Love reflected in a snapshot.

Sometimes I have to pull myself away when I go in to kiss Kelsie before I go to bed. I just kiss her over and over and just can't stop snuggling. Oh, the love for your child! There are simply no words. I go to bed every night with a heart overflowing with the deepest love imaginable because the last thing I do before I go to bed is go stare at that sweet face, kiss her little cheek, and thank God that she is in my life!

On a side note, I realize that I take a lot of pictures of Kelsie, and I post a lot of pictures of her. Its just that these moments with her pass so quickly and I just don't want to ever forget them. People may say that you will never forget but I know that time has a way of washing away certain memories. I think I struggle with this even more now since my accident. I know how difficult it is to remember specifics of things that happened last month even, (what she was doing, what she looked like, how big she was, the things she was saying etc), so for me, these pictures help to capture these moments that I find so precious but never want to forget. By taking a picture and putting down my thoughts, I am sure to be reminded of these wonderful times with her no matter how much times fades away.

Ah-pa and Meh-ma come to play!

My parents have kept Kelsie the past 2 Saturdays while Nathan and I have gone out. Last weekend we went out to dinner and a movie and I think this was actually the first time we had done this since Kelsie has been born. Sad, I know! Kelsie absolutely LOVES for grandma and grandpa to come over! She gets constant attention and adoration! My dad is like a big kid and Kelsie just eats it up! And my mom is crazy over calling her "precious" all the time and can't stop doting on her and telling her how beautiful she is. As the first grandchild, its no wonder she is a little spoiled by them! But I just think its wonderful.

After we got home last weekend, my mom told me I had to go up and look at Kelsie who was asleep in her bed at the time. When I got up there, this is what I found! LOL. Yes, I really laughed out loud! This is Kelsie's castle tent and is her absolute favorite thing to play in these days. It usually stays downstairs and its often a bit of a battle to get her to leave her tent at night to go to bed. So as she started to resist going to bed this night, my dad asked if she wanted to take the tent to her room and of course, she agreed. So up and into her bed it went. They put her to sleep inside the tent and she went right to sleep they said. I thought it was a fantastic idea and so sweet! I thought she would demand more of this in the future but so far, she hasn't. (We took her out of it after we got home so she could still roll around - plus its pretty stuffy inside there).

They came back up this past weekend because Nathan and I had tickets to the Carolina State game! It was not only my 2nd date in 1 week, but also the 2nd Carolina game in 1 week! Both are pretty rare for me so I definitely enjoyed them! So this time, my parents came in with this adorable cupcake and a Reeses for Kelsie. Because she has CF, she can have all the junk food she wants. I still try to be reasonable about it because we don't want her filling up on stuff like this and not eat the more nutrient and protein packed food, but I certainly don't mind her having some treats like this from time to time.

They also got to experience giving her breathing treatment for the first time. I gave them instructions on what to do before I left. Then dad texted me to say that he asked Kelsie if they were doing it right and she said "yeah". Then he sent me this picture saying that she decided to just hold it and do it herself. What a big, brave girl!

 

Dad texted me this picture later in the night when I asked if she was in bed. He said "kinda". Then sent me a picture and said we all are. They are all pretty crazy about each other! :)

So as for the game...Nathan and I went to rival universities...he at NC State, me at UNC-Chapel Hill. So when we play each other, its always a little contentious in terms of our rivalry. We are both die hard supporters of our teams but are growing to be more respectful towards the opposition. I think. :) Sometimes at least. On this particular night, I didn't have high expectations for the Heels and he didn't know what to expect from his inconsistent Pack either, but we were just excited to be there. And to be out of the house, without our child, on a date! We had seats in his company's box suite at the PNC arena and its was definitely first class. All the food and drinks you want, good seats, private bathroom, room to socialize...it was great! Unfortunately, I was quite dissatisfied with how my Tarheels played making for a less enjoyable experience for me. But still, it was fun!

Lovely Monday

I've had a great morning with my little Kelsie today! We played this morning then went to library to pick out some new books. Kelsie always enjoys looking through the endless supply of books and just walking around the children's area. She tripped and fell as we were about to leave and busted her lip. It was all bloody and now its swollen but it didn't seem to bother her too bad. She screamed at first and I took her to the bathroom and held a wet paper towel to it which calmed her down.  After the library, we went to eat lunch and she kept saying "lip. hurts. tiss it". So I would kiss it making it alllll better! I feel bad that she got hurt but I am enjoying these frequent requests for kisses! :)

She LOVES to get in our bed and watch TV.
Which is always good when I need to get ready to go out somewhere!

Mmm chocolate ice cream.
She was more interested in feeding me than herself though!

