September 30, 2008

11:00 am
We got to talk with the doctor today, and she spent so much time with us. She is great, and very thorough with us, which we like. We had the opportunity to ask all of our questions, and are a BIT (I say a BIT, not completely!) more comfortable with "the plan".

The neonatologist thinks that BOTH boys likely have a true milk protein allergy. Evan had that bad case of the spits yesterday (these are not like normal baby spits...he spit LOTS through both his mouth and nose, needed to be suctioned, had a bright red face from pain, and CRIED very hard during and after his spit up). Then Alec started having those high residuals, and this morning, had some blood in his poopy diaper. The doctor thought that it might be due to a fissure on his hiney. She pulled his feedings way back to 10 cc, then bumped him back up to 20, where she was going to keep him for a couple more feedings to monitor how he did with it.

In fact, the doctor wonders if this is what Evan had all along. She says that our boys have "very sensitive guts". So...for now the plan is as follows:
Both Boys- Take them off the Similac fortifier
Evan- Bump up his feedings to two ounces to help him get the calories that he needs. They're going real slow, 1-2 cc every OTHER feeding to 60 cc (he's at like 42 or 48 or something?).
Alec- He was pulled back to 10 cc after his poop this morning with blood, then bumped back up to 20 cc, where they'll keep him for a couple feeds to see how he does, how his tummy looks, and how his poop looks. Then get him back up to his regular feeds, 28 cc, and eventually get him back to his every 3 hour feedings and go from there.

The doctor discussed that they WILL Need extra protein and calories. Preemies need to not only grow steadily, but "play catchup" since they are born smaller and need to catch up to where they should be. She showed us the boys' growth curves. Alec was born in like the 3rd percentile, and has now dropped down and is not even on the growth chart for weight :( His head and length are slow growing also, going up bearly if any. Evan's weight has gone up, but his length has not. The doctor said that Alec especially, she WILL need to fortify to give him, or them extra calories and protein that they need to grow, and play catch up. I asked if there was a soy fortifier, and she explains that soy is NOT suitible for preemies, does not have what they need in it. I asked if it could be a lactose intolerance, and she said that she does not feel that is what it is, and gave several reasons (all very medical, all of which I have forgotten...so much info!!!). She said that she CAN try to fortify with Enfamil, to see if the boys digest the fat compound in Enfamil better than Similac, OR she will speak with the dietician about using Nutramigen (an expensive, hypoallergenic formula) OR other similar formulas, to find out if these are options for the boys as well. Basically, it's going to be trial and error to figure out what their "sensitive guts" can handle, and get them growing. NORMAL growth is at least 1 oz per day, and little boy Alec has not been doing this! We need to get him growing.

I explained that I simply was unsure if I could cut ALL milk products from my diet. She said that for now, to continue to eat normally, or cut out drinking straight milk, eating straight cheese, etc., and that she'll watch the boys carefully, and start by getting them back to a baseline and then figure out how to fortify their feeds from there.

I asked her why she thought that it was a milk protein allergy, if they were doing great prior to fortifying their breastmilk. She said that she didn't feel they were "doing great". She said they were doing okay, but not great. She said that they were both very gassy, etc. and not exactly where she would have liked to see them. She wonders if the bloating and gassiness may be part of the reason that Evan isn't nippling well, because at 37 weeks, he should now be nippling better than he is. So she is wondering if all of this is related. *sigh*

So...trial and error. We sit and wait. So much feeding intolerance for our boys. So much time...and still quite a road to go. Uggh. I so thought they'd be home by now. Now I see, we're really not even close.

And and a small update on me... I forgot to mention in all my updating on the boys yesterday, that I phoned my OB because at 3 weeks post partum, I can already tell that I have a muscle separation in my abdomen, similar to what I had after having Olivia. I went to my family doctor back then as I had some pain, and he wanted to send me to a surgeon, but I waited it out and it did get better. This time, my belly is MUCh bigger than it was with Olivia. Not FAT big, but almost hard/big, like my organs are pushing out. In the mornings, after my muscles have been relaxed all night, I feel pressure, again, like the organs are pushing out. And when I cough, my belly goes OUT, not IN like it usually does. I just feel like something more is wrong, so I phoned the doctor. He said that I have a "severe diastisis recti", meaning a severe separation between the abdominal muscles. He said no abdominal exercise of any type until he checks me at the 6 week mark. He said to be patient, and wait till the 6 week check. If it doesn't get better, I may need abdominal surgery, called abdominoplasty. We'll see I guess!

7:00 pm
It is so amazing holding my boys. Gosh how I miss them when I'm not with them :( Two perfect, precious angels. Not a ton to report tonight.

Evan- Cute as ever ;) He drank 30 ccs of his 48 cc bottle for me tonight! Good work buddy!

Alec- The nurse told us that his orders say that he should be on 20 cc's still (I think?) but that he can take as much as he wants by mouth. Curt fed him tonight, and he took all but two cc, and when the nurse came back, she was pleased as she'd put in 35 cc, meaning that he took 33 cc! Good boy Alec!!! He lost a tiny bit of weight, which I guess is to be expected as he was on lower feeds today. But uggh. We need to get this boy gaining weight!!!

And JUST in case anyone had a yearning to know....I had Clogged Duct #2 tonight. I tell you...these little clogs hurt WORSE than my C-Section...or *I* think so. This one was SO darn sore. I think that I have it on the mend with the shower, massage, pump technique...but we'll see. Pooey on clogged ducts.

But, I keep on pumping away, with my boys in mind. These two boys and their sensitive tummies...both the doctor and the nurse today (who happened to be my lactation consultant!) said that they would have been FAR worse had we needed to start them on formula directly from the start. They have such a hard time digesting, and with their GI tracts. So, I feel GREAT about all my efforts. Hope they continue to pay off, and that they can continue to drink the breastmilk, and that I will be able to maintain some semblance of a regular diet for myself, or at least something that I CAN do with my limited food variety. I pray that their tummies handle the breastmilk well, and that the doctor and nutritionist finds a good alternative for a fortifier to help them gain weight and grow!

I told our night nurse tonight how much we missed them, and prayed for them to grow and come home. She said something like, "I wish I could paint a saying on the wall here that said 'Patience is a virtue'." She talked about how it's so important for parents to be patient. I said, "Well, sure. I understand the need to be patient, but it's different when it's YOUR kids here in the NICU." She then went on to tell me that she had two kids in the NICU, and did so very matter of factly, and without a whole lot of empathy it seemed. I thought, I wish someone could tattoo on your forehead, "NICU nurse, empathy is a virtue." But I brushed it off ;)

*I* think it's okay to miss our boys tremendously. *I* think it's okay to feel impatient and wish every moment of every day for them to get big, strong, and healthy and ready to come home. *I* think it's okay to dream about the day they DO come home, to think about holding them all day and night...to dream about what life will be like. *I* think that it shows that we LOVE our boys. We DO love them...tremendously. We can't wait for you to come home sweet boys. We're all waiting for you...praying for you...You're doing great!