Guess what we have been doing...playing! Sweet bear, you have been doing a lot more over the last 2 weeks. We have been working with you to strengthen your muscles. The two of us got down on the play mat today and you laid on your back and reached for all of the toys. This is amazing! You are strong and it is amazing that a little guy who wasn't able to move for two-and-a-half months of his life can do all of the things you can do. Grabbing for toys, kicking your legs, and this morning your nurse said you were on your belly trying to look around and almost turned over. Turning will be the next thing we work on. I will also try to see if you can tolerate sitting in your bumbo seat.
Your dad is halfway across the country now with the dogs. The last I checked he was in Idaho, but trying to make it to Portland by tonight. I am doing well here with you. Just trying to keep motivated to get us back to your daddy. Unfortunately mommy's health insurance denied paying to transport you by plane to Portland, but we are trying another route that will hopefully be more promising. Fingers crossed! I am optimisitic.
Moving day! Not for us but for your dad and brothers. They made it out with U-haul trailer in tow. Our house in Columbia is now cleared out and I will spend my first night with the Robinsons. I can't believe your daddy and I got everything packed with the help of your Grammy :)
You have been busy! Today you sat in your bouncy seat and then fell asleep. We decided to wake you up and play with you. Your physical therapist, 2 child life friends and I got you out of your crib and put you down on a floor mat and played for about 30 minutes and you loved it! You tolerated a diaper change in the middle. I think your favorite part was me sitting you up so you could turn your head around and look at all of your lady friends who came over to play. You smiled and laughed so hard. I think you had so much fun because we didn't even make you wear clothes... Silly Goose!
As always I absolutely hate leaving your bedside but I had the most wonderful day with you to make up for your daddy being gone :) hopefully not too much longer and you will be staring out the window in Portland and working on getting home.
Well Owen bear, your Grammy came to visit all the way from Oklahoma. Mainly to visit you but also to help your mommy and daddy pack so we can get your dad moved out in 3 days. The night she got here you gave her such a special treat. She got to hold you for the first time! After 4 months of patient waiting she got to hold you while you were smiling, cooing, laughing and kicking your big feet. What a treat! She absolutely loved it. Take a look.
-Mom
I just wanted to tell you to keep your chin up and I wanted to remind myself. What a journey. I really need to do a better job of keeping you up-to-date! I figure that I'm always holding you and talking to you, but I need to write it here so that you will remember when you are all grown up.
Well, you are still on CPAP oxygen through your nose (still off the ventilator!), and you still require a lot of nitric for your pulmonary hypertension. Not a whole lot of change since a month and a half ago when we got you off the vent. But wait...chin up! You are still off the vent :) I love you!
This week you need a little less oxygen when you are calm and happy. One thing that has been irritating you is a lot more spit-ups. The nurses and I all think all that acid coming up from your stomach is hurting you and you cry. So, what does mommy do but pester the doctors to try another medicine and ask the GI docs to come see you. What any mom would do I'm sure. I also think that all of those yucky medicines are upsetting your tummy. We will get it figured out.
