Sweet Owen,
I just got back from the NICU to visit. It just amazes me that you are such a fighter and that we ended up with a red head when we joked about it so much before you were born. Your Dad and I have officially graduated from our residencies but I still have about 7 weeks to make up from spending time off with you (worth every minute!!!) You are still on the ventilator but a little more stable then last week. You are doing a good job working up on your feeds which are now my regular breast milk :) Dr. Watson wanted to trial some full fat feeds (which apparently I have some very fatty milk) to test the fluid draining from your chest tube to see if you really do have this chylothorax thing. I know! Very confusing, but worth the trial because you could really benefit from some good nutrition and antibodies from my breast milk! And being exposed to all of those sick kids during my residency probably really increased my immunity!
You should know that I try to do the things mommy's are supposed to do like check your temperature and change your diaper. It is not very nice when you decide to poop mid change! I can't fault you though. You peed all over your nurse and I today because we gave you lasix, the medicine that makes you pee right before I attempted to change your diaper. You soaked through 3 diapers and the sheets in the process. I am sorry baby bear. You can get me back however you need, just keep on being the strong boy you are!
Every time I come to visit I read to you so you can hear my voice and know that I am there for you. I have been getting some of the small board books (the ones with a lot of words, so I can spend more time reading to you). If anyone is wondering what to do for you, this is our thing and I could use a few more books so I don't get tired of reading the same ones over and over :)
I love you when you are doing well and I love you when we are on the roller coaster of this diaphragmatic hernia. I know in my heart that your dad and I are doing the best that anyone can do to be there for you and give you our love. Just know that it will be worth it baby bear to come home to us! I have no hesitation to say that we LOVE you more than any other baby has been loved before. I know that this will get you and our family through this rough patch to the joy that lies ahead.
Love,
Mom
Thursday, June 14, 2012
Owen's Milk
Owen has something called a chylothorax. He has a disruption in his thoracic duct in his chest that helps to absorb certain fats that he gets from milk. This has been accumulating in his chest cavity and drains into his chest tube. The treatment is changing his diet to only include medium chain fats for a while until he heals. So this is why he can't have my breast milk. As I wrote before since this is the only thing I can do to help him it has been very difficult. Breast milk helps fight infection, helps him grow and heal from his surgery unlike formula.
I have researched this issue and have come up with a very good solution. Several babies have done very well after their mothers have skimmed breast milk to get rid of the fat and replace it with the medium chain fats. I know it sounds crazy but several studies are out there. I had already planned to donate breast milk to Mother's Milk Bank at Austin because I now have 2 months worth saved up in a deep freezer. I went through screening and was approved. So I asked them if they skimmed milk and they do! When Owen is able to restart his feeds I will now be giving him my breast milk that has been skimmed from the milk bank. This is a HUGE relief for me! Now I am able to help him with the best medicine as well as other premies in the NICU who need donor breast milk.
I have researched this issue and have come up with a very good solution. Several babies have done very well after their mothers have skimmed breast milk to get rid of the fat and replace it with the medium chain fats. I know it sounds crazy but several studies are out there. I had already planned to donate breast milk to Mother's Milk Bank at Austin because I now have 2 months worth saved up in a deep freezer. I went through screening and was approved. So I asked them if they skimmed milk and they do! When Owen is able to restart his feeds I will now be giving him my breast milk that has been skimmed from the milk bank. This is a HUGE relief for me! Now I am able to help him with the best medicine as well as other premies in the NICU who need donor breast milk.
Tuesday, June 12, 2012
Prayer request
Oh sweetheart! We got ourselves into a pickle! You are so strong but you still need the doctors help so much. Last night we were visiting you to read you a bedtime story and walked into a hot mess. You're not doing very well right now on the ventilator. Dr. Rao thinks you had a pulmonary hypertension crisis. This is why you are requiring a lot of oxygen and help from the breathing machines. They also had to start you on a medicine called nitric oxide to decrease the blood pressure in your pulmonary arteries. You are now on medicines to increase your blood pressure and steroids like when you were on ECMO because for some reason you just can't keep it up. The x-rays look good and it doesn't appear to be anything wrong with your lungs. Sometimes bad bacteria can infect babies and cause these problems so they started you on antibiotics. You just look so uncomfortable and it pains me to see you like this!
I was up all night worrying about you and feel completely helpless that I can't help you myself. When I visited you several times today I was reminded of how strong you are and you are doing this for me. I have to continue to be strong for you and I will always have hope for you. You aren't giving up and absolutely no one will give up on you baby bear. I am a desperate momma and love you so much. I just want everyone to always think about you, hope for you and pray for you as best as they can because we could really use it right now. Hang in there brave little angel, I promise it will be worth it to be with your daddy and I!
LOVE, LOVE, LOVE
-Mom
I was up all night worrying about you and feel completely helpless that I can't help you myself. When I visited you several times today I was reminded of how strong you are and you are doing this for me. I have to continue to be strong for you and I will always have hope for you. You aren't giving up and absolutely no one will give up on you baby bear. I am a desperate momma and love you so much. I just want everyone to always think about you, hope for you and pray for you as best as they can because we could really use it right now. Hang in there brave little angel, I promise it will be worth it to be with your daddy and I!
