day3....at columbia presbyterian hospital

Hola everyone..... Im a day behind so let me bring you guys up to date Since we've been here the doctors and surgeons were indecisive about doing the surgery on Hannah for  all good reasons as u guys kno, yesterday they decided to do the  PA band surgery next week we just don't know what day yet thats good news.  Hannah was crying a lot the past two days (not including today) just inconsolable no matter what we did she would cry i figured it was because of the missing corpus collosum in the brain the signals were getting mixed up so she didn't know what she wanted again my thought. Yesterday grandma (kevs mom) had a awake and funeral to attend so kev and i had to go be with the girls plus i missed them and they sure was missing me but Hannah was crying so much i didn't want to leave her like that and wondering if is she alone crying her little heart out because the nurses are busy with there other patients, i asked if she could get some type of medication that would calm her down they gave tylenol which worked for 20 mins then they gave some GI medication which did absolutely nothing i asked again if it was possible to get something stronger to calm her down unfortunately due to what happened to her a few weeks ago (when she stopped breathing) the doctors don't want to give medications that will depress the nervous system that could dangerous for her if the reason she stopped breathing has to with her brain so that option was out.

After a while of rocking and swaying her side to side she fell asleep so kevin and i flew out of there we spoke to the nurse she reassured us Hannah would be fine and they would do there best to keep her calm. The girls were so happy to see us and i was beyond happy to see them i missed them so much. I called the hospital to check on Hannah the nurse said hannah woke up a little while after i felt and of course was screaming down the floor the also said she kept arching her back (which she does a lot now that i think about it) and she was also de-sating because of all the crying, the nurse decided to call the doctors and have her put back on the c-pap, of course  i was saddened by that to me thats going backwards and i only wanted forward progress her being on the cpap also means no feeds only intravenous fluids, apparently after she was put on the cpap she instantly calmed down and slept the day away i got back after midnight and she still was knocked out.  Hannah was breathing fast and wasn't pulling in enough oxygen so she was irritated my poor baby :-(  i cant wait until this surgery is done then her breathing will be much better and thats one less thing we have to worry about.

Today Hannah is still calm and sleeping without any meds lol. Hannah is teaching me so much about myself i typed earlier in this post that "I didnt want her to go backwards that I only wanted forward progress" sometimes in life we have to go backwards to go forwards thats just what it is, most importantly it doesn't matter what "I want" Hannah is running the show and her body will tell us what she need and if going backwards is what she needs right now so be it. Patience is what my daughter was brought on this earth to teach me...patience.

Journey Part 1 Day 2

This morning they decided they wanted more echo pictures of Hannah's heart, in one of the echo pictures the doctors thought they saw a deformity on one side of the heart we did that they looked it over found out they were wrong everything was ok BUT the new echo picture showed a valve  looked smaller then it should and wanted more pictures to see if that is what they saw *sighs* we gave more pictures, now i must say by the third time Hannah was not having it so she gave them a hard time (served them right) in the end they got there pictures it was small but not as small as they thought before, the surgery was still on.  Time was going so slow just dragging.  At 4pm the surgeon finally comes in only to tell us they cancelled the surgery, the surgeon explained they needed more time to make a decision on whether surgery was the best option for Hannah with the small valve and her low o2 saturation without oxygen  and of course having Trisomy 18  he wasn't sure it was the best idea to do the surgery it might've caused more harm then good.

The PA(Pulmonary Artery) band squeezes the hole causing less blood to flow to the lungs which would get rid of all the high pressure in her lung that would  help slow down  her respirations right now she breathes anywhere from 50's to the 70's, also it will affect her o2 saturation this is where the concern comes in her o2 sat are already low now if they do the procedure it might lower it more that means Hannah would have to have more oxygen...that obviously isn't plan.  After listening to the doctors we agreed it would be best to look at every aspect before we jumped into the surgery (not like we really had a choice we cant force the surgeon to do the procedure) right now the plan is the NY cardiologist are gonna contact hannah's cardiologist in NJ and brainstorm to figure out whats really next,  in the meantime columbia are going  to switch around some medications and she how she does. Right now she's resting peacefully they gave her back her feeds so she's eating again, with everything else i'm leaving this in Gods hands Lord do what u see fit according to your plan. Amen. Lets see what tomorrow brings.