 

My Sweet arts class

It was another fun morning at our Sweetarts music and art class! Kelsie is getting more comfortable but still a little shy and reserved. She walks up to the teacher with the other kids but then comes back to me. And she is starting to try to hit the drum or clap her hands during music time but still not quite there yet.

She likes the craft portion the best.

Although since we have been home, she keeps talking about the singing/dancing part. During the singing, they will say "clap, clap, knees...clap, clap, knees...clap, clap, NOSE!" at which point you are supposed to change it up and touch your nose. So kelsie keeps saying, nose...eyes...face... head...toes and touching each respective part as if we were doing the song.

I think this class is a great way for Kelsie to socialize with other kids and get to be involved in great age and developmentally appropriate music/art activities. And I get to participate along with her so its a great time for us to spend together doing something fun outside of home.

 

 

 

This was taken at last week's class by a photographer for the chapelboro website

My duty, my desire

And, she's down for a nap! While I love my days at home with Kelsie, I have to admit, I do look forward to nap time! It is often the only time I sit down all day, at least the only time I sit down when I'm not constantly giving all my attention to her - doing her PT/breathing treatments, trying to get her to eat, engaging her in play or art activities (aka keeping her from eating the crayons/paint/etc).

Being a mom is the greatest and most amazing job in the world. It is a joy beyond any other to conceive a child, to carry her in your womb and deliver her into this world, to see that precious and perfect little person for the first time, to nurture her and celebrate every new movement, to watch her grow, reach new milestones, to see her personality evolve, to help her learn, to see her change every day, to see the joy in her heart when she experiences something new and exciting, and to relish in the sound of her laughter, her smiling face, her hugs and kisses, and her unconditional love for you.

But being a mother is also extremely challenging and overwhelming at times. It means being in constant movement, alert to their every need - the feedings, the dirty diapers, the endless calls for attention, cleaning up after messes, the toys everywhere, the laundry, the food on the floor that you worked tirelessly to prepare, the need to provide healthy, well balanced meals, to make sure they eat enough and grow well, to provide constant stimulation to help them develop, to take them places to experience new things, to listen to their cries and protests, to witness their tantrums and outright disobedience, to try to discipline the right way, to try to always hold it together, to show them you love them more than anything, to not yell or show your frustrations, to never have time for yourself, to always worry about their well-being, to feel the unspoken critiques from family/friends about the way you are raising your child, to fear you aren't doing enough...the list goes on and on. 

For me, I have also been dealt with the responsibility of caring for a child with CF. This disease truly requires management all day, every day. With every snack, every feeding, every juice or milk cup, there are meds to be given or supplements to be added. When we go out, I have to make sure I have her meds, her applesauce, her Miralax in her juice, extra diapers/clothes in case she has a blowout, hand sanitizers, antibacterial wipes, Pediasure in her milk, enough snacks, and extra food to have as choices in case she is being picky because the pressure of her getting enough fat/calories is so high. I have to be in constant alert to changes in her appetite and bowel movements, new symptoms of respiratory illness and pay attention to her fat, caloric, salt and fluid intake. I have to make sure we get her PT in every day and get her breathing treatments ready every morning. Even when there is a lot planned for the day, I have to try to figure out how to get those 2 30 minute PT/breathing treatment sessions in. And after I clean up dinner dishes every night, I have to set everything up and thoroughly wash/sanitize all of her nebulizer accessories.  And underneath all of the day to day tasks, there is the unsettling reality that this is constant and will only become more and more challenging as the years go on. You know that your time with the greatest love you have ever felt, the light of your life, your precious child, is likely one day going to be cut short because of this illness. So you just feel that weight on your heart...daily. No matter what people say or how much hope or faith you have, you just can't shake the underlying fear of when that day might come. You don't let it consume you. But while you continue to live each day of your life, you know its always there in the back of your mind...

My job also adds another dimension to my life as a mother. In my opinion, being a mother is a full time job in and of itself. Every mother is faced with the constant demands of raising a child and maintaining a home, whether she works full time, stays at home with her kids, or works part time. I am currently working two days a week at one job and 1 night a week at another job. This has been a pretty good balance for me. It is such a blessing to have a job and I love what I do. Nursing is very close to my heart and it is definitely a rewarding career to work as a nurse practitioner and take care of children. I often see my job as a bit of a break but it can be demanding as well. I always have work to bring home but with all the other demands of motherhood, it is often hard to find the time for it. When you add to it the responsibilities of trying to be a good wife, housekeeper, and cook, it can be a lot for a woman to bear sometimes.

