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ARIYANU'S JOURNEY HOME
Oangelaola |
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HAPPY BIRTHDAY BABY GIRL
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May 03, 2013 02:32am (EST)
Dear Ariyanu Enitan Ajibike Ajayi:
It is exactly one year since you were born. AT exactly 5:20am you came screaming into this world. Little did I know that that would be the last time I heard you cry. If I had known this I would have cherished the sound of your voice. I would have enjoyed the moment more. I was so concerned about how you were going to be and so when you came, I wasn't prepared to cherish your sounds enough. I felt I would have time. But as time would have it I didn't.
Today your father and I celebrated your birthday. We sang happy birthday and blew out a candle in your honor. We released a pink balloon and watched it float away...just like you floated out of our lives forever. We kissed your urn and held each other as we cried. We miss you so much. The days have not made it easier. Next year we are hoping we will celebrate your birthday better...perhaps with a sibling if mommy's eggs cooperate. Perhaps...if time will allow us. If not we will continue to cherish you in our hearts. As much as it aches it makes us realize that you were real. And we never want to forget that you were real. You were here...You were the manifestation of the love that we shared. You were what made our family complete. You will forever be loved.
Love Mom
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Posted by Oangelaola | Comments: (6) | Permalink
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UPDATE ON TESTS
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Feb 02, 2013 04:23am (EST)
So the Dr's appointment was uncomfortable as always. I hate having things stuck in me...ugh! Anyway, the growth is still there, he doesn't see any veins or blood vessels inside the growth so he has prescribed estrogen and another pill to help with inflamation. We will continue to monitor it. Meanwhile DH thinks I should get a second opinion since ovarian cancer is always hard to diagnose...I think I am going to start looking for a specialist. I want to believe my doctor but after our ordeal I have very little faith in the medical professions abilities...
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Posted by Oangelaola | Comments: (4) | Permalink
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JUST A BROKEN HEARTED RANT
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Jan 29, 2013 12:45am (EST)
So I have four girlfriends that I have known for over 10 years. We went to college together and got married around the same time. Possibly a year apart. Anyway, last year we find out that we are all pregnant and we are all having girls except for one who had a boy. Our girls were all supposed to hang out and be BFFs for life.
Now I go to events where my friends are with their precious bundles and while I am there I am 100% focused on having fun and try not to think about how it could have been. Once in a while though it creeps up. Like Saturday...I haven't been myself since Saturday and I came home today from work and curled up in my bed...DH came home and noticed my curled up. He gave me a hug, placed Ari's urn in my arms and left us alone. He understands I need the space.
What happened was we went to a birthday party for my four year old Godson. His sister was born two months after Ari. She is so beautiful and "normal". She never went through what Ari did and she is still here...I love this little precious girl with all my heart. She smiles big when she sees me and cries when I leave. But she makes me miss my precious baby...It always takes me a few days to bounce back after seeing her. This past one was extremely hard because DH and I both realized that unlike our friends, Ari's birthdays will be spent without her precious cute little face blowing out the candles...
So I guess this isn't a rant more like a pity party...Does this pain, does this ache...does this feeling of emptiness every go away?
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Posted by Oangelaola | Comments: (4) | Permalink
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UPDATES....
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Jan 28, 2013 01:23am (EST)
Hello Ladies:
I wish I knew how to get on the chats when everyone is on and talking. So we found a house! YIPEE. It was bittersweet but we found one that we both fell in love with the moment we walked in. DH and I were surprised because we were about to make an offer on a different house and then our realtor said we should just check this one out and see what's going on. We walked in and it just felt right. Anyway, the fun part begins (home inspection, closings, and finding a contractor for projects, and of course packing). I am dreading packing because we have all of Ari's stuff and well...I am avoiding the emotions that come with putting it away. DH doesn't want to take anything to the new house that we will not be using...so he asked me if we could sell some of her stuff like the bassinet, crib, dresser, car seat, stroller etc.
I feel like he has moved on and I am still holding on...I am not ready to sell her stuff...oh well! We are talking it through.
