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!!!
Sunday, June 22, 2014
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!
Monday, June 9, 2014
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!
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.
Sunday, June 8, 2014
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.
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.
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