I guess there comes a point when you start to realize as parents that this road of recovery is not what we expected. They said that it would be a roller coaster of a journey. And those who said it were right. Emma has amazing days, days where you feel so great that she will be out of here in no time. And then she has days where it looks like we may be here till the Glen procedure. And its times like those that your morale starts to fade. Sarah and I are so ready as parents to be parents that it is so hard day in and day out to see our child like this. We just want to pick her up, hold her, kiss her, hug her, and tell her everything is going to be okay. At this point in time, we can not do that. It's hard. I don't think there is any amount of preparation that can prepare you for the constant grind and emotional stress that it puts on you as a parent watching your child go through more in their 24 days of life than I will every go through or have gone through in mine. It's simply hard. In saying all of that, I know that we have an amazing God that is watching over Emma, who never feels worn out, and who is always helping her. He is who we lean on for strength. I don't know how we could make it through this journey without leaning on Him! He gives Emma strength and when we lean on him, He gives us our strength.
Emma is having one of those days where she is not really doing leaps and bounds better, but she is not doing leaps and bounds worse. The doctors constantly remind us that this is normal. (Another constant reminder that sometimes what we want for us and Emma, is not how life goes!) They say that every hypoplastic child has ups and down days and that we should prepare knowing that that is the case. But they also constantly remind us that given her severe condition, we are doing great! I think the hardest thing is seeing the end result. As parent's I think its easy to get caught up in the day by day little stuff, that we get the end result clouded. So, every time I think how much I want Emma to be at this point, I step back and think of what the doctors tell us and it gives me peace to know that they feel she is doing good. And then of course, I pray.
They have stopped her feeds again. They think that they want to watch her stomach and digestive system closely to make sure that it is functioning like it should. They have also added another antibiotic to her regimen of medications. They are still concerned that she may be having some sort of infection and so they want to cover everything they can. They want to start weening her and starting little trials of breathing to get her ready to be off the ventilator, but they stated today that they will not pull her off till they notice a good amount of weight gain. So, we will see how she does with gaining weight. They are trying some new regimens for her nutrition to try to maximize the amount of calories and fats she is getting.
All in all, she is doing good. Just a long road of recovery.
Some specific prayer requests:
1) Pray for her nutritional status. Pray that she starts gaining weight and that she can tolerate her oral feeds better.
2) Pray for her to be infection free and stay that way.
3) Pray for all of her labs, sats, and other vitals to be great and where they need to be.
4) Pray for her to start steadily recovering and not take steps backwards.
5) Pray for her to be peaceful and rest, so that her body can gain the weight that she needs as well as not have to work too hard.
6) Pray for the doctors and all the medical staff that are making decisions, that they will be guided by God's hands and that they will help her get to where she needs to be.
7) Pray for Sarah and I as we are indeed in the long journey with Emma. Pray that we will have strength and peace for the roads ahead. That strength and peace that can only come from God!
God is good, all the time. And all the time, God is good.