. She is starting to do some things that she wasn't before like smiling and focusing her eyes better. But she's still pretty behind on the majority of things.

I have some other personal thoughts about it which I will expound on later but for now, she's crying and wants to eat. Oh! Speaking of eating, she has made a little bit of progress, yay! I think changing the bottle has made the biggest difference but any improvement is improvement so I'm beyond excited about that!!!

This Is How We Do Sunday Nights

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Girls Night!

Thursday night I had a last minute girls night with Julie and Liz. We did a little shopping for Liz since she's been losing weight but we didn't know the mall closed so early (9pm is too early to close for mom's wanting to get out of the house) so we also went to Burlington. All three of us scored some shoes and these are my beauties! Rocketdogs for $12, can't beat that. We then drove around to several places wanting froyo but everything was closed so we settled on Shari's for pie. It was an awesome night!


Sunday, March 16, 2014

Made Me Laugh


Ophthalmologist

Cora saw the Ophthalmologist this week, Dr. Whitehead. In all, Cora's eyes are perfectly normal. Her prescription is a little farsighted as all babies are and the doctor had no concerns whatsoever. The left eye that tends to wander is getting better with time. He said it isn't an issue with the eyes but an issue with the brain sending/receiving the signal that it's time to focus. Something like that. He thinks she's just slightly delayed but is reassured since it is getting better. YAY for a positive doctor appointment!

MRI

Cora's MRI got moved from Wednesday to Friday. During the pre-surgical screening I had them make sure they double checked with her cardiologist about the anesthesia procedures because it could have differing effects on her heart defects. I'm glad I checked, they wanted to change procedures which they had to reschedule for Friday.

Of course I was on pins and needles all week about this MRI and there was no calming me down. I was mostly worried about how the anesthesia would affect her. We were at the hospital for 6 hours! Unbelievable, 6 hours?! We checked into the pediatric surgery wing, several people asked a lot of different health history questions, and we were sent to a room to wait some more. And wait and wait. During this time, Cora had to fast at least 6 hours prior to checking in and she was currently at hour 13 with no food so needless to say, she was hungry! But she's a champ and hardly cried at all, I was very surprised at that. In this room while we waited and in between sleep and awake times, Cora became very smiley and happy. I caught a series of these pictures.



The nurses put Cora on a portable little crib and wheeled her down. I kissed and said good bye to her at the double doors and watched her roll away from view. I felt helpless and cried and really wanted to be with her but they wouldn't let me. They then put her IV in, gave her anesthesia, and intubated her. She had all kinds of tubes and wires, the cardiologist wanted to make sure they had complete control of her entire system while she was asleep. They started the scan at 1:16 pm and in the meantime I found the cafeteria. I was famished!

After lunch I went back up to the pediatric surgery waiting room and waited for them to call me back. I paced the floor. I saw in a private room to the left was about 15 people wearing matching red t shirts that had an eagle and some scenery behind it with the words "Eden's Eagles" on it. They were all chatting away, I have no idea how long they had been waiting. I was finally called back to the recovery room to be with Cora and this is how I found her.
She was very calm and had a big red scratch by her right eye. I immediately starting crying, so relieved that she pulled through the anesthesia and did wonderfully well. I was just so overcome with gratitude! I greeted her with lots of kisses and hugs and smiles and nurse Gavin gave me an update on how she did.

After a while I was able to giver her some glucose water and then formula which she tolerated wonderfully, meaning we could go home. As I was feeding her, more patients were transported from operating rooms into the same large recovery room we were in. We heard wheels squeaking as they wheeled in Cora's neighbor, about five feet from her. Gavin starting asking her all sorts of questions and explaining where she was and how she doing. This little patient was moaning and looked so sad. It broke my heart. She was probably seven years old and I could see little bits of hair growing in so I assumed she had some type of cancer. A few minutes later a young couple came in to see her and I immediately noted the red "Eden's Eagles" t-shirts they were wearing. This little girl was Eden. I could tell she had been through more than any little girl should ever have to. I could tell she was a fighter and she had her own cheering section out in the waiting room. She's obviously a very loved little girl and I pray with all my heart that whatever surgery she just endured was successful and that she will be home soon.

I decided right then and there that I could never work in pediatrics. The recovery room was just lined with beds and beds of children and babies who were moaning in pain and crying of fear. It was the saddest thing I'd ever seen, it ripped my heart out. Of course I was curious as to each of their stories but I just prayed that they, along with my Cora, will be healthy and live a normal life.

While Cora was being discharged, nurse Jackie was chatting with me about her baby's digestion issues. She said a pediatric GI doctor in Seattle recommends Gerber Soothe formula for all his patients, she swears it's the first thing that has helped her baby. She also recommended I try switching bottles to one designed to help air flow and prevent bubbles.

