Hi All,

I finally had a break to put some new pictures and videos of our angel Gabi. 


"That milk really filled me up"




Check out my cool new shades







Having a Bad Day




Im not camera shy.


What should I do today?



My first glimpse of NY.  HMMM  were to live.  NY or Philly?









That was a great bath.



Sorry for the quality, but just had to share it with you.

Hi everyone,
I will begin on a positive note, Gabi had a visit at CHOP on Monday for a follow-up with DR Hedrick(her surgeon) and to have a comprehensive hearing test.  She had failed her test while in the hospital so they advised us to have another one done since the test is very sensitive and could  have been inaccurate.  Happy to say she passed both hearing tests, comprehensive and inner ear.  This test had us worried but not because we were fearful of the results but because she had to be sleeping.  Gabriella does not sleep much during the day and the week prior she had been crying/screaming on and off throughout the day.  How in the world was she going to be quite and sleeping?  She however did great, Fil held her while the audiologist performed the hour long test and was able to keep her sleeping for the entire time. YAY for Daddy, the "baby whisperer" as Christina (audiologist)called him  She will only need to perform the test again at 8-10 months of age.    We got to see one of Gabi's favorite nurse from the NICU before we headed home.  She was such a good girl despite the long day!  Can we possibly love her more?

Now for the screaming section of this blog,  As I explained earlier Gabi had been screaming/crying the past week.  I am not sure what was going on.. I had thought it was reflux but she was not demonstrating the same symptoms as she had done before other then crying.   However her crying did not seem to follow a pattern.  She had a few good days but today it was right back to last week's episodes of "screaming by Gabi". I had called the doctor but SOL, they were done for the day, I will follow up tomorrow.  I am wondering if her Omeprazole(prilosec) needs to be adjusted.  It has not been changed since it was prescribed and she is over 11lbs now.  Maybe it is reflux and her reactions to it are different?  Does anyone know if this is possible?  I am at a loss here, hopefully her doctors could shed some light.  At the end of the day Gabi sleeps a couple of hours probably exhausted from crying half of the day.  Poor thing I wish I could help her.  Anyone if any mommies have advise about reflux  or screaming episodes please HELP ME!  Any advise will be greatly appreciated!  Well let me take a long awaited nap before I have to pump again.. the saga never ends! 
Thanks again for reading and keeping Gabi in your thoughts!  As always keep all CDH familes in your prayers!

Love&Peace,
Joanna

It has been a while since my last entry... the day just flies by and by the end f the night I am to tired to write anything up. 
Our Gabriella is doing well.. she is so responsive now.  She smiles and coos when we speak to her, she is just so adorable. 
She had her visit with Dr. Kint where she received her vaccines... no fun but who likes to get shots!  Dr. Kint is impressed with her progress.. She showed him how well her lungs work by screaming in the office. 

I often think about how lucky we are.. I thought Gabi would still be in the hospital suffering or worse.  It is amazing that we have her home and  are enjoying watch her grow and thrive. 
I need to say that I am so grateful for all those wonderful nurses, nurse practitioners, social workers and doctors at Children's Specialized Hospital of Philadelphia, what an amazing group of people they are.  From beginning to end we received the most unbelievable care!  They will be forever in our hearts!  THANKS SO VERY MUCH!

Yesterday CDH parents sent blue envelopes to The Ellen DeGeneres with a fact about CDH written on the back as well sent Oprah an email urging her to speak about CDH on her show.  The ides was to flood their mail with blue envelopes hoping to spark their attention! We really need to spread awareness about CDH so more research can be done.  Their are too many babies losing their lives to this monster.  No parent should have to go through this or make the hard decision to let their baby go.  I urge all my readers to educate someone about CDH and tell them to pass the word to someone else... These babies NEED OUR HELP!!!  I believe we can make a difference... I want to work to help raise awareness to this cause and I believe our little angel was sent to us for a reason!  I hope that I can make her proud!!!

Please keep all CDH families in your prayers!  Thanks for all the support.

Hello Everyone and I am truly sorry for the very very long wait for the new pictures.  It's just been very hectic and I just want to spend any free time (haha free time) with Gabi.


Here she is still with the feeding tube knocked out on mom's arm.




What a rough day!



NO MORE TUBE.  WOHO


Just relaxing on my swing.  Thanks Raquel, Nelson, Amanda and Julia




I love my Pacifier!




Laying in my bassinet looking at my toy.




Hanging out in my Activity play set.  Thanks Cinderella


Hanging in my room with Raquel and Amanda




Grandpa holding me on Father's day.  Notice the shirt "I love daddy"



Grandma playing with me.



Uncle Rui holding me.  Wow im so close to the ceiling.





Relaxing on cousin Marlene's arm.



That's my DAD.






