God is so great! Really He is amazing. Our babies continue to do better and grow more every day. They are almost 8 weeks old! Life has been a blur during this time. There have been many ups and downs and I know we will have other challenges ahead of us but I will find strength somewhere. God always sends me strength and I find it in odd places sometimes.
I've been okay with letting go of a lot of control issues but I still have a hard time going through life without a plan. I've always set goals and had a plan with a back up plan. I don't know when my babies will be home and I don't know what we will need to do for them once they are home. I feel very unprepared. On top of that, I'm trying to get the girls room finished. I guess I just need some stability but know that isn't possible right now. Ricky just goes with the flow, so easy going. The balance has been great during all of this.
Update on the babies:
Brody is such a cutie. He is doing well maintaining his temperature and looks so adorable in his little outfits. All of the doctors will meet tomorrow (Wednesday) to discuss his case. The main topic is do they want to change his vent out this week. Since he is getting bigger, the vent he is on isn't giving him the correct/ best support for him. The machine is different but he will still have the tube down his throat. The doctors wanted him to be off the vent but now since his surgery will be in about a month, there is no use in getting him off the vent because he will need it for surgery and a couple days later while he recovers. The hope is he will heal quickly from surgery and they can kind of "force" him off the vent. Usually a baby would go from the vent to C Pap to nasal cannula but since he is getting so big, they will probably go from vent to nasal cannula because once the babies are bigger C Pap is useless because they will literally pull the tubes out of their nose (like Gracie likes to do now). The great news for today is he passed his eye exam and won't need another exam for two weeks. This is awesome news that his eyes are healthy enough he can have a break from the invasive test.
Gracie is just precious. I am able to enjoy her more and more everyday as she is getting more familiar with me. She is being a rock star on her C Pap even though she hates it and removes it herself all day. They retaped it very well today and also try to have her very snug in her bed so she isn't as free to pull it out. She is my little butterball. I just love seeing her get chunkier. It’s so awesome to see how much she has grown in just 8 weeks! She passed her eye exam as well and won't need another one for two weeks. The doctors will also be meeting about her case tomorrow. Gracie will need to have a test done to see where we are with her kidneys. She has remained on antibiotics to prevent infection. Now that she is more stable she can journey down stairs to that department. They will be seeing if her pee is refluxing back into the kidneys. We hope and pray that this is not the case. If it is refluxing she will need a surgery but can't have it until she is at least one. Her hips, legs, back seem to be getting better. We hope to have her central line out by next week. I will be very excited for this day to come. The doctor thinks she will be able to go to level II within the next two weeks.
Madilynn is such a snug bug. She is doing really well. We had a little scare yesterday with a transfusion but all is well and it turned out to be nothing. We did have to put her bottle feed on hold until tomorrow (Wednesday) I will meet OT at 3 for her first bottle. I hope all goes well and she will be able to suck/ swallow/ breathe well. She can not come home until she can drink 6 bottles a day at least. She is doing very well on nasal cannula. She is on a eighth of a liter of oxygen and she is down to 35% oxygen even during feeds. Keep in mind room air is 23%. We are almost to where she does not need nasal cannula! She passed her eye exam too and won't need another one for two weeks.
I will be interviewing pediatricians soon. I'm just praying that God will lead us to the right one. I know He will. He did with my fertility doctor as well as my OBGYN.
The babies have two ages, birth age and adjusted age. This means they may be a year old but at 8 months old with developments. We are 110% okay with this but I wanted to give family and friends a heads up so we don't get the questions like with Gracie's leg. We understand they are just questions but our babies are perfect to us and we don't look at/ focus on those things.
Also, I will be posting rules for when the babies are home regarding visitors. What things one must do to keep us all healthy and as germ free as possible. I think I should buy stock in hand sanitizer now.
Thanks to everyone that has supported us with phone calls, cards, emails and following us on the blog. We are very appreciative and very blessed for all the prayers.
Prayer is the Miracle Grow for our babies!!
Krista
