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
Saturday, April 3, 2010
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7 comments:
Dear Joanna & Fil, What a "Beautiful" baby girl you have. I can't believe the video Ashley showed me of Gabi - we can't take our eyes off of her. Please know you are in our thoughts and prayers, and coming from a mother that had a 1 lb. 13 oz. baby girl who stayed in the hospital for three months I have an idea of what you are going through. It is truly a roller coaster ride - every day you wake up with a knot in your stomach not knowing what to expect. Your emotions are constantly up and down. Joanna there is a light at the end of the tunnel, believe me! Our little girls (mine is not little any more) are definitely fighters. Ashley had a blood infection, needed blood twice, had a spinal tap, intervenous in her head, constant heel sticks, intubated and she was the size of a ruler. I remember feeling so detached from her because I couldn't hold her in the beginning and when I did it was only for a very short period. Somehow, we as parents get through this rough time because our love for our babies is soooo strong. Ashley was born in March and came home in June of 1990, she was hospitalized three times before she was a year old. Believe it or not, once was for dehydration from measles. You know, Joanna, what kept me going was knowing and meeting other families that were going through the same thing. You are never alone (sometimes we feel we are) but we truly bond with other families through these crises. Well, I just wanted you to know that I think of you and baby Gabi constantly because it brings back so many memories of Ashley. Joanna you see how Ashley turned out - my little preemie blossomed into a lovely young lady just as your Gabi will. Hang in there and take each day as a blessing, whether good or bad, because Gabi hears your voices and feels the love from you and Fil which gives her strength. Give her a kiss from us and know that you are in our hearts. Love, Kathy & Ashley 5-26-2009
Joanna, Phil and Gabi:
Wonderful news...Gabi is on her way....I know in my heart that she is going to get stronger and stronger as the days go by....you must have faith....God is good and he will watch over her.
Joanna, it's ok to cry....I do it all the time! It makes you stronger and ready for the next challenge. You are all in our prayers and look forward to your coming home and meeting Gabi. If you need anything, please reach out.......
love,
Vasco, Rose, David & Anthony 5-23-2009
It sounds like Gabi is doing so well for all she's been through, thank God! Hang in there, guys, and know that you have us praying for you and thinking of you.... Jeff 5-23-2009
Hang in there,Gabi!!You rock and you are so lucky to have such great parents<3 Can't wait to dress you up! Elvi 5-22-2009
Thinking of precious Gabi. She is in my prayers...I hope she is having a better day. Breathing is a tough task for our little ones and she is doing great!!
Tracy - Ian's mom 5-22-2009
You guys have come so far (amazing), it is okay to release with a good cry. Gabi has and will continue to keep you strong. Our children make us realize that nothing is invincible. Take it from my son Ben who believes he can be "the Hulk" if he just keeps eating.
Gabi is a fighter and she gets it from you and Fil. She has shown her determination. We continue to pray and send all the positive vibes your way.
Love,
Sue 5-22-2009
Hi Phil and Joanna,
May God continue to bless Gabi and provide you guys with continued strenth and courage. I will keep your little one in my prayers and please know that God will see you through this. Being a father of three myself I can only imagine what you are going through. You spoke of another little baby whose going through this as well, I hope everything is O.K. with her. Please let me know what I can do to help in terms of donations.
"Weeping may endure for a night for JOY cometh in the morning."
Rohan and Family 5-22-2009
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