Tuesday, July 31, 2012

The Funeral and the day after

The weekend was going by so slow and just like that today is tuesday.  Yesterday was Hannah's funeral she looked so beautiful with her purple little headband and her cream gown made just for her (from Isaiah's promise).  As i walked in the funeral home my heart started racing i was so scared about seeing Hannah again in a coffin knowing this would be the last time i ever see her.  I walked over to her and automatically started crying she looked so beautiful, so peaceful she took my breathe away.  I just stood there watching my little angel wishing this wasn't my last time seeing her little face (on earth anyway).  Family and friends starting arriving to see Hannah a lot of tears and emotions, Dr. Jamie Beversdorf, Susan Cohen, Denise a colleague of Dr. Kipel who was one of Hannah's cardiologist very sweet women, another women came with Denise from there office unfortunately i didn't get her name :-(, of course our parents were there, my sister Adrianne, Kevin's brother Stephan, Kevin's cousins and there significant other, a good friend of mine from church Jennifer came with her partner ,  god parents, more family etc.  A little after 10am the service was ready to start,  Pastor Bell who came to see Hannah a few times in the hospital and who also is a great speaker was to speak i was pleasantly surprised when i seen our Pastor Pastor Tyrone Stevenson come in to speak last i heard he was unable to attend Hannah's service he had a funeral out of town to attend too, i understood it was ok but here he was to speak at Hannah's funeral :-).

Pastor Stevenson gave such a great word it was moving, uplifting, just what we needed he brought added light to Hannah's life out of all the great things he said the one thing that stuck out for me was her time he explained that even though Hannah only lived for 2 months the time was still so much longer then the eye can see in hours she lived for 1,460.97, in minutes 87,658.1, in seconds 5,259,490 my heart and face smiled 5 billion seconds that sounds so much longer then 2 months huh? in that 5 billion plus seconds Hannah touched so many life's and people i will never forget that the hours, minutes and me  my most favorite the seconds of Hannah's life.   My oldest Kairi wrote a letter to Hannah and wanted to read it to everyone before she placed the letter with Hannah her words were on point she spoke about God taking Hannah's pain away and Hannah watching over her big sisters i was so proud to hear kairi speak about her baby sister.  Last but not least kevin spoke he wrote Hannah a beautiful poem it brought tears to my eyes he's always been good with words and poems he proved that once again with his poem.

After all the the beautiful words about Hannah was over it was time for everyone to pay there last respects before they......closed the casket *sigh* that was the hardest part i didn't want them to close it i wanted to run over to her and save her take her out of that box where she didn't belong and protect her like i've been doing for the past 11 months (pregnancy and birth) but i knew that the body i saw laying there wasn't Hannah anymore it was just her shell Hannah had moved on to a better place, a place i pray to go one day (no time soon of course ;-) lol).  We drove to the burial ground the whole time i was wondering how do they transport her little box? i wouldn't call it a casket it was so small, we arrived at the burial ground as we drove through the burial ground i looked at the different head stones and read all the different dates some family sites, some were babies, there were all different kinds. they set on her  site as we all looked at the casket one more time, my little sister wanted me to open the casket one more time but i couldn't take having to open  see her there and watching them close it again plus it was sunny and bright outside i didn't want the sun to hurt Hannah's eyes, still being a protective mom.  After everything was done my family and friends we went to eat we laughed we talked we shared stories i felt good. I felt my job was done.

About 25 years ago my mother buried my baby sister who was a little over a year, when we went to the funeral home a day after Hannah passed away i mentioned to them my mom had buried a child in new jersey, after doing some research we found out we were able to use the same land there was room for hannah since my little sister casket was small and of course Hannah's is small too.  This blew my mind because who knew donkey years later i would be 1. burying my own child 2. it would be in the same spot my sister was buried, life is so unpredictable and funny i'm sure my mother never thought the spot she buried her daughter would be the spot she comes too to bury her granddaughter too, but i tell who did know our heavenly father he knew all this would come together the way it did.  Before Hannah's passing i never visited my sister grave it was something we never did for whatever reason.  Hannah isn't alone she has her auntie with her that makes me feel a little better.  My little sister didn't have a tombstone so kevin and i decided to get a 2 in 1 for both of them i'm thinking of something with intwined hearts with there names on it.

Today was a ok day i didn't feel like doing much, it took all day just to write this post.  i would come and go one minute i was interacting with the family feeling good then the next minute i would be sad and can stop thinking about Hannah.  After the funeral service my pastor said kevin and i would need counseling when he first said i was no we will be fine ( i thought it i didn't say it to him) but after today i know for sure i am going to need it i cant control the emotions i go through its up and down  and i am not use to this i usually control my emotions you wouldn't even know i'm upset about things but this i feel like i'm wearing it on my heart and shoulders i know its going to take time but how much time? no one knows just gotta go through the motion.  The good thing is i do talk to kevin and express when i'm hurting and my feelings i've learned holding things in and letting it fester isn't good.  One day at a time with god's mercy and strength it will all work out for the good.

Sing softly the song of my angel

Sing softly the song of my angel
Let the angel let you sleep for my angel
in her wisdom has begun her angel song.

Sing softly the songs of my angel
It holds the angel power, it lets the
angel let you laugh, it lets the angel
make you cry.

Sing softly the song of my angel
In my angel you must trust my angel only
cares for you. My angel wont let anyone hurt you.

