Wednesday, April 23, 2008
Chylothorax
It looks like Miss Gracie wants to do everything the hard way and to give her mom every learning opportunity possible in this hospital stay. This morning the doctors had to put a chest tube into her left side to drain the fluid in her pleural space. They ran some tests on it and it tested positive for Chylothorax. This is when the lymph nodes that run right next to the heart have been damaged and leak the fat from breast milk and any regular type of formula out into the body. They now have to put her on a fat free formula for the next six weeks and possibly longer. So now that I have pumped over 170 times, I get to decide if I want to continue to pump milk for a baby who may never get it. I am going to speak with the dietitian later this afternoon. Good times.
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25 comments:
I know you don't know me, but I am a friend of a friend. Our son was in the NICU when he was born and I pumped for him too, so I totally know what it is like to pump, I did it for nine months. Do what you are comfortable with.You are such a wonderful mother. You and your family are such great examples of faith and love. We are praying for your sweet Gracie and for you. I had some great spiritual experiences in the NICU. The Lord is mindful of you and your family. Thank you for sharing Gracie with us all! I hope you don't mind that I check your blog!
We are all too familiar with chylo. That is what kept Andrew in the hospital for so long. Dr. Cowley, cardio, said Andrew was the longest case they had of chylothorax. It even took two additional surgeries to stop it. Please feel free to read all about it on our blog. I hope the Portagen is all Gracie needs. Just a thought, if she is still getting lipids through IV, they can spin your breast milk to make it fat free and that way it won't all go to waste. Good luck with all. Jan Holding, the dietician, was really great.
Andrea Mathis
andrewmathis.blogspot.com
Ahhh yes, good times. I think we all say "good times" when there just isn't anything else to say. Gracie sure has taught us not to take anything for granted. It seems like a lot of the babies lately go on that fat free formula. It seems pretty routine. Hey, not having to pump might be a nice thing! Keep Fighting GG!
I know how frustrating that is, and I am sorry Gracie has the Chylo. It is especially frustrating for us Moms, but know you have given her the best start. Hopefully the Chylo will heal quickly and she can continue to get the best that you have done for her!
Stick in there! That is frustrating. I had a whole freezer full of breast milk that I just threw out due to a "special formula" need.
I have decided that your little Gracie is the ultimate overachiever!! "Normal" just wouldn't be enough for her - she needs "EXTRAORDINARY". The strength she has is amazing, and I bet you are realizing strength you never knew you had. As always our prayers and thoughts are with you. Love - Amy
Wow i can't believe everything you and your family has gone through. I was amazed to find out through all of this that you were still pumping your milk. You are an inspiration to me. Especially since I am pregnant with my first child, my emotions are running so high. Good luck on your decision! Keep fighting Gracie. I can't wait to meet you.
at least we are further than we were four weeks ago. I will pray that Gracie will someday be able to have regular formula! Good luck!
Much Love and Many Prayers~
Allysa
Oh Man, Chylo is nasty... I hated the smell of portagen... You will know what is best for her... If you do decided to stop pumping... Try the green cabbage method... It makes the Dry-up part soooo much easier... Good luck... She is beautiful...
Oh Michele! Good luck to you, stay strong. Gracie is one of the spunkiest people I've heard of!
Lots of love,
Winnie
Oh Michele, I know this pain. You have committed so much time, energy and love into providing your milk for Gracie. Focus on what is the best for her...she is your priority. Your love and bond with her is different from your other children. I found this particularly difficult since I nursed my son for over a year but never got a chance to with Annabelle. Gracie will have a very special bond with you in different ways- ways that are perfect for her and your precious relationship. I am praying that whatever decision you make you will find peace and know that your little babydoll will be better by simply having you as her mother. Many blessings~ Rebecca
I am so sorry - I'm sure it feels like one hurdle after another. Your family remains in our prayers.
~ Shay
Michele,
We just learned our baby has HLHS. I am 21 weeks pregnant and just gearing up for the adventure you're experiencing now. I find you and Gracie simply inspiring. Thank you for sharing your story. You could not possibly know how I am praying for you--or maybe you do. I so appreciate understanding HLHS from your perspective. I am already sick of hearing different clinical descriptions. You tell it like it is and I take great comfort in that. Stay strong. The quote that is getting me through the initial shock of our diagnosis is this: "Life is not about waiting for the storm to pass; it's about learning to dance in the rain" I hope somehow it can help you today. Thank you. Thank you. Thank you.
