You are now 8 months old and finally growing like a weed. We have you gaining weight, which is so important in order for your lungs and pulmonary vessels to grow. You are on less oxygen. Only 1/4 of a liter. We still have you on the feeding tube through your nose that bypasses the stomach called the NJ tube. This is the reason you are gaining weight, because you can actually keep your milk down (well my hard earned milk). You have been gaining so many milestones and are catching up! You are such a boy and are starting to babble like crazy. Every once in awhile I hear a "ma" "na" and lots of "gaga, googoos". I have to say you are the loudest with your dad. I guess boys are just loud. You have teeth!!! That's right ...2 teeth on the bottom and another on the bottom about to pop through. In the last 2 weeks you have spent more time on your tummy and prefer to sleep on your belly. Slowly but surely you are becoming more mobile, so I'm having to start to baby proof to keep you where I want you and out of things.
We have had all of your doctors appointments including surgery, cardiology, pulmonology, pediatrician and feeding clinic and you have more than impressed all of your doctors. They are all very happy with how you are improving. I still give you medicines for reflux, pulmonary hypertension, a medicine that makes you get rid of extra fluid and an inhaler. We will keep these going until you are able to wean off oxygen. Oxygen is so much more of a hassle than a few extra medicines. The plan for now is to do the surgery for the g-tube on January 22 if everything is perfect and you are gaining weight. Its so important that you be in tip top shape because it is so risky to put you to sleep for the procedure. I am very confident in you and your surgeon so I put my trust in him to make sure you are safe during this much needed surgery. Once we have the g-tube we will be able to make a lot more progress on your feeding since there won't be any tubes in the way and hopefully you won't be vomiting quite as much.
Your Nanna and Papa Derrevere were here last week to visit and have an early holiday. They got to go out with your dad and explore a little of Portland including Powell's books, the Pearl district, several galleries, and of course the food carts. We had a couple of early Christmas dinners and got to open presents. You got your very own Papa Derrevere designed "OWEN" letters that look amazing on the wall above your crib. The last evening they were here we loaded you up in the truck and drove to look at the amazing Christmas light display on the houses on Peacock Lane. So much fun, because as you know I love, love, love going to look at Christmas lights!
Papa Derrevere
Nanna Derrevere
Christmas lights on Peacock Lane
Your name above your crib
Christmas is almost here and it makes me remember last Christmas when I found out you had CDH. All your dad and I could think about prior to that ultrasound was whether you were going to be a boy or girl. A whole year later we have 100% BOY. We had no idea how this year was going to turn out and what challenges we would face, but you are here and happy and thriving. What a miracle! I am the luckiest momma ever! I mean it! You will definitely get a little more on my feelings for you when you turn a year old and how much of a miracle that will be. Grammy and Grandpa May will be here in a couple of days and I just can't wait. They will get here on Christmas and we are going to have a lot of fun!
We made a special visit to Santa today. Very special for our whole family! We have made it to your first Christmas in excellent condition. I have been getting out of the house with you a little more recently, so when your dad had a day off we decided to go give Santa your Christmas list and get you on his "Nice" list! Tomorrow we will go get our Christmas tree and hopefully get it decorated when your grandparents come into town. We also have a Christmas party for your dad's work that we will hopefully get to attend. A lot of fun and exciting things that are giving us a little freedom. My wish for you this Christmas is for you to no longer have your oxygen and eating some foods by next Christmas. That would be an amazing present for me. We will see what this year brings. I'm sure many good things!
Wow...they are flying by. Since my last post on your 6 month birthday we have come home from the hospital. Such a happy day. We are getting back into the groove of you daily care and of course trying to make you happy every second of the day. Today you are much much more active. You are rolling over more from your front side to your back side. You are grabbing rattles and toys and shaking them then moving them back and forth from hand to hand. You are able to stand up while we balance you. When we play with your activity gym you swat at all of the toys and grab them. We are now trying to find more educational shows for you to watch instead of the shows mom and dad like to watch. You are gaining weight!!!! A whole 16lbs 11.5oz. We went to a follow-up visit with your new surgeon Dr. Krishnawami and he said everything was going well and our goal is to let you grow for at least another 6-8 weeks before we revisit the idea of getting you a G-tube to feed you. Until then, as you can see in the picture, you have a special tube called an NJ (nasojejunal) tube that bypasses the stomach to have a way to keep down your milk without fear of you throwing it up. That means more calories down and more weight :) Unfortunately you still spit-up the yucky juices in your stomach, but not nearly as bad as before we went in the hospital. We now feed you continuously through this tube with my breast milk and added calories with a formula called Duocal. Its working!
Your oxygen needs went down shortly after you had the heart catheterization to close your PDA. We did some labs on the last day of your hospitalization and it showed that your heart function was drastically better and back to normal function...Go Owen! You are on only 1/2 a liter of oxygen.
