Hello everyone, again sorry for the delay in posting...  I always like to begin by thanking everyone for their thoughts and prayers!  The amazing support we have received will never be forgotten!  Gabi is so lucky to have all of you in her life!  On a side note Kathy thanks for sharing Ashley's story with me, it brought tears to my eyes, Ash is one special girl with a wonderful family!

As all of you can see from the last pics posted our little girl has no nasal cannula... she no longer needs it!  She is breathing on her own!  She breathes faster than a normal infant but it is expected since she is working with a smaller lung!  But her lung will continue to grow until about the age of eight.  

Gabi has also began eating PO(orally) with a bottle and I have also tried breastfeeding!  She is up to 70ml of breast milk every 3 hours.. Today she set a record of taking 61ML by mouth(bottle fed) WOW !  Daddy got the credit of feeding her that!  The rest of the feed is given through her feeding tube!  If she is unable to take full feeds orally she will go home with a feeding tube.  We were taught how to place the tube through her nose which then descends through esophagus and finally end in her stomach!  Fil took the test today and passed.. he soo good.  I will have to go next which freaks me out because Gabi gets so upset but I have to realize that she gets over it quickly! 
Her most difficult moments are when her reflux sets in.. she cries so much and u could see that she is in pain and there is not much to do expect keep her upright and pat her back roughly.  It is so hard to see her suffer but this too will pass.  Reflux is something she will grow out as her esophagus grows longer. 

Well the time we have been waiting for might be here soon... Gabi's only obstacle is gaining weight, she can not be discharged until there consistency in her weight gain.  It is difficult for CDH babies to gain weight, since it takes more effort for them to eat they burn calories faster.  Gabi gained 10 grams today so hopefully she is on an upward trend!  She amazes us everyday, she continues to make strides even with all her challenges!  She teaches us so much and makes us realize how fortunate we are!

Please continue to pray that she gains weight so she can go home!  Many thanks to all of you!

Hope&Love,
Joanna

Sorry everyone for not posting new pictures sooner, just by the time we get home, we really just want to sleep and do nothing else.



We taught her how to hold the pacifier.  WOHO  Plus no big TUBE! YES



Gabi being green and sporty a new outfit.




She is stretching and sporting another new outfit.



Me just hanging with my girl.  Gabi thinking "I have a great dad".



Mommy holding her close to her heart.  Gabi's thinking "I'm hungry"



Gabi has her first bottle experience today 5/24 but falls asleep within 10 minutes, but still a great day.

Gabi learned quick how to hold her pacifier






Gabi has her first ever bottle feeding. What a moment.

As always I want to start by thanking everyone for all your thoughts and prayers... I appreciate all the wonderful comments and so does Gabi!

Yesterday was a tough day for Gabi... since discharging her morphine Gabi was been going through withdrawal.  She was so crying  and sweating so much yesterday morning and nothing we did calmed her down.  Her nurse informed us that it is like addict off heroin... it is a hard comparsion but true.  I must say it was so difficult seeing her struggle and not being able to help her.  She was given a rescue and it sedated her heavily.  She slept most of the day only fussing when we did her care.   We still enjoyed holding and looking at her.  She is truly priceless and we never get tired of admiring our brave girl!

In the evening she began struggling with her breathing, she was breathing quicker and shorter.  She also sounded as if she has some nose congestion as well.  It was hard to watch and broke our hearts to leave her that night.  I am such a nervous wreck and always think that the other shoe is going to drop soon. 
When we arrived in the morning she was still breathing heavy and fast but now accompanied by head bopping and nare flaring.  I lost it and cried, it broke my heart to see her like that.  At rounds they decided to place her on lasik to help clear out some of the fluid in her lungs.  I spoke to the NP(nurse pract) and she advised me not to worry for it is normal for CDH babies to breath that way and that she is doing well.  Gabi is just telling them to slow the hell down... she just had surgery and is trying to catch up with all the changes.  I know in my head she is progressing well but my heart does not want to listen. 

On a good note Gabi's PIC line was removed.... YAY!  She no longer needs any other form of meds or nutrients because she up to 60ML of brestmilk which is the limit required.  WOW she well on her way!  Also I can now dress her in her own clothes!!!!!  No more BLUE hospital jammies.  Girly outfits here we come!!!