When you are lonely just close your eyes, sing softly
 the song of my angel for my angel is with you.

So sing softly the song of my angel
let my angel let you sleep for my angel
in her wisdom has begun her angel song.
By Kevin Joseph

Joshua 1:9 NLT
This is my command-Be strong and courageous! Do not be afraid
or discouraged.  For the LORD your God is with you wherever you go. Amen.

Sunday, July 29, 2012

Its almost here

Hannah's funerals service will be held tomorrow. The viewing is from 9am-10am, the service following right after and she will be laid to rest.  I keep asking God for strength and remembering all the t-18 mommies who had to go through this.  Reminding myself how strong i am because of Hannah, reminding myself i have two beautiful girls who need me now more then ever. A day at a time remind myself.  Over the weekend another mom whose son passed away from trisomy 18 did a balloon release for all the babies who have passed on this year as i was looking through the pictures and names there was Hannah's beautiful name and Balloon my tears came down but not because i was sad it was happy tears for this beautiful gesture of the mother and the balloon reminded how free Hannah is.

Today i go buy our clothes for tomorrow i don't want to face this day but i know i have too, its like i do want to face it so i see Hannah's face again but then i don't because that will be the last time i see her face.  So much up and downs but with god strength i will be fine.  Right now this is a open wound and it hurts like hell i have keep it clean take care of it so it doesn't get infected i have to make sure it heals without a nasty scar.  One step at a time.

Hannahs balloon i love the four hearts, theres my heart, kevins,kairi and Kaliyahs heart we all love you very much.

Funeral service
Santangelo Funeral Home
635 Mcbride ave Woodland park, New jersey
viewing from 9am-10pm
service following right after.

Friday, July 27, 2012


I woke up today not feeling the best i feel like everyday i start feeling the reality i cried four times today the last one was totally unexpected, we were in Walgreens putting together Hannah's collage for her funeral and i seen a picture of Hannah and her dad i love that picture i said "awwww look at you too" then it hit me Hannah is gone and the tears started kevin held me and patiently waited for me to let it all out after my cry i continued with what we were doing.   Right now its a lot of phone calls trying to plan this funeral we can only do this right one time for Hannah and she deserves the best, unfortunately we didn't think Hannah would have passed away so suddenly or so soon so we didn't get to put away money or plan a funeral so now we have to plan one in a weekend *sigh* no time to grieve right now gotta get clothes for the girls,kevin and myself, luckily during my pregnancy a organization called Isaiah's promise had sent us some beautiful dresses for Hannah so she's all set i don't think i could've handled having to buy her a burial dress.... planning this is hard enough.  I know my baby girl is at peace and that makes me happy but i miss her so much i keep touching a picture of her face wishing it was her face.  Like my older sister Onica said remember all the good times, all the things that made me smile about Hannah some times that helps and other times it makes me miss her more.  Im just trying to take it a hour at a time anything else is too fast for me right now.

Kevin is being the amazing man he always is, when it gets too much for me he takes over. He tries his hardest to make me happy right now, like this morning OMG he had to take the picture of Hannah's footprint that was made for us at the hospital the day she was passing they put it in a frame that said "Mom" he accidentally dropped the frame and it broke into pieces i just hurt the break i looked around and it was in pieces  it was like Hannah passing away all over again my heart broke with the frame i was so hurt and furious asking why would he put the frame there? and i knew it was going to happen? i wasn't nice. He came back from the funeral home but they called and wanted us to come back together so i went out with him i sat in the passenger seat and felt i was sitting on something when i pulled it out it was a new frame i looked at it and put it down i wasn't happy i put down on his sit  he got in and said "here" i said  "i don't want a new one u bought i want the one that was given to me" he said "it is" apparently he felt so bad for breaking the frame he called susan the women who made it for me told her what happened he stopped by the hospital and she made me a new one *tear* i felt so stupid and mean i apologized gave him a kiss and thanked him so much i felt a breath of fresh air the fact he went his way out to do that just made me fall in love with him all over again, i whispered to myself and said Hannah you have the best dad in the whole wide world.    After that happening I was glad the first two days were me and kev consoling people, if it was a day like today i don't think i would of been able to console anyone my emotions are all over the place.  Its hard to talk about her or see her picture i know these are all natural feelings i just have to get use to them and let the process take its course one hour at a time.

I read this scripture on my churches  F.B page Hope touch NYC and it touched my heart
Jeremiah 31:13- I will turn their mourning into gladness; I will give them comfort and
 joy instead of sorrow.   I hold god to his word....

Thursday, July 26, 2012

An Angel in the sky....

Yesterday was another routined day we had a noon meeting with the doctors,nursing staff and palliative care to discuss what our next plan was for Hannah.  kevin and i woke up did our in the bed morning talk woke the kids up took our showers ate breakfast and we were off to see Hannah.  As we walked in the ward he heard alarms going off as we walked closer to Hannah's room the blinds were pulled i walked in first to see the nurses putting in a new IV on Hannah, apparently she went on a rampage and pulled out her IV and her feeding tube pulling out her feeding tube caused her to aspirate .  The nurse told me Hannah had a rough night she was very inconsolable they gave morphine it worked for a brief moment  they also had to give her Ativan to calm down.  At noon as we prepared for our meeting Hannah de-sated and everyone rushed to her bedside as i looked on the monitor at her was 9 my heart dropped the started calling for help they gave her extra oxygen through the by-pap i stared at the monitored begging for her numbers to come up, slowly but surely her numbers came but it was still low in the 70's sometimes hitting 80's, the doctors started her on morphine to relax her so she wouldn't  struggle to breathe.

