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