But regardless of how demanding it is to be a mom, raise a toddler, care for a child with a chronic illness, and work... I wouldn't trade this life for anything...nothing I had before, and nothing I could have without it. Being a mother is a gift, a responsibility, and a choice!  I know God designed me for this very role. In this season of my life, I feel my greatest responsibility is to be the best mother I can be - to train my child, to teach her, to love her, to nurture her, to give her the best care possible, to guide her and lead her, to enjoy her and relish in her every delight, to show her the beauty of the world and all it has to offer and to help her discover and explore who God has created her to be. It is both my duty and my desire. I wouldn't have it any other way. I love that little girl with every ounce of my being and I will do everything I can to make sure she feels that love every single day.

And for the pressures of life, I will give them to the Lord. I will rest in his abundant love and grace and find peace in his faithfulness. Instead of complaining of the tasks in front of me, I will count them as blessings. Blessed that I have this precious child to care for in the first place, that I have a home to clean, and food to cook. I will give thanks for my supportive husband who works hard to provide for our family and for the job that allows me to use my knowledge and my talents while serving the community. I will be thankful for my family who is always graciously willing to help when we need them. I will think less about how I measure up according to others' perceptions of me and focus more on how God sees me and what I am doing for His glory. I will trust God with Kelsie's future and hand my fears over to Him. Most of all, I will embrace my duties with thanksgiving and positivity and praise God for this crazy, but beautiful life I have before me.

Mysterious fever

Kelsie kept a fever all night despite me alternating Tylenol and Ibuprofen every 3 hours. They gave her a high dose of Ibuprofen at the ER which broke the fever (it got down to 98.5) but when she woke up from her nap it went right back up again. She had Ibuprofen at 11:30am at the ER, I gave her Tylenol at 4:30 but at 6:00p, her fever was up to 104.1 again. She was still acting ok, trying to play and acting herself for the most part, but the acetaminophen was doing nothing to bring down her temp. So I gave her another dose of Ibuprofen at 5:30pm and around 8:30 it was 99.5. But by 10:00, it was back up to 101 and stayed between 100.5-102.5 all night. As a PNP who sees kids with fever all the time, I usually don't get too excited about fever. I usually don't even treat Kelsie's fevers unless they get above 102 or she is acting sick. But after what happened yesterday, I was a little more on alert last night. I actually set my alarm so I could make sure her fever wasn't getting too high.  She still ate a good dinner last night, and slept well (except for me waking her up to give her medicine). But this morning, she is still sleeping as of 9:10am and that is not like her. She is due for more medicine but I checked her temperature and it was 100.0, so I'm just going to let her sleep it off.

As to what is causing this, we're still not sure. She still doesn't really have any symptoms. She coughed 3 times since being home from the ER but that could just be her typical occasional reflux cough. A UTI is still a possibility because they didn't check her urine at the ER. Since it was just day one of the fever, they didn't want to traumatize her with a catherization and I didn't disagree. However, since it has been almost 24 hours since this started and we still don't really have any symptoms to clue us in to the cause of this fever, I still want to rule out a UTI. So I went by her doctor's office last night to pick up a urine specimen cup and I am going to try to get her to pee in the potty for me when she wakes up (they gave me a hat for the toilet too so I can catch it). The other possibility is an ear infection. The resident looked in her ear yesterday and thought it looked a little red but when I looked, I thought it looked ok and I definitely wouldn't have treated that as an ear infection. (They didn't think it was bad enough to treat yesterday either). But I saw her sticking her finger in her ear last night and checked again and it definitely looked worse in the left ear. I will check again this morning and may have her doctor take a look when I go to drop off her urine. She definitely isn't acting like a kid with an ear infection (still eating well, not fussy, not complaining of pain, not waking up crying, no cold symptoms etc), so even if it still looks worse this morning, I'm not so sure that I would even treat it with an antibiotic yet as it could still just be viral.

They gave me Tamiflu and wanted me to start that even though her flu test was negative. If by some slim chance this was actually a false negative and she did have the flu, it could be more serious for her because she has CF. But I just really don't think that is what this is. She doesn't look or act like all the other kids I've seen with flu this year. And Tamiflu can cause a lot of abdominal discomfort and GI upset, so it could make her feel worse. I have actually taken it before and it made me throw up after the first couple of doses. So I didn't give it to her last night. I didn't know how it would affect her and I didn't want to risk her having a tummy ache and vomiting during sleep. I still haven't decided if I am going to give it to her this morning or not. Ahhh its both a blessing and a curse to be both a pediatric health care provider and a mother! My mind teeter totters all the time on how to care for my child's many healthcare needs!

Scary ER visit.