Last week you were really fussy and we think its because you developed this swelling on the floor of your mouth right under your tongue that is probably a swollen/plugged salivary gland. I know, one more thing to add to the list of things that just won't leave you alone. So we gave you these lemon swabs which made your mouth water and unplugged the duct...and voilà...it was gone! On a much happier note, you have been smiling a lot. Laughing. Cooing. And moving all around. You took some milk from a pacifier trainer that we rigged with a tube through your passy hooked to a syringe with milk so we can control how much liquid you get. You took a whole 2 teaspoons! And for those who take these things for granted this is a huge accomplishment that you can even tolerate a pacifier, much less liquid going through it. Most babies lose this skill when they are intubated for 2 and 1/2 months of their lives. GOOD JOB! Other developments: Your daddy has been working hard in the ER here until he moves to Portland in 1 week to start his new job in the ER there. I can't tell you how much we are going to miss him. I have been working extra hard and I know you have to try to get us reunited. Several people at the hospital are trying to transport you there but of course it will take a while to get all of that organized. In the meantime I have another 5 days left of my residency and have been working extra hard to finish it so I can devote 100% of my attention to you. I will be staying with Uncle Spencer, Aunt Lauren, Parker and Jack until we can fly to be with your dad in Portland. Sweet Owen - I wish I could read this now with all of the entries for the next 5 years. I wish I could see into the future. But I can't---I can only imagine and hope. And hope I will! My heart hurts when each day I wonder how long you will be in the state you are now. How long will it be until I get to walk through those doors with my prize? You my dear! I want you to know that my tears are not for defeat but for hope and concern to make sure that I am doing everything I can to help you to heal and grow. This disease is relentless, but you have come so far. We have come so far. And I promise to show you true happiness in our lives together. Each day just seeing you and a smile when I get one gets me to the next day. I love you my Owen bear! -Mom
This is just a quick update... But we have had some hard days and some good days over the last week. You have gone up a little on your oxygen but your blood gases have been good. We think you might be teething because you had been irritable and very difficult to console. So of course since you are so fragile and you are in the NICU we did a few labs, an x-ray and an ultrasound of your chest just making sure to rule out anything bad that could be going on and that was all normal (well... Normal for you) You keep putting your whole hand in your mouth to suck on it and you have been loving your pacifier! We did increase the powdered formula that we put in your skimmed breast milk to increase the calories your are getting to make you nice and big but I think this might be causing you to spot up a few more times ??? We will see over the next few days. It pains your mommy but we really can't rely on plans. I love you so much and need to remember that you will get better just at your own pace. Most of the goals we had on my last blog are on temporary hold as we help you get past these last few tough days, but as always I promise to get you hone and make it up to you. I told all of the nurses that I want you spoiled by the time you come home and they are making their best efforts!
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.
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
-Mom
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!
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
Thursday, June 21, 2012
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.
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.
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
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
Monday, May 21, 2012
It took a team of 5 ( nurses and respiratory therapist) but they did it. Today was the first day I got to hold you sweet baby boy! What a wonderful day! These are the pictures of the whole process. Thank you so much to the nurses and RTs that made this possible today. You are now getting breast milk feeds through a tube in your tummy and your ventilator settings are very low. Good job sweetheart. Keep it up!
Today has been a big day for us! First of all
you are so brave and wonderful. You gave me the best mother's day
present in the world. You are off ECMO. They took out your cannulas
yesterday and you are no longer attached to that big machine and you
are able to use your lungs to get oxygen. You are so good.
Today
May 15 is the big day that you finally had your surgery. Dr. Camps is
your amazing surgeon. You had to have this surgery to move your liver
back into your belly and close the hole in your diaphragm for your lungs
to expand. It was a big surgery and your mom and dad were very anxious
and nervous. You did so well since you came off of the ECMO (bypass) machine!
We
anxiously awaited Dr. Camps to update us about your surgery with our
closest friends here in Columbia, SC. We waited with Hailey, Katie,
Spencer and Lauren. They helped distract me from all the worries I was
having and were very supportive. Dr. Camps spent about 3 hours doing the
surgery to fix you up. He came out with your wonderful nurse that day
Lynda and said that you did very well and everything went very
smoothly. Your daddy and I had the biggest smiles on our face since the
day you were born!
He said that you ended up having a
fairly large defect in the left side of your diaphragm and had to use a
synthetic patch called a GORE-TEX patch to repair the hole to keep the
chest and abdominal contents separated as they should be. He moved your
liver down which had been kinked and a small part of it looked a little
ratty but he was not worried since the liver is fairly good about
repairing itself. After moving that down he moved your stomach down
which was located right beside your heart making it a little difficult
to fill up when it was in the wrong location. Your little heart was
smashed over on the right side of your chest but after surgery moved
over to the left where it should be. After that Dr. Camps was looking
for your spleen which should be on the left side of your belly. He
looked around and found that is was somewhat enlarged behind your heart
in the right side of your chest. It is probably enlarged because of
congestion since it was smashed up in the wrong location. Wheeeewh!
After all of that he took out your appendix and closed up your belly
and put in a chest tube. This is the scar under you left lower rib. All
of that work through a now 3.5" incision.
