Kicking Butt, Taking Names

Eliza is having a great week! She is eating ...and doing well with it. By "eating" I mean she is getting milk through a tube down her throat and directly to her belly. Not too satisfying for her since there isn't any sucking involved but it gets the calories in and gets her insides working. Finally, all that breast pumping is coming to something! (Nothing is more annoying than being strapped to a pump every 3 hours and then dumping the milk cause baby isn't eating and there's no more storage space!) We bought a small chest freezer this week so we have more space for saving - though the freezer is taking residence in Eliza's room since we are short on house space as well. A freezer in the nursery - that makes sense right? We thought so. ;-)

Anyways, back to Eliza kicking butt.. she's gained 90 grams this week! That's around 3.5 ounces making her 1.5 pounds. She finally weighs more than she did when she was born! Glenn and I both got to kangaroo with her again this week. (We had been unable to for the past couple weeks due to Eliza losing more weight and getting sick because of her PDA.) She did really well with it - didn't drop her temperature and only forgot to breathe a couple times. Progress!

She is also starting to get a little more vocal. Most of the time its only when she is really upset about something - like when they removed her bandage from her heart surgery this week. It's such a tiny little sound, like a baby bird whimpering, but it gets a big reaction from us.

Eliza got her first actual taste of milk yesterday and it was the most amazing thing to see. Her nurse gave her a tiny drop before connecting the milk to her stomach tube and I wish I had the camera ready to get her reaction. Her whole body spazed, she rolled her eyes around and smacked her lips and stuck her tongue out like "what was that man, give me some more." It was the cutest thing she's done yet and me and her nurse were grinning ear to ear. It's the littlest things, so cute.

Another Education

Tomorrow will be 6 weeks of spending every day at the hospital - staring, hoping, and praying for 3, 2, and now one tiny baby. To say it's been a rollercoaster ride just doesn't come close to accurately describing our experience so far. Most of the time I'm not sure how I feel - when people ask how I am doing I'm never sure what words come out of my mouth. Figuring out how I feel requires more reflecting than I have the energy for at the moment.

Eliza keeps me going, that I know for sure.

When we first had the babies, walking into the Intensive Care Nursery was so hard and completely overwhelming. I didn't know what to do with myself. Looking at them, I felt responsible for everything they were having to fight through and all of their battles made me angry. Angry at myself for not being able to keep them in longer and angry that no matter what, we ended up on the wrong side of the percentages. I could only stand by their isolettes for short periods of time before having to take a break. During the doctors' rounds, the lists of problems that each of the babies had completely overwhelmed me, along with all of the numbers and acronyms.

These days one of us spends all day sitting by Eliza's isolette. The list of conditions during the doctors' rounds make sense to us now and the numbers help us to understand how she is doing. Now, I hate to miss rounds since it's where we get all of the facts versus someone else's interpretation of how she is doing. I know more people, and how they relate to Eliza's care. I know more about what we can expect, and if we don't get it, who to ask. We know which beeps are important and which are just annoying. It's amazing how these little things make you feel better and a little more in control. Her medical team (at least the consistent ones) have come to realize that Glenn and I want specific information and don't want things dumbed down for us. We are beginning to form relationships and speak using jargon we'd never heard 6 weeks ago. It's been a hell of an education so far and I know we have a lot more to go. It's one I would have been happy to have never experienced but you do what you gotta do, right? :)

Eliza's tiny foot in my mom's hand while she helps the nurse.

I'd like to introduce you to...

...the eyes we won't ever be able to say no to.

Eliza made it through the surgery pretty well. She was in some pain the day after which we hated to see but we tried to make sure what she felt was minimal. The surgeon commented that her PDA was pretty big when he got in there so the surgery should really help with her progress. The frequency of drops in her oxygen saturation and her heart rate have decreased significantly which seems like a really good sign.

Eliza's plan for the weekend was to "blow and grow"(we've learned so much medical slang from our short stint at the hospital). Meaning they aren't weaning her off the ventilator too fast so she can conserve calories, start feeding and hopefully gain weight. Saturday she got 2.3 mL of milk every 6 hours and today she is at 3mL.  So far it seems like her gut is handling the milk fine so that is great news for her ostomy.  These are really tiny amounts but every little bit helps at this point. It's so hard to watch her getting thinner every day. 

