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MY LITTLE GIRL SERENITY

jciprian01

May 2013

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3 MONTHS OLD

Oct 03, 2012 04:54pm (EST)

Hey guys. Sorry it has been awhile, things have been pretty hectic. Well I have some awesome news. Serenity weighs now 5lbs 4ounces. And she is looking really cute. She is wearing new born diapers and both preemie and nb clothing. She just started bottle feeding two weeks ago and is getting the hang of it. She cries, smiles yawns poops pees and moves just like a normal baby. A weeks ago her doctor told me she has ROP, stage 3 on her left and stage 2 on her right. Yesterday she had her eye exam again and they have gotten a bit better. Now she has stage 1 on her right and stage 2 on her left. She was so active yesterday, and more awake and alert about things. Her doctor says the goal is to have her fully on bottle so she doesn't have to go home with a feeding tube. He said she may need to go home on a little oxygen, which is not bad at all. So we are praying and hoping in 3 more weeks I get to finally take my precious little one home. So far she is doing wonderful and I couldn't be any more proud. It scares me a bit to know I will be taking care of her, along with her dad, full time. No nurse, no doctors, just me, daddy and baby. Time to start preparing and getting all the things she needs, like a car seat, bed and bassinet and oh a little bath thing to so I can take her sponge baths when she is all dirty and stinky. LoL. Finally, I know now that she knows who I am, she is always staring at me, and when I talk she looks at me. She is truly a blessing.

I don't know what is going to happen in the near future, but I do know that she has a purpose that only GOD knows, and I look foward to the challenges that we face. I am so proud and happy.

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2 AND HALF MONTHS OLD

Sep 10, 2012 03:00am (EST)

Hey guys. So Serenity is now completely breathing on her own. She is on the cpap cannuala, and breathing at 21% of oxygen. Her stats are amazing. She is now at 33cc of breastmilk and tolerating it fabulously and she is pooping and peeing regularly. I am so proud of her. When I called the nurse today, she told me she is doing great. She said that they are all surprised by her, and shocked. She said that maybe Serenity is using a side of her brain that is unique to her. It made me feel so proud. Because for months all I kept hearing was she wasn't going to make it, and they wanted me to give her a natural death, and when I decided to keep her alive I felt they gave up on her, but I didn't. I knew in my heart she would make it. And look at her now she is 3lbs 13ounces. I was finally able to bring her some clothes so she can wear. She looked so cute.

I will tell you this, anyone who has been or is in the NICU, it'll be a long road and they will give you the worst news, and if not god bless you. But always remember, if I've learned one thing its this, never give up on your baby even when the road seems bleak. Although your mind will try to convince you always follow your heart. Just like any other babies, preemie babies deserve a chance at life. Even if they struggle always remember, don't think of them as sick babies, but normal babies and love them always.

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2 MONTHS AND 2 WEEKS OLD

Sep 04, 2012 04:12pm (EST)

Hey guys, Serenity is doing so good, I am so proud of her. She is on this new ventilator called nava, and she is now breathing more on her own with the vent of course. She is on 21% oxygen level, and they droped her level of support. They said she is doing really good on the new vent. I believe sometime next week or the week after, after she gets stronger breathing wise, they are going to try and extubate (take the breathing tube out) and try and see how she is bottle feeding. I am so nervous and excited all at the same time. She is already sucking, she was sucking on a pacifier yesterday, it was the cutest thing ever, because even the smallest of pacifiers was to big for her. Lol.

She weighs now 3lbs 8ounces, and is 14 inches long. She is so big, and beautiful. She had her eyes open and was looking at me, I can tell for a fact she knew who I was. I was hoping she missed me because I havent seen her in two days because I've been sick and didn't want her to catch anything. When I saw her I said hey baby, and she was turning her head to try and look at me. Man seeing her really made me want to cry because she is so big now. I remember when they told me they wanted her to have a natural death because if she were to survive than there is a possibility she wont hear, see, talk, move and live in a normal society, they even said they don't know if she will feel emotions.

Its funny because as I was holding her, I was telling her about my day at work, and told her about my new schedule, and I told her I get to spend her first christmas with her and news years and that I took three weeks off for her birthday. And I asked her you llike that? And she smiled three times when I asked her this and told her. It made me feel proud, because depsite what those doctors told me, my little baby is still here pushing to prove them wrong. She may not be perfect but she is mine and as long as she is fighting to survive I will never give up on her. I also bought her, her first rattle, its an elephant. Lol. Its still to big and that was the smallest I could find. I left her Bible underneath her incubator so GOD could protect while I'm not their. And I left her Serenity Prayer.

Still a bit scared but I am hopeful, and excited to whats to come. Keep praying guys, she is almost home with me and daddy.

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2 MONTHS OLD

Aug 28, 2012 03:48pm (EST)

Hey guys sorry I havent been on, just needed a few days to recuperate and gather what the doctor told me about Serenity. Well my little butterball, is doing fine. She is stable. She weighs now 3lbs 4ounces. She looks like a little baby. They started her feedings and she is now at 25cc, can you believe that. Just the other day she wasnt feeding at all now she is eating like a chunky monkey, and pooping on a regular. She smiled at me yesterday, ot made my heart fill with so much joy. Lol. She does sucking motion like a baby. She is still on the vent.

