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
6-9-2009 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
6-6-2009 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
5-30-2009 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
5-27-2009 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
5-23-2009
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.
Gabi has her first bottle experience today 5/24 but falls asleep within 10 minutes, but still a great day.
Mommy holding her close to her heart. Gabi's thinking "I'm hungry"
Me just hanging with my girl. Gabi thinking "I have a great dad".
She is stretching and sporting another new outfit.
Gabi being green and sporty a new outfit.
We taught her how to hold the pacifier. WOHO Plus no big TUBE! YES
5-21-2009 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
5-19-2009 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
5-14-2009 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.
5-12-2009 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
