Sunday, September 30, 2012

Home life


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!!!


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

Thursday, September 13, 2012


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.


Friday, September 7, 2012

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!

Wednesday, September 5, 2012

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)

Sunday, September 2, 2012

Way to go Little Bear!


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!