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Life with a boy and his Hypoplastic Left heart Syndrome, now Heart transplant and partial Liver from Aspergillius. Also, a girl and her Tethered Spinal Cord Syndrome, Neuro Endocrine Cell Hypoplasia, Lumbar Hemangioma, asymmetrical gluteal cleft, Pectus Carinatum and two Super Sisters and one yummy baby brother.

Tuesday, March 27, 2007

Can I just vent...

I know I am supposed to try to be positive all the time. But, today has been a hard day. If you have ever been prego, had a wife who has been prego, or even spent some time around a lady that is prego; this little venting session should come as no surprise. I am so frustrated that I have no energy. I wanted to get up and get some things done around the house today. I got up fine, then I tried doing stuff. I was winded, tired, weepy, and frustrated within minutes. I cancelled Ry's play date because I needed to lay down and now I am fretting about the rest of the things I need to do today. I can see the light at the end of the tunnel, it is just far far away. Okay, I am feeling better now. I think it is a good thing this will be the last week of doing appointments involving color. I think I can still do cuts. Not for long. I'll just see how things go.

Wednesday, March 21, 2007

A little update.

Well, this week has been nuts around our house. Jeff and I made some financial changes and went on Monday to complete all of them. Yesterday we all went to the OB. The visits seem to be down to a science. After checking in we go back and check blood pressure and weight(my favorite part) then we wait for the doctor. I was really hoping Dr. Larkin would give us a delivery date. Based on what he had originally told us he wanted to deliver around 37-38 weeks, this meant I only had about three more weeks to feel uncomfortable, sleep deprived and anxious about the delivery. But.... he said more like 38 1/2 weeks. I was horribly disappointed, My sweet, patient husband, reminded me that the doctor knows the best time. We go back in two weeks and he will check me to see if there are changes "DOWN THERE". I seem to be measuring great and the heartbeat is so strong. Then later was New Beginnings with the YW for me, activity night with the YM for Jeff and a play date with Grandma for Ryleigh. Today, Jeff and I went back to PCMC (primary children's medical center) While Ry played with Papa. We had our last Echo. The view at this late stage of pregnancy is very hazy and shadowed because the bones of the baby have calcified (gotten hard) and he is squished but still very wiggly. After the echo we visited with Dr. Jason Su, the cardiologist. He has been amazing and it will be sad that he won't be as involved for a little while. He mostly asked if we had questions. We feel at this point, that we understand most of what will happen. He explained that Alex's heart is looking positive for the condition. The situation hasn't changed much. He was a bit curious because it looks as though the LV may not be growing anymore. The RV, is however, and doing very well. He also saw the PFO and it looks as though it is also doing well. So..... from his perspective everything is looking very HLHS, he said we will know a lot more after Alex is born and they can actually do an Echo on him vs. a fetal Echo that is done through me. After meeting with Dr. Su we met with a surgeon. Dr. Peter Kourtas. He or Dr Hopkins will be there for surgery. We just asked basic questions about what would make a good candidate for these surgeries and what would be some of the things to watch out for. It made me laugh most when he said "little kids are like walking third world countries and sometimes they collide to make everyone sick" We were talking about the worries after surgery and recovery. So far Alex is a good candidate and of course will have his challenges and such but things thus far seem good. Jeff and I talked about how that seems so weird to say. "Things look Good" obviously nothing about this is good, we mean, considering the situation and diagnosis, things are positive. Emotional wise, I am feeling very calm. We are all doing well. We are trying to manage everything we can before Alex gets here. I am even getting a new car. YEAH!!!!!! I have loved the Mazda, but Jeff and I feel a little more comfortable in something newer and I think he'll have less fear about me, since I will be driving back and forth from the hospital everyday. One nice thing; it seems like when the week starts it is over quickly. There is so much keeping us busy. So it won't be long now.

Friday, March 16, 2007

Little buddy



I think these pictures are so typical. This is really how Ry is; ready to help with anything. She loves getting her hair done and doing anyone's that will hold still. And, She always wants to help Jeff with any project. We love her!

Tuesday, March 13, 2007

A little sunshine




I love the sunshiny weather we've been having. On Tuesdays, we usually go to the library and then out to a fast food joint where there is an indoor play area. But today we didn't have to stay inside. The kids loved playing at the park.

Sunday, March 11, 2007

fast visit!

Nothing new or different to report. We went to a doctor appointment on Friday. The doctor rushed in with news of an impending delivery and was gone in a flash. The nurse who is the fill in for the real nurse of Dr. Larkin; came in, measured, listened and we were done. I am still on track, not much has changed. So, I just wait until our next visit were they will start the two week visits. I think they start checking you at this point too... Jeff and I are doing well. Ry on the other hand threw up all night. (sicko) poor little girl. She's never done that before. She stayed home from church today with dad. I think it might be a touch of the stomach flu. They always miss her when she's not at nursery. She is on the compassionate service committee. Whenever there is a sad little person Ry gives many hugs, kisses and "it's okay" rubs, to make them feel better. She brings toys in attempt to make them stop crying. She is so kind and it is totally funny to see someone so small care so much about the other little kids. Other than that we're grrreat! all our loves...

Thursday, March 8, 2007

Large and in-charge





Obviously I am still learning photography. But; because I wanted as many photos of Alex as possible I thought even if he's in me it's still a picture of him. We are 33 weeks here... not too much longer now.

My Little Fighter

Hey everyone this is the daddy of Alex, this is a rare occasion that you will see anything from me, lets just say that I am not as capable of doing everything like brynn. I wanted to let everyone know that although not expressed too often my heart aches just like our son's. I am can't believe that such a sweet little boy is going to have to go through so much his first few years in this life. I was listening to the radio the other morning and it was the radiothon for The hospital, they were talking to kids who are there at Primary's, it broke my heart to here their sotries and realize that my own child was going to be in their shoes in the not too far future. I hope with all my heart that he is going to be ok, I thank you all for your support and prayers for our family during this time. Jeff

Thursday, March 1, 2007

Matters in my own hands

The doctor never called me, so today I decided to call them. I passed my glucose test!!!!!! I am so relieved that it won't be another worry. I guess I didn't remember how I felt with Ry. But the more I think about it, it is very similar. I remember staying up really late at night playing spider solitaire, because I could never get comfy. I also remember the ten maybe twelve pillows for my head, my feet, my back, under the belly, and between my knees. And then being so so tired the next day from lack of sleep. I think the only added thing is, now I run around after a toddler. So this is normal after all... The doc did say he wanted me to watch my sugar intake just so it helps me feel better.