Home life

Owen,

Sorry little bear for not posting in a while. I really haven't had time to sit down to write to you since we left South Carolina. As you know our trip went very well. On September 11 we loaded up on a medical transport plane with a nurse and respiratory therapist and made the 7 hour flight with a fuel stop in North Platte, Nebraska and arrived safe and sound in Portland, Oregon at the Doernbecher Children's hospital pediatric intensive care unit. Before we left all of your admirers in Columbia gave us a nice send off with about 50 people watching us as we left with lots of well wishes and a few gifts, hugs and tears. The transport team said that was the largest send off they had ever seen.  When we arrived we were whisked to the PICU and you got your very own room. You were on CPAP when we left South Carolina, but the machine they had here made you wear this silly cap and annoying tubes in front of your face so we went ahead and switched you to less support with oxygen through a high flow nasal cannula. We spent our first night together and it was amazing. I didn't have to feel any guilt about leaving you and I knew what was going on with you the entire stay at Doernbecher, because I got to stay with you. Parents even got to stay through checkout and were included in the daily rounds (which you know your mom had a lot to say and of course it was welcomed by the doctors and the team).

To sum up our stay in the PICU, we were only there for 7 days because we were able to quickly wean you off of the high flow nasal cannula to a regular nasal cannula. You have done so well. We also quickly switched you to my full fat breast milk without any trouble. They were able to get rid of your sedation medications and a few others so that I could handle your regimen a little better at home. We saw all of the subspecialist including the heart doctors, lung doctors, GI doctors, audiologist to test your hearing, physical therapy, speech therapy and a dietician. We also eventually saw the craniofacial plastic surgeon who deals with babies with funny shaped heads and she said she wouldn't do anything but wait and see about the bump on your head. She said you were a fuzzy bear and handsome! After spending 7 days in the PICU we were moved to the regular floor where we weaned your oxygen to 1/2 liter. This is amazing!!! I thought the best case scenario would be getting out of the hospital in Portland after a month and look at us now...only 10 days there!!

On September 21 we got the discharge orders that you could go home. Wheeewh! It has been such a long journey in the hospital but we have just started our trial and error journey at home. To all of the parents out there rasing a 5 month old. they are busy!!! Owen adds a few more challenges. Our home schedule is at times overwhelming and for lack of a better word exhausting! You are on 3/4L oxygen at home which means you have an oxygen tubing leash that is 50 ft long so that I can take you from room to room while hooked up to the oxygen concentrater. At night we have you hooked up to a pulse ox machine that monitors your oxygen saturation and while annoying at times alarms at us when your sats are low. This is usually because you are crafty and have pulled the nasal cannula prongs out of your nose. Sweet bear you still need your oxygen but hopefully not too much longer. Because you were on the ventilators so long and only had traumatic things happening in and arround your mouth you have not acquired the skill of eating by mouth. We are working VERY HARD on this but trying to make it as pleasant as we can. Sooo... mommy has to feed you her breast milk through a nasogastric tube that goes through your nose to your tummy. And yes...if it comes out we have to put it back in ourselves which causes me more pain than you can imagine to make you cry and gag. But it is what is keeping you well nourished! I give you 4 feeds of 3.5 ounces during the day and give you continuous feeds of 1.5 ounces per hour through the night. On top of that I have to pump your milk and do all of the dishes that go along with this process. You are still on a handful of medications, mostly for your reflux, pulomonary hypertension, vitamins and and inhaled medicine for your lungs.

That is just the purely medical stuff your dad and I have to do every day. I also want to make sure that you stay on track with your development. The speech therapist and physical therapist in the hospital were very impressed with your development considering the challenges you have faced in your life. We are now trying to offer you a bottle with about 1 to 2 teaspoons of milk with each of your 4 feeds during the day. You are improving more and more each day but we will have to be very very patient with this process as it doesn't just happen overnight. I usually sit you up in my arms or the bumbo chair and you watch TV and talk and bite/suck on the bottle for about 20-30 mins. It is very challenging but I know eventually you will get it! We do lots of tummy time and playing to hopefully strengthen your muscles. Your dad says your legs are already too strong because when we change your diaper we have to wrestle you down to get the job done. Eventually we will have an early interventionist and all of the therapies come out to our house. We are even going to a feeding clinic appointment in a week which has all of the speech therapist, developmental specialist and dieticians in one clinic.

On tops of all of this we have a 5 month old at home! Holy cow! The lack of sleep and pure exhaustion of residency cannot compare. We LOVE you don't get me wrong, but your sleep schedule doesn't coordinate with ours and you have a hard time communicating with us exactly what is wrong. Most parents just worry about whether you need to be changed or your hungry or tired. We have to worry about those too as well and your health and how you are breathing. I hope that we are doing a good job. I know we are doing our best and trying very hard. We don't really have any respite or help out here, but your Grammy and Grandpa May are coming out the first week of October to try to help us out. They have been amazing to us!!!! We really weren't completely prepared for you to come home as soon as you did. We didn't have a crib or a car or a lot of the neccessities for a baby at home (like diapers etc...) but between me running around and your grandparents helping us out with the crib and finding a nice used car to tide us over we were mostly prepared for your arrival.