Getting very tired so I must go to bed, but before I do please remember to keep Gabi's CDH buddy Ruby in your prayers, she is to be extubated tomorrow!  Also keep all CDH babies in your prayers, they need it! 
One more thing I promise, check out Jaxson's Jog (google it).. he is a CDH survivor and his mom Sarah is sponsoring this run in order to raise money for CDH families in need at hospitals.  If anyone could help with donations with be wonderful!  Thanks everyone!

Peace&hope,
Joanna

I would like to apologize for taking so long to post but I have to say it is hard to find time to write any updates... but without further delay here it goes...

Gabriella's was excubated(her vent was removed).   I can not believe all this was happening 3 days post op... Happy 1 week Birthday to you Gabi!!!!   What a amazing gift for her since she was really annoyed with having that tube in her mouth.  Our little girl was then placed on a nasal cannula at 2liters and 25% O2.  She also started feeds through a NG tube (tube nose-stomach), all this in one day!
The next day they discharged one of the sedatives, leaving her only Morphine and began OG feeds(mouth-stomach).

Today Gabi is up to 1 ounce of breast milk every 3 hours increasing it 5ml every 12hours, which she is digesting well without any problems.  She is also off the morphine.... OMG  I almost can not believe it this all happening!  She was a bit angry today being very fussy with diaper changes and changing positions.  They needed to give her a rescue to calm her down.  She has been through a lot so I don't expect her to be perfect...."She can cry if she wants to" ...

Gabi is making unbelievable strides, I cant not believe how lucky we are!  She is truly a blessing and we are grateful for every moment we have with her!    I sometimes think I am dreaming, I had prepared myself for the worst and wondered how I was going to get through this and I now I find it hard to relax and enjoy it!  I have to tell myself that Gabi IS coming home!
Like Kanye West says "It's amazing, so amazing, so amazing"  but SHE is amazing!

Once again we like to thank all of you for the wonderful thoughts and prayers.. we are blessed to have so many people pulling for our little miracle Gabriella!
I will try to keep the updates coming!
Love and Hope,
Joanna&Fil

Here are a couple of new pictures of Gabriella.

 
She is just laying back feet up and doing the thinking look.

 

She is getting her first taste of milk.



I got to hold her up one of the only times she has been lifted from her bed.  WOHO



My 2 beautiful girls sharing a moment.




The first time she has her eyes wide open for us, what a feeling.




Not only is the Dr. Hedrick a amazing surgeon she is also crafty.




GOODNIGHT and till Next time.

As always I would like to begin by saying how grateful I am to all of the positive thoughts and prayers Gabi has received, I know this has made a difference in her life.  Also I want everyone to know what a wonderful and supportive family we have, they all have been so amazing!  We thank you so much!

I have returned to writing the blog and so my hubby can have a break!   We had a nice day today with our little Gabi!  We stayed at the hospital last night in one of the sleeper rooms.  CHOP allows parents to stay there as needed but prioritize those who have very sick babies and post-ops. 
In the mornings Gabi's nurses are most busy checking all the meds, lines etc.. we were able to help with some duties today.  We changed her diaper, help position her and swab her with some of my milk.  It was amazing to know we took part in helping with her well-being since sometimes we feel helpless.  We loved seeing her with her eyes wide open looking around and listening to our voices!

Gabi's nurse informed us she pooped twice through the night which is GREAT, usually this takes longer to occur so it was a good sign. 
During rounds the neonatal team come to her bedside and discuss Gabi.  They decided to wean her O2 again, remove her catheter and hold off placing her under light for her jaundice.  All sounds good to me!!!  She did great with the changes... she was able to pee on her own, YAY!! 

Gabi continues to show us how strong she is... she still has a tough road ahead but slow and steady always wins the race!!!

We left for the night to our apartment which was a lot harder to do than I thought!  Some time after we arrived and had a HOME COOKED DINNER... YUM  I thought about Gabi and how much I missed her and I wanted her here with me.  Fil looked at me and I realized he was thinking the same way!

I am so afraid of what the future brings, Gabi was blessed and has many guardian angels watching over her!  However it is difficult for me feel relief even with all the good news.  When are a parent of a CDH child you know how things can change so quickly.  So I ask for everyone to continue with prayers and positive vibes.  Please keep all CDH children and their families in mind and especially Gabi's little friend Ruby!

WE LOVE YOU, OUR LITTLE ROCKSTAR!