I was grateful to finally be home after 6 hours in the hospital, and grateful to be surrounded by my own little loving family. I wanted nothing more than to sleep but I went to the store to buy new bottles and formula in hopes of giving Cora some kind of abdominal relief. I haven't heard when we'll be getting the MRI results back, I'm hoping sometime this week.

Old Roots

An email from Papa Johnny:

Hello All, this is house built by Annie Loveless Kempton's (my grandmother) grandfather. In today's Times News.

In The Eyes Of Defeat

Tuesday through Friday were rough days this week. It started at the playgroup on Tuesday when Cora wouldn't quit spitting up. Funny how it's the small things that can trigger a domino affect and make such a big reaction. I left the playgroup that day crying over massive amounts of spit up which in turn made me cry about Cora's other issues that I still can't sort out.

She still spits up A LOT and cries after she eats like she's in pain. Usually the crying is in the evening and turns to screaming. Cousin Susie wondered if maybe she's allergic to the formula like her kids were so she suggested I try Nutramegin. Did that, didn't help.

Her rash is certainly looking a lot better, she's been off the reflux meds for nine days now. But now she has a new rash.......sigh.......I don't know what to do. She's obviously hurting when she eats but I don't know what to do.

She's still colic at night, I'm sure my break down this week was in large part due to sleep deprivation from screaming nights.

Wednesday I just felt utterly defeated. It doesn't matter what I try to do for her, nothing works. Nothing is helping, nothing is improving. It's like taking one step forward and two back - adding more problems to the mix. That morning I cried and called Lance asking if he had any suggestions but we were both clueless. I called mom but she didn't answer. So I was in survivor mode until nap time. The tears kept coming, Mom eventually called me back later in the evening and I told her how I was feeling. I cried some more. I hate seeing my baby in so much pain. I hate seeing her unhappy and screaming like that all night long. Oh boy does she scream all night long. I felt a little better after talking to mom and I went to bed while Lance took Cora for a bit. But I couldn't fall asleep, I fought the tears until I gave up in defeat and I sobbed. And sobbed and sobbed. Around midnight I asked Lance to give me a blessing.

I just don't know what to do. I've tried every suggestion that doctors and other moms have given me. I've tried it all and nothing is helping. So this week I've felt completely defeated. But I keep thinking to myself, tomorrow is a new day and maybe it will get better. Even though nothing has improved yet, I know that I'm not in this alone. Motherhood is a partnership with God and I know that he loves and cares for Cora just as I do. I know he won't leave me alone because he too created her. And as her Creator I know that He knows how to fix the problems she has. Maybe the problems can't be fixed with medicine or surgery, I just don't know. But I do know without a doubt that He can heal her. The scripture in Psalms keeps coming to mind, "Be still and know that I am God."

Say "Fish"

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Girls Night

I have met some of the best people in Spokane. I'd say we have a girls night almost weekly, it's nice! We have a playgroup at the mall every Tuesday and this last particular Tuesday was very difficult for me (I'll blog about that later). I left earlier than usual so I could put the kids down for a nap. As soon as I left, Julie texted me asking if I was ok and if I needed anything. My reply was, "Nothing a good nap and some chocolate can't fix." Which was true. About 30 minutes later Julie and Liz came by with some chocolate and a hug for me. I'm so blessed!

From left to right: Kate, me, Liz, Jean, Cristy, baby Britney, Chris, Whitney, Julie, baby Cora

St. Patrick's Day Parade

We decided to go to the St. Patrick's Day Parade on Saturday since Lance had the weekend off. On our walk downtown we passed the Spokane Falls which I hadn't seen before.
 I didn't realize it until this picture but Lance looks like a homeless man. Must be the beanie.
 This was about as eventful as it got. Kimball played with rocks and dirt while we shivered to death.

Sunday, March 9, 2014

Never A Dull Moment






My Lovies

He wanted to hold her but only for about two seconds. She didn't appreciate that short attention span.


Monday, March 3, 2014

Journaling

I wish I had more time to blog. Certain days I have overwhelming thoughts and feelings that I'd like to write down but the kids' needs take up my time. Then I usually think one day I will get there and have a few minutes to write. So, this is just for myself.

I have various feelings about Cora's conditions. Lately, she still has the rash which continues to get worse and we are on week two of it. It's now spread to her face and her head. To add insult to injury she's also come down with a cold. Both kids have colds, I've got a runny nose, and Lance is home from work with an upset stomach. It seems we cannot get rid of the illnesses that have plagued us since January.

