home at last...

Johanna is home!!!! thank you everyone who had anything to do with her being here today. i am sooo grateful. she is doing wonderfully. very awake and attentive. she cried for a little while and got better when daddy held her. I am loving every second of it!!! Its is such a beautiful thing to have her with me now..

wow.. so nervous

I have NEVER been so nervous!! Im am excited and so scared. Dr simko called and said that no, in fact we will probably have to come get her in the morning. So chrisitne, if u read this, its not around 4, its prolly gonna be around noon. But the clerk will call you. She passed her hearing screaning on both ears! Im so relieved to hear that. Oh my stomach feels like it is in a knot. I've waited so long for this. Never thought the day would come, but here I am, hours away from getting to pick her up. Tomorrow will be a very very emotional day with tons of tears im sure. Oh my, I can't wait!!!!!!!!

tomorrow!!!!

YaY!!!! so i just got news that she is coming home tomorrow!!!!!! but not till like 4ish i guess.. so i still have to go to school...lol.. but yay!!!! haha.. i cant even explain how happy i am! im getting her bag ready right now too! im even taking a diaper.. no more hospital stuff!!!!


yay!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

waiting...

Waiting for Johanna to come home. Its seems as though now that it has gotten so close to her coming home i feel like it is taking even longer!!! haha, impatience sucks!

I love bath time!

Today we gave Johanna a bath! I love to do bath time because it seems as though Johanna really enjoys it. I can't believe how big she is getting! She's so beautiful and her personality is starting to shine through. Today I put on the last preemie outfit that fits her. Next step, newborn! Her outfit to come home in is yellow. I didn't care to much for it at first, but I just looked at it a little while ago, and it is really cute. I also have a green and yellow blanket to kinda match her. Im so excited to bring her home! We have so much catching up to do!

Sidenote

So its about 4 am and usually at this time im up thinking about Johanna and how she is doing, but today when I was thinking about her I started thinking about how big she has gotten and how much better she is doing. When I was thinkin of that, it made me realize that without every single person at the Dameron NICU who has been involved in taking care of her, she more than likely would not be here. Every single person in there is truely an angel and you will never understand exactly how much I appreciate everything all of you have done. They took care of my baby when I just was not capable. All of the nicu staff are truely life savers. And I don't just mean the babies. If it wasn't for the nurses who took time out of their busyness just to talk to me and console me or even just joke with me, I might not even be here. I can say with all sincerity that they saved both of our lives. I would also like to thank Christine for always being there for me no matter what. Her patience with me was incredible and I made a nurse friend. She inspired me to want to help other people. Also Donna. She is wonderfull and is I love when I call and she already knows it is me, I could call a million times and it wouldn't bother her. Some other ladies are Marcia and Virgie who always make me laugh. Natalie who is so sweet and I can tell she lovess to take care of johanna. And I cannot forget dr. Hipolito, who is always entertaining us with his singing and uniqueness. And just to everyone else there. Even after johanna gets to come home, you will all be in my thoughts and prayers. Hopefully one day I will get to work with some of the best nurses and the Dameron NICU.

johannas journey

Made by Andrea Micheloni

i will never get tired of "good" days...

Today was great. I got to DAmeron and Johanna was up and playing with her mobile, like actually grabing for it! I was so excited to see her so active. So i picked her up and she was so amazed by the balloon that the little baby boy next to her had next to his crib. She would not take her eyes off of it. She ate well, no vomitting for that feeding, which is good. they are continuing her medication for an infection she has on her tongue, they said it should go away soon. She payed so much attention to me today, i loved it, but it was an issue when i had to leave and all she would do was cry. It made me sad, and if i could stay there all day, i would. That is exactly why im so excited she'll be coming home soon, that way i can spend all my time with her. Im glad she hasnt had a "bad" day in awhile, which makes me soo happy...

