Ryan Shares His Milk

I finally got to send my extra milk to the milk bank in Denver.  I was waiting to see my doctor to have my blood drawn to send with the milk for testing and that happened yesterday so today I went to Hy-Vee and got dry ice, came home, packed up the milk and then drove it to the FedEx drop off site.  It was close to pick up time so the FedEx guy was there and I think he was sufficiently freaked out about handling a large box covered with stickers that say "Frozen Human Milk - Handle With Care".  I also called the milk bank at their request to let them know it was coming and to look for it.  They said they would put it on the big board and let me know when it arrives.  I am still a little fascinated and in awe of this process and so grateful that I can take part in it.  In the beginning, I was so sure all of that pumping would be for nothing, that Ryan would never be able to nurse after being on bottles for so long, but I kept doing it because I guess I really didn't know what else to do.  At one point I asked my pediatrician if it was worth it and he said "Of course, if you can make milk you should".  At the time it made me really mad because I thought, "he has no idea how hard this is".  But now I am so glad he didn't let me off the hook.  Ryan is nursing and I have been able to share some of that milk I pumped with a baby or babies that may really need it.  I just feel so lucky that it all worked out this way.  I know lots of really good mothers who try their best and the milk just doesn't come or doesn't stick around long enough.

Ryan's Baptism

Ryan's baptism was last Sunday the 19th.  It was the first time all 5 of us had been to church together, usually Jason goes early or I take the boys, so getting us all fed and dressed in reasonably nice clothes and out the door in time was a challenge to say the least, but we made it, barely.  We actually ended up sitting in front of the nurse practitioner from the CV Surgery team that took care of Ryan during his hospital stay.  She was the one that updated us during his surgery and took care of him in the PICU during his recovery.  It was so great to get to show her how big he has gotten and how healthy he is.  We survived mass and met up with our family who had gotten to church early and was setting on the other side (my dad and step mom even managed to get there early after driving to the old church).  Ryan was pretty tired by the time the baptism ceremony started, but he tolerated it pretty well and watched the priest with very wide eyes as he poured the water over his precious little head.  Kyle watched intently and even got to hold the baptism candle, a job which he took quite seriously.  Grant for the most part ran around like a little banshee, but did pause and watch the actual baptism, after which he exclaimed "You taking Baby Ryan a bath!".  My sister and brother-in-law nervously served as god parents.  I think they felt to young for such a job.  Afterwards we all went back to the house for lunch and Ryan crashed for a three hours nap.  When he woke up, his room smelled like chrism and I realized that it would be the last time I smelled that smell on one of my babies, so I tried to savor it and ended up not washing his hair until Wednesday.

 

Cardiology Followup Appointment

Ryan's follow up appointment with Dr. Drake was last Thursday.  I now know that he was really just checking (via a chest x-ray) to see if his diaphragm had started function again and .... IT HAS!  We are so excited and relieved to see the normal x-ray.  We had heard many times that it would, but never got any exact odds or a timeframe or explanation in general other then it can take a long time, so we had gotten discouraged, but it is all in the past now.  His lungs are clear and he no longer needs to take Lasix, a diuretic that was keeping his lungs from accumulating to much fluid which would have made his heart work harder.  When I was cleaning the kitchen, I saw the bottle and all of the syringe dispensers and thought about throwing them away, but waited for Jason to get home, so we could do it together.  He will not need to see his cardiologist again until April, 6 months from now, when he will have an echo (ultrasound of the heart) to make sure that his heart is continuing to function as it should and that there is no excessive narrowing of the pulmonary branches.  During his first follow up at 2 months, he had an echo that looked great according to Dr. Drake.  There was a small amount of narrowing, but according to Dr. Drake, that is really inevitable in Transposition because of the manner in which the arteries originally formed.  He says that he will watch pretty closely for the first year or so because growth is so rapid.  Eventually, he will need an echo just once a year.  I read the blog of a mom to a five year old boy who was born with Transposition and she was talking about that now his yearly checkup is about the only time she thinks about his heart and how that was a slow transitions.  Like anything, first she would go a day, then maybe a week and eventually think of it only rarely.   That's still hard to imagine, but I can at least imagine it now that his diaphragm is working. 

 

Another heart related tidbit, I finally got to met the heart mom that made the blanket that was in the care package we received from the CHD family support group while we were in the hospital (actually while we were waiting during surgery).  I knew the family went to our church because there was an article about them in the church newspaper and I had seen them a couple of times, but just never made it over to say hi after mass.  Today, I was at a skating party with Kyle and I saw who I thought was the same mom, so I asked and it was.  The story is kind of hard to explain and no where to start, so I am sure she thought I was a complete lunatic or stalker, but eventually I explained it and it was a great small world story.  I really want to get my act together and make a blanket or two for a care package to go to another family.