I miss my girls so much its driving me crazy being away from them.  At times i feel torn, when i'm spending time with the girls i'm thinking i should be with hannah and when i'm with Hannah i feeling i should be with the girls.  Leah could care less right now as long as she in good hands she's ok but Kairi is older, she wants to spend time with me and god knows i want to spend time with her its bad enough i only get her on the weekends, right now i have her for the first half of the summer i'm hoping we could do stuff together this summer i don't want it to be "i cant kai because i have to be with hannah" all the time shes heard that enough, i am only one person.  Tomorrow i'm gonna go spend the night with girls  maybe kevin will stay with Hannah and i can spend time with my girls. It is so hard but im asking god for all his strength. i know he will make it all right....

Isaiah 41:13
For I, the Lord your God, will hold your right hand,

Saying to you, Fear not, I will help you.

Amen.

Our Journey part 1

Its 1:20pm we are still waiting to be transported to Columbia, they said the ambulance should be here in a hour or so.  A lot of anxiety its a new hospital new doctors and nurses but i know we are in the best of hands (honestly i just don't like change lol).  Hannah is peacefully resting except this new feeding tube they inserting in her mouth keeps making her gag, its so much bigger then the one she had when we were on the 5th floor i keep asking them to change it but nothing comes up of it, today finally they were gonna change it today BUT they don't want to  change it then Columba doesn't use that kind of tubing and has takes it out to put in there own tubing *sigh* so she's stuck with that until we get to Columbia :-(.

The doctor just left so there was some confusing about the time we were suppose to arrive at columbia, columbia wants us to be there before 5pm so they can run all there test and have her ready for surgery tomorrow, there concerned that we wont be there in time to do so which means she wont be able to have the surgery tomorrow. The doctor here informed Columbia  that Hackensack university is not that far from the GWB so we can get there in no time, so hopefully the ambulance will put the metal to the pedal? or is it pedal to the metal? either way they need to hurry up lol. Lets see what happens.....


Its 6:38pm now the ambulance came around 2:30pm they were in and out, Hannah wasn't happy she cried the whole time it was de ja vu instead this time we were going to another hospital, we arrived safely as soon as we got into her room they started we went down for her echo and EKG Hannah was very cooperative i must say she slept through it all, they just finished take some blood for lab work now she sleeping peacefully. Tomorrow Hannah will be the second case to be done we don't have a time yet i will keep you guys posted on that.  Daddy and i are fasting for 2 weeks 1 meal after 5pm and i am starving OMG but i'm waiting until they finish all her test before i go eat we have one more to be done X-ray so i will keep on praying through my hunger until i eat :-(. they just called for transport to take us to Xray so hopefully they will be here soon if not  i'm eating this table and my laptop lol.....

Its 10:48pm Xray done mommy and daddy bellies are full Hannah is sleeping *sigh* a moment of peace... Goodnight everyone tomorrow is the big day.

NYC here we come...

So its official Hannah is coming to NYC, we are scheduled to leave tomorrow, she will be admitted to NY Presbyterian Children's Hospital in the city,  her surgery is scheduled for thursday *deep sigh* i'm ready for this we've been waiting for this and its going to happen.  Im only speaking positive into my daughters life i confess she will make it through surgery, i confess she will recover from surgery, i confess the procedure will make a positive difference in her life.  As much as i say i'm happy i moved out of NY i'm glad we are gonna be there for a while get to see my close friends, my family, my godson and i get to show Hannah my neck of the woods, but i hope we are not there too long lol i love NYC to visit for  a little while but not to live again.

