Reminded

The emotions are hitting hard. Despite a positive visit with Kelsie's CF doctor and reports of a healthy baby with excellent weight gain, Nathan and I have still been overwhelmed with emotion as we are reminded that our sweet baby has Cystic Fibrosis. Since her diagnosis, we have been on a roller coaster of emotions . From the joy and excitement a new baby brings to the sadness and fear of this devastating illness, we have bounced back and forth as we have tried to process this news. I think recently there have been days where we have almost let ourselves forget. I have settled into a routine giving enzymes and meds and chest PT and that is becoming our new normal. And as we look at her and see health and normalcy we almost forget that the diagnosis is real and what it could mean for her future. But in actuality, I know we never forget it, we just choose to ignore it. That maybe if we just don't think about it, it will somehow go away.  I mean, we are doing everything they have told us to do, so that must mean she won't get sick or be hospitalized or have lung damage, right? She is going to have a normal childhood and be a picture of health just like I always imagined...this CF thing is just something that we have to manage daily but as long as we do everything right, she will be fine!? Or is that thought process just my optimism overshadowing the realism of what this illness could do to her? Deep down, I know what it all means, and I know I will have to accept it but, right now, I don't want to.

You may wonder why all of a sudden I'm feeling so sad especially after getting good news about her weight. Well, I talked with her doctor last night about the labs and she informed me that the levels assessing her nutritional status were slightly abnormal suggesting some malabsorption and malnutrition. I had told the doctor that her stools were slowly becoming more frequent and occasionally has the greasy appearance they once had.  So even before we found out her lab results, they increased her enzyme dose to 1.5 cap based on that information alone. (And as she grows she will need more enzymes anyway because the dose depends on her weight.) Her sodium was also just barely low, and her chest Xray showed some slight bronchial thickening and hyperinflation. The doctor emphasized that she was not concerned about any of the results, saw no need to do anything differently right now, and was still extremely pleased with how well Kelsie is doing. Still, it reminded me that no matter how great things look from the outside, CF is still affecting her on the inside. I also know that it is my job to look for subtle changes and be on constant lookout for any changes to suggest concern. Especially now as she is growing so quickly, this continuous assessment and reevaluation is vital to ensure she is getting the best nutrition she can. This all means I tend to be quite controlling of her care and have a hard time letting others help. The thought of letting someone else keep her, and figure out how to give her enzymes, and all her meds, and her chest PT, and make sure she is getting enough milk, but not overfed as to cause her to spit up and lose her enzymes is all very daunting. Please pray for my strength.

CF check up

Yesterday we had a follow up with Kelsie's CF doctor and they were so excited about her weight gain. She weighed 11lbs 4.6oz (up >2 oz from Tuesday) and that makes her weight for length over 90th percentile. That sounds really great but one reason that is so high is because her length is only 10th%. She was 50th percentile for length when she was born so it is a little concerning to me that it has dropped off the curve so much. Nonetheless, the pulmonary doctor was thrilled about her weight.  Kelsie also had some baseline labs drawn and a chest x-ray. She did such a super job for both. I hated to see her go through that, but the fact that neither really seemed to bother her made it a lot easier on me! During the blood draw, she only whimpered for the initial stick but I laid my cheek on hers and rubbed her head and she didn't move or make a peep the rest of the time! In fact, she fell asleep! And because they had to fill up 6 tubes of blood, it took a while. We then went from the lab to radiology to get the picture of her lungs. For the chest Xray, they had to put her arms above her head and they warned us, "she's not going to like this" but...Kelsie didn't mind. Haha. The picture that I posted below shows how they strapped her in. It looks horrible but it didn't bother her at all! She was a perfect little patient and slept right through it despite being strapped to a cold board with her head wedged between two diaper-wrapped wooden blocks. Nathan and I were in the room with her, and as we sat behind the shields, we couldn't help but laugh at how peaceful she looked despite being positioned in such a way. Granted, if she had been crying, I would have been too! She sure is proving to be a tough, good-tempered, go-with-the-flow kind of baby. Two Drs visits this week, both with needles, and neither phased her a bit. No increase in fussiness, no changes in sleep, just my sweet little baby getting sweeter every day!

2 months!

Kelsie had her 2 month well-child visit yesterday and we can hardly believe how much she weighed....11 lbs 2 oz!! This was the greatest weight gain she has had so far! Whooo hoo! She also got her immunizations and was such a TOUGH girl! She only cried when they gave the shots but as soon as it was over, so was the crying. Didn't seem to phase her beyond that. We go tomorrow for another check-up with her Pulmonologist and expect that they too will be impressed with her growth!