 

Brothers

So Grant was having a hard time getting to sleep the other night and Jason and I sent him back to his room about a hundred times.  He eventually stayed and we heard some commotion and talking, but didn't think much of it because we really wanted to watch an episode of LOST on DVD.  When I went to check on them later, Grant wasn't in his bunk, but had crawled up to Kyle's.  It was very cute and the next morning Kyle said "You know Mom, all Grant wanted last night was a little bit of company, so I let him come up to my bunk and I read him stories and we fell asleep together".   It almost makes up for the rest of the time they spend trying to kill each other.  Actually, I would say they get along about 75% of the time.  They both agree that they love Ryan though.  They both love to hold him, Grant will set down and say "Give him to me" and "Oh, baby Ryan, you are my best friend".  I let Kyle do a baby yoga/massage dvd with Ryan the other day and he took it so seriously.  Ryan for the most part loves it, but sometimes gives me a look like "are you kidding, leaving me alone with these two".  I actually took all three of them to the farmstead last Friday.  I always feel like taking all three on a successful outing is a bigger accomplishment the anything I have ever done previously.  It was a really nice day and Ryan had taken a good morning nap and ate well, so I decided to just go for it.  We all had fun, at least until we were watching the cow milking demonstration and I guess out of empathy for the cow (warning, stop reading if you have never been a nursing mom) my milk let down. 

 

In other news, Ryan was approved to receive the Synagis shot, which is a relief.  I got two letters from the insurance company, one saying he was approved the other saying he wasn't, so I called and they said he was but I am still keeping my fingers crossed.  He has his 4 month checkup on Wednesday and a followup with his cardiologist on Thursday, so it will be a busy week.

 

Milk News

I got my package from the milk bank in Denver with shipping instructions.  I am so excited.  A really ironic thing happened tonight as well, in the milk bank's newsletter it said that some preemie's born with underdeveloped eyes that are feed donor milk are able to develop vision and I just met the most adorable little boy who was a 23 week preemie and is blind in his right eye.  I just thought that was really strange and makes me so grateful that there is a mechanism for me to donate all of that milk in the freezer.

 

Hospital Memories

It seems like I have been thinking alot this week about the time we spent in the hospital. There are probably a couple of reasons. I had thank you cards with Ryan's picture printed to send to the different places in the hospital he received care. The card for CV Surgery and the PICU I was able to give to our neighbor. He is a pharmacist in the PICU and was such a blessing during that difficult time. We knew he worked at Children's, but weren't sure where until Jason ran into him on the day of the surgery completely by accident. He said he had seen a Stratman on the board that morning and started to connect the dots. He came to room where we were waiting at the end of his shift and told us Ryan's room was ready and that he really liked the doctor that was on call the next day. We saw him every day that Ryan was in the PICU and he always came to Ryan's room and told us we had the best nurse in the unit. It was just so nice to have a familiar face in all of the chaos that was the PICU. The other cards to the NICU, 4S, Cardiology and Lactation teams I just mailed and hope that they will find the right places. I don't know that anyone will remember us, but I thought they might like to see pictures of a baby doing so much better then what the see day in and day out. Another reason for my thoughts of the hospital is a post I received from a mom in Utah whose son was also born with TGA and is about a year older then Ryan. She has a founded a support group in Utah and her blog has lots of good information and links to other blogs about heart kids. I have probably spent way to much time reading these, but it is interesting to see the journey others have been through. Everyone is a little different and I was wanting to find someone who had also dealt with diaphragm paralysis, but haven't. Maybe it won't even be an issue for us anymore. When I was in for Ryan's last weight check, I asked if we could check his sats and they were in the high 90's as opposed to the low 90's where they generally stayed while we still had the monitor. That lead me to hope that maybe his diaphragm is working, but I guess it could also mean he is just compensating better. His breathing rate is still on the high side of normal and he still sleeps more then my two older boys combined ever did, so we will see. He sees the cardiologist again a week from Thursday. I am still hoping he got approved for the RSV shots, some part of the insurance company called late Friday to ask when the shot was scheduled, which I didn't know had been scheduled. They said they received the prescription, but it just said October and they needed the date and a recorded weight within 30days. I said that I would find out on Monday and I was so happy that he had been approved and she said that this was just the first step and she didn't know if he was actually approved. I will keep my fingers crossed. I'm going to try to focus more on being present this week and not thinking so much about the hospital and reliving all of the details, especially since I may start working again next week. I said that I would be available if they needed help and my boss said that everyone was busy. It's time, I think and maybe working will keep me spending to much time reading about CHD and obsessing over the past and worrying about the future.