Saturday, July 28, 2012

Recent events

Little Bear,

This week has been good. Today I held you in my arms for 2 hours straight and it warmed my heart so much. I think the fact that we have been able to spend more time together has helped you heal. You have been doing well and not requiring quite as much oxygen, although every time you get upset you need just a little more. I always visit with you twice a day and wish I could spend all day watching you. I do struggle with feeling guilty when I leave the hospital but I know that you are being well cared for and spoiled up there in the NICU which you absolutely deserve. Every night you get a bath and weighed and tonight you had the most handsome outfit on that I got for you with turtles and ducks on it. You are getting so big and now wear 3-6 month old clothes.

I always worry about you even when I should just celebrate how far we have come. Your dad has been so supportive and mommy's friends keep tabs on me to make sure I stay sane during your stay in the hospital. I find that it is somehow harder to cope with the small bumps in the road now that you have been off the ventilator for almost 1 month. You of course are brave and strong and continue to amaze us all!

Your recent amazing accomplishments:
1. You smile at us and make a quiet giggling sound when you are happy
2. You have been able to lift your head and move it well from one side to the other and have very good head control considering all the time you spent on your back and sedated.
3. You have excellent range of motion of your arms and legs and have shown us that you can army crawl around your crib
4. We found a new way to calm your down when you are in need of a position change by sitting you upright, which you love and tolerate so well.
5. Last week when you had some trouble you stopped wanting to take your pacifier, but this week you have been much better and more frequently find it soothing to have it in your mouth. This is a skill you have to now learn because for so long you only had painful things going in your mouth. You will also put your hand in your mouth and munch on it to soothe yourself.
6. You are not as swollen as you were last week thanks to adding a couple of medicines that help you get rid of that bad extra fluid.
7. You like to sit in the bouncer we got for you which automatically bounces you and plays music and nature sounds to entertain you.
8. Since we started the fat free breastmilk to treat the chylothorax you have not reaccumulated fluid in your chest and we double checked last week with an ultrasound.

This week we are going to see if we can try to wean the nitric medicine which helps with your pulmonary hypertension. The things we need to hope for are weaning the nitric oxide and after that the CPAP. These of course will take a while. Then we will try to see if you will tolerate my breast milk without reaccumulating the fluid in your chest. We will likely try that in 3 weeks if you are doing well from a breathing standpoint. Until then I am still donating my milk that you can't use right now to the tiny premature babies. Last week I donated 4 gallons .... can you believe that?

Upcoming events for our family--- First your dad started his first real doctor job here in Columbia moonlighting and did very well! He will do this until he starts his new ER job in Portland which will be on August 28. This means that he will have to move up there on August 21 with Toby and Henry and all of our stuff. But don't worry sweetheart, I will stay here with you and will be staying with friends. Our next goal will be to see if we might be able to get you to Portland by transferring you up there or if that isn't possible I will just wait here with you until you are good and ready to come home.

We just hope and ask for prayers and thoughts to get us to a point to where our family can be reunited with all 3 of us together at home in Portland. It will happen baby bear and we are patient. I love you and as always miss you even though I just left your side 1 hour ago. I promise you will be spoiled with attention and love when you come home to make up for the less than ideal set up we have now. Just remember that we will be together and we deserve each other and feel so lucky to have you.


Wednesday, July 18, 2012

3 months!

Owen Bear,

First of all....Happy 3 month Birthday sweetheart! Its been amazing to see you be brave and strong and get past all of these milestones that will ultimately end with us happy and at home with you! Don't worry we will continue to fight for you and be by your side not only now but throughout your life. It is truly amazing that we have made it to where you are now but I never lose hope baby bear. Never!

It was sort of a rough weekend for us. We had a bump in the road with you requiring a little more help breathing. For some reason you started requiring more oxygen and we had to go up on your CPAP settings after a wonderful week last week of minimal support. It is hard for your mommy to see you do so well and then have to suffer through these set backs. We sometimes forget that you are so fragile and I think that we were trying to move forward way too fast by getting rid of your Lasix, steroids, nitric and going down on your CPAP settings last week which was only one week since you had been extubated. So now we are back up on CPAP and nitric and we have started back on Lasix and another medicine to help you get rid of all of your extra fluid. You really started to swell up around your face and chest again which I know can't be easy to breath with that extra weight. Just ask your dad, I was soooo worried and had to talk to Dr. Rao several times to make sure we were doing everything we can to keep you off the vent.

And you continue to amaze us and fight hard! You have not needed to be reintubated with your breathing tube. Your x-rays look good and your blood gases are getting better. Your nurse last night Jennifer said you didn't require as much oxygen which is good for your lungs and means that you are not continuing to deteriorate. The blood pressure in your pulmonary arteries just went sky high during this episode and you just had no reserve to recover. But I will take the small victories any day! Keep it up brave Owen bear! And I will continue to be strong for you.

What gets me through these times is your strength, your blue eyes and soft red hair, you following your daddy's voice when he reads to you, when you lock your eyes on me and look so happy in my arms and that I imagine the day when I get to walk through those doors of the NICU with MY Owen a happy mommy and when I imagine you running around the house happy and playful and that I know this test of my strength and emotions and love for you will all be rewarded with YOU!

I LOVE YOU!... you brave little 3 month old angel

Wednesday, July 4, 2012

Happy 4th of July!


I LOVE YOU! Best 4th of July ever!!!!! Today was a big day for us when you got your breathing tube out and are doing fine on oxygen through CPAP in you nose! WOW! You came off ECMO on May 15 and have come off the ventilator on July 4th. Keep up the good work brave angel! You have made us so proud. This was a huge day for our family. Take a look!

Love, Mom

Sunday, July 1, 2012

Baby steps

Owen Bear,

You have had a pretty good week. You are doing better with your breathing and ventilator settings. Your chest tube stopped draining after we changed you to the skimmed breast milk and after starting a medicine called Octreotide. Dr. Camps pulled the chest tube out 2 days ago and so far you have tolerated it. You are also tolerating your feeds that you are getting through the feeding tube in your mouth. You get the special fat free breast milk with some formula powder called Monogen. Because this recipe is low in essential fatty acids we also have to give you walnut oil and flax seed oil. I KNOW! But it will make you stronger and help build your immune system. This is all the work that I did over the last few weeks paying off!

Dr. Watson has been trying to get you to lose a lot of the extra fluid you have by using Lasix and it has worked like a charm. Your facial features are much more defined and you are looking more and more like your dad every day...which makes me fall in love with you even more. Your red hair is really standing out with your red eye brows and blue eyes. I love it!

I am taking a big step tomorrow and will return to work. I am very excited but very nervous because I want to make sure I am there when you need me. I am going to work on a sedation elective, which means I learn how to make sure kiddos don't hurt when they need procedures. Everyone has been very understanding and flexible for us and they are going to make sure that I am able to come visit you and talk to the doctors who are taking care of you. I won't be far away! Just down the hall.

Every time I visit you look up at me and I love on you. You look so calm and at ease when your dad and I are there. You also have a mobile that you watch and your crib is well stocked with stuffed animals (bunny, alligator, llama llama red pajama and dachshund).

Keep it up brave Owen bear! A lot of love is with you while you are in the hospital and will be waiting for you when you come home. Thanks to all of your family and friends who have stocked our library.

Here are some pictures and a video of my sweet love

Love, Mom