1 week later

Sorry it has been so long since my last posting. Some of you have wondered if there was something seriously wrong. Not really. I just have been so busy and caught up with being at the hospital that by the time I get home, it’s either extremely late or I am extremely tired.

I want to start off the message by thanking everyone that showed up for the CHOC walk Sunday morning. I apologize if you don’t want your name listed here, but I want to recognize the wonderful turnout we had. Special thanks to:
Grandma Chris, Aunt Stephanie, Uncle Dave, Aunt Casey, Uncle Kyle, Jenny, Bruce & Erin, Lisa & Jeff, Rob, James, & Kathleen, Tiffany & Shawna.
Also, thank you to everyone who has made donations to support our team. You made walking that much more fun and motivating. It meant a lot to Brady, the babies, and myself.
We had a lot of fun. A little early for us all, but it was for a good cause. I think we will try to make this an annual event, so if you missed it this year, try for next year. We got a lot of good pictures for the babies as well. I will probably post them of Facebook. I think that is gong to be the easiest way.

We will move on now to my sweet babies….
Madaline continues to do well. Her feeds have now been increased to 40 cc’s every 3 hours. That comes out to approximately an ounce and a half. On Monday they needed to stop her feeds for about 12 hours so they could give her a blood transfusion. They came to the conclusion that it will help with her heart rate and keep her from burning calories that she could be using for weight gain and energy. Her weight as of yesterday was 4lbs. 3oz. They stop the feed to avoid other medical issues like NEC (which is an intestinal infection that she had before. It can be extremely dangerous.)
We are continuing with the attempt to breastfeed. Today she had 3 cc’s by breast and the rest by her feeding tube. She tuckers out pretty easily by doing this, but she will catch on. She has been doing great with her bottle-feeding, which she gets 2 times a day. The last feed she had by bottle she took 21 cc’s. Surprisingly the muscles you use for breast and bottle are different, so she has to learn both. There’s so much to learn for both techniques, it amazes me. It is different for preemies compared to full term babies, so anyone who watched both babies is going to have to learn how to feed them if I’m not around.
Monday night was a big night for Brady. It was his first time giving Madaline a bath. He seemed to enjoy himself until he lifted her bottom to clean it and found that she had a little surprise for him, a #2. Good job sweetheart! That’s my girl!
She had another eye exam today so make sure her sight is still on track and they are. She’s doing well. She may even be home within 3 weeks or so, if all continues to go well.

Now my little man… There is so much to try to remember, it’s hard to keep up. Friday the doctor came to talk to me and told me that Ethan was doing better than he thought and was anticipating taking he breathing tube out sometime during the weekend. At that point his biggest concern was his feeding. He really wanted to focus on getting his feeding volume up so that he could start gaining some weight and get off the IV medications since they can be so hard on the liver. Especially since it is an immature one. Well, after the walk on Sunday, Stephanie and I went to the hospital to visit the babies. They were planning to take Ethan’s breathing tube out since he was doing so well. The plan was to put him on CPAP machine again. We stuck around by his bedside to watch them extubate. Sadly it was not successful. They took the tube out and he immediately seized. They tried to bag him, and his air way was completely closed and they couldn’t get air down to his lungs. They had to put the tube right back in. It was pretty scary to watch them have to do that for the second time. This time was more emergent though since they couldn’t get air into his lungs. Because of all the trauma that caused for him, he had a very rough night and may have had more seizure activity and they had to give him Ativan to help him relax. Also, because of all the issues that on Sunday, they discontinued his feeds for a few days which has now put us back to square one. It feels like we try to make one step forward, then we move 2 steps back. The next step may be to try to extubate again when he is healthy enough to do it. If that is not successful, they may give him a steroid to help his throat muscles strengthen. The problem is that the side effects to the medications is Cerebral Palsy, which is already a concern that we have for him. Hopefully we will not have to travel that road. So please keep up the prayers.
In the meantime, we are still waiting to do the MRI. It will probably happen sometime late this month or early next month. Not soon enough though. They did decide to start the video EEG today. He has a bunch of wires hooked up to his tiny little head right now measuring his brain activity. I feel so bad for my little man. Ay least it’s not invasive. They want to see if some of the movements he is having are normal, or if they are seizures. I really hope everything is ok. We also received his chromosome test back and it was normal. At this point we have to talk to Genetics to see what the next step is. He also had his eye exam today. The doctor said his eyes are looking okay for his age and what he s going through. He will probably have them checked again in a couple weeks to see how he is progressing.
This is just a taste of all the things going on. During the day at the hospital, I am visited by so many different people, from different departments, and we have to address different issues with both babies. It can be very hard to keep up with.
Halloween is coming up and I am still trying to decide if I am dressing up the babies. I have a couple ideas in my head, so stay tuned.
As a side note, please forgive me for my spelling or grammar. I am usually writing this late at night and I get too tired to proof read. Don’t hold it against me

I will try to stay up on the blog more often than I have this past week. In the meantime, I am asking that you please continue praying for Ethan, Madaline and all of the people that are there taking care of them right now.
Thank you and God Bless!