Thursday, May 25, 2006

May 25, 2006

Okay -- let's try this again. I think I've gotten most of the details in that I need and can just start focusing on the big pieces of information. I'm going to try, but I make no promises.

Saturday morning, both girls' lab work came back with elevated bilirubin levels, indicating jaundice. This meant a few days for each of them under the photo-therapy lights. It's just like a blacklight that goes over each of their incubators and helps to correct the elevated levels before it becomes dangerous. It's no big deal, but it does require the patient to wear these little protective eye pieces all day long. It made me so sad to see them there, having to have their eyes closed 24 hours a day. It seemed miserable to me. At least I was able to hold them, though, for a few minutes here and there. It made me feel like I was doing everything I could to make their lives a little happier.

The same day, Todd took Devin in to meet his new sisters. We wondered how it would go and how much he understood. I wasn't with them at the time, but apparently we've underestimated our little brain surgeon.

Todd first took Devin to meet Grace. He sat in Todd's arm and stared down at her, wondering what to ask first. I'm sure there were a hundred questions going through that kid's mind. The first question that he asked, though, was, "Where is Faith?"

WOW! He knew that there were two and which one was missing! At the time, the twins were on different sides of the NICU from one another.

He also asked about Grace's "boo-boos," referring to the many tubes, IVs and other things that made her pretty scary-looking. We told her that they were just small ouchies and that she was fine. His second question, "Did Faith hit her?" That kid just cracks me up.

Sunday came with a little more drama. I saw the girls in the morning and later on, Todd came to the hospital to see them before coming up to my room. He walked into my room and said, "We need to talk about Grace."

Those are words no mother wants to hear. What was wrong with her? What's wrong with my baby?

Apparently, Todd had just happened upon Grace's crib as the on-call doctor was checking her out. He asked the doctor the usual questions, but what came back was more than either of us expected.

Apparently, Grace's need for supplmental oxygen had gone up and that, along with some lab work, indicated a few things that could be wrong.

1. Infection
2. Blood vessle in the heart that had not closed all the way (PDA)
3. Repiratory distress syndrome (RDS)

I flew down to the NICU in record time and caught the doctor on his way out. He explained to me of all of these things, the infection was the worst-case scenario, as preemies have a hard time fighting infections. They hadn't even waited to test for infection -- they had already started her on antibiotics.

The PDA was a condition caused by a blood vessle that closes before birth, but is often left open in preemies. It often closes by itself, but needs to be watched just in case, as it could cause fluid build up in the lungs.

The RDS was something that would self-correct with time, but would need some special consideration with oxygen and drugs.

Now I admit that none of this is worth stressing a whole lot about, but I lost it regardless. After all they had been through, I didn't want either of them to suffer any more. I just wanted them to be healthy.

The doctor assured me that Grace would be fine, no matter the diagnosis, and that a cardiologist would be by the next day to take a look at her heart CT and make a recommendation.

It wasn't easy to wait to see Dr. Brownlee, the cardiologist. I asked questions and bugged the NICU nurses all night long, wondering if Dr. Brownlee had come by or called. I called before the NICU even opened on Monday and finally, Dr. Brownlee showed up in my room.

He told me that Grace did have PDA, but that it was so minor that they were just going to "wait and see." As long as her oxygen levels continued to improve, we would be in good shape. He also told me that she has an Atrial Septal Defect, which is a small hole between the two atria of the heart. As he put it, "It's like a freckle that you go see the dermatologist about."

I confirmed that the ASD was no big deal when ZZ told me, "Oh I have that. It's hereditary!"

Well now we know that not just my good looks and sparkling personality got handed down to my kids. So did my sister's bum ticker. :)

The rest of Monday was much the same, with good reports from both girls' nurses. Bilirubin levels were going down, weights were going up, both girls were pooping and peeing like pros, etc... I was very proud.

Tuesday brought great news -- I'd be going home and Faith had been taken off all supplemental oxygen! She was breathing on her own without any problems! I was so proud...

I left the hospital around 2:00 that afternoon and it was a very hard thing to do. I hated seeing the hosptial in my rear-view mirror, knowing my girls were there. On the other hand, though, I was looking forward to being home and spending some much-needed time with Devin and Todd.

I won't lie -- a lot of tears were shed that day, but I did okay. Todd went to go see the girls that night and it warmed my heart knowing he was there with them.

On Wednesday (yesterday! Wow! I never thought I'd get here!), Todd and Devin drove me to the hospital so I could spend some time with the girls doing Kangaroo Care. I got two-and-a-half hours of pure baby time. It was awesome.

For those of you who don't know what Kangaroo Care is, it's a way of bonding with a child, especially a preemie who spends a lot of time away from his or her parents.

It requires you to wear a button-down shirt and no undergarments. You unbutton your shirt about halfway down and put the baby, who is also sans any clothing but a diaper, inside your shirt. Then you swaddle them up in your shirt and blankets and kick back in a recliner. There you are -- just the two of you. Heartbeat to heartbeat, skin to skin. It's so perfect and the effects are immediate. Heartrates go down, breathing evens out, pulses becomes steady, etc. The long-term benefits go on and on, too. If you're interested, check it out at http://www.marchofdimes.com/prematurity/5430_6074.asp .

So I got some great bonding time with each girl, right there on my chest. An hour with one, an hour with the other. It just made my heart swell up.

Wednesday also brought more good news: weight gains for both girls, no more photo-therapy for Faith, only one more day of photo-therapy for Grace and, best of all, a move to the "white room!" Apparently, when you're in the "pink room," you're considered a sick baby -- the girls spent Friday-Wednesday there. But when you get moved into the "white room," you are just getting fat and are on your way out the door! The white room is just for babies who are learning to eat and maintain body temps. Again, I was as proud as a mama can be...

Wednesday night took Todd to the NICU as well where he swears he got a smile out of Faith. I think I saw one too. :)

And so here we are with today! My hormones are raging and I'm a basket case most of the day. But I did get to spend some time with my girls this morning and got even more good news: Grace is now off of all oxygen and the photo-therapy lights. Both girls have had all invasive lines removed (IVs, TPNs, etc) and the only wires that are attached to them are wires that monitor their vitals. They both still have feeding tubes, as they have not learned to coordinate the suck-swallow-breathe mechanism required for bottle and/or breast feeding. That is usually not present until 33 or 34 weeks, so we hope they'll be working on it soon!

Now that is one condensed version of the past week, but I'm proud of myself for only hitting the highlights. Now I can get back to posting the good stuff daily, instead of two or three days late!

Thanks for bearing with me!

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