Meanwhile I started acupuncture. A girlfriend of mine said it helped her with weight loss and helped her get pregnant. So far it has been okay. I am using it for weight loss for now. Not yet ready for baby number whatever this would be. Plus here is some new news that will shock you...doctors found a growth on my ovary. They want to do more tests to see what the heck it is but they don't think Cancer. To be safe I am having tests done. I am not going to worry about it unless I have to worry about it.
Work still sucks...and is still a lot but ...trying like so many of you to put one foot in front of the other ...
Anyway, here is a picture from the last day with Ari. Now I Lay Me Down To Sleep came by the day before she passed away and took pictures with us.
Ariyanu 21
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Posted by Oangelaola | Comments: (5) | Permalink
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HAPPY NEW YEAR
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Jan 14, 2013 11:44pm (EST)
Hello Everyone and Happy New Year:
DH and I rang the New Year bell at a black tie event. The first outting since Ari's passing. We had a wonderful time with close friends. Work is still hellish but I am beginning to see a silver line at the end of the journey...
I am okay for the most part but still have my moments when I just loose it. i.e. I heard the song that was playing the day Ari was born and I just started crying uncontrollably. Luckily I was at home so my little episode happened in private. We are back to house hunting. This is something we were doing in earnest before Ari's passing because we wanted her to have her own home to come to. But then she passed and we kind of spaced out. Now we are looking again. It is bittersweet because we will see something and say things like "man if Ari was around she would love this Yard. I could see her playing in it..." or "wow this would make a perfect little girls room' knowing that we are talking about Ari.
Everything is subtext and lined with her. When my mother in law told me to "hurry up and have another one" I was offended but then she finished the sentence by saying "i just can't stop hurting, I miss Ari so much just give me another one to help...please". It made me feel like we are not the only ones hurting. I get it...she was ours but she was shared with more than just us..
Oh well. I can't help talking about my princess...is it wrong that I haven't washed her outfit from her last day? I have it in my top drawer and sniff it every chance I get...
Now I Lay Me Down to Sleep took pictures of us with Ari on the last day. I got the pictures in the mail. They are so beautiful I will post one or two of them in my next post.
How are you all doing?
thank you again for the support. It is good to know I am not alone, we are not alone, and my faith tells me that Ari is not alone...
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Posted by Oangelaola | Comments: (7) | Permalink
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HOLIDAY VENT
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Dec 20, 2012 02:21am (EST)
First of all thank you all so much for your kind words of encouragement. I really appreciate it. I have been MIA and feel like the fog is finally lifting and all I feel is exhaustion. I miss my little girl. I would trade any number of days left that I have for one more day with her. I am not angry at God or life or anything like that...I am just sad. I walk around now with a hole in my heart. I don't feel like DH and I are a family anymore. We are still close but we realize now more so than ever that we have lost something dear and great and that we are not 100% anymore. I guess as my mother says we are learning to walk again but with a limp...never quite straight.
In the form of encouragement someone said to me the other day that "Don't you think it is time to move on...we have to move on and be thankful for what we have...life, jobs ... blahblahblah". I wanted to slap the person but I just smiled thanked them and kept it moving. I am not ungrateful for what I have...I just miss my little girl you presumptions piece of s***. But I didn't say that, I just smiled and kept it moving.
Today at work people were talking about Christmas plans and someone asked me what my plans were...I just smiled and said "Same old same old". It's nt like I am dashing to the mall Christmas shopping or anything like that. I have a tree that is unlit and undecorated. Just sits there staring at me and I want to burn it. I bought it when trees where on sale in January. I was pregnant and had hopes that my little one would be home sitting in a high chair and looking at all the lights and colors. So my Therapist says "put the tree up she would want it" and I did. Now it is a reminder of everything that I have lost. Can I please burn the damn thing?
A client at work asked me today "how is your daughter..." I wasn't used to people asking me this anymore. Most people I deal with are used to not asking since they know she passed. Hadn't seen this person in a while, I froze. I said she was at peace and then changed the subject. Someone else later when people were talking a bout gifts for Christmas asked me if I had any children...I said no then felt ashamed. Of course I do...did...whatever! ARI is still very real to me.
I guess I am just sad that my reality is not anywhere near the dreams I had. I don't know how to mourn, I don't know how to move forward. I don't know what to do... Just needed to vent.
