Friday, June 13, 2008

OK Bad News...If There Is Such a Thing

Well the results from the brain ultrasound are in so I'll just cut to the chase. Kayley has a grade 2 bleed or intraventricle hemorrhage (IVH). Here are the list of grades:

  • Grade 1 - Mild - The mildest bleeding that does not reach the ventricles.
  • Grade 2 - Mild - Some blood enters the ventricles without enlarging them.
  • Grade 3 - Moderate - A lot of blood in the ventricles that causes them to swell.
  • Grade 4 - Severe - The hemorrhage occurs beyond the ventricles, in the substance of the brain.
I'll explain a little about an IVH. There is no way to stop them...only ways to lower the risk of them. Once a baby has it, there is no way to fix it. They can't just go in and drain the blood. It gets more severe with the amount of blood that enters the ventricles. Ventricles are chambers in the brain that store fluid that protects the brain and spinal cord. If a lot of blood gets into the ventricles, it can cause the fluid to stop flowing and the ventricles to swell into the brain substance. That's where it can damage brain tissue and lead to long term problems.

So obviously it's best to have no IVH's and that's what we were really hoping for. But, a grade 2 IVH was found. We are optimistic because of the low risk that this will lead to something severe. A lot of the Grade 1 and 2 IVH's just get absorbed back into the body with no long term affects. There is a small chance it could get worse, but babies usually show small symptoms when this happens. They could have trouble breathing, their head could swell, their blood pressure could be unstable, their blood gas tests could be abnormal, etc. Kayley so far has had none of these (see below post about her being a star). So again, we are optimistic. The next steps for this is to do another ultrasound after a while to see if the IVH is larger or smaller. Smaller is better but even if it is larger, it may not be a huge issue. In a book we have about premature babies, it says that even if it is larger, there is a small risk that they baby's good prognosis will change. We're going to go with that.

A lot of this information is from what we've read and what the nurses have told us. Tomorrow, we'll find out a lot more when we talk to the doctor doing the rounds.

The rest of the day brought on some progress. Since Kayle's blood gas test results continue to be right on track, her ventilator settings were lowered yet again. She is now only receiving 10 breaths a minute. She's regularly taking 50-60 per minute on her own. So, the doctor said this morning that tomorrow is the day when we try to take her off the ventilator again. She looks very ready. I think she's even trying to pull the tube out herself. Tonight, there were a couple times where she had a good grasp of the tube. The nurse had to constrain her arm so she quits doing that. Too bad I'm too slow with the camera. I didn't get a shot of it.

Kayley also received a Percutaneous Central Venous Catheter...right...that's what I said. Basically it's an IV that gets put in in her arm or leg and snakes up a vein close to her heart. It replaces the IV in her belly button that goes directly into an artery up to her heart. They do this because the one in her belly button can only last so long and is more prone to infection. The new PCVC can last a month or so. They run it up close to her heart so they can administer medicine more centrally. So now, she is down to just one IV in her belly button.

Lastly, Kayley received her first 3 feedings of breast milk today. The feedings are administered every 6 hours to begin with through a tube that is put in her mouth down to her stomach. The first feeding of 2 cc's was given to her at 8 am. At the second feeding around 2 pm, they first checked to see if there is any residual (processed breast milk still in her stomach) left from the first feeding. There was none. So, another feeding of 2 cc's was given. At the 8 pm feeding, some residual was found. So, they got rid of that and gave her another 2 cc's. If she doesn't push this feeding through, they may postpone the subsequent feeding. If she starts to handle these feedings, they start to up the amount and shorten the time between feedings. We are told it takes a few times to get her stomach moving. Again, feeding is one of those things that will take time. Until she handles breast milk through the tube, she will still be getting nutrition through the remaining IV in her belly button.

**The photos are just some miscellaneous shots from today. Stretching out. Feet. Hand.


  1. God bless you Andy for these updates. What a task it must be to remember all these details but at the same time it must also be therapeutic. Our entire family continues to pray for little Kayley as well as you, Megan, Drew and the grandparents. Our little rural country church here in the Osakis, MN area has also been praying for you. We send our love and support to each of you.

  2. Megan and Andy,
    Know that we are praying for little Kayley and you guys. We can't imagine what it must be like to be going through this. Thanks for keeping everyone posted.
    Stan and Heather

  3. Megan and Andy,
    Sharon sent me the link to your blog so I can follow Kayley's progress as we travel. I know Miss Kayley will be a strong, beautiful girl like her Mom. We're thinking of you as you go through these challenging times. Jane and Ron Frisch