Dr.Beversdorf came in and said "i think Hannah is trying to tell us something" i walked over to Hannah and instantly I started crying because i knew what was next.  The doctors told us to start calling our Pastor and family and get them here as soon as possible in the meantime they upped her oxygen 100% and rate to 30, kevin and i cried, we prayed and we cried some more after we got our cry out alone together we started making plans we asked for our pastor Pastor Tyrone Stevenson to be called to get her blessed,both moms were called,sisters,brother,god parents Shenna and Junior all those who played a important part in Hannah's life.  Since everyone lived in NYC and we live in NJ it took time to get everyone there not everyone drives as (honestly i didn't mind they could've taken there sweet time i wasn't ready to face what was about to happen).  My pastor saw that and decided we should make a time to get this started tell the family that and leave it at that after.  Kevin and i looked at the time it was 3:35pm i couldn't think to make decisions so kevin was the one calling our shot and i agreed with it, we set the time at 5pm, about 10mins later Dr.Beversdorf came in and said we shouldn't prolong this too long it isn't fair for Hannah 4:45pm was the new time. I was thinking to myself "why are we pushing up the time what is 15mins give my baby her 15 mins" but i knew it wasn't fair to Hannah and time did matter.  Before we knew it is 4:45pm they came in with a morphine drip to give continuous. At 5:15pm they started turning down the amount of oxygen is she was getting, all monitors were turned off so we could focus our attention on Hannah, our family started arriving just in time as kevin held her close and through our tears we closely watched.

At 5:35pm Kevin broke down crying.. i knew she was gone. Dr.Beversdorf walked over to kevin she listened with her stethoscope and confirmed she had passed away.  I could not believe it happened so quick i didn't expect for it to be over so soon, i knew in my heart she was gonna keep holding on that she would have surprised as with a miracle and hold her own.....that didn't happen my beloved angel went on to a better place she went on to be with her Heavenly Father in Heaven no tubes, no machines, no IV's no more blood draws she is free from all her pain MY GOD this bring so much joy to my heart, yes i will miss her truly without a doubt but her spirit lives with me for the rest of my life, her memories, her sweet smell will always be with me.  She was and now is truly an angel.

I am so thankful for the staff at Hackensack University Hospital the nurse Danielle took care of our baby so well even after Hannah left her shell the nurse still treated her like she was there as she changed her pamper she spoke to Hannah letting her know everything she was doing, she made her bed, swaddled her in her blanket put on her little hat and probed her up like the little princess she is. Ooooh Hannah looked so peaceful she looked as if she was a sleeping beauty with all that stuff was off her face what a beauty she is i couldn't stop looking at her my heart gets warm just thinking about it. I want to thank Susan Cohen and Dr. Jamie Beversdorf for there moral support  you guys treated us like family we are family now and forever you were there with us every step of the way helping us with decisions reassuring us that we can do this.  The child life team Rebecca, Alicia, Stephanie and those i didn't get to meet but had apart in Kairi's life thank you SO much you guys made it easier for us easy to explain to Kairi what was going on when we didn't have the words to explain you guys kept her focus on being a kid and taking on the burden of what was going on with Hannah. The job you women do take a  special type of people to do it and you are fit for the job without a doubt we will always keep in touch with you guys. For all the staff and Doctors theres so many of you guys i want thank you all who were apart of Hannah's life we were able to get this far because of you.

Our family thank you you made her going away day amazing it was great to look around and see all of you there with us we cried but mostly we laughed i am so happy about that i don't want Hannah's passing to be about mourning i want it to be a celebration of a little girl who fought from beginning to the end against all her odds she fought and she still came out a winner. I am so proud of you Hannah mommy and daddy love you so much you are forever in our hearts and i promise we will make you proud this isn't the end its the opposite it s just the beginning.... R.I.P Hannah Gabrielle Joseph. Sunrise 5/16/2012- Sunset 7/25/2012.

Genesis 28:15
Behold, I am with you and will keep you where ever you go,
and will bring you back to this land; for i will not leave you until
i have done what i have spoken to you.

Tuesday, July 24, 2012


Today we heard back from the surgeon he said its a no his reasons were reasonable the muscles in her heart are thick, while doing the VSD repair they stop the heart the surgeon is worried once he starts the heart the heart will pump stiffly which can eventually cause lung issues and make the heart weaker, he also feels it would not benefit her by doing the surgery.  I asked him what he suggested we do he suggested we let nature run its course..... as i walked back to Hannah's room i felt the same calmness i always feel when we get bad news or what we think is bad news for a second i felt tears forming as i looked at Hannah to think one day she wont be here, same time the nurse came in to change her sheets and asked would i like to hold her? ( i haven't held hannah since she went to columbia so for about a month) of course i want to hold my baby girl especially after talking to the doctor, i held her close to me took in her smell played with her hands and whispered god is in control of your life.