What a day! It started out like a typical Monday. We had breakfast, played with toys, I washed some dishes, then packed up our bag for a trip to Target later. I changed a dirty diaper, then changed Kelsie's clothes, did her PT and her breathing treatment and was putting Kelsie's shoes on when I noticed she felt warm. We were about to leave to go to Target and Kelsie was waiting at the door saying "bye-bye?" and I said "yes, we are going bye bye but first we have to put on your shoes". I picked her up and was putting on her sheos and she was complaining that they were "tight". And they were looking like they might be getting too small so we went upstairs to get some more shoes. And she was still whining "tight...tight". Not crying, just kind of whining. And then she just laid her head down and I noticed she felt warm. And her face just looked different, weak all of a sudden. So I ran back upstairs to get the thermometer and it read 103.4. And I just held her and she laid her head back and closed her eyes. She could barely hold them open. She went from running around just a few minutes earlier to falling asleep in my arms. I got her to sit up and take some Tylenol and called Nathan. I kept checking her temp and it was going up and up and up ...103.8, then 104.7, then 105.5... I wiped her down with cool wet rags but that wasn't helping. I was thinking this is probably just a virus, I just need to get her temp from getting too high. And once it got over 105 I knew I was taking her somewhere.  I was cradling her in my arms about to leave when she vomited. So we went back up to change and I laid her on my bed. Her temp was up to 105.7 or 8 and by this point, I was really feeling nervous. This was literally all within a 10 minute period of time. Nathan knows that as a mom, I can lose my sense of nursing judgment so he always asks me, what would you do if this was your patient and the mom called in saying their temp was that high. And I said I would tell them to go to the ER. I am a firm believe in NOT over-using the ER but this time, I felt like it was warranted. And so thats where we went. Prior to that I had called her primary care doctor and left a message with her nurse. By the time she called me back, we were already in the ER. She left a message saying I hope this means that you have already left for the ER because that is where you need to be.

This is how she looked before going to the ER...not really sleeping, but couldn't keep her eyes open.

At the ER, she remained still in my arms for a while, and didn't say anything for a while, until her fever started coming down. And then she ate a whole baggie of Cheerios and drank her Gatorade.
The doctor said she heard some crackles in her right lung so she did a chest Xray just to make sure their wasn't any pneumonia. It was normal. They also did a flu test but discharged us before the results even came back. Her pulmonologist came down to see her and recommended giving her Tamiflu anyway. (Thats the medicine used to treat flu). I checked once we got home and the flu test is negative. They think this is just a virus so we will see how it plays out. It was a scary morning though seeing how high her fever went and how sick she was acting! But she has perked up now. She just woke up from her nap and is happy and playing at present.

Once the fever came down, she was gobbling up some Cheerios. But then she fell asleep again while at the ER, even though the doctors were talking in the room...so not like her!

 

 

Kisses goodnight

These are the days I will cherish forever. I know that with all certainty. Putting Kelsie to bed is such a special time for me. I love the cuddles, the story time, the bedtime prayers and the kisses goodnight. Every night isn't as tranquil as that sounds but it's all the same to me. The giggles and tickles, the squirms, the run away and chase mes, and yes, even the protesting cries--they are all special. Even when she is in a bad mood and fighting going to bed, she still gets quiet when I say it's time for our prayer. She listens intently to every word I say. As my eyes are closed in prayer, she rubs my face but eventually brings her hands together as well. And as I end, she echoes my ending with an "amen" of her own. We have our special mommy daughter talks and then give hugs and kisses. Tonight, she gave the best Eskimo kisses and didn't want to stop. I relished that moment and was conscious of the fact that I wanted to etch it in my brain and never forget it. She giggled as I walked out of the room blowing her another kiss, then throwing my arms out as wide as they could go saying "I love you soooooo much!!" She laughed and repeated, "maaaaa much!" Then said "night night!"

But, still, before I go to bed, I can't resist another kiss goodnight. This time while she's sleeping. And I have to say, this is one of my favorite moments of the day. Staring at the face of your child while they sleep is such a precious moment. I kiss her sweet face over and over and just thank God for giving me such an amazing gift. Yes, I know without a doubt, I am going to miss these days like crazy when she grows up!

Art

Kelsie is getting more into coloring, painting, craft projects etc. I have been doing some sort of craft time with her on a regular basis but she is now ASKING to do it. "Paint? Paint? Paint?" She got several painting/coloring sets for Christmas so I'm sure that has sparked the increased interest, that and she's just getting to that age. I also took her to 2 art/music classes call "My Sweetarts" in December. The individual classes were called "Little Elves Workshop" and they made holiday themed crafts. She absolutely loved it! And I did too! They had several craft stations set up with different activities so the kids could move from table to table as they liked. She got to bring home several handmade crafts and got to show off her work to her daddy which made her feel very proud! :) I signed her up for the winter session class that will start this Friday and go through March. I'm even thinking of doing an art party for her 2nd birthday (thanks to my aunt Ana for the idea!)

