A Few Photos Since Being Home

My all American cutie pies!

 This girl smiles all. the. time. and completely lights up my life. I just have to take her picture, she's so photogenic!

 These next three photos were during Cora's doctor appointments this week. She had four appointments and next week she has two more. See what I mean? Always smiling, even when being tortured at the doctor's office.

  I'm getting ready to potty train Kimball and had him try on his new underwear. He immediately stood on the coffee table and started dancing. I only wish Lance would've been home to see it. This kid cracks me up!

 SO CLOSE to rolling over! She always gets stuck on her arm.

 I warned Kimball not to put his head in there. He didn't listen.

For My Journal

*An email I sent to my immediate family on June 2, 21014*

To my Pettingill family (including the in laws, and I may not have their email address):

I wanted to share a few words with you and although this is through email, these are my personal, intimate feelings and I wanted to share them with my family. I'm not boasting or having a pity party, I just wanted to share some things that I've learned the past few months.That's merely it, sharing some things that I've learned.

We have been in Spokane for 9 months. Initially we came up here to take advantage of Lance's job offer and to further his career. What I now know, is that we came here to save Cora's life.  It's only through revelation that her life was spared. I was barely pregnant, about 8 weeks along and quite sick, when Lance was offered the Spokane job. He immediately turned it down because I was in no position to travel let alone move a family. As we prayed and discussed it, we knew Spokane was where we needed to be. There was no possible way at 8 weeks along that we or doctors could've known Cora was going to have physical problems. I know we are in Spokane because of and for her. We've been blessed with amazing doctors who are determined and committed to her care. She's in the best developmental school available, it takes months to get a child in there but because we were referred to them by so many doctors, we didn't have to wait, Cora was immediately admitted and began her therapies.

It seems the last 9 months I've been at the hospital more often than I am at home. Sometimes Cora will have 8 appointments in one week, those are physically, emotionally, and mentally draining. It's hard to discover your baby has problems and will continue to have problems for the rest of her life. Because of the speculations doctors had early on, I was preparing for her death. I had her funeral all planned out in my mind, from the songs to the flowers to her dressed in a white gown laying beautifully in a white and pink casket. But then things changed to she will live but that she'll have problems. I imagined her being the one bullied at school and made fun of because she was different. And then things changed again to, we just don't know what she will be like. So I've tried to change my mindset altogether. I realized as her mother, I was giving her limits before she even presented any. I decided she was going to be loved, treated, and raised as any other child would be, limits or not.

Long story short, the past 9 months that we've been in Spokane have been hard. Some days are better than others but it has been downright hard. H.A.R.D.

And so I want to express my appreciation to you and share my testimony. I bear testimony to you, that life is hard. It is. No one person's life is any easier than the next. We all have challenges that come to us in different forms. We all suffer. We all experience pain. And I know that it is meant to be that way. The scriptures teach us that without the bitter we wouldn't know the sweet, and that it is needful that there be opposition in all things. Because we know this, we know that life is meant to be hard. It is part of the plan of salvation or the plan of happiness. How can it be the plan of happiness when we experience loss, pain, betrayal, loneliness, etc? Because the Savior atoned and suffered for each of us, so that we wouldn't have to endure these things alone. It is because of our trials that life is good. Therefore, God's plan is perfect.

We don't have to know the "why" to our trials. The why is not important to our salvation, so we don't need to question it or pursue it.

One of my favorite talks is by Elder Wirthlin called "Sunday Will Come" and he talks about the last few days of the Savior's life, pointing out various things of the atonement and crucifixion. Then he explained that it was on Sunday that Christ was resurrected and redeemed the world. And of all things that Christ did endure and fulfilled his mission, it was on Sunday that he was delivered. And so I echo Elder Wirthlin's testimony, I also testify that we will all have our own "sundays" when we will be delivered from our hardships. We will have our own Sundays, we just have to endure life and endure it well. Enduring well is the hard part but that's when we can rely on our faith and repentance. That's when we need to turn to Him and ask for help. On my own journey with Cora, I don't know what to expect or what will come next and I'm constantly given peace when I remember the Psalm, "Be still and know that I am God." I just need to remember Christ and leave it in his hands which is what I've tried and strive to do.