The doctor came in and asked what my plan was i told her i wanted to get Hannah off the by-pap back on her nasal cannula and home and that is the plan.  This Evening Hannah's cardiologist Dr. Kipel came in to talk to me he also had gottwn the news that the surgeon Dr. Malhotra decided not to do the surgery i love Dr. Kipel he  is an amazing cardiologist compassionate and always honest with us he spoke about what the surgeon had said and he heard about my plan to get Hannah home he expressed to me that he wanted to reach out to one more hospital and present Hannah's case to another surgeon as i'm listening to him i'm thinking i just accepted the fact that surgery wasn't happening..i was ok with that now he saying to talk to another surgeon 1. I don't want to get my hopes high 2. Is surgery the best idea for Hannah?  I want to try and give Hannah a fair chance at life but i don't want to lose my time with her i don't want to send her off to surgery and she doesn't make it at the same time i don't to bring her home and watch her slowly die... i don't know what to do, i can say i'm going to give it to god but that doesn't mean i wont still think about or wonder what's going to happen.  My oldest daughter's dad said something that's been sticking with me since he said it, he said "you cant do both its either you worry or you give it to god but you cant say you give it to god and then worry its doesn't work like that" it is so true but i don't know how to just give this to god, this is the biggest decision i'm sure i will ever have to make in my life and i want to make the best decision for Hannah *sighs* if only i knew what that was.

Tonight Kev and i are gonna sat talked about all out possibilities,fears,expectations.  I am so happy to have him by side going through this i'm sure i said this before and i'm going to say it again i couldn't see me going through with no one else but Kevin, when i'm being negativity he always remind me of the positive. Tomorrow we have a meeting with the attending doctors, cardiologist, and palliative care to figure what it is we should do, how can we get to a decision, what is best for Hannah, and should we entertain getting a third opinion. thank you all for the prayers they continue to give my family strength.

Romans 10:10(NKJV)
For with the heart one believes unto righteousness, and with the mouth confession is made unto salvation. For the scripture said, whoever believes on him will not be put to shame. AMEN.

Monday, July 23, 2012

Christmas In July

So all weekend Kairi couldn't wait until monday (today) Hackensack University Hospital is having a Christmas in July party for the kids in the pediatric ward and the siblings (awwwww that is so nice) Kairi was too excited.  My baby girl came back with a ipod nano she told them thats what she wanted for christmas and they told santa, santa also bought something for leah a baby doll, kairi also made earrings, they drew a character picture of her.  I am happy for the child life support they are awesome they keep Kairi entertained while i tend to Hannah, those girls have so much patience and always joyful   special women they are. God bless the whole child life team.

Today was our appointment with the surgeon at Newark Beth Israel Hospital it went fairly well, he had a good spirit i know we found our surgeon its not final yet he said he needs to go over her records and review her echo video to see what the damage is and if there is anything that could cause complications and talk to his team to make sure majority is on board he said he will get back to us by the end of the week.  In the meantime Hannah is doing well besides the fever that keeps coming and going and some withdrawal from being off the fentanyl which they give her morphine or Ativan to help with the withdrawal she's doing good no de-sats so thats good.  It was a ok monday tonight i realized i lost sight of what is really important to me, i need to stick close to god and let him lead my life and stop trying to lead my own life i'm only gonna lead myself into self destruction.  I want to learn to mediate when i feel like i wanna go to a peaceful place just close my eyes and mediate thats what i need *whooo sa* *peace* thats what i need.  Tonights post is sort and sweet  i will keep you guys posted about the surgeon and of course about my Hannah Banna. Goodnight.

Sunday, July 22, 2012


My sister Onica, all of you know bert & Ernie, her son and my nephew Daniel, and my daughter Kairi.

OMG this is us with Elmo i love elmo!!! thats my Kevin <3

Family On Sesame street.

The weekend is over *sigh* i cant complain it was good, friday i stayed overnight  with Hannah it was a typical baby night she woke up every 3 hrs when she wanted to be changed and repositioned, sleep wasn't to bad i got some sleep, surprisingly i missed the middle of the night wake up cries (i say that now right?) i would hear her little faint voice squealing for help lol thankfully i don't sleep hard so it's not hard to hear her when she cries since she had no voice. Saturday morning i woke up bright and early took a shower, did my morning worship and got ready for Sesame Place. We arrived it was warm outside but not warm enough for the water rides i knew that but still went on the rides, at one point the sun came out and it was beaming but that didn't last to long lol. My little leah had a ball she went on her first ride i was so worried she would cry or decide she wants to get off in the middle of the ride but let me tell  you my girl was wheeee-ing and ooooh-ing the only time she cried when it was time to get off the ride lol. The only one she wasn't liking to much but didn't hate was the ride where it shoots you up and drops you and then back up again every time it went up she said wheeee but the coming down part she wasn't feeling lol i wasn't feeling it either but i didn't want to look like a punk on a kiddies ride so sucked it up lol.
Leah's first real ride she's the third one to the^^ left (yes someone is in that seat lol

Today Kevin's aunt and cousin (Hannah's god father) Junior, his fiancee Natasha and kids came to visit Hannah its always good to see family, after talking to is aunt the family feels its important for me to get Hannah blessed in catholic and some other  religion its called Baptism until tonight i didn't think i would do it until maybe after the surgery but after speaking to his aunt i will get it done before the surgery its important to me too, so much has been going on with Hannah that sadly it slipped my mind so thats next to be done.  Speaking of surgery tomorrow we go to speak to a surgeon about Hannah surgery from what we know he is willing to do the surgery but wants to speak to us about the risk and blah blah blah ( i'm sorry its not blah blah blah and maybe if i didn't know what god promises i would be worried but since i do i'm not worried) To me all the doctors want to talk about are "the risk" i get they want to warn us but i'm only on positive i don't register negative talk i give it to god and let him deal with it.  This evening in the Picu i listened to a mom screaming and crying asking God not to take her child it broke my heart i looked at Hannah and for a second my flesh spoke and said soon one day that will be me, at that exact moment god spoke and put this scriptures i read everyday in my heart and reminded me of his word Psalms 91:7 "A thousand may fall at your side, and ten thousand at your right hand; But it shall not come near you".  I smiled i thanked god for his words and for who he is in me, theres more to that scripture but this is what he put in my heart. 