Hannah is back on her 3hr feeds now she gets 60mls every 3 hours yay!!!! i know she's happy she was cranky without her feeds...she was still cranky today but not as cranky lol.  I have to give a big thank you to my girl Shenna (who's all my kids god mother) for sitting with me in the hospital for the past 4 days and not once complaining she's always been a great friend just took me a little longer to realize that but better late then never.  I have one more confession before i publish this, i was looking back at my  earlier blog post i often said "i hope" no more of that my faith is beyond "hope" i believe in someone higher then "hope" i believe in my Heavenly Father to do what he said he will do....Todays post is short i ask that all who reads this keep us in your prayers and i will keep you all posted on how tomorrow and thursday goes. God bless you all.

Confessing life

This is the day the Lord has made i will make the best of it, i will make best of all days the Lord gives me with Hannah. Hannah is doing very well she is  back on her nasal cannula and tolerating her feeds she isn't back to the 57ml every 3 hrs yet right now they have her on 19 ml an hour continuous so hopefully soon she will be back to her regular feed, she tends to be fussy on and off i think that has to do with her not getting her feeds every 3 hours like she's use too, other then that Hannah is doing great she's getting so big, i love her big bright eyes.   Sometime this week Hannah will be transferred to NY Presbyterian Hospital in NYC and prepped for surgery, I have mixed feeling on her going into surgery i'm happy there gonna fix the problem but i cant help wondering the "what ifs" i'm not gonna put them into words, i confess my daughter will do great in surgery i confess my daughter to live.

 My mom gave me a book its been so helpful to me its called "The power of your words" i've just started reading it and already its been helpful it speaks about confessing positive thinks into our life, reading the bible and confessing it to our life without doubt.  It helps with stress to (for me anyway) worrying causes so much stress but when i say i'm leaving it in gods hands whole heartedly i'm at so much peace and with this book i know it will get better.  With that i also decided to do a spiritual  fast while Hannah is in the hospital  for the next two weeks i will have one meal after 5pm after that only fruits and vegetables until Hannah is home, with this fast i'm looking for clarity, wisdom, answers how to deal with Hannah's diagnoses, and strength for my family.

GOD is the only way i'm getting through all this and so thankful for the blessing he gives me everyday, i know some of you reading this may say thats all i talk about is god..well you might as well stop reading now because my Lord is all i have to thank and all i have to offer , HE is the only one who can and will deliver my family from this and other families out there whatever people are going through, i will give him praises and bless his name everyday.

1 John 4:4
You are of god; little children, and have overcome them, because HE who is in you is greater than he who is in the world.

NOT ONE OF THE BEST DAYS....BUT IT WILL GET BETTER

It hurts my heart to day Hannah is back in the hospital, she suddenly stopped breathing yesterday morning, she is stable now back on a breathing machine called a BY-pap its a pressurized machine that pushes oxygen into the lungs.  The doctors are unsure as to why she stopped breathing but with her diagnoses it could be anything they did an x-ray that showed some stuff going on on the left side of her lungs it could be an pneumonia or some mucus build up there giving her antibiotics just in case, a lot of her blood labs were elevated and last night she spiked a fever of 102 this morning it was 101.1 so there giving her tylenol it broke her fever now she back to her normal temp.  There running cultures on her to make sure theres no infection other then that she's resting comfortably.  I am so happy to have my kevin because of him our little girl is still here he started CPR on her and kept her with us until the ambulance came i still cant believe that happened it all happened so fast i'm still shaken up, i'm just happy she's still with us.  I keep blaming myself thinking what could i have done differently but all the doctors keep saying there isn't much i could've done considering her diagnoses...but it doesn't make me feel any better.

Im here sitting with her thanking god for more time with hannah it wasn't her time yet she still has so much to teach me about life and i have so much to give her, so much kisses,hugs, love and i almost lost my time.  This is harder then i thought it would be the fact that i might lose my daughter breaks my heart only people who have gone through this can understand what i am feeling but i know god would not have given me this beautiful angel if he didn't think i could handle this so im going to do this with a smile on my face and heart everyday.  Because of Hannah i have met some incredible people, people who are now my friends/family they care for Hannah as if she were there own Doctor,nurses, and other staff when i have to go home to tend to leah i know Hannah's in good hands she's like a little celebrity here, different staff come in to check on Hannah some come to keep her company or to hold her lol its blessing to have so many people care about my lil Hannah.  Out of all the people here at hackensack university hospital there are two very special women here who have come into my family's life and done some things (positive of course) Sue and  Dr. Jamie Beversdorf they are god sent it went  from a  doctor patient relationship to now i call them our friends they have done there job and beyond  since we found out about Hannah's diagnoses, they have been with us helping with decision making, understanding the diagnoses etc. I asked GOD to put the right people in our life's those who will have our best interest at heart and he did exactly that with Sue and Jamie. GOD bless them both. Well im about to go home and cuddle up with my mini me (leah) dad has the night shift with Hannah tonight. Keep us in your prayers.....