I was really disappointed in her doctor yesterday. I ask him, when will she be able to get off the vent? and you know what he said, "it depends on her, I mean we tried it but she didn't do so good so we put her back on" I said ok, and how long do you plan to keep her on it? He said, "again I dont know but if she continues like this, that is if she doesn't get an infection, or pnuemonia, and stuff, then we may have to do surgery on her trachea and she will have to live of the vent for the rest of her life, she may not be able to feed regularly I mean she might, but that is something we need to discuss because I dont think that would be best for her." Grrr he pissed me off. Like seriously the last bits of hope I had left I feel as though he is trying to take it. Look I know I cant change her brain injury but I can sure help a little, come on, he is so pessimistic. Jus a week ago he told me their is a possiblility that she will be able to breath on her own, Im trying to do the best for her and give her a fighting chance, and I feel like he dont want to help. He just wants me to hurry up and decide whether or not I want my daughter to live or die, and to chose death. No parent wants that, but I want her to go down fighting and trying.

How will we know if she can do it if we dont try. I just want her to have a shot, is that to much to ask? Isnt your doctor suppose to help you and you baby as much as they can, and try and see of she is capable of doing it. I feel like he just gave up on her the day he found out about her brain injury. Im seriously considering of changing doctors. All I wanted was for him to say well we are going to keep her on the vent for a couple more weeks and then try the CPAP or Nasal Cannula so that she can develp strong lungs and be able to breath on her own. He is such (excuse my language) an asshole. Doesnt he know that her living and dying are not my decisions to make. At least if she was able to push herself and if she slowly fades away then at least I know GOD wanted her by his side and Im ok with that, I mean Ill be heart broken of course but at least Ill accept it. But try is all Im asking for.

My daughter deserves a shot at life just like any other baby out their in the world, and although she will be imperfect I will love her regardless. I know in my heart she can do it, and if other preemies have an opportunity to do it, I believe they should be able to take it, to go with a fighting chance, you never know it may surprise you. And if they go, then at least you know you gave them a chance at life. I feel as though he just wants to be done with her, and instead of helping her, he is bringing her down. Hopefully they do something about it because if he say something to me that I could quite frankly not want to hear because it was so left field, Ima tell him off and tell them to change the physician immediately. So fed up with everyone who is pessimistic. Grrrrr

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1 MONTH 3 WEEKS OLD

Aug 18, 2012 05:39am (EST)

Serenity is almost two months. I went to see her today, to do hands on, and yesterday as well. Yesterday I enjoyed every minute of it, because I played with her, gave her a bath and sung her a song. I held her, and she smiled again. Its crazy because when the doctors told me about her brain, I was sad and hurt but when I saw her that day, yesterday and today, I just didnt see what they were telling me. They said she wouldnt be able to walk or move, but she wiggles and moves all the time. They said she wont feel any emotion, and just three days ago I seen her smile for the first time, and she gets angry. So I might have been really depressed, but when I see her doing all these things I know their is still a chance she will come home. Those doctors can go and suck it, because my daughter is strong and she will survive and she will defy the odds.

Than tonight, when I went to Serenity's hands on, this stupid RT was nagging me the whole time. She seriously pissed me off, to the point of me having to walk away, you know what she told me, "preemies are very sensative and get stressed easily, because technically she is suppose to still be in your womb," Who does that!!!! Seriously!!! What is wrong with this lady, when she said that to me, that was it, I demanded to speak with the charge RT and I told her to get this lady away from me and my daughter. It was so bad that my own daughter was irritated, her heart rate was at 205 and her oxygen level was at 40. She needed to go, so I made her leave. She tried the heck out of me. Ah I have never been so mad and disgusted by Winnie Palmers staff until today, and its not all just her. I swear she will never come near me or my daughter again, I made sure of that. Finally when she left, Serenity calmed down and finally fell asleep. Grrrrr, some people, I swear!!!!

But on a positive note, Serenity weighs 2lbs 12ounces and looks really good. They began feeding her and now she is up to 4 feedings, and she is pooping regularily. She looks so beautiful and chunky. Like a baby doll. Keep praying guys she is almost their.

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DEPRESSION

Aug 16, 2012 05:37am (EST)

Today I had a family conference with my daughters doctor. He showed what her brain development looked like. He basically said that 80% of her brain did not develop and if she were to survive that there may be a possibility that she will not live in a regular society, or walk, or speak, or do anything and will become wheelchair bound, or she will not survive. I really dont know what to think about all this. If you have ever been through this please comment and write because I really need to talk to someone who has gone through this before? Is their any hope for her brain to develop? Will she have a chance to come home with me? I just dont know anymore. I know it sounds horrible but Im really hoping for the best but I am preparing for the worst. No one wants their baby to be that way or have so much hardship before they even get a chance to see the world. I dont wish this upon anyone, not even my worst of enemies. I feel as though I was robbed from motherhood, and getting a bad experience giving birth and trying to be a mom. Bad news, is the worst, because it makes you feel worthless. What to do? What to do? Crying inside and out.

