Sorry for no post yesterday. We received some not so good news and I was too exhausted when we got home to do a blog entry.
Lets start with our little Princess Miss Addison.... Yesterday Addison had another brain scan. While the bleeding in her brain has not gotten any worse, the blood has not begun to drain as they expected. It's starting to clot and is causing spinal fluid to sit on her brain. The technical name for this is "progressive hydrocephalus". We met with a neuro surgeon yesterday who discussed with us the possibility of needing to either insert a needle into her brain to drain the fluid or implanting a shunt into her brain. A shunt would drain the fluid to another part of her body that could absorb the fluid. The neuro surgeon is going to closely monitor her for one week and make a decision after her next brain scan on Monday. While Addison continues to have these issues with her brain, everything else with her is going great. She is now eating 8ml of milk every 3 hours and is usually pretty alert and feisty. Her weight as of 4:00 this afternoon is 2 pounds 3 ounces.
Onto our little Pumpkin Miss Alexis.... As I explained in my blog on Sunday, Alexis is still having some "brady" issues. Yesterday she had quite a few as well as she had 18 last night. The doctor explained to us this morning that she is concerned that her PDA in her heart may have reopened or she may be getting some kind of infection. They ordered more blood work, a urine sample (which she did not enjoy, because a catheter has to be inserted) and started her on some antibiotics. They also increased her caffeine doses to twice a day and ordered another heart scan to check out her PDA issue. We should know the results of all of these tests tomorrow morning. Alexis is also tolerating her feedings as well. She is only eating 3ml every three hours. The doctor is hesitant to increase her feeds until she knows what the results of her tests are. Alexis' current weight as of 4:15 this afternoon is 2 pounds 7 ounces.
We haven't really taken any new pictures lately. The girls are very delicate and because they keep it so dark in the n.i.c.u. a flash is always necessary while taking pictures. The flash on the camera really seems to be bothering them lately so we've cut back on taking pictures. The nurses and doctors told us that every movement or noise stresses them out. They say that the most important thing right now is for them to get to know Terry and I through our voices and our touch and to try and limit outside disturbances. This is why we haven't invited many guests into see them. Yes, we are keeping them very sheltered but that is really what is in their best right now.
We continue to ask for your prayers for our girls as well as for us. Terry and I are both having issues holding it together and we just ask you to pray for our families continued strength to continue to fight through these difficult times.
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2 comments:
HI Janet,
We'll keep praying for you all! Hang in there!
I read your BS on webmd and cried for you. I am pryaing for your little girls. I went through NICU hell too.. Just remember God wouldn't give yout this if you couldn't handle it. I know, not comforting but it's the truth. Stay strong for your girls and your husband. It's ok to cry and be mad at the world. Seek help if you need it. You can't keep it held in. NO ONE knows your pain unless they lived through this nightmare. Seek out other NICU parents for comfort and support. Ask your nurses if there is a parent group of somesort. Seek out your priest for help and ask members of the church to help make your meals and care for your household when you are away. It's ok to ask for help.. whether emotionally or financially. If you need help ask for it. That was my biggest mistake. I kept turning everyone away and in hindsite I wish I had the help... You can and will survive this.
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