Friday, June 18, 2010

Day 81-85 (May 31-June 4)

DAY 81--

Martin and I were able to work with the Occupational Therapist today and on Martin's sucking skills. We used the pacifier and a syringe with 1ml of milk in it. Over the weekend, Martin seemed to develop an aversion to anything in his mouth and freaks out. I truly believe it was because of the nurse who I dislike, just shoving his paci in his mouth. She's been working for the past couple days. I think I'm going to request the charge nurse not ever put her in charge of martin again. i wish our primary nurses could have him every day.

We worked during two of his feedings, teaching him to re-like his paci, by inserting a few drops of milk into the corner of his mouth. This would cause him to suck on the paci. It was hard for him, but now the OT can write that we worked on oral skills, so the doctor doesn't think that he's not doing anything and give him a g-tube.

We tried breastfeeding one time, and the scale said he took -2. yes, negative 2. *sigh* we'll get this figured out someday. . .I hope.

DAY 82--

Martin and I worked with the paci again today. he's starting to like it again, which is nice! We tried breastfeeding, but it didn't go over very well. It's hard, he wants it, and he knows he wants it, but he panics as soon as it gets in his mouth.

The OT helped me, and we introduced a breast-shield. That was hard for me. I never thought I would struggle with feeding one of my children! but it is a huge struggle for both of us. He latched on with the shield, which was great! We decided it's because he can feel the firmness of it, he KNOWS it's there. Martin took 12mls, which is awesome.

He also had an echo-cardiogram. The doctors want to make sure his heart isn't working too hard, because of how hard it is for him to breathe. He was VERY well behaved, which amazed me. Martin is a temperamental fellow, and one never knows what will set him off.

And his current stats: 5lbs 13oz and 18" long!

DAY 83--

Martin's echo looked pretty good the doctors told me. The right ventricle is a little enlarged, but they're increasing his diuretics to a daily dose (instead of every other day) which will help that out.

We had 2 breastfeeding attempts. He took 8ml at the 1st, and 6ml at the second. He's getting it, and now we have to work to become more efficient.

DAY 84--

I was there at the hospital nice and early this morning, and was able to nurse Martin at 9am for his first feeding during that shift. He took 6mls, which isn't too bad. About normal for him now!

And then the day went completely downhill. I went and got some lunch around 11am, and come back to find his oxygen needs completely skyrocketed in the 30 minutes I was gone. They had to increase him to 3L and he was sitting at 65%, which is way high. I wanted to cry. It seems like everytime we start breastfeeding, something happens and we have to stop. This is the third time now. It's like we're not supposed to breastfeed. And that's not something I want to accept.

They took an xray of his lungs, just to make sure everything was ok, and they decreased his feedings to 40mls. They also had to increase his sodium and chloride since his levels were low when they tested them.

The xray showed a lot of air in his bowel, which he'll eventually pass, but it's just hard on him I think.

But the worst part of the day was on the drive home when I get a call from the NNP. They don't usually call when something good happens. And I was right. Becky (the awesome NNP who knows Martin so well!) called to tell me that they had to put him back on the CPAP. He hasn't been on CPAP since the second day he was born. and now, looking back, I don't even think he was on it. i think he went straight to the cannula.

It's a huge step backwards, and yes, I cried about it.

DAY 85--

Here's Martin on CPAP. Rachel, the March of Dimes lady, describes cpap as have a jet engine blow air up through your nose, into your lungs. It helps keep your lungs inflated, but doesn't breathe for you like the ventilator does. He's on 7L at around 40%. It's so hard to see him like this, but he's much more comfortable. It's such a large setback, but he needs it so much.

He was awake for THREE hours straight today. It was amazing. Allison (one of his primary nurses) couldn't believe that he just stayed awake, staring at me while I held and talked to him. He's never done that!

Sara, one of the OT's, called him a drama king, trying to get more attention, since being the cutest boy in there wasn't enough for him. :)

The Doctors are deciding, once again, what type of tests to run on him. This kid is a mystery. Every test they have EVER ran on him comes back normal. They don't even know what to do anymore, all they know is that he just CAN'T breathe right. They're talking about taking a sample from his lung tissue, to see if that can give them any results.

It would be nice to just have something to hold on to, and say "Ok, this is what's wrong. Here's how we can make it better." Here's hoping something happens, or Martin just might be the first toddler in the NICU.



I had to use a breast shield with Emmaleah for the first couple of days. Once he get a hang of it with it you can start weaning him off of it. I know the feeling of not being able to feed you child. At Emmaleah's 6 month appointment we found out that she wasn't eating enough (getting enough from me). She had only gained a couple of ounces (she went from 60%, to 40, to 25% and then all the way down to 5% in weight by 6 months) since her 4 month appointment and she was always acting really hungry and grumpy. I tried EVERYTHING to increase my supply and talked to at least 2 or 3 lactation consultants about it and in the end, with the advice from the lactation consultant we decided it was better for her to just be on formula. She wouldn't take the supplemental formula if she was nursed at all, we tried that for 3 days and it was 3 days of pure hell. It was so hard to come to terms with not being about to supply her nutrition and accept that she needed to be on the formula. I really hope it gets better for you with the nursing and with everything really. But I bet even if for some reason he never got the hang of nursing, you probably have enough milk stashed for months that you can bottle feed him. So at least he would be getting breast milk as opposed to formula. I had to tell myself over and over again that at least i got to 6 months nursing her before she had any formula and that that was most important.

You guys are always in my prayers! And I really hope he wont be the first toddler in the nicu.


So I got caught up. I knew about the bed rest and a while ago Levi told me Martin was born premature but didn't know too many of the specifics. My mum is a respiratory therapist and has told me stories about how hard it is. She did a lot of work in the NICU fighting for infants. It's incredible that the doctors don't know what to test for. All the impressions I got about medicine is how it is scientific and certain symptoms come from certain circumstances genetic/infections/injury or whatever.
Rachael and I are praying for you all.
It was great to see you on Saturday. Please let us know if we can help any other way.

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