Hope&Love,
Joanna

Hi All,

Today 5/13 was a very long and strenuous day, but at the end it was well worth the wait.  First Gabriella had a very easy night (so dad was able to sleep good in the lounge chair next to her).  In the morning she had her worst levels of Blood Gases ever since she has been perfect from the start, I sensed the nurses and doctors were a little worried.  One of the nurses decided to suction her mouth and throat since she felt she might have had some discomfort there.  Of course she was right, she took so much mucus from her throat that it was amazing that she didn't have other bad stats. 

So then we we informed that the surgery would start around 2:30 and to wait in the waiting room.  The operation would be performed in her NICU room so she is not moved..  The waiting  started, around 4:30 one of the nurses came out and told us that they were only about to start at that time since the doctor was running late ( she had 3 other surgeries that day).   Finally around 6:45 the doctor came to the waiting room and gave us amazing news.  Not only did Gabi do extremely well during the surgery, but they didn't need to use a gortex patch to cover the hole.  They were able to use muscle tissue to close the hole, that was great news since it avoids issues that might arise with the patch.  The other news was that Gabi indeed had a Diaphragm Pocket that prevented the Liver to move up any further then it did, this was awesome news and the main reason that Gabi was having surgery within 4 days.  We are so proud of our little "Rock Star".   So now the next 24 hours are very important to make sure that she was able to handle the surgery and thrive past this gigantic step.  There is still a long journey ahead for Gabi, but to come this far in 4 days with the diagnosis that we received in the beginning, is truly amazing.  Please keep Gabi in your prayers because there are sure to be some bumps in the road that she will need to get over.  Also keep her NICU friend Ruby in your prayers as well who is also recovering well from CDH surgery.

Time to get some well needed rest.  More updates hopefully from Joanna to follow, since my writings skills are not as good as hers.
Thank you,
Filipe

Hi Everyone,  I was finally able to upload some pictures of our beautiful Gabriella.

Thank you all for the much needed support that everyone has been given us.  We are sorry that we have not updated the blog as often as we wanted, but it has been a hectic several days.  Joanna is recovering well from her surgery, she has had headaches off and on but she has been amazing. 

The last 2 days have been good days for Gabriella, she is such fighter, the doctors have called her "A Rock Star".  She had a pick line put in yesterday and she handled it without issues.  As of right now we have the surgery set for today 5/13 at 2:15, which is a amazing feat itself that she has coming this far as quick as she has.  Please pray that she stays strong like she has been during and after the surgery.  We will put up a update as soon as we can.  When we get back to our apartment sometime end the end of this week we should be able to upload the pictures.  We just have issue download the pictures from CHOP network.

Thank you again for all your support,
Filipe

I am sorry about the delay in posting... but it was a rough couple of days before our precious girl arrived...  I had to have a emergency c-section with local anesthesia.  I wished I did not have to because I wanted to hear and see Gabi but that is what had to be done to get her out safely, so we deal with it!

But lets get on with the most important news... Gabriella arrived on Sat. May 9th at 5:12 am, she was 7.4 pounds!  I first saw her in the late morning and it was the greatest feeling u could imagine,,, I have to say I never thought u could feel like this!  I was lucky to have Fil be with her and update me with all the information prior to seeing her!  She did very well, they placed her on a conventional vent and sedated her with low doses of morphine because so she can stay very calm.  She was handling very well and they were even lowering her oxygen slowly every couple of hours, all her blood gases were normal  which impressed all the neonatal team.
    We were so happy with the news but with all CDH babies this is called the "honeymoon period" so things can change quickly... that night to be how quickly things happen!  Her heart rate jumped to over 200 bpm and her blood pressure lowered.. they quickly gave her a increase of dopamine and "rescue" injections to help with her stats...  this helped but it was not perfect.  This AM at rounds they decided to change her meds to help change the stats.. They decided to give her a steroid and slowly wean her off the dopamine and they also gave her a "baby foam bed" which she seem to love..  her stats changed remarkable.  YAY!!! They have dwindled her down to 30% O2 which initially was at 85% .  our little fighter is making strides!  We are happy and enjoying every moment that we have..  Please continue with all the positive thoughts and prayers!  We are so grateful to everyone for thinking of our girl!  We will update further and hopefully have some pics to show off by tomm.


Love&Hope,
Joanna&Fil