Fun in the Sun!

Our Memorial Day weekend was full of fun and excitement! Not only was this our 1st weekend with our new nurses, but we also had a visit from Uncle Matt & Yea-Yea (Brian's brother and mom)! We are not able to see them as much as we would like; therefore, every visit is packed with good times! 

Drake had a great weekend and he definitely likes both of his new nurses. He has already manipulated them into holding him all of the time...and he loves that! They have both been quick learners with Drake's needs and routines. I love seeing the excitement when new people are impressed with Drake's abilities! We are extremely hopeful about weaning him off of the vent! He is gaining so much strength, and he is very close to rolling over. We need him off of the vent and able to freely move about on exercise mats to truly tap into his full potential. 

On Sunday, Drake's nurse and Yea-Yea stayed here at the house while Brian, Kennedy and I went out on the lake with some friends. This was Kennedy's very first time out on a boat. For her first time, I would say she did pretty good; although, she didn't love it...yet. There will be plenty more boat rides in her future, so I'm sure she will feel more comfortable with a little more time. 

1st time on a boat!!!

She loves her daddy!

Fun with mommy & daddy!

Nap time on the boat.

Playing!

Happy Boy!

Story time with Yea-Yea!

Yea-Yea sings the best songs!

Watermelon!!! :)

Photos by Kennedy! I caught her taking pictures with my phone :)

Sent from my iPhone

Fully Staffed...For Now

Yesterday I entered the NICU of Trinity Mother Frances here in Tyler. The last time I was in there, I was being rolled through on a gurney to see our very tiny Drake and Kennedy shortly after my emergency c-section.  It was surreal walking through the NICU halls and looking at the exact issolettes which held our precious babies in their first few hours of life. To my surprise, many NICU staff members recognized me and were asking about Drake and Kennedy. We are excited that one of our new home nurses, who begins this weekend, is coming to us from the NICU. However, in this visit to the NICU I was not there as a parent; I was there as a friend. One of my dearest friends gave birth to a precious little girl 6 days ago, and last night she was care-flighted to Children's in Dallas. I am pleased to say that the actions taken by the medical staff at Children's are already showing improvements in her health. We will continue to pray for her health and for strength for her mommy and daddy during this difficult time. 

Over our weekend we had several substitute nurses here to help. It was nice to have extra hands, but it was even better to have Lisa and our regular night nurse back! I'm also thankful that my mom was here to spend the weekend with us! Our new weekend nurses are scheduled to begin this weekend. We know that it will take some time to adjust and for them to become familiar with Drake, but we are excited to have a full care team in place. 

Drake has done a fantastic job with all of his therapies lately! His physical therapist and I were encouraged that we were able to get him into his stander smoothly and he tolerated it the entire time without a fuss. This is a huge step forward! Thankfully, Kennedy is finally feeling much better! After being fever free for 3 full days, she was finally able to hang out with her bubba. The 1st thing she did was rub his head, which always makes him smile, and then she said, "I love you!" Their sweet and tender moments absolutely warm my heart. 

Listening to a book and holding bubba's hand :)

Looking good in a bib!

Nice work!

He was trying so hard to get his hands in his mouth. 

Our little diva!

Weeeee!!!!!

Daddy snapped this while she was busy talking to gran and poppy on my phone. When did she get so grown up???

Pigtails!!! 

Gotta Keep 'Em Separated

Needless to say...that is much easier said than done with toddlers. Kennedy developed a cough and started running a low-grade fever over the weekend. We were without nursing assistance from Thursday night through Sunday evening; therefore adding our attempt to keep them separated to our daily duties was a bit challenging. There is nothing like being thrown a curveball to keep us on our toes! I took Kennedy into our pediatrician on Monday and confirmed what we thought...she has a cold. There are not any magic potion antibiotic cures, so we just have to let it run it's course...and try our best to keep Drake from catching it in the process. 

Yesterday morning at 5:30am I took Kennedy into the kitchen for some Tylenol since her fever was back up. Then I took her into our room and even with her weak little voice she said, "Hi, Dada!" when she saw her daddy getting ready for work. Yesterday at the doctor she was able to stand on the big kid scale for the 1st time. Our little girl weighed in at 19.2 pounds in clothes and shoes! Bubba has almost 10 pounds on her. He weighed in at 28.5 pounds at the doctor on Tuesday. 