Therapy isn't helping people! Therapy is making it worse.
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Posted by Oangelaola | Comments: (7) | Permalink
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LONG STORY...SHORT
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Nov 02, 2012 06:22pm (EST)
Our precious bundle of joy passed away last night at 7:30pm. She was never able to overcome the challenges of her BPD/CLD. After several bouts of pneumonia the doctors were unsure as to her ability to survive any procedures mild (like a Trach) or major (lung transplant possibly). Ari fought tirelessly throughout the last few months.
Yesterday we held her for hours without end. DH was there till the very last breadth. I couldn't, it was to heartbreaking. I wanted to remember her warm and smiling not cold and gone. She is at peace now. We will be having a private memorial service for her next Saturday. Right now I am numb.
Thank you all for the support you have given us during this entire process. It has meant a lot. We are hopeful with our faith that one day Ari will be reunited with us. Till then my heart will remain broken...
I will keep praying for all the other babies in the NICU who are still fighting and their parents. Your story will end with tears of joy and not tears of sorrow. God bless!
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Posted by Oangelaola | Comments: (14) | Permalink
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SO MANY LEVELS OF LOW....SLOW RISE TO HIGH
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Jul 21, 2012 09:29am (EST)
Over the last week we have seen the very lows this journey has taken us and some slow highs. I am almost scared to wish for highs. After Ari got of the dexa her breathing became labored. Her settings were so high there was no point but to reintubate her. The reintubation didn't help her as she continued to have labored breathing and fight with the machine. We agreed with the docs that it was time to call in the pulmonary specialists. Ari was bagged and took her first vehicle ride to a specialist hospital. Imagine, her first ride is in the back of an ambulance, sirens blazing. Level IV/V NICU is her new home. She was put back on the oscillator along with a huge tank of nitric oxide. Her lung x-rays were so spotty and there were only a few pockets of that looked healthy. That was last week Wednesday. All week long we battled the lung disease and I am happy to report that as of tonight she is doing much better.She was off the oscillator within 12 hours of arrival at the new facility. Still on the nitric oxide and still intubated but her x-rays look better. The whole transfer process has broken me down considerably. I feel tired...worn and haggard. I just watched as 8 people surrounded my little girl and bagged and moved and connected things to her, beeping sounds everywhere. My dreams are haunted by my sedated Ari and all the wires and beeps...I wake up to beeping sounds in my head. How could she be on CPAP for the first two weeks of life and then be all the way down with severe CLD? It doesn't make sense to me...I want someone to blame, and the only person I feel justified to blame is the one I see in the mirror everyday. Even though rationally I know it is not my fault, I can't help but feel guilty...DH is so encouraging and patient with me. This has been so rough on me and without him, I would totally crumble. I am not as strong as I appear...I realize that now. But it isn't about me at the end of the day. It is about Ari and getting her home. If I could trade places with her I would.
Her eye exam on Monday showed that she has the beginnings of ROP Stage 2. She went to stage 2 in a week. There is no sign of Plus disease which is a relief. The docs say that she is at the early stage so not to worry just as yet. It is normal to see this in micro preemies due to vent settings. Because her O2 settings are lower this week they are hoping it doesn't progress and we will have a status update every Monday moving forward
The new facility is about 1 1/2 hours away from my home. I go up, spend the night in her room, spend the day and then come home and rest for a day before doing the double shift again...Sometimes if they have a spare Family Room, I get a bed, otherwise, me and the chair. I haven't held her in almost 2 weeks. On the flip side her weight gain has been great. She is now 4lbs 5oz. She is sedated so she doesn't fight the vent so she sleeps a lot hence the weight gain. Which is great! She lost about 6oz with the transfer but has gained it all back. She is looking cuter and cuter. Her features are coming in...
I don't know about you guys but this whole experience is very tiring. I told my DH that I want off this rollercoaster. He said "well no one asked you if you wanted to get on it, what makes you think you get a say on when you get off of it...we are on this ride till God says we get off, till Ari is strong enough to come home." Ain't that the truth! I still want off, and I want a healthy baby... Hoping this week brings more sunshine, less rain.
Blessings to you all.
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Posted by Oangelaola | Comments: (6) | Permalink
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