I'm thankful for a good husband who holds the priesthood. As I've utilized the priesthood and called upon God for myself, I've been a witness to several miracles in the last few months. It strengthens my testimony of living prophets and of the restoration.

I bear testimony that this is God's plan, that his plan is perfectly perfect. I know that life is meant to be hard but that our own sunday will come just as it did for the Savior. I'm thankful for the covenants that I've made that make my two children mine forever. Whatever happens, I know they are mine as I stay true. I know God loves us and will never forget us. He is omniscient and ever forgiving!

I thank you all, my dear family; I thank you so much for your prayers, thoughts, words, faith, fasting, and love. I've made it through the last several months because of you and thank you so much. Please know the immense gratitude in my heart for each of you! I love you so much and ever thank you!

So, life is hard. BUT! Fresh courage take, we are all in this together. Love you all!

Rebekah

A Mistake, A Friendship, and Divine Guidance

I made a dumb mistake and ran out of formula while I was in TF. I called the medical supply company I have to order from and they were closed - idiot me, I didn't realize it was the fourth of July which also made for an extended weekend of closed business days with the postal service. So, I'm out of Cora's specific formula. I called around to different pharmacies and drugstores to see if they carried it. Nope. I finally found some at a local medical supply company in TF and they charge $70 PER CAN!! I didn't have a choice, I needed two cans. I went and stood in line for an eternity and finally as I was checking out, the lady in line next to me said, "Oh I have some of those cans, do you want them?" Psh! Do I?! I told her yes and she lived just down the road about a half mile so I followed her there. She gave me three cans of formula, saved me $210, and a new and life changing friendship began.

Long story short, Denise has a 10 month old baby who also has the exact same digestion issues that Cora had. She explained to me how she has to take him to Boise and SLC all the time for all of his specialist doctor visits, and isn't getting any help! She can't get a doctor to listen to her at all and with all the thousands of dollars she's spent without getting anywhere, the miles she's driven, and the poor baby who is suffering - I'm utterly speechless and thoroughly disgusted!

We exchanged contact information and I've since talked with her about the tests she needs to have done so that she can have the same stomach surgery as Cora, to finally help her baby. She also gave me some great tips which are so helpful. It really broke my heart as she spilled at how frustrated she was and about ready to give up. She was done, sick of fighting, sick of not getting any help and no doctors that listen. I felt so bad and I've never been so thankful to live in Spokane!!!

And because of this, I'm so eternally grateful to my Father in Heaven who guided us to where we are now. When Lance got the job offer in Spokane, I was only 8-9 weeks pregnant with Cora and very sick. There was no way that we nor the doctors would've known that there was anything wrong with Cora at all. It took us a little while to make our decision final and after speaking with our bishop, we decided that we needed to be in Spokane. Little did we know, we needed to be in Spokane for Cora. We've been blessed with such great medical care, have had a lot of rough bumps in the road but overall we are so blessed!

I'm only hope that by some small measure, I can help my new, dear friend by sharing my experience with her. I hope she finds someone to listen. I told her if she doesn't, then she can come stay with us in Spokane and use all of Cora's doctors until she's able to get the help that her baby needs. Perhaps it was a good thing that I idiotically ran out of formula.

Show Love To Your Children

"To you who are parents, I say, show love to your children. You know you love them, but make certain they know it as well. They are so precious. Let them know. Call upon our Heavenly Father for help as you care for their needs each day and as you deal with the challenges which inevitably come with parenthood. You need more than your own wisdom in rearing them."
-Thomas S. Monson

July In Photos

June 26 through July 22 I spent in Idaho with family! Lance drove us all to  Boise where we had the Watson reunion for the weekend and then he flew back to Spokane. He can't get four weeks off of work, after all. When he left I took the kids and drove down to Twin Falls to see the rest of the Cox's and Pettingill's. I wasn't on the phone or computer much which was nice to be unplugged, at times the kids and I would FaceTime Lance so he could see them. We had a nice time despite the heat.