PSALM 100
1.Make a joyful shout to the lord, all you lands!
2.Serve the Lord with gladness; Come before his presence with singing.
3.Know that the Lord,  He is God; It is He who has made us,and not we
ourselves; we are his people and the sheep of his pasture.
4.Enter into his gates with thanksgiving and into his courts with praise. be thankful
to him, and bless his name.
5. For the lord is good; his mercy is everlasting, and his truth endures to all generations.

Its official

It was such a great feeling to receive Hannahs social security card in the mail today and to look over at her sleeping so peacefully I smiled to myself and thanked god, also kevin went to get her birth certificate so now she is official I said that when both my girls received there socials and birth.certificates.  I must say New Jerseys birth certificates are so basic and bland then they have the nerve to make you pay for it, in NYC its free and looks a lot better *smh*.

Today was another quiet day hannah had her first visitor today a special mom I met when I first got my diagnoses her son passed away from trisomy 18,  she was a great coach for me when I was unsure of things very supportive whe slept leah ram sacked the house as usual typical day in the joseph residence lol. Hannah is becoming more alert she stays up a little longer I love kissing those big fluffy cheeks I swear sometimes I fights me with those little arms when im over doing it, its ok deep down I know she loves it lol.  Well both the girls are sleeping.....wait both the girls are sleeping...right now..together...peace? and quiet?...goodnight all im going for a nap too this doesnt happen often :-)

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1month old!!!!

I cant believe its been a month already, Hannah is a month old WOW that month went by so quick. Today was a quiet day hannah had her bathe and slept in most of the day.t  This past week with hannah home has had its ups and down (more ups then downs of course.) It feels so great to wake up to those big bright eyes,hold her and kiss those big fluffy cheeks to get this special time with her in our family, it hit me the first night we got home the.resposibility we have on our hands the nurses and doctors aren't a button call away anymore if anything happens its me and kevin we have to notice any change in so many different areas, have to always be on top of everything...it was overwhelming I started thinking was I in over my head? Can I really take care of a Special needs child and still function with our daily living? Yes we can and we will its gonna take getting use too and patience just one day at a time.

Happy one month hannah!!!!! We love you so much

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Hannahs first doctors appointment

Today was so exciting it was Hannahs first doctors appointment I was so excited it didnt matter that I didnt get much sleep cause hannah wanted to be up, daddy usual has nights which he does very well he was made to do night feeds and pampers but last night he had to call in the big dog (mommy) to get the job done , it didnt work hannah wasnt having it she was determined to stay awake. She finally fell into a deep sleep at 6am. Ugghs.
This morning went really smooth I was nervous about taking hannah out with her equipment also having leah who is sick it felt like a disaster waiting to happen but to my surprise it went great we loaded the kids and all equipment and we were on our way. Thankfully when we arrived at the doctor there was no wait WOW I was sold lol, Dr. Dos Santos is great she took her time got to know us and hannah it was a great appointment hannah gained an ounce she now weighs 6lbs 8oz, we talked about our goals for hannah what to look out for things like that.
Unfortunately leah had a fever that wasnt going down of 102 and a bad runny nose so she was also seen by the doctor my poor baby has an ear infection doctor prescribed her some meds and drilled into my head how important it is for leah to stay away from hannah while she is sick if hannah gets sick it can end up with her back in the hospital (this I already knew) but I listened because with hannahs diagnoses it is important to keep her from germs as it any baby but hannahs body cant fight it the way a normal baby can. After both there appointments we were on our way back home it felt good to be out all of us together cant wait to do it again hannah has weekly appointments so we will be doing it quite often god willing.
I only have one picture today :( enjoy none the less lol Well thats todays update.....im pooped gn all

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We are home!!!!