Now your brothers, Toby and Henry, on th other hand didn't know what they had coming. While they like that I stay home all day long, most of my attention is not directed their way! Toby has become very fascinated and protective of you especially while you are crying. Henry wants nothing to do with you because he is no longer the baby in the family. I'm sure it will take awhile for them to adjust but they haven't been aggressive or anything like that.

Well, its about time for you to wake up from your mid afternoon nap, so I have to run. Keep up the good work and hopefully we can keep up with you! I just hope that I can be as good of a mother as you have been a son to me. While exhausting I will never give up Owen bear. We LOVE you!!!

-Mom

Flight Video

Your flight suit!

Melissa was one of your primary nurses in the NICU

We are all outside in the courtyard at Doernbecher Hospital

Portland!

I am so sorry to keep all of your followers waiting, but as you know we made it to Portland safe and sound! We boarded the flight in South Carolina yesterday and 6.5 hours later arrived in your new room. Most important is the much awaited reunion with your daddy! He was so excited to see us. You did a lot of "firsts" yesterday including going out of room 3, outside, 2 ambulance rides, flying, Portland, your own room and my favorite, our first night together :) :) :) and for everyone who is interested we have video and pictures of it all. Here are a few pictures and I will add video after we settle in to our new home.

-Mom

Travel plans :)

Thanks to your strong headed, hard working momma our family is going to be together again. Sooo relieved! I'll keep it short, but I appealed our insurance denial with my health insurance plan and they have now agreed to cover our transport to Doernbecher Children's Pediatric Intensive care unit in Portland. Right now we are on the books for this Tuesday and I even get to go with you! We are so incredibly happy and relieved:) I will have another letter to you with lots of pictures soon after we get there.

Love you!
-Mom

Rub a dub dub!

Bath Time!

No nitric, no Broviac (special central IV)! We had fun in the whale tub last night with the full spa treatment. Bath, lotion, new outfit and cuddle time. You were so tired after, but had a great big smile while you were sleeping. And of course to embarrass you we have it all on video!

Love one happy and proud mommy!

(caution: big boy parts are showing in this video)

Way to go Little Bear!

Owen,

You make your mommy and daddy so proud! I just wanted to tell of course that I extra love you and that you have done some pretty cool things this week. You are turning over my man! We have to keep close tabs on you! We are having a good time on your play mat. You are swatting at the toys. We weighed you last night and you are 15 lbs 14oz. Big boy!! But that puts you at the 50th percentile for your age.. So right on track ( I credit my breast milk that we are now giving you). This week you will get half and half... Literally, half skim breast milk and half mommy's super fatty milk. I hope you like it and hope it helps us get closer to going home. You are still on CPAP which is fine by me because we have been able to wean down the inhaled medicine, nitric, that helps with the high blood pressure in your lungs, so you will be off tomorrow. Everyone cross your fingers because if you don't need any IV medicines today, we will have the surgeons come pull out your central line, called a broviac tomorrow! This is why you have a scar in your right thigh. This is a huge step because there will be no risk for infections for your mommy to worry about. Being the doctor mom that I am, I had them give your first set of immunizations this week and you tolerated them so well! I wanted to make sure you were protected before we moved you to the PICU in Portland.

On the home front, I am doing well and well cared for at the Robinson's. Your daddy really misses us and is trying to get our house set up in prep for us to move first to the hospital and then eventually home. He has told me it is beautiful there and we have a lot of activities in store for us when we come home! He started his new job as a real ER doctor and is doing a great job and so far enjoying it.
Your family really loves you and this is why mommy is working all the time to get us both to Portland to see your dad! So far we have gone through the run around of my insurance denying transport but we are further along and are waiting to hear from Oregon Health Sciences University/ Doernbecher hospital about whether we are approved and funded for the transfer by their PANDA transport team using a fixed- wing plane. We should hear back with approval and a date sometime next week after Labor Day of course and once that happens we are already packed and ready to go to be with your dad and wiener dog brothers!! I can't wait!!!

I love you my sweet boy!
-Mom

Playing around

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.

Love you!
-Mom

Playing on your play mat!

Moving day

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.

Hugs and kisses!
-Mom

Grammy!

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

Chin up!

Hey Little Bear!

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

Sleepy Time

Little bear,

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!

You are my love! Hang in there!
Love Mom

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.

Love,
-Mom

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
-Mom

Happy 4th of July!

Owen,

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

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

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

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.

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

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

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!