Look at those booboos :(

Kelsie's development is right where it should be for a 2 month old. She is smiling and cooing and even laughs from time to time. Her neck strength got a bit of a late start, though, due to the brace, so we are working hard on building up those muscles. In the beginning, we thought she was way advanced in holding her head up but later learned, it must have been that harness supporting the back of her neck because her head is a little more wobbly than it was before. But she's getting better at it every day. And she is rolling from her side to back now. Go Kelsie!

Tummy time

Sitting up in my bumbo seat

 Before her Drs visit yesterday, we went to Apex and met Nathan for what was going to be a picnic lunch at the park. However, there were lots of pop up storms around us, so instead, we had our picnic in the backseat of the car. :) But Kelsie still enjoyed getting to see her daddy. And after lunch, Kelsie and I went for a little shopping before her appointment. She was on her best behavior and slept the whole time. So I was able to shop at ease and even try on some clothes for myself. :)

Just a pretty shot of my sweet girl from today

Easter weekend

We had a great Easter weekend and were able to spend alot of time with family. My parents spent the day with us on Saturday and we had a great time. We grilled out, played with Kelsie, and just enjoyed the beautiful day. Sunday we also made a last minute decision to join Nathan's family for Easter lunch. So we made our first trip to Asheboro since Kelsie has been born and she visited her Nana and Papaw's house for the first time. We also took Kelsie to church for the first time. She did great and slept the entire time. For me, it felt so good to be back in the house of the Lord to worship and celebrate the resurrection of our Savior.

Grandpa, you're so funny

Grandma, thanks for rescuing me from the photo shoot!

So excited that Aunt Valerie came to visit

4 generations

Visiting with great-grandparents Papaw and Mamaw Roberts

Spring is here!

 We are just LOVING the Spring and take every chance we get to go out and enjoy the beautiful weather! Today we met my friend Kelly at Jordan Lake for a picnic lunch and Kelsie was showin off her good looks! ;) She really enjoys being outdoors - just like her momma!















And Kelly captured some sweet moments of me laughing with my baby girl! (Laugh lines and all! By the way, when did those become so prominent!?)

My heart and soul!

 

Kelly is expecting a little girl in August and we just can't wait to meet her!

Kelsie and Ava are going to be best buds, no doubt! 

Smiles and coos!

 Kelsie is becoming more expressive every day! It is so much fun waking up to her smiling face. I just LOVE it when she hears my voice or sees my face and starts smiling! She has also started cooing over the past week and we have even heard a little laugh here and there as well! I just love being her mommy!

Here are some pictures of her "playing" with her toys. Its so cute to watch her sitting in her bouncy seats smiling and cooing at the little characters.

I'm getting tired

That monkey is so silly

I love this little bee! 

Cuddle time!!!

It feels so good to finally be able to snuggle with my baby girl! When she was just 6 hours old, they put her in the harness and then told us we couldn't take it off. That just wasn't long enough for me to hold her baby soft skin against mine or cradle her tiny little body.  It felt like we were being robbed of that special time of cuddling with her as a newborn. I will never forget asking the resident when he thought she would get out of the harness and feeling that deep pit in the bottom of my stomach when he told me "well, she should be out of it by the time she is walking". SERIOUSLY!?, I thought. Are you kidding me!? As he said that so nonchalantly, I just burst out in tears. That was a very traumatic experience, especially as a first time mom, right after delivery. At the time it all seemed so impossible. How would I ever be able to take care of her in that thing? But I quickly figured it all out and the impossible became easier and soon enough was just routine.  The time line for getting it off was always up in the air and we were told so many different things but thankfully, 7 weeks did the trick and it is now all in the past! We will still have to follow her hips closely over the next 2 years and will have her first Xray at 6 months, but for now, we are so thankful that she is unrestricted! AND WE CAN CUDDLE!

First time on my side...I think I like it! :)

Nana and Papaw visit!

Yesterday Nathans parents came to visit and it was nice spending the day with them. I went out for a few hours to go to a baby shower and this is the first time I have left Kelsie during feeding time. :-o We have just started giving her one bottle a day to prepare for me going back to work. (It is also the best way for her to get her daily dose of salt.) Even though Nathan does a great job and I knew he could handle it, it was still hard on me to be away from her, especially at feeding time. But, of course, she did great. And with Nana and Papaw here, she got lots of extra cuddle time too! :)

I like snuggle time with Nana

Talking with Papaw

Yay! Real clothes!

