JUST ME AND MY THOUGHTS

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.

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...

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.

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.

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.

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.