Drake did amazing with his physical therapist today! She said this was her best session so far, and she visited with me about all of his positive signs! I love that she is already seeing the potential in him that we see! 

On Saturday we had a wonderful visit with my sister, her husband and their two kiddos. It was a fun and relaxing time being able to hang out with them again. I have to admit it was nice to have Aaron help Brian with the furniture changes we decided on instead of me! We came to the realization that Drake's condition and nursing needs are not going to change any time soon. We thought Drake would be more comfortable in his crib, rather than the pack-n-play, so we set up his own little area in the living-room. Kennedy was not a fan of the change her first night. She has become used to Drake not sleeping in her room, but moving his crib out is going to take some acclimation. 

I am hesitate to say this because I don't want to jinks us, but we are supposed to have 24hr nursing coverage from this point forward. I met with his new night nurse scheduled for Thurs, Fri & Sat nights, and she seems really wonderful! This week she will only be doing Thursday night because she is finishing up with her current job, but we are looking forward to her joining our Care Team! Nurse Lisa will be out of town for her brother's graduation until next week, and we have some nurses filling in over the next few days. I'm glad to have the help, but I'm a little anxious about new people. I'm going going to try really hard to not be a control freak or micro-manager, but I can't make any promises. 

Hanging out with his cousin, Elizabeth. Neither one of them seems very sure about this :)

Love this guy!!!

Enjoying some snuggle time with Aunt Mere!

Drake's new "room" setup in the living room. 

Cooking with mommy & daddy in the kitchen :)

Kennedy had some fun with Aunt Mere, too!

Sweet girl!

So the girls were not as excited about dressing alike and taking pictures as we had hoped! Maybe we will have better luck next time.

Hanging out with daddy!

Is she too young for chores? 

Backyard fun!

Cousin Jacob thought the swing was pretty cool, too! 

Exhausted!

We knew heading into today that it was going to be a long day, but my, oh my, it has been exhausting for all of us! We had barely been home this evening when our night nurse walked in like an angel sent to relieve us! I'm pretty sure for the 1st time ever I saw the look of relief wash across Lisa's face. She, too, was in need of a break tonight. 

We packed the car to the brim early this morning as we set out for our first long journey to vent clinic in Dallas. Gran met us along the way to pick up Kennedy for a day of fun away from the hospital setting. We arrived to OCH (Our Children's House) ahead of schedule and went to check in before going to meet another OCH family on our old floor. To our surprise, we were immediately taken to a room and the process began. The parade of medical staff was constant...one right after the next, X-rays, blood draws, trach culture, weight, height, head circumference, dietitian, respiratory therapist, nurses, nurse practitioner, child development doctor and intern, pulmonologist and intern, ect... Meanwhile, Lisa was attempting to fit in his regular respiratory treatments, feeds and meds all while I was trying to hurriedly fill out a mound of paperwork...at least 100 pages...ok, maybe not 100 pages, but it was a lot. 

The good news is...Drake received an excellent report today!!! His X-rays showed nice clear lungs and we are moving forward with his recovery. For now he will still be hooked up to the vent 24/7 but his breath rate trails (where the vent doesn't give him any breaths) are being gradually increased. He is off of his breath rate for 8hr each day as of now, and we will gradually increase that over the next month until our next vent clinic. Our goal is to reach 16hrs each day off of his breath rate and to wean down to room air on his oxygen. 

We did have a high stress, heart pounding, panic inducing period in our day. When our 8hr battery backups ran out of power, we were finally making our way to the car and ready to hook up to our heavy duty battery that we leave charging 24/7. Battery backup malfunction!!! It was now 4:41pm and we were 2hrs from home running on the vents internal battery only...30mins until complete power loss! Talk about stressed!!! I immediately called our DME company and headed to Richardson to pick up a replacement battery. Lisa situated herself in the backseat with ambu-bag in hand ready to start bagging at the moment we lost complete power. A 15 mile distance seems simple enough until you toss in the element of rush hour traffic! We both grew a few gray hairs, but we made it and the exchange was complete. Finally we were breathing a bit easier as we scurried down the highway to pick up Kennedy and finish our journey home! Thank goodness Brian beat us to the house and had dinner in the oven (I love that man)! 

Wiped out!

Having some fun with mommy!

Such a hard worker!

1st Blizzard! Thanks, daddy! 

Taking her baby for a stroll

Our little artist! 

Not exactly the idea of the toy basket :)

She can't reach the pedals, but riding her tricycle is her favorite thing to do!