Wednesday, December 31, 2008

Can you see?

Yesterday we had a follow up appointment with Marley's opthamologist, Dr. Good to check the condition of her coloboma (hole in her retina). It remains unchanged which is good and doesn't infringe on her macula so it shouldn't affect her vision. But I guess one of the risks of having a retinal coloboma is that it can cause retinal detachment. A very rare occurrence and one that Dr. Good has never seen in his 20 years of practice. That's reassuring but we haven't had the best of luck "beating the odds".

Dr. Good also assessed Marley's vision to be 20/20 and that she is slightly nearsighted in her left eye. I am extremely near sighted (well I was before Lasik surgery) but Jason has perfect vision. Dr. Good explained that just based on genetics she has a 30% chance of being nearsighted. Let's keep our fingers crossed that the child won't have to wear hearing aids AND glasses as she grows up.

He also confirmed that Marley has mild strabismus (crossed eyes). He said at this point there is no need to fix it. It may go away as she gets older or she may have to have surgery or eye patches to correct it. But we'll cross that bridge when we get there.

Overall, a good appointment. He instructed that Marley see an opthamologist every 6 months to rule out retinal detachment and he even recommended an opthamologist in Seattle for continued care.

I am so glad 2008 is almost over. It's been such a painful year but also a year of so much personal growth. 2009 looks like a very exciting year. We're moving to Seattle, I'm starting a new job and Marley will accomplish many wonderful milestones that I can't even begin to imagine.

I hope the new year brings you much happiness and thanks for following this blog so far. I hope to be able to share with you all some really wonderful stories in 2009!

Friday, December 19, 2008

Marley comes home!

We are now home!

And in much better spirits. We once again met with a cardiologist who clearly explained the situation (even drew us a diagram of the heart) and reassured us that Marley's conditions are rather mild on the spectrum of congenital heart disease. He reiterated that she should have a cardiac catherization in the next month or two as well as a catherization or heart surgery when she's older to repair the coarction of her aorta.

The lung scan performed today showed 40% perfusion to her left lung and 60% to her right lung. That indicates that there may be also an issue with her right pulmonary artery. The cardiologist recommends that when she has the catherization, the doctors in Seattle can better assess if there is an issue with the right side.

So all fixable conditions in due time. Yes, another issue to cross off the list but manageable. And fortunately, in Seattle we'll be living 2 blocks from the Children's Hospital.

For now we need to let Marley heal from her surgery and work on getting back onto a daily schedule. Here it is, 8:30pm and she is still awake. I expect the next few days will be a challenge just managing her pain and activity. Plus she now has diarrhea- most likely the result of the antibiotics she received during surgery.

But we are so glad to be home, and Marley is doing well. And that's what counts right now.

Marley in the Hospital: Day Two

On day 2, Marley has begun to wake up more. She is now tolerating fluids and even pooping. Her neurosurgeon is very pleased so far by her recovery and is confident that we should be able to go home on Saturday.

While still in the PICU, one of the rounding doctors noted that Marley has a heart murmur. She advised that she have an EKG and echocardiagram (ultrasound of the heart) done to rule out any heart issues. When Marley was in the hospital after her febrile seizure, an attending also noted a heart murmur and when we asked our pediatrician about it, he basically blew it off.

Once Marley was transferred to a regular unit, the echocardiagram was performed and two cardiologists came in to discuss the results. They diagnosed Marley with stenosis of her left pulmonary artery and stenosis of her aorta. Both conditions are relatively mild but she does need cardiac catherization within the next few months to open up her pulmonary artery and she will need open heart surgery when she is a little older to fix her aorta. Before she is discharged from the hospital on Saturday she will need a chest xray and lung scan to see if she has any lung damage.

Jason and I are a mess. We have been caught totally off-guard by this new condition. Our goal with her tethered cord repair was to be able to cross off one of her issues from her list- not create more problems. We also thought this was the only surgery she would ever need. We both feel like we've received a quick blow to the chest- we are devastated.

I don't really know where to go from here. I cry. A lot. I just feel so discouraged and angry and tired. I am SO tired. I could sleep for days. All I want right now is to be able to pick Marley up and hold her and I can't even do that. I just want to bring her home.

Wednesday, December 17, 2008

Marley in the Hospital: Day One

Marley's surgery to repair her tethered cord was this morning. We arrived at the hospital at 6:45am and after 2, long hours were finally sent upstairs to admit her for surgery. It was hard to say goodbye to her, but we felt that she was in very capable hands.

The surgery was relatively quick. Our neurosurgeon, Dr. Gupta called us at 11:15 to let us know that the surgery was complete and that Marley had done very well. We met her in the PICU a half hour later and she was semi-awake, crying.

I write this entry at 8pm and in that time Marley has very slowly woken up from her anesthesia. An IV is placed in her neck because they couldn't locate a vein to use in her arms, hands or feet. IVs in the neck suck because every time she bends her neck the IV tubing gets occluded, which causes the pump to beep loudly, which wakes her up with a start. The nurses have assured us that when she is able to tolerate fluids orally then they can take off the IV tubing but leave the IV in so she can continue to receive IV morphine.

She's receiving the morphine about every two hours. She gets quite high within a few minutes and it's quite the site to see her eyes glaze over, her muscles relax and her breathing slow down. I think my little baby likes being high.

But it's horrible to see her in pain. Any little movement makes her grimace and cry. I can't imagine how sore she feels and it makes me feel so bad for having put her through this ordeal. I wish I could pick her up but I am not allowed to yet; she needs to remain flat and immobile for the time being.

Tomorrow she will be transferred to a regular room. The plan is to keep her in the hospital at least until Saturday. She needs to be able to tolerate oral codeine before she can leave.

I'll try to update this blog daily while she's here. Thanks for all the kind emails, calls, prayers and positive thoughts today. It really makes the experience more bearable knowing that so many people are thinking or us and wishing Marley the best.

Saturday, December 6, 2008

A quick update!

I feel like I haven't been posting lately which may be a good thing. With a child with health issues no news usually means good news.

But I wanted to let everyone know Marley's recent stats from her 9 month doctor's appointment this week.
Weight: 14 lbs 12ozs
Height:24.5 ins
She is still in the 1st percentile but she is growing! 

Most of her clothes are 3-6 months yet I still have to roll up her sleeves. She has short little arms and legs which is just like me and her daddy. Strangely, she has the plumpest little butt and thighs; I can barely pull her pants up over her hips. Where did she get that from? 

Also, on a very exciting sidenote, I have accepted a full time job in Seattle. So we are officially moving back to the Northwest in January. I have started the arduous process of organizing our move, and my friends in Seattle (especially Libbe) have been working very hard to find us a place to live. I feel very optimistic about Seattle. Our early start therapists have assured us that Seattle is one of the best cities for children with special needs.

Marley's tethered cord surgery is coming up on the 17th. Please check the blog periodically for updates!