mixed feelings

So yesterday Dr. Hipolito came and talked to me. He said that hopefully either by the end of this week or the beginning of next week, Johanna will be discharged. Those are the words ive been waiting to hear for four months. I have everything ready and am so anxious, BUT, im also very nervous. Nervous that im not going to do as good of a job as i thought i would. All this waiting for so long, anxious to bring her home, and now im doubting my ability as her mother. I know everything will be ok, but im still nervous. I hope this goes away soon. On a different note, I found out why Johanna was puking like that, she has acid reflux. yea they said she should outgrow it eventually. well im off to the hospital...

a better day

So today was better. i went for johannas 5 o cloclk feeding and she was up and ready to play!! so awake. I just calle and they said she hasnt needed that air bag thing for day shift, and so far hasnt needed it for the nightstaff. The nurses said Dr. Hipolito will probably be the DR. to dishicharge her, so that means by next monday, i think. HOPEFULLY! haha

tired...

So its almost 4:30 am and I've been here about 7 1/2 hours. Im tired. I wish Johanna was home so I could take care of her there. For her 2:30 feeding, she threw up... a lot. So much effort when into throwing up on her part that she was literally sweating. Her hair drenched. I wish I knew what was wrong, at least then I could try to help her, but I have no idea and I just feel like crying. Some good news is that she isn't breathing as hard as she was before. But occasionally she will. Its a step. Dr. Simko is here tonight. I can't help but feel like he intentionally ignores me. He checked on every baby but Johanna, maybe the other babies are sicker, im not sure, maybe im just being insecure, but I wish he'd at least come talk to me about what's going on with her when im here. I want to buy Johanna a valentines day outfit for Johanna but who knows if shell even be out for valentines day. Im dreading the fact that they might need to put Johanna back on the oxygen. They had to use that air bag thing about 4 times tonight. I hate to admit it now, but she might still need the oxygen. Not a thought I want in my head. Well guess ill just watch Johanna sleep for a couple more hours. Pray that she will do better...

So far So good...

Well its been 43ish hours since the canula came off and so far she's been doin good. Hopefully it will stay that way and Johanna will come home. They did an eye culture today and it came back negative for for an infection and there were no white blood cells seen, so that's good news. im going to stay the night here tonight, I feel as though I don't spend enough time with her as I should be. They say she's getting fussy and is in need of constant attention, I wanna give her that

today was one of those milsstones..

everyone told me that there would be milestones throughout this NICU experience and even after. I have seen her make progress over the past 4 months and watched her grow. But today i got to see one of the biggest milestones yet, the nasal canula came off. That small but big thing that is keeping her there. To be honest i thought the day would never come. i might as well have just accepted that she would never leave, but now, its lookin like now. Johannas friend Liliana got to go home today. i felt like crying, i had watched that little grow just as i had been watching Johanna. I cared just as much about what happened to her and wanted nothing but the best for her. And today, her mothers prayers were answered. I know the nicu isnt the best experience and no one wants to end up there. But in some silly sort of way, im glad things worked out hjow they did. I got the great privelage of watching my little baby grow. A nd i watched her prove a lot of people wrong. She fought for her life, so i will give her the best, because she has given me the best of her. And also, i got to meet great people, i would love to have meet them under different circumstances, but hey, thats life and ive learned we have no control over what happens. Our bodies are just vessels for our souls, and our souls, well they have plans of their own. Ive learned that i cant always be scared, but if id have told myself that 4 months ago, i would have told me i have no idea what im talking about. Time puts everything into perspective. im so glad that a group is starting for us NICU mommys. I hope this will be a good experience, im sure it will be...

grandma and Johanna!