With Cora's rash and being sick I feel defeated sometimes. It's just one thing after the other! It breaks my heart when I hear her coughing all night and look at her face, she's so miserable and the rash looks awful. I feel like I'm failing her. It's my job to keep her healthy, happy, and protected and I feel like I keep failing her. If she were to die tomorrow, it'd be the saddest 3 month life ever! And I feel bad about that. I know there isn't much I can do and what I can do I'm doing my best. But I still feel like she deserves better. Whether it's a better mom or a better, healthier body I don't know.

Mom and Dad have told me several things last month that I want to remember. Mom said that I was the vessel who gave Cora her body and that's all she needs. True. She needs a body and whatever Heavenly Father has in store for her now is up to Him. But I gave her the body. I wish I would have had that perspective when I was pregnant, I would hope that I would've viewed my very difficult pregnancies a little differently.
  Alma 40:23 The asoul shall be brestored to the cbody, and the body to the soul; yea, and every limb and joint shall be restored to its body; yea, even a dhair of the head shall not be lost; but all things shall be restored to their proper and eperfect frame.
Even though Cora's body isn't perfect, it will be. It's funny to me how I'm taught this doctrine being raised in the church and being taught it again by the spirit through my own studies over the years, but yet I never really had to apply it to myself until now. Dad said that my body is perfect for me and Cora's body is just perfect for Cora. It's part of what makes Cora, Cora.
Be we reminded that a perfect body is not required to achieve one’s divine destiny. In fact, some of the sweetest spirits are housed in frail or imperfect bodies. Great spiritual strength is often developed by people with physical challenges, precisely because they are so challenged. Anyone who studies the workings of the human body has surely “seen God moving in his majesty and power.” Because the body is governed by divine law, any healing comes by obedience to the law upon which that blessing is predicated.
- Elder Russel M. Nelson
I have no idea what Cora's life will be like. I don't know if she'll pass away at a young age, be mentally challenged and slow, be physically challenged and slow, or if she will be perfectly "normal" and live a long life. I shudder to think of my baby passing away but the thought has crossed my mind. I remember the very first Sacrament Meeting we attended here in Spokane, it was our third day here. A high councilman was speaking and told of his own family's physical challenges with organ transplants, diseases, and death. This had happened to his children. Through a few years of mourning, revelation, and healing, he had to ask himself one question. He said in priesthood blessings when the church was restored, many church members were asked if they had faith to be healed. He said in my experience I had to ask myself if I had enough faith for my children to not be healed. This high councilman's remarks have remained with me these past few months and ultimately my answer to that question is a resounding no. If I lost Cora I most certainly would not know how to continue on without her, the thought absolutely frightens me.

This past week at playgroup I met a mom and her two children who've recently moved back into our ward. She has a new baby that's a month younger than Cora. I made a remark of how well her baby has developed which inadvertently brought up questions about Cora's health. I didn't go into details I just politely said she has some medical hurdles to get over, and left it at that (I had just gotten done taking Cora to the doctor that morning). My friend Julie said, "Yeah, Becky's a rock! She never cries, she's so strong and is holding up pretty well." I smiled and said yes, of course we are doing ok. Which is the truth, we are all doing pretty darn well. But the one thing Julie was wrong about? I do cry. I've cried everyday since that neurology appointment. Sometimes just a tear or two when I'm in public, like at the RS sewing class when we made pillowcases or that morning at the doctor's office. But when I'm at home with the kids and can sit there reflecting on how much I purely love my children, I bawl. 

Some days are hard and discouraging. Some days are downright overwhelmingly difficult, usually doctor appointment days when we receive news and have to call family to explain what's going on. But generally speaking, I am optimistic. I'm keeping the faith that everything will be ok in the end. Dad said, "One thing I've learned is that if it's not ok, then it's not the end." I'm still not sure what he meant by it.

But I do know that Heavenly Father is mindful of his children. I know that he's helping me raise these kids. I know his Son has already suffered and I can take comfort and peace in that assurance. I know I am not alone although some days do feel like it. I know there are probably harder days ahead but I take peace in my knowledge of the gospel of Jesus Christ. I also draw strength from this quote:
On the other side of that veil there are angels riding with their chariots of fire to be a protection for your child.
-Elder Jeffery R. Holland
And so I continue on with the next task which at the moment is eight daunting loads of laundry. And I continue on with hope, because what else is there?
2 Nephi 31: 20 Wherefore, ye must press forward with a asteadfastness in Christ, having a perfect brightness of bhope, and a clove of God and of all men. Wherefore, if ye shall press forward, feasting upon the word of Christ, and dendure to the end, behold, thus saith the Father: Ye shall have eeternal life