The Extraordinary Ordinary: hyrdops

Showing posts with label hyrdops. Show all posts

Thursday, September 26, 2013

Here Comes the Dawn

So...the dreaded day approached. I had yet another sleepless night as I tried not to think about last year and focus only on the amazing little boy in front of us. We had to wake early and load the kids in the car for the early appointment in Kansas City...and as we drove, this beautiful site was ahead of us. I truly was in awe of the amazing sun rising. The song, "here comes the sun..." played in my mind and everything just seemed peaceful. It was just another revelation of the blessings and miracles that are new every morning.

Our pulmonology appointment was less eventful than I hoped. They were actually very impressed with our thriving Auggie. Of course, Auggie didn't cough during the visit. But Dr. Escobar did decide to order a chest x-ray. He talked extensively about lymphangectasia and other lymphatic issues that effect the lungs. He said these diagnosis have a wide spectrum of presentations and many remain asymptomatic throughout life. We may go on for CT in a few weeks when we visit again. We also have an appt with a vascular lymphatic doctor on Oct. 7. On one hand, this is a lot of back and forth to Kansas City ahead of us...on the other hand, its a lot closer than Philadelphia was to us during pregnancy, and the outlook is much more positive. So I welcome it. Overall, I feel like no matter what challenges we may have ahead, that every little thing is gonna be alright. So I won't worry. God's Got This!

Since we had to bring the whole family with us, we made a nice day trip of Kansas City. We went to SeaLife and Legoland and ate at a place called Fritz's where a train delivers your food to the table. The kids had a grand time and can't wait to visit again.

When the day was done, we picked up our Grandma Mille who came from Oregon for a visit. We are so blessed to have her with us this week.

Grandma Mille and Emily ride the train at the city park in downtown Wamego

Fritz's Restaurant (turn your head sideways)

Sea Life

Tuesday, September 24, 2013

Anniversary

Tomorrow marks the one year anniversary of the worst day of my life. It was the day we sat in silence as doctors studied our son. It was the day that doctors told us our son would not survive. It was the day we were told that the standard of care for his condition was termination, and that would end his suffering and avoid prolonging ours. It was the first time I had ever heard of non-immune hydrops. It was the beginning of many months of sleepless nights and travel and doctors visits and ultrasounds and searching the internet for hope and praying and begging and pleading and........ This day marked the end of joy in my pregnancy. It took away all of my innocence that pregnancy was this beautiful thing that could be trusted. It took away my innocence that losing a child only happens to other people. It took away the notion that I truly had any control over my life.

I've been dreading this day. Not only because of all of that, but also because it is the same day we drive to Kansas City to take that same sweet baby boy, the boy who lived, to the pulomonogist. We still know little about the chyle leak that caused his hydrops, or the lymphatic malformation that causes his residual lymphedema. We know he is healthy and meeting all of his milestones. His arm does not seem to hold him back or cause him discomfort. But he does has a very odd cough that occurs frequently and does not seem to be related to any illness. He coughs when he laughs. He coughs when he cries. He coughs when he gets frustrated. Sometimes I think he is fine and this is just the result of having sick lungs in utero. Other time I feel my chest tighten and wonder if I am being naive and that we have many more mountains ahead of us. So...its time to get checked out and find out.

On one hand, maybe this office visit being on this anniversary is a good thing. Certainly we have been blessed with this little man who is affectionately called a "Little Wave" in my support group, due to overcoming an ocean of odds to be with us. This visit does remind us of how far we have come this year. On the other hand, I am scared, nervous and anxious. If you can say a prayer for us, it would be appreciated.

Wednesday, January 30, 2013

37 weeks and a Warm and Fuzzy Shower

37 weeks 1 day

pregnant shadow

We are 37 weeks and 1 day today. At the doctor we were seen by a new sonographer, a resident and Dr. Chapman, one of the mFMs. I really liked the sonographer because she was thorough and to the point, doing all measurements, etc without my having to ask her. I liked that there was a resident in the room because I knew that meant they probably said "here is an interesting case..." and because it will give her an opportunity to see that sometimes, there is hope and maybe not be only a voice of gloom for people she may encounter in the future, and I liked seeing Dr. Chapman, because even though I just met her last week, she seems very genuine and happy with how well our Auggie is doing.

Today everything looked good. I don't know exactly what all they check in the biophysical profile, other than blood flow, heart rate and diaphramatic practice breathing, but I do know that he has scored an 8/8 each week lately. There is NO FLUID, yes, NO FLUID on his chest and there is only a small amount on his abdomen. His head is measuring 40 weeks, and his abdomen is measuring 37 weeks and 5 days (much more like it compared to the measurment last week). I have big headed babies...so the head size didn't surprise me much, haha.

We asked about the likelyhood of distress and although no promises can be made, everyone seems to feel it is not likely and think it is possible we could avoid NICU altogether. She assured us that they try very hard to keep babies with mothers and if they do not need to take him from me, they won't and they will do everything possible to do any testing at our bedside....if at all possible. I think the mere thought that they even entertain the idea of him staying at my bedside and not having a NICU stay is pretty incredible. I mean, at one point, there was minimal chance of survival, and then obviously, a NICU setting...and now...anything is possible. Everyone knows that anything is possible with this kid.

Downstairs we saw our buddy, Dr. Twedt. I am still 1 cm and high, but she is unconcerned regarding induction, which we will schedule next week. Of course, she reminded us that she is on call all weekend and that there are lots of predicted storms, so be prepared for anything. We are on a first name basis with everyone at this point...and one nurse even came into the room and said "as you came down the hall we all said, here comes that miracle baby". WOW!

Yesterday, my son's kindergarten class threw me a baby shower for their "warm and fuzzy party day". The teacher has a jar and when the kids do good things, she slowly fills the jar with pom pom balls. When it is full, they get a "warm and fuzzy party". Often this entails pajama day, or a movie...but they decided since the kids were all so excited for Baby Auggie and have been praying all year, that they would teach them to throw a baby shower. They decorated with blue and had fruit, pretzels and brownies. All of the children colored cards and pictures and some even brought sweet gifts. How appropriate that their "wamr and fuzzy party" is called that considering those were the first positive words I heard from Dr. Johnson at CHOP many weeks ago...rememeber when he said "it makes me feel warm and fuzzy". Good stuff!

Of all the gifts, my favorites were a binder full of prayers (pictured below) from each of these sweet babes, and also three special tiles for his room. One of the tiles has a verse, and small dots each made from Oliver's pinky prints. Another has Eliot's handprint with another verse. And one is a painting of the world, with children holding hands around it...each child is represented by the pinky prints of Oliver and his classmates. It is truly a treasure that brought me to tears. One of Oliver's little friends said "those are happy tears, aren't they?" Yes, happy happy tears...of joy that we are celebrating the birth and well being of Auggie, and of awe that these sweet 5 and 6 year old children care so much, about their friend, Oliver and about Baby Auggie.

Thank you to each of them, and to their parents, and to Oliver's wonderful teachers, Mrs. Harkey and Mrs. Todd. And of course, to their great school. We are truly blessed.

For I know the plans I have for you declares the Lord, plans for good and not evil, to give you hope and a future. Jeremiah 29:11 (Oliver's pinky prints are the dots along the sides)