Maia's had kind of a rough day. On the positive side, the doctors feel that she is "looking a little better than yesterday." On the discouraging side, they told us that was the only good news they were able to give and that she is an extremely sick little girl.
It seems so hard to reconcile the unresponsive babe lying in the hospital bed with my sweet Maia who was running and playing on Monday evening. The physical shell is the same, but that's all. My heart is breaking for my precious girl.
The drains are working well. They have pulled a tremendous amount of fluid from Maia's brain. Probably around 700ml total, just from the area surrounding her brain. Can you imagine the pressure that must have been causing? The purulent material (pus) that the doctors were expecting has started to show up. It's not pretty.
The nurse today has been a great advocate for Maia's pain control. She has supported my concerns to the physicians and we now have scheduled Tylenol with Oxycodone and Fentanyl as needed. It is keeping Maia more comfortable.
Maia seems less responsive this afternoon. This may be related to the pain meds and I hope this is the case. But, it is also concerning. She's having some movements that we are trying to sort out: rigors vs seizures.
Maia has not had anything to eat since Monday evening and has lost a significant amount of weight. Thank God that she had a little reserve to work with! Feeding through her NG (nasogastric tube) were just started about 30 minutes ago at a very low rate. If she tolerates them, they will be titrated up.
This is going to be a very, long journey for our girl. Assuming that things go well, we are told to anticipate at least six weeks in the hospital. I haven't even begun to think about how to manage this. And how do we help Matthew understand. I feel such a need to just be with Maia. It's not that I don't trust others with her. It's that I WANT to be with her, to be close to her. I'm her mom, the one who is supposed to kiss all the boo-boos away. I know how to comfort her, soothe her, how to position her, etc. She is holding tightly to my left hand as I type this with my right. I can't bear the thought of leaving her. And yet, what about Matthew? He's got to be wondering why things are so different. I worry about the attachment issue. Although nana and papa are awesome, he needs to know that Mark and I are still mommy and daddy. That this will not be forever. I don't quite know how to accomplish that.
Again, thank you for your prayers and encouragement. I don't pretend to understand why this is the journey God has chosen for us and for Maia, but I trust that He is with us each step of the way. He is faithful. And He is mighty to save.
God is Great... Prayers are Powerful! Through this rollercoaster ride, keep one thing in focus... GOD IS IN CONTROL and He IS listening to all of our prayers!!! Our prayers will NEVER diminish and will NOT subside... I've prayed for y'all BEFORE this happened... I will continue to pray WHILE this is happening... and my prayers will ALWAYS continue for Maia and your whole family... because we CARE and because we LOVE YOU!!!!!!! We will ALL continue to encourage God to see this through with a very happy outcome with His grace and healing love. I will continue to think NOTHING but positive thoughts and happily KNOW that Maia is one of God's children and WILL keep her under His wing!!! Thoughts, prayers and LOVE continue to pour out to y'all!!! ~Brad <3 <3 <3 <3 <3 <3 <3
ReplyDeleteOh, Melanie, I'm so glad God chose you to be Maia's mama. You and Mark love her so. She is in the best hands..God's got her and she's holding on to the two people who love her the most. I can't imagine if she were still in the orphanage. Praying continued strength for you all and peace upon Matthew.
ReplyDeleteI wish so much I could just hop over and help you out some. I am so very sorry all this is happening and just know that you are being held up in prayer by many, many people.
ReplyDeleteI am so sorry you all had a rough day. When Maia is having a hard time, so are Mama and Daddy. Praying tomorrow is a day that you can see measurable improvement. Praying also that Matthew finds comfort and peace with his grandparents.
ReplyDeleteMy heart is breaking for you, Melanie. I can't even begin to imagine how difficult this is for all of you. We continue to pray.
ReplyDeleteI would offer you one word of encouragement with Matthew. I know every child is different, but when we left to bring home Jonathan, I was concerned about how it would affect Elijah's attachment. While we were gone, he got sick and appeared very ticked with us over Skype. But when we got home, I didn't really see any negative affects from being gone. He was fabulous with Jonathan and did fine with us. Obviously, Matthew doesn't have the cognitive delays that E does, so I bet he'll be fine too and understand that Maia needs you right now. I'll pray specifically for your concerns with his attachment and wisdom on how to handle this.
Lifting you up!
Maia is in my prayers and so are you. Try to go home and just have lunch with Matthew, somewhere not in the hospital. To give him a break from all this different stuff and to get you some sunshine! Take care of yourself and I'm praying.
ReplyDeleteMelanie, I just wanted to let you know that I'm praying for all of you. I feel so close to this, as the timing falls right when Chrissie had her 31-day battle two years ago. Our journey with Selah has a few similarities to Maia's as well. And, Kiefer joined our family just two weeks before Chrissie's open-heart surgery, so having a new child home and then leaving that child for an extended period of time is also something I'm familiar with. I would like to offer encouragement that Kiefer has turned out GREAT. No attachment issues. When Chrissie was in the hospital, I spent 31 days straight with Chrissie at the hospital. I saw Kiefer a few times when he came to San Antonio, but it was VERY limited. I was so concerned about Kiefer and how he would ever know that my husband and I were his mom and dad after such a hard transition, but he has amazingly well. There's no doubt that it's all God, and I know He'll do the same for y'all and Matthew. Be where God tells you to be, and let Him take care of the rest. For us, that meant Mom at the hospital by Chrissie's side, and God doing all that needed to happen for Kiefer, until God united us again.
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