In other news, your dad and I have been overwhelmed with your care which is a 24/7 job (without any weekends). We love you and thought it would be good for all of us if we got someone to help us. We as you know have absolutely no support system since our move to Portland which makes us feel completely isolated at home. So we met Jilene who will be helping me on the days that daddy is at work. She is absolutely wonderful and up to the task of learning all that is involved in your care. We are lucky.
We are working on going on rides in the car in your car seat which is something you have to now learn since you spent so much time in a crib in the NICU. And we are working on going on walks in the stroller.
I love you little bear!!!
What I love about you:
1. Your big smile at me every morning when you wake up
2. The happiness you get when we stand you up and make silly faces at you
3. Your red hair! (which I can't figure out how to brush since it all sticks up)
4. Bath time
5. The boy sounds you make
6. Don't tell your dad.....the fact that sometimes you just need your mommy to calm you down.
Keep fighting my love...you are so strong and your life is and will be beautiful!
We finally had the chance to take your official 6 month old pictures. Not professional but still very handsome I must say. We gave you and bath, brushed your hair and well just take a look! Handsome like your daddy!
Your first Halloween!!! Well, it was in the hospital but still a blast for us! (and you too!) We decided to dress you up like your brothers as a doggy! And oh, you were so cute!! Everyone loved the costume. I have pictures and a video to prove it my love. We are still waiting for your doctors to come up with a plan to help you tolerate your feeds so we can start working on getting you to take some stuff by mouth. It is so frustrating to be on this side of medicine and leave it up to someone else to come up with a plan. I have to continue to be your mom and your advocate, and I will never stop pushing for progress my dear. You are amazing and I am so thankful for you!
Mom here, just worrying as usual. To get you up to speed, since being back in the hospital we have had a few developments. After starting the lasix and another medicine to get all of that extra fluid off your lungs it has really helped and got you back down on your oxygen. You really had a hard time keeping down your feeds so we put a special feeding tube down your nose with the help of x-rays that goes a little further than your tummy so we could bypass your stomach all together. It worked for 2 days until you were able to get your little thumb around the tube an yank it out. You are on IV fluids as we speak. All of these measures were to get you in tip top shape for the heart cath study that was done today.
Well, my man, we are back to doing things the hard way. Although I have to remind myself of just where you came from, but we have hit another small bump in the road.
Let me preface with, you are just fine and safe in the very skilled hands in the PICU. We are here for observation because during your cath, the sedation among other things caused you not to breath a deep as usual and you are not expanding your lungs as much as we would like. During the cath Dr. Armsby measured that the pressures in your pulmonary artery were higher than we thought (pulmonary hypertension) but they really improved when she blocked the extra vessel, the PDA. So... She was able to close it... And congratulations Owen Bear, you got the record for the largest PDA she has closed and she has been doing this for a long time. After that happened, you got a little behind on breathing because of sedation and fluids they gave you during the procedure. That made you have a little pulmonary hypertension crisis so the pressure went up for a little while. They felt that you needed some extra help breathing with CPAP overnight and close observation in the PICU.
The nurses remember you (and me) from the last time we were here and have been very accommodating and reassuring to your mom. We are going to do an x-ray and an echo in the morning to see if we fixed all of the things that made your pressures go up, and then go from there.
It's a fight every step of the way, but a fight you keep winning! Thank you for being strong little bear! Love you!
We made it a month out, but unfortunately your doctors felt that you needed to go back in today for a tune up. I'm disappointed but fortunately this is mainly to sort things out with your medical care. A couple of days ago you started to need more oxygen going up from your usual 1 liter to 1.5 liters. You have also had a miserable time over the last week with vomiting, reflux and the horrible pain that goes along with it. You really haven't gained any weight despite adding formula to my breast milk. We just need all of the doctors taking care of you to brainstorm to come up with a better plan.
We had a lot of tests today. We did a chest x-ray that showed some fluid in and around your lungs that made the doctors concerned that your heart might be having a little trouble keeping up with the increased work its been doing. We then went for an echo (ultrasound of the heart) which was pretty much the same as before showing increased pressures in your pulmonary artery. This puts too much work on your heart! It is just having a hard time keeping up. You did so well getting your labs drawn and those showed that your heart was not pumping as effectively as before. The goal is to decrease the work load your heart by decreasing the fluid with two medicines, Lasix and sporonolactone.
Your doctor then recommended that you be admitted to help figure out the best option for your lack of weight gain and vomiting issues. Which your dad and I believe you need a surgery to put a g-tube in and a procedure to help keep the food down called a Nissen fundoplication. We are also trying to find the perfect formula to add that is easy to digest.
I have always said my hope for you and dreams for you are to simply make you happy and give you the love you deserve. The love is obvious but you are unfortunately not very happy right now. I will make it right my bear. I know this will be a long haul of ups and downs but I am your advocate and I will get it figured out. You are my love!
We made it :) you are now 6 months old baby bear! Now you are putting weight on your legs when I hold you, talking up a storm, smiling and starting to laugh. We actually had you sleep in your very own room last night. You liked it because we finally got your favorite mobile from the hospital put back up on your crib.