You did an
amazing job! What a strong little guy! We are so proud! All 3 of us were
very strong during all of this and we are all together :) You have an
amazing team of doctors, surgeons, nurses and respiratory therapist. We
can't thank them enough!
You tolerated the surgery very
well and our next goal is to manage your pain and support you through
the next few days. Just after surgery as you can imagine is a very
critical time, but so far you are doing well. We still have you on the
conventional ventilator to help you breath and oxygenate your blood but
you are doing most of the work on your own!
I know all of our family and friends are awaiting pictures of you off of the ECMO
machine but we don't want to upset you too much or cause you any pain
at this time. I will see how you are doing either tomorrow or the next
day and we will try to do a photo shoot.
Even coming
from a family with two doctors as parents, hope, thoughts and prayers
did something for us. My hope for you and our love for each other is so
strong that it is getting us through these hurdles! I told all of your
doctors that the thing you needed most was the strength from our love
for you and here we are still loving each other! As it says in one of
the books I read you, "you are meant to do BIG things" and you will!
Oh how I love you! You are more amazing than I could have imagined. Today I decided to write to you because we need a little help. We have had some major ups and downs over the last week. Our major struggle was with all of the extra fluid you had making you look like a giant baby which really doesn't help the lungs. After we started you on a medicine called Lasix you really peed up a storm! You have dropped your body weight by around 50% over the last 4 days! On top of that Dr. Iskersky who is your doctor this week said that your x-ray showed quite a bit of your lungs actually inflated with air! That is more than I could have ever asked for!!!! And most of your bowel seems to be located in its rightful place in your belly and not your chest. You even had a big poop!! Even this really helped to clear out some room in your chest for your lungs to expand. We still have a long way to go but a few things have gone our way. You are still on ECMO which hasn't been ideal and we would like to wean you off. We met today with the baby doctors and surgeons and have a plan over the next few days to try to wean the ECMO. It is doing a lot of work for you that your lungs should be doing like putting oxygen into the blood. This is where we need our family and friends to really think about you and pray for you to respond!! There is a medicine that we can deliver to your lungs called nitric oxide that will help your oxygenation by decreasing the blood pressure in the blood vessels going to your lungs. They are also doing an ultrasound of your heart again today. The main goal we have right now is to get you off ECMO. It will be very difficult but your mommy and daddy have a lot of hope!
We come and visit you several times a day and you like when we give you your passy and read you some books. Your Grammy May sent you some books with a main character named "Owen"! He has a fuzzy yellow blanket that he takes everywhere. The new thing you like to torture the nurses with is pulling on your tubes and leads. Please try not to be so stubborn in the NICU. Just save that all up for me when you get home.
Here are some recent photos of you! You are so loved little angel. Our family has so much love! Our 3 year anniversary is tomorrow on May 9 and all of our love is for you!
The night you were born was
April 18th, 2012 at 11:36pm weighing a healthy 8lbs 7 oz and measuring
20" long. That morning I woke up at 5:00am because my blood sugar was
low. I did my usual routine trying not to wake up your dad and ran out
to the fridge for something sugary to drink. While standing at the door
my water broke much to my surprise and I had absolutely no idea what to
do. Your daddy and I drove to the hospital. I was there nearly all day
in labor. I was very nervous but mainly because I wanted to make sure
you would be okay. Finally close to midnight after pushing and pushing
my doctor and I decided that you were not in the right position and
possibly too big for a normal delivery, so we had to cut you out of my
belly...I know, gross! You were born at 11:36pm at 36 weeks and 6 days.
You just didn't want to officially be term and you didn't want to be
born during regular business hours! But your daddy and I were so so
happy! This was the beginning of our fight!
Dr. Rao
was the baby doctor on call that night and was right there every step of
the way after you blessed us with your presence. He came to give us an
update which was very hard for us to hear. He let us know that what we
had suspected before was a small hernia was much more serious. He said
your liver was taking up a lot of the space where your lungs should have
been and that they would not be able to simply use a ventilator to help
you breath. I was absolutely devastated. This news was completely
shocking to us! We at that time knew that we would have a very large
fight ahead of us. The doctors had decided it was safest for you to go
on a bypass machine called ECMO that puts oxygen into your blood without
having to use your lungs. This is very complicated and comes with a lot
of risk but it was to only option to keep you alive.
