They Said There Would Be Days Like This

When I walked into Natalie's room yesterday (Wednesday) morning, the nurse looked up and saw me then said, "Oh good, the doctor wanted to know when you got here, she wants to talk to you."

The concern must of shown on my face (none of the doctors have ever looked for me before) because the nurse was all, "No, no, everything is fine. Natalie just didn't have a great night last night and they had to run some tests, do xrays and adjust some of her settings."

She gave me a brief rundown, said all her tests came out great, but they did bump a few of her settings up and her xray looked a bit hazy. I decided just to wait for the doctor to explain everything. She told the doctor I was there, but she was still on rounds and would come by later in the day. That, of all things, made me feel better because she was not concerned with seeing me right away.

So, she had a great day. Her NAVA settings were raised to a higher level (they had gradually been brought down the more she could do on her own) and they lowered her feedings just for the night and put them back to normal during the day. The fact that she was doing really well on the changed settings was good because it showed there was not any large underlying problems, but she was getting tired of doing everything on her own.

Her doctor came and spoke to me and basically said everything the nurse did. She had a bad night where she was desatting and bradying often and deeply. They ran tests which her results came out beautifully. The xray of her lungs does show that there is some fluid in them which is not abnormal for a preemie. It has something to do with the hole in their hearts pumping oxygenated fluid out that gets into their lungs. I do not know, she kind of lost me medically, but I got the gist: her hole needs to close up to keep this from happening. She has a "medium" size hole, and it should close on its own, but they are watching it. For the fluid they are going to start giving her diuretics. They said some babies only need them for a few weeks, some babies go home still on them and some babies end up having to get surgery, but she does not foresee the surgery route for Natalie (though it could of course happen).

I told Jimmy that I know I have been tough and handling things well, but if they have to do surgery, even if it is super routine to them and they have done it a million times blindfolded, that I will not be tough that day! But so far it looks like we will not have to test my nerves and hopefully that stays the case.

The doctor said she was still doing really well, that this is not a real set back. They keep drilling into my head that she is still really young. Micro Preemies are babies before age 28 weeks, and she will be 28 weeks gestation this Friday. So, she is still really young for the type of breathing she is doing on her own and how little assistance she uses. Even though it is 3.5 weeks later, if she was born now, she would still be considered extremely early.

As for today, she had another great day. With her settings raised, I feel like she has relaxed a lot more and everything just seems easier for her. Obviously, they have to keep pushing how far the babies can go on their own. They cannot get comfortable letting the machines to the work for them, so it makes sense that occasionally they will push her a little past what she can keep up with.

I did not hold her yesterday. Since she had such a crazy night, I did not want to put the stress of moving her in and out of her isolette, so I just let her relax. I missed holding her like crazy though and was happy to do Kangaroo Care today.

Other changes: she is huge. She really looks gigantic. Anyone who has come to visit her this week is a little shocked when they see her. Yes, she is only 2 lb 4 oz, but somehow she looks twice the size of when she first was born. They do not measure her length, but she has definitely grown. She was 13 inches long when she was born, which actually is pretty long considering her due date, so I am curious what she is now.

She has progressed to slipping her fingers through the velcro straps that hold her mask on her face and I think getting very close to figuring out how to get it off. They said no matter how complicated they make the masks, these little guys find a way. She also swats at her tube that hangs above her (very like a cat) and sticks her butt up in the air pushing onto her knees. When she gets mad she yells at everyone and she seems confident that it is ferocious. It is pretty much the cutest little mewl in the world, but we will let her pretend.

I have been meeting Jimmy home for dinner and then he runs by at night and hangs out with her. I think he likes the quiet of the unit at that time of night and he just relaxes with her. He just got back from doing that and told me how she opened her eyes and really looked around again like she did the other day with him. Apparently, she opens her eyes for Daddy, though the nurses did tell me they will do it more when the room is darker because the brightness bothers them.

So that is the 411. Hmm I guess I am dating myself with the '411' term and anyone born after 1995 has no clue what I'm saying, but that is the info on Miss Natalie. I was stressed about her minor set back, but they told us since the beginning that it would be 4 months of a dance, two steps forward and one step back. So, we will she where she goes from here. She has had two such good days I would not be surprised if they started lowering her levels again. Of course, I will keep you posted.

On a completely unrelated tangent, I just have to say that yesterday this blog reached 10,000 page views. Not visitors, but how many times her page has been opened (they then break it down by blog entry, each one reaching 300-700 views per). Considering I created this on a sleepless night in the hospital to keep my family posted and as a journal for myself to chronicle this journey, I am amazed with how many people have read and continue to follow our sweet girl's progress. We are forever grateful and know you are all cheering for her. Keep up the good work - the prayers are working and will carry myself, Jimmy and Natalie through these months with more grace than we could ever achieve on our own.

And the real reason you stopped by, the daily dose of Natalie Rose:

Daddy and Natalie during the nighttime visit