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Post by morganlbusse on Jan 9, 2010 13:08:06 GMT -5
Wow! Thank God! Continuing prayer for recovery!
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Post by veryblessedmom on Jan 10, 2010 20:34:13 GMT -5
UPDATE FROM ANNA GRACE'S BLOG Sunday, 1-10-10 ( Tina is now alone in Charleston, SC. Her husband, mom and 2 yr old son have gone back to Spartanburg, SC. Please pray for her) I didn't arrive to the hospital until about noon. When I saw Anna Grace the doctors had removed all of the lines from her tummy!!!! She still has the RA line into her chest and the pacing wires into her heart and the NG tube in her nose that goes into her tummy and an IV in her right hand - we are down to only those four things - wow!!!!! They also had Anna Grace up to "full feeds" which for her is 25 ml per hour through her NG tube. She appears to be tolerating the milk fat well. She has some residual milk in her tummy which means that her little tummy is not digesting all of the milk, but she hasn't thrown up at all today which is a good sign. Please pray with us that her body is going to be able to digest all of the milk and that there is very little residual milk and that she has no vomiting. The doctors think that they will be able to remove her RA line tomorrow and if they do that then I will be able to HOLD HER!!!!! Please be praying that will happen soon as I am so HUNGRY to hold my baby - how sweet that will be! As for her swallow study - it looks like that won't be until Wednesday as they want her to be on full feeds for a couple of days before they do it. It looks like we might be candidates pretty soon to be moved to "7C" that is where heart babies go when they move from PCICU. It is the "step down" floor from PCICU. I don't want to get ahead of myself as we are still taking things "day by day" as Dr Bradley would say, but once she can tolerate "full feeds" for a couple of days that's our ticket out of PCICU!!! Thank you friends for continuing to pray for Anna Grace - it seems like everyday is a big day for our little one  |
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Post by veryblessedmom on Jan 11, 2010 10:00:09 GMT -5
Please pray for Anna Grace. This is an update from her daddy.... Just received word Anna appears to have fluid building back in her chest and a chest tube might have to be put back in. Prayers welcomed.
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Post by veryblessedmom on Jan 14, 2010 9:31:32 GMT -5
Well, today is another big day for Anna Grace. It seems that everyday is a big day for our little one. We moved from PCICU today to 7C. I was reluctant to go, it's scary leaving the one-on-one care of PCICU to being in your own room with nurses down the hall. The doctors said that Anna Grace was ready (Mommy was the one who was not....) But, we made the trip and are getting settled in. Anna Grace still has a chest tube in so please continue to pray for the fluid in her chest to stop so that we can lose the chest tube for good. Also, Dr bradley suspected yesterday that she might be starting an infection on the incision on her chest so he ordered her to start antibiotics. So we are back on IV antibiotics (which means hello diaper rash). Please be praying that the antibiotics will prevent this from turing into a "big" infection or a big deal. Also, pray for her bottom. I know it sounds insignifant, but it is so uncomfortable for her when her bottom is raw. They have compressed her feeds to 1 1/2 hours now and this has caused her to start spitting up so the doctors have put her on three new medications for refulx: Reglan, Zantac and Prilosec. They said that it is very common for heart babies to suffer from reflux and so since Anna Grace is now getting more food during a compressed period the refulx is rearing it's ugly head. So, please be praying that she can tolerate her feeds without too much spitting up. It's been a big day today. Now that she is out of PCICU I will start spending the night with her in her new hospital room. There is a little couch for me to sleep on, not the Marriot by any means, but it will be fine and it is right next to my daughter's crib. I think Daddy is too big to sleep on it though so Mommy is probaby going to be doing night duty until we go home. As for going home..... it all depends on the drainage from her chest tube AND getting her to tolerate fully compressed feeds. The doctors said that every baby is different and they go at their own pace. I have come to learn that there are bumps & hurdles along this road so I am taking it "day by day" Thank you Lord that we are on 7C today! |
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Post by veryblessedmom on Jan 14, 2010 13:56:03 GMT -5
Hey, guys. I missed an update that will help this all make more sense and can help you pray specifically for Anna Grace.
Anna Grace had to be taken off her mom's breast milk. Apparently a common problem with heart babies is the surgery does damage to the lyphnatic system and that is where mother's milk proteins get broken down. They have switched AG to a formula that has proteins that are broken down by the liver. The problem is she's not tollerating this either. Below is the latest Blog update. Thanks for all the prayers.