Dr.
Camps was the pediatric surgeon on that night and put the tubes in that
would take the blood from your heart and bypass your lungs. It was
successful and they worked all night long to improve the oxygenation of
your blood. You were very very sick! Your dad and I had a very hard time
with all that was going on. It was very emotional knowing that this was
the best day of our lives to get to meet you but we couldn't because
you were so fragile and sick.
The next day I got to
see your beautiful face! You had the most attention on you out of all of
the babies in the NICU. You had every machine available around your
bedside and underneath it all was this miracle called Owen! So beautiful
and handsome with light red hair. Beautiful skin, perfect fingers and
toes. Little bitty hands and little bitty feet, and oh, so long! 20". I
couldn't believe I was lugging you around for 8 months! No wonder I had
so much back pain!
I stayed in the hospital 4 days so I
could recover from my surgery and be close to you. I was in a lot of
pain but your dad wheeled me up to the NICU to see you. I immediately
started pumping so that when you would finally come home I would have
plenty of milk. You just look like you are going to be a big eater :) We
had a lot of visitors and a lot of people who really care about our
family. Your aunt Hailey took care of your mom and arranged for people
to come by and visit. Your uncle Spencer also brought snacks and visited
with your dad. Both sets of grandparents the May's and the Derrevere's
came all the way from Oklahoma to meet you and support your parents.
During
the first 2 weeks of your life which is where we are now we have been
in the fight of our lives. You are beautiful, strong and brave! We have
had our ups and downs on ECMO and the ventilator. You started to get
very puffy from all of the medicines and blood products you were
requiring. But its the little things that you give me everyday that keep
us going. You have done an amazing job peeing trying to get rid of all
of the extra fluid and you have done a great job keeping up your blood
pressure. We are just waiting to see if we can increase your vent
settings to expand your lungs and hopefully wean the ECMO to get you
ready for surgery. We need a miracle.
But we keep telling each other that our love for each other will get us
home together, for me to hold you and never put you down. I will never
leave your side. I can't wait to feed you, change your diaper and rock
you to sleep. We have been reading to you and really appreciate all of
the books everyone has brought us. Everyday I walk in to visit you I
have the biggest smile on my face and you bring me so much happiness.
Every minute I spend with you is amazing. I give you a lot of kisses and
love on you the entire time I am at your bedside. You are my Owen bear!
I LOVE, LOVE, LOVE you!
- Mom
Wednesday, April 11, 2012
Sweetheart,
I am absolutely in love with you! I love talking and singing to you and touching your little feet when you kick! I can't believe you are already at 36 weeks! We are 1 week away from term which makes me feel so much better. Every Monday we go in to the doctor to make sure you are active, breathing and keeping up your heart rate. Over the last few weeks we have behaved and my contractions haven't been too much of a problem. I know you are growing and are a big guy in there because my back is starting to hurt and my belly is hard to miss. Everyone keeps asking about how we are doing and everyone who doesn't already know guesses that you will be a boy.
On March 24th Katie and Hailey threw me an amazing baby shower. We had really good homemade food and a lot of the girls that I work with came out to celebrate. You were the star of the show! You have a lot of cute baby gear waiting for you when you come home and quite a few of the items had wiener dogs on them like a quilt and some very cute clothing. I have been reading you some books that we got as gifts. Here are a few pictures
Next week I will get to see how much you weigh. I know your original due date was May 10th, but unless you decide to pick your birthday on your own Dr. Sims and I think it will be safest to schedule you to be born on May 1st. As we already know you like to do things your own way so I will be happy no matter which day you chose :) As long as you promise to fight. Keep practicing your breathing! We need good strong lungs before you are born! I will be with you to help every step of the way until we come home from the hospital. This will be the biggest fight of our lives and I know we can do it together Owen bear.
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