Today has been a very difficult day for me so I will keep this brief.
Eden is still really puffy despite being given extra diuretics. Obviously, they would like her to pee out everything that goes in. They call this being "even." If she pees more than she takes in she is "negative" (rarely has happened) and if she pees less than she is given she is "positive." Well, Eden has been positive by about 250 cc's every day which is substantial. Another mystery they are trying to figure out with our princess. We had a nice, long chat with one of her cardiologists yesterday who will be preforming her cath on Friday. He says that Eden really is a challenge because she does things that babies just don't do, not even Down syndrome babies react as she does. He spoke highly of her in that she is very tough and has bounced back from everything thrown her way. However, he did say a couple of times that babies just are not meant to be in the ICU for months and months. What does that mean? Her nutrition is sub-par at this point since she can not tolerate any more than 20 calorie strength. She should be at about 27-30 calorie strength for her age and size. He says that they would term her "malnurished", but none of her blood work shows any signs of malnutrition at all. Yet another mystery. They are going to try infusing breast milk with her formula in very small amounts to see if she can tolerate it. If so, they would prefer the breast milk because of it's immune properties. I would love if she could handle my milk. The worst thing happened this morning when we received a phone call that her broviac line had just come loose. If you remember, she went into surgery almost 2 months ago to have a more permanent IV central line placed for all of her medicines and blood draws. This was supposed to last her until after her next surgery. Well, it came loose somehow and she had to go back into surgery today to have another one placed. She did well, we expect nothing less than for Eden to handle it well, and she is not recovering. This seems to get harder every day for me. I am thankful that Eden is just a baby an will hopefully never remember anything when it's all over.
Thank you all for supporting our family and for helping me feel the Lord's love through all of this. Despite the challenge this is for us, we are so blessed.
6 comments:
I'm so sorry to hear that yet another thing is happening that is not positive. Praying for the day that she will not spend time in the NICU and will be home with you all.
I pray for Eden everyday!! I pray that she will recover, I pray that she will join her family at home, and I pray that she will not remember the ordeal that she has gone through. Heavenly Father is close by watching over her and giving her strength. She has fought hard thus far. I hope that the cath on Friday will give you and the Dr.'s some much needed answers.
Andrea
You have had so many ups and downs. I can't imagine how hard this must be for you. Our prayers continue to be with Eden, her doctors and with your family.
Im sure you dont remember my post from forever ago but we are friends of Dennis and Melindas. I read your post daily and pray for little Eden to get better. I got the chance to meet your other girls at a baseball game Ethan and my son played at last week. They are sure cute! Our thoughts and prayers our always with you and stay strong!
The Bowlby's
Our family just wants you to know that we are thinking of Eden everyday and keeping her in our prayers. We know it is rough, so hang in there. It can be frustrating; especially, when they don't respond in the expected. We pray pray that she will begin to y extra fluids. We are so sorry that your struggle has been so tough. I know just a little how that is; especially, when you are trying to care for two others at home. Sending you best wishes from across the ocean. Parents of Roman TOF baby
Thank you
Post a Comment