We have tried so hard throughout your life and look where we are now :) I'm looking forward to my letter to you in six more months to see how far you have gone. You are meant to do great things my love!
The rain has started in Portland. This is the first of about 8-9 months of rain. I sure hope we like it because so far we love being here. We are all having a hard time adjusting to not having the support systems we had in South Carolina and Oklahoma, but I am working hard to find us some help. This week your Grammy and Grandpa May came to visit and help from Oklahoma. They arrived 6 days ago and have been busy helping with you and around the house all week long. You absolutely loved when Grandpa May bounced you on his lap and talked to you. You have been busy trying to talk to us and smiling and laughing. I hear a lot of "aah, aah, aah, aah ha" You bring your lips together to try to make different sounds.Over the last 4 days or so you have been in better spirits and your daddy and I have too.
Now to update the medical stuff. We are really battling with you refluxing your milk, sometimes vomiting and being very fussy when this happens. It hurts so bad that you cry and arch your back. I have fallen into the trap of making too many changes all at once. This week we had an appointment with the Feeding Clinic to help us figure out how to get you on track to be able to feed by mouth. Because we have not figured out how to help you not spit or reflux you have not been wanting to take any milk by mouth and straight out refuse the bottle now. I don't blame you because of all the pain you have been in lately. You also haven't gained any weight since being home from the hospital. You are burning a lot of calories trying to breath and being a little more active at home than you were in the hospital. We have tried changing to continuous feeds, then adding formula, then going back to bolus feeds through your nasogastric (NG) tube, but now we are having slightly better luck with continuous feeds with 3 breaks during the day and we'll SLOWLY try to transition to bolus feeds. When we met with the developmental pediatrician at the Feeding Clinic, he informed us that having an NG tube beyond 6 months is detrimental to the feeding process and recommended talking with all of your doctors about getting a gastric (G) tube so that we can get the tube out of your nose and allow us to give you milk through a tube that goes directly from the skin on your belly to your stomach. We can also give you medicines through here until we get you in tip top shape taking all of you feeds by mouth. This is one of your biggest challenges now because we need you to have good nutrition to grow your lungs. Lets all hope for good weight gain at our next weight check. Your pediatrician, the feeding clinic, your cardiologist, pulmonologist and GI doctors are all going to meet with us in the next week to discuss the safest way to do the G-tube since it is a surgical procedure that requires them to put you under anesthesia....which means the scariest thing to your mommy....another intubation, but hopefully coming off the vent right after the procedure.
The other big thing you have coming up has to do with your heart. On all of your ultrasounds (echocardiograms) it has shown that you have an open remnant vessel going to your lungs which essentially increases the amount of blood flowing through your lungs and increases the work load of your heart. It is called a patent ductus arteriosis (PDA). Your cardiologist, Dr. Carlson who happens to be an expert on pulmonary hypertension, told us that you need to have the vessel closed in order to have improvement on your pulmonary pressures. So....another procedure is needed unfortunately. You will have a cardiac catheterization where they go in a vessel in your leg and thread a wire to your heart, then place a coil in the remnant vessel, PDA and close it. This one only requires moderate sedation without having to intubate you. This will happen on November 1. We need lots of good thoughts and prayers from our family and friends to ensure that this goes well.
I am working hard with you on all of your developmental skills. The developmental pediatrician said that he is very impressed with your strength given all that you have been through. You have been chosing not to roll over for now but he said you have all of the muscle strength you need to turn over. We have met with an early interventionist who will have physical therapy and speech therapy come out to our house and I am trying to get as many services as we can to help mommy learn how to get you back on track little guy!
Your grammy was busy this week decorating your nursery and it is almost complete. You have a "Very hungry Caterpillar" themed room with lots of colors, a few wiener dogs and a cool abstract mobile hung from the ceiling. I hope you like looking at all of the colors!
We are definitely on the steep learning curve of parenthood. We have learned that you don't like diaper changes or baths and are quite good at throwing a fit. So we just roll with it and when times get tough we have figured out you just have to watch some TV. Yes...I said it, we are the bad parents that have now resorted to using the flashiness of the TV to calm and soothe you. You happen to like the food network and HGTV. Don't worry all of you "good" parents out there...I'm going to try to find something educational for him to watch but we just can't give up the only thing besides the pacifier that soothes him :)
Most important is that we are all together. And loving it! Despite the stress and exhaustion we all go through and are learning to deal with. We LOVE you sweet heart! I have to just look through the tough times when I think we just can't get through it and think about the fun times when we talk together, smile and laugh and look forward to all of the things you will discover and learn and keep proving to this world just how amazing you are. Yes I'm biased but I know a lot of people who keep up with your progress feel the same way.
Hugs and kisses!
-Mom
Helping Dad with his charts
Grandpa May entertained you all week long
Baby Bjorn in your newly decorated nursery
Grammy talking to you in your swing
Driving hat
Handsome man coming back from his doctors appointment
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
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.
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.
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)
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!!!
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