I look around and think about so much, today Usher's ex-wife took her  11 year old son off life support after he was pronounced brain dead about a week ago from a jet ski accident, i read the story and thanked god for my life, for my family, for Hannah.  I had months to prepare for the worst i knew all the possibilities, how can you have your child for 11 years and just like that there gone with no warning, i think that is the worst feeling ever... you could never see that coming.  Life could always be worse some one out there has it worse then what we think we(humans) are going through, thats what helps me get through my hard times. I pray for the family and ask God to heal there broken hearts.  2 months i thank god for these past two months and i know theres more to come. Tomorrow i will post how the appointment with the surgeon went. god bless to all who reads this and goodnight.

Thursday, July 19, 2012

2 months update

As usually i am behind on my blogging, Hannah turned 2 months on monday YAY!!! its such an amazing feeling to say she is 2 month old her dad and i went from counting seconds to minutes, then hours,days,weeks now i can say months my god is an amazing god even though there is still a lot of uncertainty i am sure Hannah will be fine and if not i am still thankful for the time he blessed us with her presence. Slowly her vent continues to get lowered and she's tolerating it well,  earlier today she was de-sating a lot but through our the day it got less and less.  Her fentanyl (sedation medication) continues to get lowered too, the doctors want her more awake so she can take more breathes, its been working she's breathing over the vent which is what they want to see and of course my favorite she's more alert looking around and smiling if you talk to her she turns to look at you with those big beautiful eyes (melts my heart every time). The past few days Kairi (my oldest) has been keeping me company at the hospital, yesterday she put Hannah to sleep singing to her she's a very good big sister i always knew she would be.

Kairi spending time with Hannah
Yesterday 7/18/2012 was an ok day, Hannah threw up a few times and kept gagging it made me nervous i was praying it wasn't the beginning of something new to deal with,  the nurse explained to me the gagging was due to them lowering her sedation medication now she's more alert and feels the tube irritating her throat causing her to gag but the vomiting she further explained could also be due to them lowering the fentanyl (sedation) which sometimes causes withdrawal  and makes people nauseous and throw up, she also could be throwing up because her stomach is either  too full with food or air from the vent so they put a tube in her nasal passage to remove any food or air in her stomach which seemed to help she hasn't thrown up since so thats good.

Hannah smiling for the camera she knew it was her last day on the vent
Today 7/19/2012 we got good news there gonna attempt to take the tube out, this morning they lowered her settings to the lowest support it gives she tolerated that perfectly yay!!! around noon they turned off the vent and gave cpap pressure to see how she would tolerate that again she took it well was breathing on her own at a good rate heart rate was perfect after about 30 minutes they put her back on the vent and said at 2pm they would again turn off the vent leave it off until 3pm if all her vital signs are stable (which they will be cause gods got this *winkzz*) they going to extubate her so i'm anxious and nervous i keep looking at the clock since they said 3pm and its only 2:20pm.  At 2:30 they started coming in to get everything ready the by-pap nasal set up, the intubation kit in case she didn't breath on her own (they wont be needing that) by 2:50pm she was extubated and breathing on her own with assistance of the by-pap.  I was praying the whole time glorifying  god for who he is and what he can do. Im so happy she is off the vent God is amazing and Hackensack is good . After a great afternoon i had to leave Hannah early today kevin had to go to class early he stayed home yesterday since i wanted to stay with Hannah last night, i didn't want to leave her i wanted to stay by her side :( but i had to go my other kiddies need me too.  When i left Hannah was sleeping peacefully.
a true fighter, Hannah off the vent and on a BY-PAP
Monday we have a meeting with a surgeon to see if he is willing to do the VSD repair for Hannah, honestly i'm not sure if i want it done right now i think she needs a break from the hospital, my goal is to get her back on a nasal cannula then home as long as the medication keeps working we keep watching and elevating her when we get to the point that medication isn't working anymore then we talk about surgery but lets see what this surgeon has to say talking doesn't hurt.  Thats the run down for the past few days gotta go call and check on my Hannah banna...

Sunday, July 15, 2012

Back at Hackensack...

