A Bumpy Road

Brooke's road continues to be bumpy. Unfortunately, this week we have hit a rough spot. We found out that Brooke has a paralyzed diaphragm. Basically, her right diaphragm (the muscle below the lung that helps her breathe) does not work. Instead, it is sitting high in her chest and not allowing her right lung to fully expand. At this point, the doctors are thinking that the only way to help her get past this is surgery. She will most likely be having a diaphragmatic plication in which they tie down her diaphragm so that it is no longer in the way of her lung. It will never work correctly, but her other diaphragm and chest muscles will help her breathe. Although it may bother her for the rest of her life, we are hopeful that it will help her be able to breathe on her own soon.

Brooke is now 2540 grams (almost three times her birth weight) or 5 lbs 9 oz. Unfortunately, at this point they are saying that she needs to be 3000 grams before they will do the surgery. If she follows the same trend this will take her about a month. So, once again, we just have to wait for her to grow big and strong for her to take the next step.

She is still on the High Flow nasal cannula for a few hours everyday. She hasn't been able to do more than that yet, but we are still hopeful that as her lungs get stronger she will be able to do more. Since she has chronic lung disease, the doctors say that it just takes time for the new lung tissue to grow and for her to be strong enough to breathe on her own. But for a few hours everyday we get to see her little face and we really enjoy that!

Brooke is really acting more and more like a newborn lately. She is much more alert and active. She loves her mobile, her binky, and being pat on the butt. We are currently putting together a playlist of music for her and reading her stories so she can hear our voices when we aren't there. If you have any songs you think she needs to hear, let us know and we will add them on!

A GREAT Mother's Day!

Today was a great day! Brooke took the next step towards breathing on her own!! She is now on a High Flow Oxygen nasal cannula. She was put on it this afternoon and so far is doing great! She will be cycling back and forth between the High Flow and the CPAP for a while until she is strong enough to only breath through the nasal cannula. It is another big step in the right direction!

Brooke is also doing really well on gaining weight and eating. She just passed the 5 pound mark and was 5 lbs 3 oz today. She is now eating 55 mL every four hours. We are so proud of our big girl!!

We talked to the doctor a bit about the future with Brooke. He said that it is possible that it could take another 2-3 months before she comes home. He also said that these last few respiratory steps can be the hardest. We are really hopeful that Brooke turns a corner and starts moving a little faster. But, we are still just taking it one day at a time and today was a great day!

Today I thought about my mother a lot too. We did the breast cancer walk this morning and it was beautiful as always. Thanks to the team for walking with us and for all of the generous donations. I know my mother is holding Lexie and looking down on us smiling today... Happy Mother's Day.

Three Months Old!

Brooke continues to make progress, but it is still slow and steady. The good news this week is that she is no longer getting extra breaths from the CPAP machine. So, she is once again trying to breathe on her own and is so far doing well. It is clearly a lot of work for her and she seems pretty worn out from it, but we are very proud of her! The picture is of Brooke taking a quick break from the machine to get her face cleaned up - she sure does look pretty without the funny elephant mask!

Brooke is also improving on her feedings. She has been on continuous feedings for a long time because she wasn't tolerating large feedings. She is now back to 'bolus' feedings and is eating a meal of 40mL every 3 hours. So far she is tolerating the large feedings well. Brooke now weighs 4 pounds 14 ounces... almost 5 pounds! Huge!!

Many people have been asking us lately if we have any idea of when Brooke is coming home. Unfortunately the answer is no, not yet. They say that usually preemies come home around their due date and the girls were due on April 24th. But Brooke needs more time. She has to be able to do three things: breathe on her own, eat on her own, and manage her own temperature. She can manage her own temperature and is making small strides in the other two areas. She has three more steps to breathing on her own after the CPAP machine. After she is off of the oxygen, she will start working on eating from a bottle. It is apparently very hard for preemies to breathe, suck, and swallow at the same time so she won't try bottle feeding until her breathing is much stronger. So, we have a long way to go.

Brooke is truly moving slow and steady... but as we know, the tortoise wins the race.