She's Beautiful

Today I felt something different when I held Johanna. It was the most undescribable feeling ever. I felt nothing but pure love and affection for the beautiful little girl that came from me. In the past 4 months I have felt as though I missed out on the bonding time that most most motherd get. But today was an example of how very not true that is. I love her just as much as I would, if not more. I have such a new found appreciation for life and how sensitive it can be.

yay!...for now

“Doubt is not a pleasant condition but certainty is an absurd one.”


so i just called the hospital and i got news. johanna is at room temp. her spo2 level is 21%. next step s just gettin rid of that canula. I feel awful though. i want to be happy about this but ive had the experience of getting my hopes and then being broughten right back down. i dont want to doubt that achievements Johanna has made. im just scared. scared that the next day i will be told that no, infact they had to change something back, or that they're sorry and no, she isnt progressing. im in constant fear of bad news. and this is awful, because instead of doubting everything she is fighting for, im doubting her ability to continue doing so. im so glad that she is doing well, i just have to learn to snap out of being to scared. fear doesnt help anything...

Sick days suck..

and im sure johanna knows that... she threw up again, so they decided to run some tests. if something came back negative they would have to put back her IV, but i just called and the nurse said everything came back normal.. yay! so they are gonna just take down her feedings. well i took some new pics of her..

hoping...

Hoping that they dont have to put back her feeding tube :(.. she keeps throwing up!! i just wanna know why.. i wish she could tell me !! lol.. if only...well i keep praying and hoping.. hopefully within the next few days she will kinda snap out of all these breathing/eating problems

hmmm.. right?

So i guess the nurse was confused? maybe? i have no clue, but i just made my nightly call and the nurse says that, no, in fact johanna is not off her oxygen, but she is the same as she has been.. wtf?? why would that nurse tell me she wasnt on it anymore? that pisses me off so bad, the nurse read it from the chart.. how do you misunderstand that? well jan said she was gonna get johanna to room air by the morning, or she was hoping to at least, but im still super pissed at the day nurse, i hate that she got my hopes up

good news, finally, change

open up your plans and damn you're free look into your heart and you'll find the love love love love listen to the music of the moment people dance and sing i like peaceful melodies it's our god forsaken right to be loved loved loved loved ....


today fernando and i got good, great news.. Johanna is off her oxygen, thats right, off. when we got there i noticed the canula slipping from her nose, that always worries me, im scared she wont be able to breath, but then the nurse, ( which by the way i unfortunatly dont know her name to go with the face of the woman who gave me great news) tells me it doesnt matter because the oxygen isnt on. i was confused. she said they just had the canula on her just in case they had to turn it back on, but for 14 hours she was sitting at 95-100% off the oxygen. i knew she could do it. and i am so glad i wont be bringing her home on oxygen. im positive i could have taken care of her with it, but it makes it so much better that she doesnt need it. better for her.

today was good...

before the cool done run out i'll be givin it my bestest and nothin's gonna stop me but divine intervention,there's no need to complicate our time is short this is our fate, i'm yours ...


it seems as though Johanna knows that its time to come home, at least i would like to think so. its just that i want to bring her home soo bad, i wanna be her full time mommy, not just for 2 hours during the day, if that. oh its just frustrating, but she is doing well, she continues to put on weight and do well. S he is 3 months 1 week and 3 days old. big girl status, she will have teeth when she comes home!! im slightly concerned about her vomitting togh, she pretty much does about once every day, as far as i know, she hasnt today, but then again i havent made my nightly call, so i guess ill see...

So its the new year...

Cheers to a new year and another chance for us to get it right.”

AND I HOPE I GET IT RIGHT. I NEED TO GET IT RIGHT THIS TIME. IM GOING TO BE A GOOD MOTHER. WHEN jOHANNA COMES HOME, ILL PROVE IT TO HER. tHE DOC SAYS WE PROBABLY BRINGING HER HOME ON OXYGEN. AND YOU KNOW WHAT? THATS OK. IM OK WITH THAT. WE WILL HANDLE IT LIKE ME AND FERNANDO ALWAYS HANDLE THINGS. WE GOT THIS. SHES GONNA LOVE IT BEING HOME, I JUST CANT WAIT. HER ROOM IS SET UP AND ALL I CAN DO IS STARE AT IT.