 Looks like Charity took a selfie with Cora

 

 Mom was so generous to get the fabric and help Christine and I make these quilts. It only took us two days, it was one of my favorite times!

 My cubbies!

 I was glad to be able to attend Trish's mom's funeral. It was nicely done and I'm so thankful for the gospel in my life. Charity even played the piano and I told her if she did I'd give her $10. So instead of handing over the money I decided to take her and Devin out for the day. We did some shopping for their school clothes, had lunch at Chic Fil A, and shared a milkshake. It was really a lot of fun!

 And this is my love note when I got home, Lance was very anxious to see us! I drove by myself with the kids the entire way home. It was long and hard at times but we made it home. There's certainly no place like home!

Don't Become Bitter

I have met some incredible people through all of this medical stuff with Cora. One instance I wanted to remember was last month, while I was waiting to have the first NJ tube placed in Cora. We were in the hall waiting at the labs to get a wound culture before going back to radiology and I could see another young mother was in the lab with her baby. I'm guessing she was about my age and had her mother with her. Every now and then her mother would stop and chat with me at the door, she mentioned her grand baby was 6 months old and had come a long way since being in the NICU. Eventually they sat in the waiting hall with me and I asked them a few questions before Cora had to go in. This is her story and what I learned about myself.

Her son was born very early and weighed only 2 pounds. They're from the Seattle area and he was transferred to Sacred Heart Medical Center (Cora's same hospital) because "it's the best." They ended up staying in the Ronald McDonald house across from the hospital because of his lengthy stay in the NICU and couldn't afford the money or time from going back and forth from Seattle to Spokane. I asked if he had any problems he was still working on and she said no, he's absolutely perfect with no long term physical effects and is a healthy baby, just slightly under weight and on the small side.

I said, I have two things to say to you. I started getting choked up and teary eyed and I said, "Number one, you are darn lucky to have your mom here to support you. I'm new to Spokane and am nine hours away from any family. I have made some good friends but there's nothing quite like having your own mom by your side during the most difficult times in the life. Cherish your mom. And number two, you should certainly be proud of yourself. You have come a long way and have nurtured and raised a healthy boy. With all the ups and downs and everything you've had to go through, you are a strong woman. You are a wonderful mother, I can see it just by the way you look at your baby. Be proud of yourself."

And just as we were getting into a good conversation Cora's name was called and I had to go. But I wanted to remember this moment. There's something about having an ally, having and knowing someone who's been through the exact same things as you and finding so much comfort in that. I wanted to encourage my new, nameless friend.

Because that was the same horrid, hellish week that Cora's NJ tube was placed, a few ER visits, Kimball getting bit by a dog, unexpected doctor visits, and Lance being out of town for it all; when Jan (speech therapist) came that week, I sort of lost all composure and vented of what a frustrating, lonely, and hard week it was. I mentioned to her this same young mother and the conversation we had in the waiting hall. Jan looked at me and she said, "Becky, you need to be telling yourself the same exact thing. You should be just as proud and are certainly just as strong of a woman and mother as any other. You have amazing maternal instincts and should be proud of yourself, too." This made me cry because even though I had been going through similar things as this other mother, I never thought of myself as strong or determined or committed, or anything else. Really, I thought of myself as a wimp for crying so much and having to lean on so many other people to help me with so many things. I felt weak for having to ask for so much help. Why couldn't I just do it all myself? Weakling.

But Jan is right. I'm not trying to toot my own horn, but she made a good point. If I compare the mother and woman I was before Cora was born, to the mother and woman I am now, I am stronger, have more faith, am determined and commitment to my children especially Cora's time consuming care. I am better because of this trying time. I am stronger because of my deeper testimony. I am softer because of my intense love for my children. I am more compassionate and very aware of others around me - we are all fighting our own battles in our own way. We should be kind! 

I've never really understood the phrase that we should be thankful in and not thankful for. I now know what that means. Today in RS we discussed this during the lesson and I learned a few things. In D&C the saints had seen the affects of unrestrained mobs and were being driven from Missouri. During this time Joseph Smith recorded: “July, which once dawned upon the virtue and independence of the United States, now dawned upon the savage barbarity and mobocracy of Missouri.” And in 98:1 "Verily I say unto you my friends, fear not, let your hearts be comforted; yea, rejoice evermore, and in everything give thanks."