Hmmm, well this isn't mommy but still tastes good

Bathtime!!

It was so exciting to strip Kelsie down to her birthday suit and put her in a real bath! :) She has been covered up in that harness from the time she was 6 hours old so this must have felt so good to her! And I just loved holding my little naked baby again!  She loved every minute of the bath! (I'll post the video later)

That was fun!! When can we do it again!?

GOODBYE PAVLIK HARNESS!!

NORMAL! Those words have never sounded so good! Today Kelsie had the ultrasound of her hips and it came back completely normal!! Dr. Henderson said he couldn't even tell from the images which one was the bad hip! (At birth, the right was dislocated and the left was just slightly loose.) He also did an exam which supported that there were no abnormalities so much to our surprise, he said she no longer needs to wear the harness...EVER!! We went in expecting at least 6 more weeks of partial use because this is what he had told us typically happens. But praise God - she is completely free to kick and move and cuddle however she pleases! Of course, she doesn't even seem to notice a difference but I am beside myself with excitement! Unless you have been through this, you have no idea how good it feels to be able to hold your baby just as she is. And all the little things too... like putting on pants and shoes and socks...and changing her diaper and baths and so much more! We will give her first tub bath tonight when Nathan gets home from work and I just can't wait! I also intend to put every outfit on her I possibly can tonight to make up for all this time lost in onesies alone. And I may also have to find time to do some shopping for my beauty as well! ;) Its a great day and so relieving to get such good news. Praise GOD!! :)

Oh and I should also add that we also had a weight check today and she weighed 9lbs 15oz NAKED!! Just bare-Kelsie...no deductions for harness and onesie...just a naked weight so no denying that its accurate! Almost 10lbs!!!!!! And we also got a length and if it is accurate then her weight for length should be at least 50th% which is super! This is still just a guess though since its hard to get her legs completely straight after being spread for the past 7 weeks!  

Right after we freed her of the harness! :)

She actually fits in her carseat like she is supposed to now! And

 look at those naked legs! 

I just love it! Look at those pants and the cute behind with ruffles! Can't wait to dress her up! <3

My pretty girl

 I just love taking pictures of my beautiful baby! Here are a few from yesterday!

High maintenance? Who, me? ;) (she has no idea)

Smiley girl

This is what happens when daddy comes home, oh geesh! ;)

Eskimo kisses from mommy <3

I love these new pretty flowers ;)

Water baby!

From the beginning, Kelsie has loved the water! Her very first bath and shampoo in the hospital was alot of fun and she was so alert and content through it all.  She still LOVES getting her hair washed (see the video below)! And loves to hear the water running. It always seems to calm her down.  We also have the sleep sheep that plays soothing sounds and the ocean is her favorite...so she falls asleep to the sound of the ocean every night. (But who doesn't love the peaceful sound of the waves crashing, isn't it the best!?) Her apparent love of the water is good news to us because we would spend all summer on the water if we could! Nathan and I both love watersports and spend a significant amount of time on the lake during the summer. We both waterski and enjoy jetskiing and going out on the boat with Nathan's family and also do a lot of fishing and canoeing with my family. But unfortunately, because Kelsie has CF, we will likely have to keep her out of the dirty lake water due to the risks of bacteria.  This is a pretty big bummer because being on the lake is one of our escapes during the summer and we even talked of living on a lake one day. But there are worse things, right?! And she can still be a little water baby; we may just have to redirect our time on the water a little further east...to the coast. The salty beach air is actually wonderful for people with CF. Folks with the illness often say they breathe alot easier at the beach and do not get sick as often. So a vacation beach house may be in our future...which I would not complain about one bit! ;) And we can always teach her to waterski on the intercoastal waterways! But since she is only 6 weeks old, we have a while before we have to worry about that! For now, we will just enjoy seeing her chubby baby rolls splash around in a baby pool, and taking her for boat rides this summer! (She did seem to like the motorboat pretty well haha).

Oh, and we are super excited about being able to take this harness off on Friday so we can put her in a real bath! After 7 weeks of being spot cleaned while wearing that brace, I have a feeling she is really going to enjoy sitting in that tub of water!!! (Now can you just imagine how disappointed I'll be if the doctor says her hips haven't improved enough to take it off...so lets just pray that doesn't happen!)

Playtime!

Reading my new book :)

Its very stimulating actually...

Exercising

Playing with the jittery birdie Aunt Ana got for me!