Hannah is officially home, it was a long day but finally we are home the process was literally all day, we had to wait for her equipment to be delivered she needed a pulse ox, oxygen and feeding pump plus the supplies to go with all that stuff. We also had to wait for her perscriptions to filled, the time moved so slowly everything took sooooo long, then the ambulance service kept pushing back the time to pick us up finally at 10:30pm they showed up *sighs* Hannah was not feeling the clothes the car seat restriction she cryed the whole ride poor baby, we got home relaxed for like 30mins then it was time to prepare her feed.  It was a little hectic at first leah who is 1 yrs old and its all about her she wanted all my attention and no one else will do lol  once she finally went off to sleep it was back to hannah got her settled in to her home.

I want to dedicate this blog post to all the T-18 babies who are now angels I personally dedicate this post to Isabella,Raymond and Otis Maxwell  though your journeys were short the memories you leave with ur family will last forever I didnt know you personally but.through your parents story I feel like I know you continuing watching over your parents they love you so much.

Thank you all for your prayers I will do my best to update my blog daily.

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3 weeks & 2 days old

Ive been so busy hugging and kissing hannah I keep forgetting to update my blog, Hannah is 3 weeks old!!! It feels so amazing to say that.   Hannah is doing extremely well her blood work always come back good, the doctors lowered her lasix to once a day shes gaining weight she now weighs 6lbs 10.3oz, shes very alert aka nosy lol.

We found out yesterday that *wait for it* ........Hannah will be coming home on monday yay!!!!! I am too excited I cant believe shes coming home its such a blessing.  monday night around this time we will  be home relaxing all together, I couldnt imagine this day im so happy and grateful that god is giving me this time with such a precious gift like hannah. This weekend is all about getting ready for my lil hannah i just got all giggly writing that *sighs* god is good scratch that.... chicken is good  GOD IS AMAZING.... HE is worthy of all praises what a wonderful god I serve.

Psalms 100

Make a joyful shout to the lord,all you lands! 2 Serve the lord with gladness; Come before his presence with singing. 3 Know that the lord, he is god; It is He who has made us, and not we ourselves; We are his people and the sheep of his pasture. 4 Enter into his gates with thanksgiving, and into his courts with praise. Be thankful to him, and bless his name. 5 For the Lord is good; His mercy is everlasting, And His truth endures to all generations.

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Moving on up!!

I am so happy to report that Hannah is no longer in the NICU shes now in her own room on the pediatric floor yay!!!!, there main focus right now is plumping her up for surgery get her nice and juicy other then that hannah is doing good.  Right now were unsure of when she will have the corrective surgery for her heart  the doctors want to try medications  before they rush her off into surgery too soon, right now shes on lasix which makes her urine out the extra fluid whichs stops fluid build up in her lungs so far its working, until things change in her condition they will hold off on surgery.

I cant believe its been two weeks already...well 2 weeks and 2 days to be exact :-) its a wonderful feeling to have this little miracle laying on my chest sleeping so peacefully, I enjoy these times so much.... at any time and point it could change and just be a memory I appreciate every day I get with my little angel she has blessed my life so much.  Im still trying to balance everything I have my oldest in nyc plus my 1year old who needs attention im not sure how to divide myself, I hate leaving hannah overnight I slept over lastnight didnt sleep much no surprise there but at least I was with her, thankfully god has blessed me with such great people in my life and those new to my life. 

Kevin and I met  2 wonderful women at the hospital there both apart of hannahs care but they have helped us in so many other ways one of the women volunteered to pay for my 1 year old to go to the hospital daycare so kevin and I can spend time together with hannah I was  speechless, beyond thankful it helps us so much, my 8 year old its alittle harder since she only comes up on the weekends im going to work it out one way or another.

Proverbs 3:5-6

5 Trust in the lord with all your heart,and do not lean on your own understanding. 6 In all your ways acknowledge him, and he will make straight your path.

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