How can the saints be comforted and rejoice and give thanks during such a tumultuous time? The Savior said, in everything give thanks. Even then? When mobs were trying to drive them from their homes and belongings and their faith? Even when mobs were trying to kill them? Yes. Even then. And in those times, it is then that we are thankful in and not thankful for.

One of the comments made today was a sister who when she was young and in a very difficult time in her life, someone from the LDS social services said, don't become bitter. She said, all those years (I'm assuming 30 years ago) that was one thing that stuck with her and one thing that she decided not to choose. She didn't want bitterness a part of her life.

Anyway, I'm thankful for all the people and lessons I've learned during the past 1.5 years. I wouldn't trade any of it. Ok, maybe the pregnancy sickness and recovery sickness. But really, I'm so so grateful!!!

Two Messy Faces and Happy Tummies!

Play Dates

To say that I have amazing friends in Spokane is the understatement of the century. They've been incredibly helpful with Kimball through all of this medical chaos that is mine and Cora's life. When I am able I try to return the favor and only wish I could do it more often. This week I had a few of those opportunities and here are some of Kimball's friends!

Kimball and Lindy Borders

 Cute little Kenzie Roe

Kimball showing me what he built with the legos and Audrey behind him. I'm not sure where her brother was, probably in Kimball's room playing.

Nothing But The Outdoors

I kept telling Kimball over and over that he couldn't go outside. But while I was downstairs grabbing something from the storage room, he waltzed on outside anyway. In 50 degree, cold, very rainy weather. No shoes, no jacket. And he was in heaven!

Cora Update

Isn't she a doll?!

 Oh my goodness, two teefers! I'm not ready for that yet, I'm going to miss her gummy smile.

I'm still in shock at how much the surgery has helped Cora. It's simply amazing and I become more amazed every time Ginette comes for her physical therapy session. She's a completely different baby, through and through. This week, Jordan wanted to tweak her diet so that she takes a a 80 ml bottle every 3 hours and put 25 ml through the pump. After two days, she should take 90 ml bottle every 3 hours and put 15 ml through the pump. She'd have her regular 12 hours drip at night with the same recipe/concentration and a different recipe/concentration for oral feeds. After four days, she should be at 105 ml every bottle and off the pump during the day.

I didn't even last one day with this diet. I forgot that the pump tubing takes 15 ml and those few 25 and 15 ml I was supposed to give her after a bottle, the pump would alarm at me, blah, blah. It was too much of a hassle. I also found that she wasn't hungry enough for a bottle after 3 hours. So I made up my own diet for her. I just decided to offer her the 105 ml orally every 4 hours, 4 times a day. That's it. No pump during the day but the same 12 hour drip at night. And she did beautifully! Sometimes she only at 2 oz or at the most 3.5 oz (105ml) but she did great. I'm glad I made the decision to let Cora tell me what she wanted and when. It was perfect and the Jordan (dietitian) said that's what the ultimate goal is anyway so it was fine skipping that extra step she wanted me to do since Cora was obviously ready. We are off the pump during the day!!

I have noticed that her congestion has slowly come back and her cough has been slightly wet again. Not good, I'm thankful Jan is there to help me watch for signs. In other words, she's still aspirating her milk even on the half nectar thick consistency. Jan ordered another swallow study which will be tomorrow-I'm very anxious for the results. In the mean time, we switched thickeners to the gel called Simply Thick and increased the thickness to nectar consistency. It's been a week now since she's been on this and I can see a slight improvement. I know it'll take a while for it to completely clear up, but at least she's not getting any worse and I think we're headed in the right direction with it.

She's a champ with the oat cereal. I'm only allowed to give her 1 teaspoon and she always wants more but I've noticed that it has really increased her appetite. When I give her a bottle after the oat cereal she'll take 4-5 oz! That's big for her little tummy. She's getting stronger and stronger everyday, still no major milestones yet. She's still not rolling over or sitting up but I know she's not too far off. Oh, and yesterday she turned 7 months! Overall she's still doing wonderfully and I'm so pleased with everything!

