Thursday, June 26, 2008

A Plan to Go Home

You read that correctly, we've put a plan in place. Before I offer the details, Kirsten and I wanted to send a thank you to all of my co-workers at Treasury. Everyone at work has been extremely supportive of our situation and has allowed me tremendous flexibility with my schedule. On top of all that support, they also held a really nice shower for us yesterday afternoon. Knowing that Kirsten and I are big baseball fans, they ensured that Madeleine's first baseball outfit will be a Nationals outfit-- sorry to the Grandpas that support the Tigers and Yankees respectively. Again, Kirsten and I are humbled by the support we continue to receive and can't say enough thank yous!

Now, here are the details that I've been waiting to write for nearly four months: The doctors have established Madeleine's homecoming date as next Wednesday, July 2. Here are the details:

- Madeleine has reached full feeds of 47 cc's every three hours. She is processing the food very well and we're just hoping that she won't run into any issues in the next 6 days.

- Bottle feeding continues to slowly improve. Since Madeleine hasn't fully mastered bottle feeding, we're bringing her home with a feeding tube. This has been expected for a while and we think that within a few weeks, we can improve feeding and get her feeding exclusively from the bottle.

- Breathing: This is the biggest hurdle that Madeleine faces in meeting her time frame of next Wednesday. We were surprised a little over a week ago when Madeleine started to struggle with breathing. She has had some problems "de-satting" and has also been intermittently tachypnic (breathing fast). We talked extensively with her doctors and nurses and learned that tachypnea is caused by one of three factors: infection, cardiac troubles, and Bronchopulmonary Dysplasia (BPD). Madeleine doesn't have an infection and they did an echocardiagram on Tuesday that confirmed no troubles with the heart. Therefore, they confirmed that Madeleine has BPD-- basically, she has premature lungs that need to develop further. They started her a few days ago on nebulizers-- essentially asthma treatments-- and her breathing is steadily improving. She's still on breathing support and will likely come home with some form of oxygen support. The good news is that they believe her BPD is 100% correctable and we're thinking that oxygen support will only be needed for the first few months.

Assuming that Madeleine continues progress on the breathing and meets her feeding goals, our plan is to spend next Monday night in the NICU-- they have a parent's apartment for practice nights. We'll have all of the equipment that we'll be using at home and the nurses will leave us alone unless we request their assistance. We feel pretty confident in treating Madeleine's different issues but its nice to have a practice run at 3AM. Its a little different when you can't think and/or see straight.

In any case, if you're a frequent reader of this blog you know full well about the best laid plans.... We're not getting our hopes up too high (yet) but we'd be lying if we weren't a little excited. Have a great day.

Brent and Kirsten

10 comments:

Anonymous said...

That is awesome news! We have been praying for Madeleine and will continue to pray. Having her home will be such a blessing. We are so excited for you guys.
Love,
Greg and Michelle

Epicurious Cooking said...

Whooo Hooo!! We are so happy at the good progress she's making! She will be home with you in 6 days! We can't wait to meet her! We have been praying for Madeleine and will continue to! It will all be a memory soon!
Lots of love from Michigan,
Kellie, Sean and Louisa

Anonymous said...

This is the news we have all been waiting for! I can't imagine how excited you are that Madeleine will be home next week. We are so happy for you all.

Love,
Jill

Jeanette said...

I am a mother of an 11 month old daughter, Sydney with DS. It appears that you have had a rough ride. It is good to see that you have a plan to take her home. We went through just a few weeks of NICU and pulmonary hypertension. You have a wonderful blessing in your hands. Cherish each other. Blessings, Jeanette

Will said...

This is great! We're reading from Ireland now and are so, so excited about the progress and the plan. Good luck.
Will & Ayyana

Anonymous said...

Way to go - Ms. Madeleine is one tough little girl. I am sure that once she is home she will continue to improve and will certainly keep you both on your toes! And yes, I will be more than happy to babysit anytime!

Love, MK

Erika said...

Congrats! We are soooooo excited to see you two and meet Madeleine. We're keeping our fingers crossed that this is the one plan that goes exactly as scheduled. Love to all three of you!

Erika, Brian, Ella & Blake

Anonymous said...

Now that's the kind of blog I like to read. Congrats to all of you!
Joyce

jyun said...

I hope I will get to see all of you before Mady leaves next week. Best wishes!

Jullie

Unknown said...

I can't wait to come over to the house and hold Miss Madeleine finally!! Good Luck with the overnight at the hospital. This is a huge moment for you guys and I couldn't be happier!

Love,
Alison