Gabi cracking a smile




Uploading these pictures with dad has gotten me sooo tired.  I didnt forget pictures with Mommy and grandma Monteiro and other people but have to get those ready first.  They will soon follow along with other pictures of me growing up.  Daddy promised to upload picture more often.  Till Next Time.   Godd Night

Sorry for such a delay in updating Gabi's blog but it is hard to find time to pee let alone write a blog... LOL 
Anyway Gabi had her appt with Dr. Hedrick last week and she was happy with Gabi's progress.  she informed us to keep doing what we are doing and she is well on her way.  The most important thing is for Gabi to continue to gain weight... which she has.  Dr. Hedrick told us if we wanted to remove the feeding tube we may, so of course we did!  YAY... I hated that thing I think more than Gabi did.  She looks different without it but even more beautiful! 
She has been eating well up to 90 cc of breast milk, I do supplement formula when I have to but prefer not to. 
The later part of the week however was followed by an appt. to her pediatrician because she began having diarrhea.  Her doctor told me that she might have a dairy(cow's milk protein) allergy.  He did not seem to think that she had an acute problem.  He then told me to eliminate dairy from my diet and see what happens, so I did and I must say it is very difficult but a small price to pay for Gabi's well being.  That night I had to unfortuntally supplement formula because I did not produce enough for her and it seemed like the diarrhea continued.  I then brought her to the doctor again and he still believed it was an allergy so he gave me a different formula(nutramigen) to try.  I am happy to say that she is feeling better so it may indeed be an allergy. 
Gabi continues to gain weight  now 9.2lbs at her last visit at the doctor yesterday...she also received her 2nd Hep B shot, OUCH! 
Gabi has been so responsive when she is awake admiring her toys and smiling at them.  She now responds to voices and smiles at us which is truly priceless.  You could admire her all day.. she is so beautiful if say so myself.  Another amazing accomplishment was she was able to flip over from her stomach to her back... I did not believe it until she did it 3 times that day... it was very proud moment for me!   One worries when a child has been in the NICU and has CDH that they may develop developmental delays but so far so good.  Early intervention will follow up with her when she is about 4 months and evaluate her to make sure she is reaching her milestones! 
I will make sure to tell Fil to post pictures today... Thanks again for all the support and kind comments!  It means the world to us!!
Love&Peace,
Joanna

    
Gabi had her pediatrician appt today and he was happy with her progress.  She now weighs 8.8 pounds which was 8 ounces more than last week.  He listened to her and noted that her lungs are working great.  Our Gabi doe not cease to amaze us!

He also made a point to mention if Gabi has been around children and the importance of her not having small visitors(children) for a time being because she is susceptible to illness.  All babies are at risk but a common cold for Gabi can be more serious  because she is not playing with a full deck of cards(having a smaller lung).  So unfortunately I have to stick to my guns and not allow children to visit for now. He told us children can seem fine while visiting and the next day  be sick and by then your child has been exposed so why put your child at risk.  So I apologize in advice for being a drill sergeant but I have to do what is in the best interest for Gabriella.  We are making sacrifices too... not going to parties or visiting friends and family or shopping so I hope that you can understand that Gabi needs time.


I was happy when I left the office but the afternoon changed my mood.. Gabi began crying and fussing.  Of course this has happened before but now she would cry in the middle of her feeds which she has not done.  She would scrim and kick her legs with pain.. and we ended up tubing the rest.  During that time u could hear her tummy rumble and soon after we were changing her diaper.  She has some loose bowel movements which of course worries me because it could be related to a lot of things but most importantly dehydration.  I am praying that she gets past this. 
It was definitely a hard day for her.. she had only small bouts of sleep interrupted by painful grimaces and then crying.  It is so hard to see Gabi deal with gas and reflux pain..because there is nothing we can do to help her other than pat her back!  Do other CDH mothers have any advice???
Sorry for rambling but every time I think I could breathe easy something stops me...

Thanks for checking in on Gabriella and keeping her in your prayers!

Peace&Love
Joanna

I want to dedicate this blog to my wonderful husband Filipe, I will explain why later..