My Handsome Date

Cora's Progression

It's hard to believe that Cora had her surgery three weeks ago. The last two months are all a blur, so much happened on little sleep and so much medical chaos that I became numb and lost track of time. It's all a very hazy fog.

I need to write about the changes I've seen in Cora, they are significant! She's like a whole new baby! She didn't go home with any pain meds, just Tylenol as needed. The day she got home she was rolling from side to side and one time she even rolled over from her back to stomach, she's reaching for her toes, she can grip and play with toys, she's constantly pulling objects to her mouth, she lays on her side, she'll lift her head up like she's doing crunches, she splashes in the tub, etc. There are more things but I'll keep it at those few. If someone is holding or playing with her, she'll actually act interested in what you're doing and study your face. Before, she couldn't play/reach/grab toys at all. She would just lay on the floor and not move much. Period. She's always had a happy disposition but now she's definitely a happy baby!

Cora was in so much discomfort and pain that she couldn't focus or think outside of her own body. Her  reflux and gastric emptying was so severe it was really delaying her development and her just as a person. She couldn't do anything because of it. BUT, now she's a whole new baby and I'm so glad! I'm so happy for her, that she's comfortable and can actually play with toys and want to reach her toes or roll around without so much pain. I've been so awestruck and she's now one determined little girl.

It makes me wonder: was it solely her gastric issues that delayed her? Her MRI showed the HCC and the irregularity of the lining of the ventricle, but what if she's one of the few that it doesn't affect? Does this mean she has to ability to catch up to others her age? Does this mean she will be "normal"? Of course she has the heart defects too but those don't affect her neurologically as far as I know. I don't know the answer to this and I don't think the doctors do either. It's still a waiting game to see how she will develop on her own.

She's still in speech and physical therapy which has been going well, her physical therapist is beyond shocked at what a difference the surgery has made for her. During her session, she's relaxed and calm and not constantly fighting against the reflux, it's been so amazing to watch.

As far as speech therapy goes, I'm still meeting with Jan who's great and also Jordan (nutritionist). I'll meet with Jordan once a week until she's back on oral feeds 100%. Right now we are doing bolus feeds which change every 3-4 days. The purpose of this is to decrease the use of the pump, increase oral feeds, and increase gastric resting. She's up to four, 2 oz feedings every day and is tolerating them well. She's doing so good, I'm so happy for her! As a mom, I'm just trusting my instinct and listening to what her body is telling me. I totally forgot I'm supposed to thicken her bottles! Idiot me! So I watched her the next day or so and she was showing a few subtle signs of aspiration. Jan ordered another swallow study which is yet to be scheduled, but I'm hoping I didn't cause irreparable damage or cause her to regress.

Last week she got her first taste of solids! Jan started her on oat cereal (she's allergic to rice cereal) and she did great. We aren't using it for nutritional value, just to help her oral skills and development.

Here she is able to sit in the bumbo for the first time at 6 months 2 weeks! She's still wobbly but she gets stronger and stronger everyday. She's making leaps and bounds of progress and I'm so happy for her!

 

She Lights Up My Life!

Random Pictures

Chillaxing With Daddy

Lately

I have so much blogging to catch up on! I really don't like getting behind, it makes me super anxious. But, the month of May really kicked my fanny and I'm still trying to catch up on all the household things as well as sleep. I don't think I really know what sleep is anymore. This past week was awful in that department because Kimball is cutting the two year molars - why didn't anyone tell me what a nightmare those buggers are?! Holy cow!! Sunday night he was up 7 times and the remaining nights of the week have been 3-4 times each night, of course that's on top of the usual scheduled times I have to get up with Cora to do her feeds. Needless to say, I'm beat!

That's about all to say for now. I'm tired and behind in all departments: cleaning, laundry, cooking (as in I haven't done much), paying bills and reconciling, my calling (didn't get done at all last month), etc. My to-do list is growing by the second and I've only got 2.5 weeks to get it finished before we leave to go home for a while. I'm SO excited to visit home! A much needed break and I'm ready for it.