June 30

This morning Everett was ready to eat! He ate 33 ml at 8, 15 ml at 11, 40 ml at 2 for Kristin, and 30 ml at 5 for Kristin. Kristin, you're hired! I told her before she came down, that was her job, clearly she took me seriously. ;) We were only planning on feeding him every other feed but if he showed signs to eat we said we'd go for it so he ate at all four feeds today, and hit his first 4-0! We tube feed the rest, he is getting a total of 80 ml and needs to consume that on his own every feed in order to go home for 48 hours straight.

Ashley took this for me this am, love his cuddled hands...

She had to switch his tube today. He was getting very uncomfortable eating so she switched sides. I got some pictures in the minute it was out. I haven't seen my baby's face bare since he was born and he looks nothing like he did then. I love his precious face more than anything, it brought tears to my face to see his free of nonsense! I can't wait to get that baby face home to kiss, kiss, kiss, kiss, kiss, kiss, kiss...

"Oh, WHAT? No tape and tubes? Let's roll on outa here mama!"

During rounds today we decided that we'd give him this week to show us what he's got and if he doesn't show enough improvement we'd start discussing g-tube. Again, no pressure Everett. If he shoes consistent improvement this week we'll continue to give him more time. I don't want him to have surgery, he'll need to be intubated again (tube down his throat to breathe for him during the procedure) to ensure his lungs can withstand the surgery, it's protocol. I don't want another bad oral experience for him, but I want him home where I know he'll thrive. So, time will tell. Our rounds last all of 5 minutes now, conversing about feeding only. We know his lungs have healing left to do, he is still a bit tachypneic but less and less. So, let's hope his lungs continue to improve as well as his eating.

Katie and Mary from work came to visit. Everett was very awake all morning and Katie put him right to sleep, he needed his rest for his next meal. Thanks for visiting ladies!

I called at 7:30 to see how he was doing and if he was awake for his 8pm feeding and Julie, our primary night nurse said he didn't budge when he had his blood pressure checked, diaper changed and temp taken, all things babies hate. So I'll stay home, maybe try and rest (pah) until his 11 pm feed.

All tuckered out after aunt Kristin's amazing feeding!

Clara finally ate a great dinner. Thanks Nancy for all the amazing meals! 

June 29

This morning Everett was bright eyed and bushy tailed when I got here. His nurse practitioner Melissa is back today, she adores him and is glad to hear about his eating progress. We took the oxygen off to see if he can sustain on his own. We are going to do allow him to attempt to bottle feed every other feeding time. I asked her to only have Andre and I feeding him still, she is encouraging me to allow the nursing staff to try as well. I'm just not there yet. Once I see he is more comfortable, maybe. Andre and I go much slower, and are much more gentle with the process. I don't want him taking steps backwards again. Now that we have a private room, I can be here throughout the night if need be.

She doesn't think it is necessary to do the swallow study at this point. I told her the reason I wanted to was because I am nervous he may be aspirating while eating. She said we would know if he was, there would be other signs. I think the goal for this week for him will be to build his endurance and attempt to consume his feeds on his own. We are asking a lot of him, but we know he is trying hard already!

I can't tell you how excited I am that he has a cheek free again for me to kiss all over! He looks so different with tape off of his face, I can't wait until all I see is his handsome, chunky face with nothing on it, I won't be able to keep my lips off of him.

Like aunt Kristin hasn't done enough, she bought Clara this fun outdoor play table. It looks like so much fun! Thank you aunt Kristin! Ever and I can't wait to come play too!

Lisa and Mimi came by to see Everett today. We gave him a bath and he was too tuckered out to eat his 2 PM feeding. Mimi held him and snuggled for quite some time, thank you!

Andre got here at 5 and he drank 35 mL I came back for the 11 o'clock meeting and he drank 32. He wanted to try more but he was breathing pretty heavy so I had him take a break and he fell right asleep. 

Aunt tiffy  took a picture of his tiger booty last night!

