Finally Coming Home

Lily is finally coming home today after 2.5 weeks in the hospital. It will be nice to start getting into a routine that does not include driving back and forth to the hospital every day. We are all very excited and hoping for the best.

Let me enlighten you...

Some Good News

Lily passed her 3rd attempt at the hearing test with flying colors! She had previously failed the two in the hospital. I guess we can chalk that up to excessive fluid from the c-section. We are still looking forward to her release early this week.

George Carlin Dead at 71

RIP George.

Coming Home Soon

Lily is doing really well with her on-demand feeding schedule. In fact, the doctor has said that she should be able to come home in the next few days! Unfortunately, I did not get to see her tonight as Gwyneth woke up from her nap this afternoon with a fever.

A Different Strategy

Today the doctor at the NICU decided to put Lily on an on-demand feeding schedule. Basically, they wait until she wakes up hungry and then just give her what she will take without tube-feeding the rest to her. It seems that she did much better on this schedule. We also got the results that Lily does indeed have Trisomy-21 (Down Syndrome). Kim also happened to speak with a nurse who's god-daughter has Down Syndrome and she said that she is now 22 and graduating from High School. Right now we are hopeful that she will come home sometime in the near future. We also have a meeting with a doctor at the hospital on Tuesday afternoon.

Making Progress

Just a quick update on Lily. She did really well with today's feeding. In Fact, she woke up two hours after a previous feeding crying and hungry. Kim has also been working with the nurses trying different bottles. This is great news considering that she has always had to be awakened for all of her feedings. Hopefully, she will continue to make progress and be home soon.

What is Down Syndrome?

Click here for a great and simple explanation of what Down Syndrome is.

Holding Pattern

Kim was released on Tuesday evening but Lily remains in the NICU for the time being. She is having trouble feeding on her own and we are hoping that she does not remain in there for too long. It is getting difficult to split our time between the hospital and home and between Gwynny and Lilly and some stuff at home is also starting to pile up a little. I will be returning to work next week and Kim has one more week of not being able to drive. She will be dropped off at the hospital each morning and I will meet here there after I put in my eight hours.

Putting Things Into Perspective

It's been an interesting week to say the least. After what appeared to be a normal C-Section we were shocked to learn that there is a high percentage that Lily has Down Syndrome as well as a congenital heart defect. A pediatric cardiologist with the Cleveland Clinic spoke with us regarding her heart condition and the treatment. The good news is that her heart defect is fairly common and fixable. She will require surgery at 3-6 months to fix her heart and should not have any other issues after that and everyone knows that The Cleveland Clinic is the number one cardiac center in the world.

The Down Syndrome needs to be verified with chromosome study. I've been doing a lot of reading on it lately and it's basically an extra chromosome that is introduced at conception and it's a more common occurrence with older mothers but can happen to any mother regardless of race, nationality or socio-economic status. This genetic abnormality is in no way preventable and 90% of pregnancies that test positive for Down Syndrome are aborted. Kim and I refused all the prenatal screens figuring that we would keep our child no matter what. The doctors who have seen her at Fairview are fairly certain that she has Down Syndrome but we need the test to be certain and I never realized just how high the odds are for women as they grow older. Lily will also have to see an audiologist and possibly have tubes placed in her ears to drain fluid. The congenital heart defect, hearing, etc. are all physical symptoms of Down Syndrome.

Our life will definitely be challenging but Kim has experience working with the mentally challenged and we've both adopted a positive attitude towards this. Lance Armstong said that cancer was the greatest thing that ever happened to him and we are both looking at it from that perspective. There are some amazing things being done with children who require "special needs" right now and we do not consider this necessarily a "bad" thing. It may seem "politically correct" but when I told this to my Dad (who is in a nursing home with MS) he said that we will have an "exceptional" child. After reading several stories about kids like Lily, I now truly believe that.

This has all really put things into perspective for us and I hope everyone understands if I cannot immediately deal with work issues at least for the next few days. Kim and Lily will be discharged tomorrow but it will be a long road ahead with doctor's visits, therapy, etc. When Lily was taken down to the NICU for heart observation and before we had any information, we feared the worst. Now we are just happy to have a little one no matter what her issues are.