Michelle - I'm sure that must just be so frustrating! I hope that after her six weeks she's able to handle breast milk and your pumping hasn't all been for naught! I think she's just trying to do everything with style. Hopefully she will realize, like so many of us, that fat free diets are no fun and her little body will kick in accordingly! Good Luck!
The Laurences
Gosh that stinks she has to go "fat free" already, most girls don't have to do that until they're in their thirty's. I am so sorry for you, I know that nursing is a very important thing to you, I'm sure you'll make the best choice for you and your sweet baby. You are doing so much for her in other ways you shouldn't have any regrets if you choose to stop. She is such a sweetie. Our thoughts and prayers are still with you. XOXOX
Is there a milk bank there? My friend donates hers to some group. I'll check it out if you're interested. But maybe that will be one less stress for you at this difficult time...another hard decision. Glad this is one problem that seems to have a solution (the fat-free thing, I mean).
We're all praying for you. Know you are blessing us too.
Wow. On a diet already. It is one more day, one more challenge, and as you said, one more opportunity to learn. You will be Professors by the time you head home! Prayer is what we can do the most of for you, so you will have all we can give. Harry
We have been so inspired by you guys and Gracie. Even throught the hard times. We have a saying when we go through a tough time: We are where Heavenly Father wants us to be to learn what He needs us to learn. Hang in there. We are all praying for you. By the way if it ends up you can't use your milk, there is a milk bank where you can donate your milk, just like a blood bank. So don't throw it away(if you end up not needing it).
We continue to pray for sweet Gracie.
Love,
Carrie
Michele, I have posted before, but it seems that Gracie and my little Eden are doing things quite the same. Eden had Chylo and is about 4 weeks into her Vivonex formula. She is so much happier I will say now that it is clearing up. I too have been pumping for 8 weeks now in hopes that I will be able to nurse someday. I guess I also feel like it's one of the only motherly things I am doing right now. I am told that once the chylo is healed up they can take breast milk again. There are so many questions and I know how difficult it is. I would love to talk if you have a minute. We pray for Gracie and your family daily and thank the Lord for the gospel. It is more important than ever for me now.
Keisa
480-718-5378
kridgway@cox.net
Don't give up!!! She might need it later!
You are so amazing! I can't believe that you are still pumping! Ah-mazing!
What a blessing every day is with little Gracie. She lights up my world every day!
We love you and your little family...even tho we're strangers.
Still hoping to meet little Gracie...pigtails and all someday.
HUGS
Dang! I agree with an earlier poster - that Gracie just has to be "extraordinary" in every way. :) It will be so fun to see her little personality come out, because she is seeming a little spunky already!
Good luck with your decision. That is a tough one! You are of course, still in my thoughts and prayers every single day. I love that Gracie girl!!
So sorry to hear about the newest roller coaster. But, just a word of advice from one HLHS mommy pumper to another, if its not too stressfull for you.... keep it up. When she gets strong enough there is a possibility she will take up nursing. Mason nurses now and I never thought he would! But, sometimes pumping was a nightmare with the juggling of the hospital anf four other kids so I do understand your dissappointment right now. Just do not lose hope. Your family is in our prayers. Summer Strickland
What a dedicated mother you are, that is wonderful that you have done that for your sweet baby. I don't know if it is even possible, but maybe if you aren't able to end up using you milk it could be donated for premie babies or something? I'm sure it seems frustrating to have spent all that time pumping!! Our new baby, Jaxson, was at Childrens Mercy for a week when he was 7 days old with RSV, he could barely nurse at all so I was pumping all the time. After a few days of it I was exhausted!! Best of luck to you, you are a great example to all of us mothers!!
Argh. That must be so frustrating for you. But I love it that you can at least say "Good times." There is a small spark of humor in that, isn't there? We will keep Gracie and her mommy and family in our prayers.
I'm not sure if this will help you or not. When we were trying to fortify my breast milk for Mariska She didnt care for that too much. I was talking to her ped he said if we couldnt get her to eat it was forified formula we could fortify it with a human fortifier. I guess it turns it into powder. I wish I would have known about this before I started to lose my supplie! So if one day she can have just your breast milk maybe you can forify with your own milk and make it even better!! and not even have to use formula! Just an idea.
Our prayers and thoughts are with you.
Heart Hugs
Melynda and Mariska
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