Let me start with my Gabriella first, this is her blog after all!  Gabi has had her good days and bad..  My first issue was that she did only had 2 bowel movements(pooped) in 72 hours which totally freaked me out.. at the hospital they counted all her movements and even mentioned them in rounds. I of course the paranoid person that I am called the nurse twice and she told me not to worry unless her bowels were hard and accompanied with vomiting and a hard belly.  Well in turn last night she had a major blowout in her diaper... she was basically giving me what I wanted LOL and telling me to chill.  It is so hard to relax even with normal baby things occurring because I always think it is something else. 
She is still eating well but it is not easy for her to eat.. she struggles to eat when her reflux kicks in and she justs starts crying and arching her back with pain.  It breaks our heart to see her that way. It is something she will have to deal with for a bit but eventually she will grow out of it.
I have to say that I never thought that someone could feel such love.. I mean Gabi was a surprise, a wonderful one but at first I was like OMG, am I ready to have a baby?  We enjoyed our life and did not have that "itch" for a child.  But once it established that we were having a baby we were happy with it.  Then the dreaded news about her condition hit and our world came tumbling down.  A few weeks ago I did want to have a baby and now I can not imagine losing her.
As I look at her I realize how blessed we are and can not imagine not having her in our lives.  I now understand what people meant when they told me there is no other love like it.
Now for Fil.. I want to tell everyone how lucky we are to have Fil in our lives.  I do not now what I would do without him!  He is not only an amazing father but the most thoughtful and selfless husband!  Our day is run around Gabi's schedule and I feel like all we do is change, feed, burp and put Gabi to sleep and I also pump.  Fil has been such a integral part of care, he feeds her while I pump and then holds her up to lessen the reflux side effects.  He never complains and you could see how much pride he has with her!  Also I have developed major low back pain last few days that actually spasms and stops me dead in my tracks.  Last night I was holding her and I literally could not move and Fil had to come and get her out my arms.  What would I have done if he was not around?  It scares me....
With some diliquent fathers out there that basically are a father by blood WE are so lucky that we have such a person taking care of us! He is my saving grace!
So Fil from the bottom of my heart... THANK YOU and we love u always!

Again thanks everyone for checking in on Gabi and for all the thoughts and prayers!  Also Gabi wants to thank you for the great gifts she has received!  I also want thank our wonderful family for their support!  Mom thanks for all your help I appreciate so much!

 

Love&Peace,

Joanna

Happy Birthday Gabriella!  I can not believe 4 weeks have gone by and we are all home in NJ!  It is truly a blessing to have Gabi home with us so soon. 
We arrived home on Monday night after a very stressful day..Gabi was crying most of the day because of reflux and gas pain, most CDH babies suffer from this.  I spoke to her surgeon and she decided to give her another med. to help relieve the pain.  This specific med had to be compounded so I had to wait two hours for it.  We also need to pack the car for our journey home.. after the lengthy process of Fil loading the car we attempted to be on our way.  But things are never that easy.. the battery died in our car!  Yes it sucks.. had to take Gabi back upstairs and wait for AAA.  So we finally arrived at 9:30pm from Philly!

It was good to be home but I must say I liked being close to CHOP because Gabi was safe there!  It has been a hard transition back, our house looks as if a tornado hit it.. we do not have much time to do it all.  Gabi has had some problems with her reflux and cried most of the days on/off...so it has been tough not to be able 2 help her.  I feel like I am always panicked... I hope that this will change and chill out a bit.  Thank God Fil is relaxed and calm or else we be in trouble.

Another than that Gabi has made great strides with her feeds, she is able to eat PO 75% of the time.. hopefully we can get rid of that NG tube soon.  Well that is all for now time for another feeding!

Thanks again all of you for thoughts and prayers, we never forget how lucky we are!  Also thanks for the phone calls, I am sorry that I do not return them sometimes, it is just I have brain farts throughout the day and I forget to call everyone back.  I do however appreciate your calls and I hope to speak to u soon!

I will have Fil post some pics soon!

Love&Peace,
Joanna

Thanks again everyone for all the wonderful support and prayers!  We are so grateful!

    Well every birthday week Gabi has had amazing accomplishments, she was held for the first time the first week and the following week she had her first bottle feed and there is no exception this week.  This is probably the most amazing of them all... any guesses?  Drum roll please.... Gabi was discharged from the hospital!!!!!
You read right, Gabi is home, the place where she belongs!  We are in our Philly apt but will be heading home on Monday!  This was such a gift for US!  It was all surreal removing her leads and knowing we will not hear all that beeping anymore.  I was so happy but at the same time I know she was safe at the hospital now I find myself staring at her and making sure she looks right!  I hope in time I become less nervous and paranoid.  How did others CDH mothers feel after their child came home from the hospital?
    
Gabi still continued to impress us at home.  She had three feeding so far and was able to take her full feed by bottle...unbelievable!  Hopefully we can ditch her NG tube soon!  She loves her milk and makes sure to advise us that feeding time is near!  She also loves looking around, now that their is more interesting things to look at other then white ceilings! 
It is so amazing to look at her and I realize how blessed we are!  We are so excited to go home and be close to our family and become our own FAMILY!!  Ginger(our boxer) loves looking at Gabi too, it's funny to see her stare at Gabi when she cries!  I can not wait to see what the future brings for our family.  Gabi is sleeping in her crib now and I want her to know how much we love her and appreciate having her in our life.  Goodnite sweet girl!

Thanks to all of you for reading and having Gabi in your thoughts!  Please remember other CDH babies in your prayers!

Love&Hope,
Joanna