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1 MONTH AND 1 WEEK OLD

Aug 05, 2012 08:22pm (EST)

Serenity has been doing ok. Im a bit concerned because lately she has been desating and dropping her heart rate lately. I dont want to think about the worse because she is still living. The surgeons say they are going to wait until she is 1200g, which is 2lb 10ounces, to make any decision on surgery. Everyday I hope and pray she is still alive, and everyday my fear becomes more and more apparent to me. Lately I havent been able to sleep at a regular time because of all the anxiety I feel and thoughts running threw my head. What do I do? How am I going to take care of this beautiful baby girl God has given me? Am I even good enough? Will she make it to come home with me? My mind keeps racing and yet their is no end. Often I feel as though I am living in a nightmare that I seem to not wake up from. Is this normal. On top of that I feel more anxious she is closer and closer to coming home and I'm becoming a bit nervous about it. Everytime I see her at the NICU I feel so happy and I hope she knows I am their with her always. Sometimes I can't really tell. Hopefully I will be able to do a whole lot more than to see her in an incubator staring out. I sometimes look at her and she raises her hand up and I like to think she is saying hi to me, and when she has her eyes open, although I know that she can't really see, I like to think she sees me and knows what I look like. I'm really hoping for the best and pray that at least my baby is in my favor and she survives everything life has to throw at her. Feeling overwhelmed.

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1 MONTH AND 3 DAYS

Jul 29, 2012 03:14am (EST)

Serenity is officially 1 month and 3 days old. How excited I am to know she is still alive and kicking. She weighs 1lb 11.5ounces now. Pretty soon she will be 2lbs, she is soooo cute. For last three days she has been desating alot, to the point where it was scaring me, and I realized that I think it was because of the nurses they had attending her those days. Honestly, I know it sounds horrible but I really didn't like them. Not that they were mean and not nice its just I didn't like the way they were handling her and I think Serenity felt the same. It was like she was telling me I needed to get our favorite nurse back. She usually desates but not as much as she has these last three days. And yesterday they had a nurse and a trainee with my daughter and the trainee stressed me out to the point of me crying. I literally thought she was going to break my daughter's arm when she was turning her over. Its really nerve wrecking when you see something like that. They just didn't understand her and her needs and I felt it because she was telling me this. Finally I talked to the head nurse today and told her I only like 4 woman attending my daughter, 2 morning nurses and 2 night nurses. And today I had my favorite nurse, and Serenity was doing fine. As soon as her hands on was over she fell straight to sleep. Its funny because babies can sense change, and although they are little they definitely have their own personalities.

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DAY 27

Jul 24, 2012 07:55pm (EST)

I am soooo excited, baby Serenity will be 1 month old tomorrow!. Wow its crazy how time flies. Not only am I excited because she is improving everyday which makes me happy, we are that much closer to her coming home in October. She is gaining weight everyday. She is now 1lb 9 ounces. She is pooping which makes me happy. I havent heard anything from the neurologist about her brain, but despite what they tell me, I know my baby is smart even if she is small, and as long as she lives I am happy. Its crazy because we celebrate the birth of the baby and just the bdays every year. But with her I want to celebrate her age. Lol. For everyday she is in their I celebrate it. She is truly a Miracle, and GOD'S gift to me. Im starting to understand now that I was never like everyone else, I was always different. And I understand now why. I know from now until she gets out of the NICU and even when she is at home that life for me will never be the same, and challenging. But im ready maybe not for the hardship but for the challenges. My New Years resolution this year, was to be better, and I think I will accomplish that, didnt know how I was going to do it, but now I know how.

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DAY 25

Jul 22, 2012 10:22pm (EST)

Serenity is doing much better than the past couple of days. The nurse said she pooped a little which is good because she is having bowl movements. Even the doctor is happy about it. Its amazing how for a split second one can think that their little one is not going to make it, and they come and prove us wrong. I felt really disappointed in myself because yesterday I thought that. I was so mad at myself that I went home. Because I felt like how can I face her after thinking that about her, while she is their wiggling in her incubator. It sounds corny but when she was born I made her a promise that I will be strong and stay positive, and so far I felt like I broke it more than once. Its tough because as you stare at her she so beautiful and yet fragile, but in reality she is probably the strongest out of all of us. She makes me feel so much happiness, a happiness that I have never known. She opened her eyes today and was looking at me, and stretched out her arm as if to say " hi mom, I see you." What an amazing feeling. Its crazy, because I want so bad to touch and hug her but just staring at her fillls my heart with so much joy that when I have the opportunity to hold her Ill cherish it so much more. Cant wait for tomorrow because they said I will be able to do Kangaroo care, and having her against my skin makes me feel like I have a purpose as a mom.

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