Hannah is still on the vent, they have lowered her oxygen and slowly she's adjusting she does de-sat from time to time but always come back up.  Kevin and i said once she was weaned off the vent we would want her back at Hackensack since columbia isn't doing the surgery anymore it would be best to go back to Jersey back into our own home we just didn't know when that would be.  Yesterday i was texting Hannah's palliative/pain management doctor ( more like my doctor lol you guys heard me talk about her before) Dr. Beversdorf updated her on hannah and she asked "if the plan was just to wean Hannah off the vent, can we be transferred back to hackensack?" i told her i wasn't sure and i would find out from the doctors, Today the doctors came in, right away  i asked if we could be transferred back to hackensack and  have them continue her care he said yes he agreed and didn't see why there would be a problem just give him time to call speak to hackensack and see how fast he can get us back to hackensack.  This afternoon around 3pm the doctor came back in and told us everything was set hackensack had a bed and accepted her and we should be leaving in 2 hours i was like DAMN!!! (excuse my language) that was quick.

it is 9:05pm we are officially back at Hackensack University Hospital it feels good to be back i feel so much better, don't get me wrong Columbia is a good hospital they know there stuff BUT they are nothing like Hackensack they know us they know,our goals, communication is excellent and already they are getting stuff done and here is the bonus Hannah has not de-sated since we left columbia its funny (knocking on wood) don't wanna jinx it lol but 02 sat has been perfect and her vent has been lowered. Im going to take a wild guess and say the surgery wasn't meant to be and i am ok with that...for now. Hannah has been through enough, right now all i want is her home so the plan at Hackensack is to get her off the vent and get her home, getting her off the vent is gonna be tricky but im not worried my lord got this he will get her off the vent and home in one piece.

Hannah weighs 7lbs 7ozs

Hannah is gonna be 2 months tomorrow i cant believe its been 2 months already, where is the time going? glory be to the almighty Im so happy my baby girl is still with our family she is such a fighter even with the sedation when it wears off she starts going for the tube lol she is determined to get that tube out but not now lil Hannah in due time, i love holding her little hands, caressing her hair she is such an angel.  At times i'm not sure if i can handle the unknown or the whats to come i always have to remind myself that his eyes is on the sparrow and his hands is on my family we will be alright. Amen. Cant wait to go home tomorrow and sleep in my own bed until then i'm staying with Hannah make sure she has a goodnight and all is well. That is it for tonight i'm tired its been a long day.

Wednesday, July 11, 2012

A minor set back for the get back.

 Today was a day of disappointments, After being here for almost 3 weeks the surgeon decided not to do the surgery he feels neither surgeries will be beneficial for Hannah because of her blue spells, as of right now they are unsure as to why she de-sats to the 30's and jumps  back up within minutes sometimes seconds, one of the theories is she is holding her breathe but has not been confirmed.  If they do the VSD repair it can cause more complications, In some cases children with a VSD the blood shoots back and forth and exits through the hole releasing the pressure closing it can cause pulmonary hypertension the shooting blood now has no where to exit, the heart and lungs adapt to the shunting and the VSD in a weird way helps her.  My fiancee and i were very disappointed  i could see the tears forming in his eyes as the surgeon talked to us me i was speak less at first  slowly questions started coming to my end, we listened intensely asked our questions threw out different scenarios but in the end all the answers were the same no.... surgery.  We were told if we wanted to we could fish around for another surgeon who would not mind doing the surgery after saying that he reminded us of the pain,tubes and  possible tracheostomy that will and could occur from her doing the surgery and also the fact that a lot of surgeons don't entertain doing surgeries on babies with trisomy 18.  

It was strange as the surgeon was talking was just calm i wasn't angry i wasn't trying to rip his head off i was listening to every word that  came out of his mouth.  I remember this calmness i felt it towards the end of my pregnancy just this calm feeling i cant really explain it other then calmness, no worries and i remember wondering almost bothered as to why i was so peacefully with all the predictions and uncertainty about Hannah i was calm and at peace...peace that's the word, i felt that today, while he's telling us the one thing our daughters needs to at least bring her one step closer to being in our family for a long period of time he cant do it i was calm and at peace.....all i kept hearing in my spirit was its not over, its not over and i believe ITS NOT OVER!!!. God is in the midst of everything and obviously  surgery wasn't in the plan right now, so i'm going to patiently wait on the lord and see what he wants for Hannah.  Right now the plan is to get Hannah off the vent, off the sedation medication, and back on the by-pap then c-pap then back to her nasal cannula regulate her medication to control the fluid build up in the lungs to have her comfortable and get her home from there we will see what the doctors in Hackensack think we should do and go from there.

They are slowly weaning Hannah off all those sedation and paralyzing medication today she opened her eyes and were kicking  her little feet it felt so good to see her moving and looking around, its only been two days she was on these medications but it felt like forever, felt like i haven't seen those big bright eyes in so long  it melted my heart.  Also her culture came back negative no more infection YAY!!! my little mama is a fighter, forward progress thats all i can ask for.

Psalm 27:11-14
Teach me your way, O Lord, and lead me in a smooth path, because of my enemies.
Do not delivery me to the will of my adversaries; for false witness has risen against me,
and such as breathe out violence. I would have lost heart, unless i had believed that i would see the goodness of the Lord in the land of the living. Wait on the Lord, Be of good courage, And he shall strengthen your heart; wait, i say, on the lord.

