Saturday, June 30, 2012
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.
Thursday, June 28, 2012
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.
For I, the Lord your God, will hold your right hand,
Wednesday, June 27, 2012
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 :-(.
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.
Tuesday, June 26, 2012
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.
Monday, June 25, 2012
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.
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.
Wednesday, June 20, 2012
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.....
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.
Monday, June 18, 2012
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 :-)
Saturday, June 16, 2012
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
Thursday, June 14, 2012
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
Tuesday, June 12, 2012
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.
Friday, June 8, 2012
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.
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.
Friday, June 1, 2012
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.
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.