Eliza's nurse made her a cute little bow before her surgery - and stuck it to the side of her head. :) We are finally starting to get a more regular team of nurses which is really great! It has been very frustrating to constantly have a nurse that had never seen Eliza before. A lot of her symptoms and progress have to do with how she is doing from one day to the next so you can imagine how difficult that is when there was little consistency in people. Duke has a ICN nursing staff of over 200! A couple of her primary nurses have brought her little gifts -like in the picture above with her tiny stuffed puppy that hangs out in the isolette with her.

Surgery 2.0

Eliza is on the books for heart surgery tomorrow. Specifically, patent ductus arteriosus ligation. The PDA I mentioned in the previous post did not close with the treatment of medication over the weekend. A lot of times with tiny to small PDAs, surgery isnt necessary immediately - they can give it weeks, months or even years for the baby to get bigger as long as the PDA is not affecting their health. Unfortunately for Eliza her PDA is too big and is giving her a rough time. Since this open valve is diverting too much blood from where it should be going, her body is having to work extra hard and she is worn out. After a pretty terrible night and day she has been taken off the CPAP and re-intubated (no more elephant trunk for now!) and also put back on blood pressure medication. For now, these things are helping to keep her stable until the surgery tomorrow. We hate that her condition is bad enough to require surgery but are glad that its a relatively common surgery performed on small babies like Eliza. They have told us that she will most likely get sicker for the 24-48 hours after surgery so these next few days are going to be tough, but for most this surgery dramatically helps with growth and health -- which is exactly what she needs!

Just try to imagine working on the heart of a one pound baby and putting a tiny clip on one of the arteries --that will stay there for the rest of her life! I mean how is that even possible?! It blows my mind.

Back with another update afterwards -- Send strong thoughts Eliza's way!

One Month Old

Eliza is one month old today! Its seemed like both an eternity and an instant of time.

I was hoping that this would be a happy post about what a easy week we've had and how we've been able to loosen our grip just a smidge. Which is all true - I even got my hair cut this week for the first time since I went on bedrest 4 months ago! Oh yeah, that felt good. :) 

But we got news today that Eliza has a moderate sized patent ductus arteriosus (PDA). Basically there's a valve in the heart that is open while babies are growing in the womb but is supposed to close at or before birth - hers didn't close and is still open. They are going to treat her this weekend with medication but the medical team thinks it is unlikely that will work. If the medication doesn't work then she will have heart surgery. In addition, this diagnosis delays her feeds yet again. There has been one reason after the next for the last 3 weeks for why she can't start receiving milk. Combine that with her continued lack of weight gain and it starts to get very upsetting and frustrating! I am hoping that she doesn't have to go through surgery again but we will know more on Monday.

Other updates from this week: Eliza is off the ventilator tube and on the CPAP! She has been off for 5 days now. This is amazing because for someone her size they only expected her to make it one day before having to be re-intubated. Too bad that the extubation happened rather traumatically while I was kangarooing with her! Neither baby nor mother enjoyed that much. The video clip is during the moments between the tube being removed and the CPAP being placed. We got to see her precious face!

Eliza with the CPAP. Looks a little like an elephant trunk. :)

Kangarooing

Glenn and I both got to experience Kangaroo care for the first time this weekend with Eliza.  It was the first we got to hold her and it was magic! For Kangaroo care the baby is placed on the parents chest skin to skin. It helps to regulate babies temperature, breathing and encourages bonding among other things - all being positive. :) This couldnt have happened at a better time. We were all feeling very rough after the tragedy of losing Charlotte and Eliza's nurse knew exactly what we needed. Thank you Marie!

I got to hold her on Saturday and Glenn took pictures. There is a minimum time requirement of 1 hour for Kangaroo care since it uses up a lot of the babies energy to be moved from the isolette and get settled in. As long as the baby is tolerating it ok there isn't a maximum time limit. I am looking forward to spending many hours hanging out with Eliza!

And it was Glenn's turn on Sunday.

Charlotte

Once again, the worst has happened. Our daughter Charlotte has left us, joining her brother Oliver. She passed away early in the morning of October 1st after two and a half days of unexpected declining health. We are grateful that she was surrounded by family at the time of her passing, though that doesn't make it any less difficult for any of us. She was only with us for three weeks, but it feels like much longer. We mourn the loss of all of our hopes and dreams for her and our future together. Our hearts ache for her and we miss her so much.

Goodbye beautiful baby girl. You will always be loved and cherished.
















Forever in our hearts, thoughts, and memories
September 8, 2010 – October 1, 2010