Saturday, July 7, 2012

Journey part 1 day 10

Today was a quiet day since Hannah is sedated she sleeps most of the time, its not a heavy sedation she still moves her arms and legs and look around she's just sedated enough not to fight the vent (even though she still does) today they had to put in another central line in her neck its called a venus central line its in her Jugular vein this one is for medication, fluid, and whatever else they might need it for. (The one they did yesterday in the groin the Femoral central line is a arterial central line thats for a direct blood pressure,draw blood and blood gases) before they did the one in the neck they tried one more time to get a IV on her extremities no luck while looking for veins they noticed Hannah was pale and her blood count was low yesterday so the doctors decided to give her a blood transfusion which gave her back her rosy pink color. In my last post i forgot to mention she had a fever of 102.1 and it wasn't going lower then 100.0  she also had a lot of Mucus it is very thick, the nurse believe theres some infection going on in there even though they all came back negative they sent another culture today so we will see, the nurse said it might come back negative since they started her on antibiotics already which is fine with me and her fever is gone so pray with us that  monday they will give us a date for surgery.

My mother  always says "don't have confidence in flesh(humans) they will always disappoint you" i have been disappointed by a few people but the last disappointment i didn't take to well maybe because i didn't expect it from this person, i really respected this person and still do but i really did learn not to put humans on a god deserving pedestal and HE made realize that when everyone else turns there back on us HE's still there and i love God more for that reason he is the difference i've been looking for all my life, the lord also puts people into my family's life who can help us in areas we cant help our selfs in He knows my needs better then i do. Anyway i thank god for this person they have been a blessing to my life in so many other ways.  Im keeping this post short today since my last one was very very long lol but before i go i opened my bible and my eyes automatically locked on this scripture.

2 Samuel 21:47-51
"The Lord lives! blessed be the rock! Let God be Exalted,
The rock of my salvation! It is God who avenges me,and 
subdues the people under me; He delivers me from my enemies.
You also lift me up above those who rise against me; you delivered
me from the violent man.  Therefore i will give thanks to you, O Lord, 
Among the Gentiles, and sing praises to your name.  He is the tower of
salvation to his king, and shows mercy to his anointed, to David and his 
descendants forevermore."

4th of july and some

Hey all.  I pray all is well with everyone, since the last time i posted on here a lot has happen  some good and  some not entirely bad, lets start with 4th of july (heads up this is a long post you've been warned) 4th of july started of slow kevin and i stayed with Hannah the nurses came in trying to get a line on Hannah, the night before her  IV line got clogged so they had to take it out and the night nurse and phlebotomist were unable to get a line in since hannah is a hard stick well neither could they day staff they poked and poked and poked some more i was getting so irritated finally they gave up and decided to give her her medication orally after she was resting peacefully it was late afternoon so we decided to start heading down Kevin's mom friend was having a BBQ she always threw good parties so we wanted to attend,  a day to just relax and try to have a good time  and Phenine's place is the place to do that she's such a  pleasant person very free spirited, kind hearted, easy to get along with.  We had a great time kids were in the pool adults sitting around having a good time couldn't of been better....well maybe if i seen some fireworks other then that 4th of july was great.

Now lets fast forward, Thursday night we were Hannah would be having her VSD repair on saturday i was kind of surprise for some reason i didn't think they did surgery on the weekends, friday kevin and i got to the hospital around 3pm the doctor wanted to speak with us, she started off by saying the surgery for saturday was cancelled i wanted to scream, i wanted to tell them enough take all this equipment off my child and send her back to Hackensack University Hospital NOW!!! instead i asked why the doctor explained that Hannah's case is a difficult case and they wanted a full team on board so we would have to wait until monday i replied "yes like she was suppose to have surgery 2 thursdays ago,then sometime last week, or better yet saturday and now monday, i have a feeling this isn't going to happen monday or any day at that" she tried to explain her reason without explaining.  Kevin and i are so much alike as she's talking we both just were silent even after she finish speaking neither one of us said anything she waited for us to say something we said nothing we were so done with her she just walked out, i was so frustrated i called my palliative care crew/ my friends sue and Dr. Beversdorf i told them what was going and i wasn't sure we were making the best decisions for Hannah and i was tired of them sticking her with needles i felt they were stringing us along etc. Sue and Jamie suggested i called a meeting with the cardiac doctor and cardiac surgeon  to find what really is there plan and does it involve doing the surgery for Hannah they made some other suggestions but that was the most important one, i got off the phone feeling so much better i wiped my tears away and got on it, i told the nurse who i needed to speak too the same doctor kevin and i wasn't feeling came back we spoke to her i explained i didn't like fact that she gives broad answers and doesn't really explain whats going on she said her little piece and left, another lady from the surgeons team came in to speak to us she explained EVERYTHING finally someone with a vocabulary she explained that the OR have been having a lot of emergencies that ends up pushing Hannah back. ok i get that totally get it Hannah is not the only sick child in here there are children who are sicker then our baby i totally understand but someone needs to explain that to us not just tell us "o the surgery was cancelled, maybe tomorrow" like really? she also explained the only reason they scheduled her for saturday was because we were waiting so long, they don't usually do surgeries on saturday but wanted to get us in but after speaking to anesthesiologist they didnt feel it was safe to do the procedure without a full team being there like during the week again we get that but why not say that after speaking to her we felt better and thanked her she said she will tell us when her surgery will be done since she does scheduling of the surgeries she said if we don't hear it from her don't believe it.

