Monday, August 31, 2009

Update - August 31

Yesterday was probably the worst day our girl has had since the day she was born. Before church, we went to the hospital to see her. She seemed to be doing well and was awake and alert when we saw her.

Micah went back in the afternoon so his sister Liz and her husband Scott could meet Lydia for the first time. The nurses told Micah that she had another apnea episode where she stopped breathing, but they brought her back without too much trouble. During the time Micah and Liz were there, she had a second episode when she stopped breathing, and unfortunately, Micah had to watch her turn blue before the oxygen was turned up and she started to breathe again.

Micah came home and an hour or so later we got a call from the chief neo-natologist. He was calling to tell us that she had another apnea and that protocol at this point would be to put her on a respirator to regulate her breathing for her. He had to ask our permission before they would do the procedure. Apparently, many parents in our situation with a child whose brain could be permanently damaged would choose NOT to put in the respirator and allow whatever is going to happen to happen. He said that if we didn’t intervene and put her on the respirator, she would continue to stop breathing and suffer pretty severe brain damage due to lack of oxygen and she would probably eventually die from one of the episodes. We of course opted for the respirator. While Micah was on the phone with him, Lydia was having another apnea and the doctor hung up with us quickly to take care of her.

We went immediately to the hospital. When we arrived, they had already intubated her and she was breathing easily. They wouldn’t let us see her for a few minutes because they wanted to finish getting blood to test her blood gas level (to make sure she’s getting the right amount of oxygen). The doctor did tell us that she was continuing (as she has always done) to breathe on her own. Her breathing is just very irregular and sometimes stops. We were also told that if at any point we want the tube to come out so we can see if she’s ready to breathe on her own, we can do that.

When we could go out and see her, it was upsetting. To see her with the tube in her mouth is heartbreaking. When they let me hold her (which, THANK GOD we can still hold her), the tube would sometimes pull at her throat and make her gag which was so painful to watch. It’s awful that we have to hurt her to help her.

When we put her back, things started to get even scarier. We watched as she had seizure after seizure. All told, she had probably five or six in a span of about a half hour. They gave her a bolster (a huge dose) of the seizure medication to make the seizures stop. Thankfully, she was on oxygen the entire time, so there won’t be any damage to her brain. After the medication kicked in, she was fine. She was squirmy and uncomfortable and let us know. She can’t cry because of the tube in her throat, but her face showed us she was MAD.

They discovered from some of her blood work that she may be suffering from an infection of some kind. The results take a little while to get back to show specifically what the infection is, so they treat it with two kinds of anti-biotics to knock it out. We’ll let you know when we know more about that.

The doctors decided it would be best to get an IV line started to get the meds to her more effectively. Unfortunately, she takes after her mom in that her veins are easy to find, but very difficult to stick. Our nurse Donna, who is just the sweetest woman, tried five or six times and wasn’t able to get a good line. We were thankful to see that Lydia responded to the pain of being stuck and even started to pull away whenever Donna came in and touched her.

She was calm and restful when we left her last night and we didn’t get any calls telling us anything else happened last night.

So, they’re still trying to figure out what’s happening to cause her apnea spells. The most likely possibility is that the seizure medication dosage got too low. They say that she can have seizures that don’t show physically as seizures because she might stop breathing before there are any signs. Once they gave her the medication, she calmed down and was fine. Again, we’re not sure if this is actually the cause, but it’s a possibility.

I don’t even know how to ask you to pray anymore. Those of you who have children know how painful it is to watch your child suffer and there’s just absolutely nothing we can do to stop it. This isn’t what we wanted for her or for us, but we continue to rest in the knowledge that she is upheld by our God who loves her infinitely more than we can ever comprehend. We don’t understand why He’s asked our family to walk this road, but we know that in all things He will be glorified.


  1. When you don't know what to pray, be assured that God does know, and He's close by during your most painful times:

    "...for your Father knows what you need before you ask him."
    - Matt 6:8

    "The Lord is close to the brokenhearted, and saves those that are crushed in spirit."
    -Psalm 35:18

    My prayers continue each and every day for your baby girl and family.

  2. Jen
    We don't need to know how to pray...God knows. We love you very much, have been praying, and will continue to do so.
    Peter & Denise