LOVE, LOVE, LOVE
-Mom
Sunday, June 10, 2012
Owen Bear,
Sweetheart, I have to apologize for not writing in so long! I promise I have been by your bedside every day and night reading to you and giving you kisses! You are now 8 weeks old. Wow. I can't believe it has been that long. I feel so bad but I have been very worried about you and that is why I haven't been able to sit down and write to you and all of the people following along our journey. It is hard on the days when I don't have good news to tell you but I know that you keep fighting and are very strong! Sometimes I feel bad that you are so much stronger than me, though when I love on you, you know I am there for you.
Last week, we had a tough week. We tried to take out your chest tube but the fluid in your chest built back up making it hard for you to breath. Dr. Camps put another one back in and you seemed to do much better. It is odd though that you are still producing so much fluid. When the doctors checked the fluid they thought it looked like you developed something called a chylothorax. It is caused by the disruption of a duct in your chest that drains lymphatics and fat. So, this means you can't have my breastmilk because of the fat it contains. They have started you on a formula called Enfaport. This is probably the hardest news for me because I have been working so hard to make you the best milk and it is the only thing I know to do for you and now I can't because it is the thing making you sick. You are not getting all of the good stuff like antibodies and nutrients that breastmilk provides and that is so upsetting to me.
Your ventilator settings are stable but you like to get mad when we change your diaper or don't position you in just the right way and decide to desat. You calm down but you know how to let us know what you don't like. The blood pressure in the arteries going to your lungs is still high and we are trying to get the medicines right to lower that.
At the beginning of last week you had a lot of trouble keeping your feeds down when we fed you through a tube in your mouth. But all of a sudden you started to tolerate it better when we made the feeds slowly trickle into your belly. Right now we are still working up on the feeds in hope of stopping your IV nutrition.
We also had a set back over last weekend because you became swollen again. Mommy was very upset and the doctors ended up putting you back on the medicine that makes get rid of extra fluid. You look much better this week! You always look so handsome but much better today!
2 days ago you had some wonderful nurses who made it possible for us to hold you again. This was your daddy's first time to hold you and my second! It was wonderful! We stared into your eyes and you loved it so much! You also got moved to a big boy crib. Of course we had to decorate it with a new mobile and a mirror so you can see how handsome you are.
I promise to not take this long to write to you again! While I am always trying to be strong for you as you are strong for me it just tears me up to know that you can't be where you belong right now....at home with your family. You are an amazing little guy and a true miracle. We must be patient though and we will get what we deserve and that is each other! You deserve a family with this much love and that is what you will always have. Be strong Owen bear. WE LOVE YOU!
-Mom
Sweetheart, I have to apologize for not writing in so long! I promise I have been by your bedside every day and night reading to you and giving you kisses! You are now 8 weeks old. Wow. I can't believe it has been that long. I feel so bad but I have been very worried about you and that is why I haven't been able to sit down and write to you and all of the people following along our journey. It is hard on the days when I don't have good news to tell you but I know that you keep fighting and are very strong! Sometimes I feel bad that you are so much stronger than me, though when I love on you, you know I am there for you.
Last week, we had a tough week. We tried to take out your chest tube but the fluid in your chest built back up making it hard for you to breath. Dr. Camps put another one back in and you seemed to do much better. It is odd though that you are still producing so much fluid. When the doctors checked the fluid they thought it looked like you developed something called a chylothorax. It is caused by the disruption of a duct in your chest that drains lymphatics and fat. So, this means you can't have my breastmilk because of the fat it contains. They have started you on a formula called Enfaport. This is probably the hardest news for me because I have been working so hard to make you the best milk and it is the only thing I know to do for you and now I can't because it is the thing making you sick. You are not getting all of the good stuff like antibodies and nutrients that breastmilk provides and that is so upsetting to me.
Your ventilator settings are stable but you like to get mad when we change your diaper or don't position you in just the right way and decide to desat. You calm down but you know how to let us know what you don't like. The blood pressure in the arteries going to your lungs is still high and we are trying to get the medicines right to lower that.
At the beginning of last week you had a lot of trouble keeping your feeds down when we fed you through a tube in your mouth. But all of a sudden you started to tolerate it better when we made the feeds slowly trickle into your belly. Right now we are still working up on the feeds in hope of stopping your IV nutrition.
We also had a set back over last weekend because you became swollen again. Mommy was very upset and the doctors ended up putting you back on the medicine that makes get rid of extra fluid. You look much better this week! You always look so handsome but much better today!
2 days ago you had some wonderful nurses who made it possible for us to hold you again. This was your daddy's first time to hold you and my second! It was wonderful! We stared into your eyes and you loved it so much! You also got moved to a big boy crib. Of course we had to decorate it with a new mobile and a mirror so you can see how handsome you are.
I promise to not take this long to write to you again! While I am always trying to be strong for you as you are strong for me it just tears me up to know that you can't be where you belong right now....at home with your family. You are an amazing little guy and a true miracle. We must be patient though and we will get what we deserve and that is each other! You deserve a family with this much love and that is what you will always have. Be strong Owen bear. WE LOVE YOU!
-Mom
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