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God alone is Sovereign
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Thursday, January 14, 2010
Anna Grace - January 14 - Update #2
Well, the doctors made their rounds this morning & decided that Anna Grace's problem might not be the formula but that she might not be able to olerate the compressed feeds. So they kept her on the formula and changed her back to continuous feeds. I told them that I didn't think that was the problem, but they said they wanted to try this for 24 hours and see. So, the started her back oon the Infaport on continuous feeds and as soon as they started the formula back she started crying, & crying. Her heart rate got into the 200's - I finally paged her nurse and said to page the doctor. The doctor said to stop the feeds & they would talk and decide what to do. As soon as they turned off the feeds she stopped crying. She is sleeping now. I am truly thankful for that. They have started her back on IV fluids until they can figure out what to do. Since she has been off the breast milk the fluid in her chest has stopped, but she cries constantly and throws up on the Infaport. What to do....... they said it is uncommon for babies to not be able to tolerate the formula..... I think they are surprised by Anna Grace's reaction to the Infaport. It is hard. Praying for God to give discernment, relief for Anna Grace and strength for Mommy. I have been crying all morning. It is hard not to when your little one is hurting and there is nothing you can do.
Posted by MrsB at 1:17 PM 0 comments
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Post by beckyminor on Jan 14, 2010 14:02:29 GMT -5
 Such a hard set of circumstances...when you gain ground in one medical area, you lose ground in others, huh? Still praying for this little fighter. |
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Post by raregem on Jan 14, 2010 21:45:18 GMT -5
God's power is amazing and He truly is the Great Healer. I, personally, went through similar circumstances when I was born (though it was a tumor in my neck that cut off air/swallowing, and not my heart), so I know His power is more than any doctor. The Miracle Worker, for sure. My prayers are with this tiny baby...
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Post by metalikhan on Jan 15, 2010 2:41:38 GMT -5
Praying for this precious little girl. Anna Grace will be on my long term prayer list.
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Post by veryblessedmom on Jan 15, 2010 8:34:03 GMT -5
Thank you so much for praying for my friend, Tina and her little baby. It means so much. Here is the latest update. Please keep praying she can tolerate the formula. They said that it takes up to 6 weeks for the lymphnatic system to heal after heart surgery. At that time they hope to resume milk.
Anna Grace's Blog:
Just a quick note about last night. At 9:00 pm she was put on 12 ml per hour of Portagen which she appeared to tolerate fine. At 1:00 am they increased her feeds to 20 ml per hour. By 2:00 am she was screaming & crying and inconsalable (but she never threw up). We had an awesome nurse last night (PRAISE GOD) who decided at 2:00 am to turn off the feeds & call the doctor. The doctor said give her tummy a little time to rest & then decrease feed to 16 ml per hour & see how she tolerates it. By about 3:30 am Anna Grace had stopped crying and calmed down. At 4:00 am we turned the feeds back on at 16 ml per hour. She appeared to tolerate that fine. At 6:00 am we increased feeds to 18 ml per hour and I'll be confident by about 8:00 am if she'll be able to tolerate that. Her ultimate goal is 25 ml per hour continuous feeds and THEN to start compressing. I have a feeling our little one will let us know when it is too much. For now, I am thankful for an overall pretty good night. I did manage to get a couple hours sleep tonight. Also, Anna Grace's nurse tonight has been awesome and that has made such a big difference for us. Thank you Lord. Also, thank you friends for praying for us....
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Post by veryblessedmom on Feb 2, 2010 20:36:36 GMT -5
From Anna Grace's Blog THEY ARE HOME!!!!God alone is Sovereign 1 Chronicles 29:11 Yours, O LORD, is the greatness and the power and the glory and the victory and the majesty, for all that is in the heavens and in the earth is yours. Yours is the kingdom, O LORD, and you are exalted as head above all. Search This Blog powered by Tuesday, February 2, 2010 Anna Grace - February 2 We are home. Had a good first night at home together, I think the whole family, including Anna Grace, is happy to be home and all together. Now, to just find our new routine & our new normal..... it's going to take some time I think. Anna Grace has an appointment with her pediatrician tomorrow (Wed) and an appointment with her Cardiologist on Friday. Thankfully, Mee-Mee is staying with us this week to help watch Zachary and to cook for us as we are getting used to having a very special baby #2. We are so thankful for all of the help all of our parents have given us throughout this journey - we wouldn't be able to do it without them!!!!! So, now just trying to get our new routine and stay well |
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Post by JenLenaMom on Feb 3, 2010 9:50:44 GMT -5
Home after barely a month and half?!!! Praise God for His boundless blessings!
Continuing to pray for smooth transition period.
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Post by Jeff Gerke on Feb 4, 2010 8:08:15 GMT -5
This is terrific!
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Post by morganlbusse on Feb 4, 2010 11:39:37 GMT -5
Wow! Thank God! And more prayers for adjusting to the "new normal" |
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Post by almarquardt on Feb 7, 2010 22:11:17 GMT -5
Praise God indeed! How relieved you must be to finally have your little girl home where she belongs.
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Post by metalikhan on Feb 9, 2010 2:15:15 GMT -5
What an awesome blessing! Praise God!
Prayers for her continuing healing at home after such a rough start in life.
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