Now that was done the same doctor we don't dig to much came back in and said they needed to put a central femoral line in Hannah because they couldn't get a vein and if god forbid she needed to emergency medication they had no iv line in her, she explained how the procedure would go and the risk of course which were minimal (look who's learning to communicate) the problem was they usually sedate babies before they do it but because of Hannah's condition they didn't want to sedate her without securing a open airway so she decided intubating was the best opinion the only problem with was hannah has a very small jaw and a short tongue, they also felt something was obstructing her airway cause she sometimes snorted. The doctors said they will try if it wasn't successful they would have to put in a tracheostomy (my worst nightmare in a way) i signed off on all the papers needed to be sign and just like that she was being prepped for the O.R that was easy wish it was that easy to get her in the operating room for the VSD repair.  That was the longest wait of my life i kept wondering is she gonna come back the way i sent her in there i prayed and for the first time ever i asked god for a miracle i didn't want her to get a trach so i started confessing my daughter will not need a trach she will be intubated and thats it we waited about 45mins maybe a little longer and she was back in her room......she was easily intubated no problem i exhaled and thanked god, the next thing was doing the femoral central line they let us see her for a brief minute then kicked us out her room they had to sterilize the room and equipment. Hannah was resting well she was sedated she looked so still kinda lifeless if it wasn't for chest rise i wouldn't of been to sure i didn't like looking at her like that so i didn't stay too long we went into the waiting room.  Putting in the central line took forever we fell asleep in the waiting room it wasn't until after one in the morning we went back into our room they said the doctor finished a little earlier then that but because "we looked so peaceful sleeping" they didn't disturb us... really???? so u left us siting up on the couch lol, it was ok i'm not complaining....too much. Thats it for the past few days now im gonna go do todays post *whew* i need to keep up with blogging lol

Psalms 37:3-8(NKJV)
Trust in the lord, and do good; dwell in the land, and feed on his faithfulness.
Delight yourself also in the lord, and he shall give you the desires of your heart.
Commit your way to the lord, trust also in him, and he shall bring it to pass.
He shall bring forth your righteousness as the light, and your justice as the noonday.
Rest in the Lord, and wait patiently for him; Do not fret because of him who prospers in his way
Because of the man who brings wicked schemes to pass. Cease from anger, and forsake wrath;
do not fret---it only causes harm.

Tuesday, July 3, 2012

Journey part 1 day 5

HI everyone, yesterday i came to the hospital with Hannah after i spent the past day in a half home with the girls, i  took the girls to Coney Island on sunday courtesy to my bff Shenna we had a great time kairi and her godmother(Shenna) mostly went on rides i went one with her but that wasn't a good experience for me it was the sky flyer i think i didn't like being that high off the ground like that lol,  Kairi kept saying imagine were at a picnic and i kept screaming i'm imagining i'm on the ground safely lol too funny.  Hannah has had a few ups and downs these past few days she has been back and forth  on a C-pap to a by-pap because she kept de-sating at very low numbers, the doctors were concerned with the de-sats they weren't sure if it was the VSD in the heart causing the de-sats or a lung issue causing it, If its a lung issue putting in the PA band can cause more harm then good and doing the VSD repair at her age with her diagnoses could be risky, but done.  The recovery process could be longer.

Yesterday ENT's (ear and throat) team came in they  used a camera like tube to look down her throat and nasal passage to see if there were any abnormalities or blockage interfering With her breathing, thank god there was nothing everything was normal and doing its job.  I was happy to hear that everything was normal. ENT did see some swelling behind the vocal cord which is caused by acid (not related to any of her symptoms) so they put her on Zantac for acid reflux besides that all is good on that part.  The Pulmonary Lung Specialist team came in to see Hannah they wanted to do a viral test on her it all came back negative (wasn't worried) the pulmonary team wanted to make sure leah's cold didn't get to Hannah.  The doctors order more labs which mean more needles my poor baby, i hate the fact that she has to go through this it literally hurts my heart but i know its for the better and one day soon Hannah will be home no doctors, no needles...just family. anyway they did a blood gas on her and again her Co2 was high extremely high  the reason as to why its high could be 1.she's holding her breathe 2. her brain is effecting her breathing the doctor have to figure out which it is.

Today Hannah is doing a lot better her de-sats have slowed down she resting more comfortably, the doctors came in and informed us that today we WILL have a definite answer on if and when surgery will be done and which surgery will be done thats bittersweet for kevin and i, he's worried about us picking the right surgery and how well is Hannah going to recover.  I know god is going to help us make the right choice for hannah with the doctors expertise and knowledge plus our faith i know i'm going to be at peace with my choice regardless of the outcome. Hannah will be back on her feeds today  YAY!!! of course there starting her slow but something is better then nothing i'm sure she will appreciate it.  We spoke to the doctors they decided the VSD repair was the best opinion for Hannah due to the drop in  her saturations if they did the PA band it could cause more de-sats which she doesn't need, there main concern is after the surgery she will be intubated and weaning her off the vent might be a issue but i'm not worried my lil Hannah is strong and i confess she will do fine during surgery and after surgery i confess she will wean off the vent come home and enjoy being with the family together. My heavenly father is in control he got this....

This is a picture of my sister Onica and nephew Daniel they stopped by to see Hannah yesterday, we love having company...Thank you guys for coming to see us.

Ephesians 6:10-13
10.Finally, my brethren, be strong in the lord and in the power of his might. 11. Put on the whole amor of god, that you may be able to stand against the wiles of the devil. 12. For we do not wrestle against flesh and blood, but against principalities, against
powers, against the rulers of the darkness of this age, against spiritual
hosts of wickedness in the heavenly places. 13. Therefore take up the whole
armor of god, that you may be able to withstand in the evil day, and having done all, to stand.