June 29 - happy birthday mom

Happy birthday mom! You would be 65 years old today. I would do anything to have you here with me always, but particularly this last month of my life. I have never felt like I have needed you so badly in my entire life. In the 13 years I had with you, you taught me the strength that one needs in hard times. I know I still have much growing to do in order to be as amazing as you! I strive to be more like you every day, and I know I will get there. I'm glad your strength is something that is so vivid in my memory, I don't remember many things, but your strength and fight for survival never waivers in my mind. Your struggle and fight taught me everything I need to know to get through tough times, thank you. Thank you for giving me what it takes to keep trudging through difficult times. I don't know how I was so lucky to have you for a mom. Thank you also for picking a dad that would be by my side always. He somehow picked up the pieces after you were gone and pushed me to continue to be a strong woman. I'm one lucky girl! I would give anything to have you here, even for one minute. We love you! You are the greatest grandma, your love for my babies shines through me, to them. They will know you well because you are in me, you are my heart. 

June 27

I came in on Saturday morning for rounds. I was here at eight and they had already rounded. Things were pretty much saying the same over the weekend. He drank 27 mL Saturday morning, and 32 that evening.

Aunt Kristin came to spend the afternoon with Everett on Saturday. It was the first time Andre, Clara and I have been home relaxing on an afternoon in a really long time. It was a wonderful break. Thank you!

We came in as a family to get some pictures with Clara for his one-month birthday, which is tomorrow. Claire has been in rare form, I guess you could call her a toddler. We never realized how loud she is until we are in the hospital, she shouts instead of talks. She is very excited about many things, or just upset about many things depending on the moment. Most everyone finds her adorable and amusing, or at least they pretend well! She was not overly interested in her baby brother. She was focused on everything else she saw in the room. We had to bribe her to give him a kiss with a balloon. I am thinking once we are home she might take a little more interest, hopefully! 

Clara wanted to sit down and take a picture before we left since that is what we did the day before, before we went to the park. We weren't sure what she was asking at first so by the time we figured it out, she was upset.

Once she saw her face in the camera, she decided to cheer up!

Nunu and Dolly had to get a picture too.

She liked her wagon ride into the hospital. She is a very cautious little lady. When she gets into anything with straps she will say, "buckle, safe!" And of course she wants all her friends buckled in too! 

Not there one minute and she's ready to roam the halls with her frog!

Thanks for the snuggles aunt "krissin" as Clara would say.

Kristin got a few pictures of Clara being spazzing McGee,  hence why they are blurry.

First attempt at a family picture. Clara's shirt says "best big sister ever" from aunt Tiffany, Everett has on a onesie from Merrissa that says "amazing little brother." She also has a shirt from Merrissa that just says "big sister." Maybe we should have picked that one!! 

 

A forced kiss with the promise of a balloon after.

I love my babies! Even if one is a tad crazy these days!

We went to grab dinner at a local pizza place in downtown Saint Pete. I came back to the hospital after. Look at this boy being so silly!

I love you Everett! 

My bff

Clara, you are my best friend forever! You make life so wonderful! I love you!

Yesterday Clara and I went to the park. On our way out the door she was endlessly asking for her hat. I reminded her she had one on but didn't feel like the argument so we went back inside. She knew right where it was,  she went and grabbed it, and brought it over for mommy since I didn't have one. What a thoughtful little girl! I love you sweet pea!

June 28

Everett just drank 22 mL all by himself! It took us about 25 minutes, but who is counting?

Last night Andre and I came back to hang out with the little man. He only drank about 2 mL of his milk.

Ashley is on again today! Yay! She sent me this picture when she got here.

Everett had a great day! He did not want to eat at his 2 o'clock feeding, so we tried again at five and he drank 32 mL then.

When daddy was with Everett, we went to the beach! It has been a while since I have been able to take Clara to the beach! It was a perfect day, it rained in the morning and it was cool and the sand was easy to pack into castles. Kristen built many castles for Clara to destroy! 

Good morning sweet boy! We can't wait I'll be at the beach together! I'm sure you could use some fresh air!

I woke up after five minutes of napping on Saturday and realized why he sporadically gained so much weight. The male nurse that floated to the NICU, the one we had on the bad day, (that contributed greatly to the bad day) flushed his line with water before and after every feeding which gave him way too much fluid! I text Ashley right away, our primary nurse, and she said that that must have been it! They decided to give Everett Lasix to help him get rid of the fluid. I went to the charge nurse and let her no we don't want any floating nurses taking care of Everett. My poor baby, his belly must have felt like it was going to burst!

Kate visited and got Everett some awesome tiger shirts! Thank you!

Steven, Julianne, and Tiffany also made it in today! Everett is feeling lots of love!

While I was at the hospital Andre and Kristin took Clara to Ivy's fourth birthday party. I have no idea how four years have gone by! They had a lot of fun!