Hi All,I finally had a break to put some new pictures of our angel Gabi.
"That milk really filled me up"
Check out my cool new shades
8-30-2009
It has been a long time since I have written a update... so i apologize! I can not believe the summer is coming to an end! I feel as if this summer was a blur, taking care of Gabi and just spending time with her. We really did not go out as much just because I want to be cautious with Gabi. Now the Fall is around the corner and I am going to act like a neurotic mom! With the rise of the swine and seasonal flu I am really going to be tough with visitors, and children are going to have to keep their distance especially if they are in school. When coming for a visit please wash your hands and then use sanitizer first thing before saying hello to Gabi! I really should not have to ask you to do it. Our families and friends are going to have to understand that this is what is best for Gabriella and if they do not then oh well! I know this might sound harsh but I would do the same for others! Gabi is due for her 4month check up/vaccines, I am going to speak to the doctor on what vaccines he recommends for us. I am going back to work very soon and since I work with people I have to be extra careful. Anyway enough ranting...Our sweet Gabi has been doing well.. she has her moments but what baby doesn't. She will be having an early intervention evaluation in the upcoming week by a PT and or OT. Developmentally I believe she is doing well but there are some things she has trouble with, mostly fine motor skills and lying prone. We will see what the therapist say and what suggestions they offer. We are so blessed... When I think about what could have been I cry. I find myself thinking about our time in Philly. Days that I was in our apartment while Fil as working thinking about Gabriella's arrival. I was so terrified we were going to lose her and now here she is defying all odds! I am grateful everyday to God that our angel is here on Earth.The day is beautiful here and Gabi loves being outside so time for a walk!I want to ask everyone to keep Ireland and MJ's family in your prayers for they have earned their angel wings. Continue to pray for the many babies fighting to live!Peace&Love,Joanna
7-29-2009 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
7-16-2009 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!
6-25-2009 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
6-11-2009 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&LoveJoanna