The painting was going so well until I got distracted, turned around and found her eating it!

Cutting those eyes, knowing she did something wrong!

Showing me her messy hands!



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Cart for PT machine and nebulizer

We got a new cart to hold Kelsie's PT vest and nebulizer! Its an audio-visual cart like we had in our classrooms at school for the projector. It has a power strip on the back that we can plug the machines into, so all we have to do is plug in the one cord from the cart and then start the machines. We are very excited because now we can just roll them away in between uses and they don't have to sit next to our couch all the time! The PT machine is really heavy so its not practical to pick it up and move it all the time, and the cords were always in the way. Since we use it twice a day every day, it makes sense to keep them nearby.  This cart helps us easily access it but also gives us a convenient way to roll it away and store it. We cleaned out a space in the downstairs coat closet so we just push it in there after we finish PT and its working perfectly! 

Health update

1 - Appetite...back to being an issue. She started eating well again for maybe a a week, but is now refusing food again. She'll eat oatmeal in the morning consistently (if she's distracted by TV), but other than that, her intake has become pretty minimal again. Now that we've started Pediasure, she will drink that without fail, but I have to be careful not to give it to her too early during mealtime or thats all she'll take. For a child who never liked much milk, she definitely asks for it a lot now! She's getting about 2 of those a day. I usually just mix 1/2 bottle of Pediasure with whole milk to give her at mealtime and she gets some at snack too. If she doesn't eat her food, I keep trying to find something that she will eat and if she still refuses, I just give her more Pediasure. It has all the nutrition she needs for a full meal so if she doesn't eat, I at least feel better that she is still getting nourishment through the Pediasure to help fill in the gaps.

2 - Constipation - this has been difficult to manage with her. Once she gets backed up, its always very difficult to get her back on a good routine. I did the 1 cap a day daily until she was having consistent soft/loose stools then I backed down to 1/2 cap but as soon as I back down, it seems she gets constipated again within a day or 2. Her stools are not hard so I don't think she's having residual old stool, its just more formed and she's only passing a small small amt. Big belly, and not eating. So makes me think constipation again. ?

3 - Reflux - We have obviously always known this was a problem for her but I never actually saw her refluxing since she was a baby until recently. Even though we have restarted the Zantac, we are definitely noticing her burp things up more than we ever have.

4 - Cough - I got sick with a virus about 2 weeks ago. I had the worst sore throat of my life, was in urgent care on Christmas Eve and took a Z-pack, and thought for sure Kelsie would get it. It led to the classic congestion/cough but was never terrible however I am still coughing some. I definitely think Kelsie has had a touch of it and even wondered if she could have had a sore throat which might explain her lack of desire to eat...but she seems to be passing it pretty well. She had a slight elevation in her temp last Sat (99.8), some nasal congestion, and coughing both overnight and during the day. But that seems to be resolving!! :) Keeping fingers crossed! Cough is way less, maybe once or twice a day, none at night. No more congestion. She is overall more cranky/tired so I think she has felt bad from something but hopefully improving.

5 - Hypertonic saline! We waited until after Christmas to start it (just with all the traveling, thought it would be easiest) and we have been able to do it 15 min twice a day consistently since we started it on 12/29. She is doing super! I am soo soo proud of her! The doctor told us she would be happy if we could get it in just 4x a week at first, expecting that it may take 6 months before she got to the goal of 15 min twice daily. But we're already there!  The first night she fought it, we bribed her with a prize and ever since she just seems to get it and understand. She's not fighting anymore, and will even help hold it. I feel this is likely responsible for how well she has done getting through this little cold. It makes her cough but that is a good thing because the point of it is to help her clear out secretions.

Love you!

Kelsie has just started saying love you back to me and I can't even express how sweet it is to hear that! And when I ask how much does mommy love you, she throws her arms back really wide and says "maaa much!" (aka SOOOO MUCH!). "And how much do you love mommy?" ...."maaa much!" :)

No words could ever express how in love I am with that little girl. I could kiss her all day. Hold her and snuggle and rub her pretty little head as long as she would let me. Nothing can compare. When I go to kiss her goodnight before I go to bed, sometimes I can hardly pull myself away. Sitting next to her bed staring at her perfect and peaceful little face just makes my heart melt and I feel so incredibly blessed that she is mine. I thank God for that precious little girl.