September 29, 2008

Well, they warn you when your babies enter the NICU that it'll be a roller coaster ride. This has been true for us thus far. They say three steps forward, two back, four forward, 3 back, etc. Today has been one of those "step back" days for both boys. Nothing huge or earth shattering, but not a step forward day.

Evan had a bad case of spitting up mid day. He had eaten at 10:30 am, and when I got there at noon, had already spit up twice, quite a lot, through both his nose and mouth. The nurse suctioned him out real good. I asked why it was a big deal really, because so many babies spit up, Olivia included. She said that a couple times is fine, but several can be an indicator of feeding intolerance, and/or more tummy/gastrointestinal issues. In the next 30 minutes, he spit up (nose and mouth) 3 more times...lots. It was pretty scary actually. When he'd puke, it'd come out both his mouth and nose, his face would get VERY RED, and he'd SQUEAL this loud squeal as if to tell us that it was hurting him :( The nurse suctioned him several times with the bulb syringe, and also then with the "big guns"..aka the deep suction on the wall next to him. The doctor came in and looked at him, and ordered an X-Ray, "just in case". The X-Ray showed lots of air, but nothing concerning. Basically...he needed to pass the air out (aka...burp/fart...ALOT!). Likely, the air caused his continued pukies. So...what the doctor did was to take him OFF of his breast milk fortifier. Coincidentally, he had TWO feedings with the breastmilk fortifier which was begun earlier today.

When the doctor came into the room, she explained that he had lots of air in his tummy, and that she had taken the fortifier out of his orders. I asked her if this might have something to do with the issues he'd had prior with his NEC, and she said that she wasn't sure. She then brought up Milk Protein Intolerance. She asked that I stop eating/drinking any/all milk products (Milk, Cheese, Yogurt, Ice Cream). I told her that I would surely TRY but that I don't eat a wide variety of foods, so cutting out all milk products will be very difficult. She asked that I do it for 2 weeks to see if it helps, etc. I told her I'd try.

On my way home, I starting thinking more and more about taking milk out of my diet, and started feeling a little defeated. If you truly think about all of the things that have milk and cheese in them...the things that call for 1/2 cup of milk, or have cheese sprinkled on top...it's ALOT. I looked at the menu that I'd prepared for the next two weeks...home made pizza- NOPE (cheese), scrambled eggs with cheese and ham- NOPE, open face pizza burgers- NOPE, ham & cheese potatoes with corn- NOPE (I could have the ham and corn), chicken and rice (YES!). You really dont' THINK about how much you have cheese/milk IN your diet until you are forced to take it out. So I started to feel defeated...because I really don't know if I CAN take all the milk products out of my diet. Then I started feeling selfish...like I would be doing a disservice to them...and why COULDN'T I just do it...but really...I don't eat a while variety of foods, so to cut out milk and cheese especially...uggh.

So Curt and I talked ALOT about it. It seems to us that there's a pretty strong correlation between Evan's feeds being fortified, him taking two full feeds of fortified breastmilk, and then having the spits. Seems that is more of an answer to his spits than a true Milk Protein allergy (which is the doctor's concern as the fortifier is milk-based). I guess I just don't understand why she wouldn't just take the fortifier out BEFORE having me change my diet, etc. I would just really like them to stay on breastmilk, and fear that truly, I will NOT be able to cut out milk completely from my diet. It makes me feel bad...almost like I'm failing them somehow! Uggh again!

I did call the doctor to ask her about the above stuff (aka..why not just take the fortifier out), but she didn't call me back. I really only had a few minutes to talk with the doctor today. I never even got to talk with her about her new orders for the boys, and she didn't even do her rounds on our boys (and I didn't leave until 3:00 pm). The NICU was EXTREMELY busy today!!! They got three new babies this morning. Two 27 weekers (twins) and one full term little guy that had respiratory problems, so they were hustling and bustling all morning. I absoultely understand that things in there get very busy, and she couldn't talk long. So...tomorrow I'll try and catch her to talk more about all of this!!!

Alec got "very sleepy" today. He was very tired for his first couple feedings of the day. They did get them in him by mouth, but it wasn't easy they said. When I fed him at 2:00, he only took half of his bottle, and needed his G-Tube put back in (after nearly two days of having it out!). So...a minor setback for Alec today too.

7:30 pm
We had dinner with our family today, and then went up to the hospital after that. The boys were low on milk, so we needed to bring a bunch up. Funny...tonight I had to bring up Hindmilk and Foremilk, and labeled the stuff from today Hindmilk- Milk Protein Free, Foremilk- Milk Protein Free.

And speaking of the milk free, here's what was on the menu at the family dinner:
Fish (marinated/soaked in milk then breaded), chicken Breasts, cheese potatoes, a veggie platter, cheese and sausage tray with crackers, rice krispie treats

So I ate: chicken breast, sausage and crackers, and a rice krispie treat. Fun dinner.

Anyhow, we went up to the hospital tonight. We found out that Evnn had NO more spits since taking the fortifier out. NICE work buddy!!! He was comfortable and doing well when we were there. Still taking his full feeds, which are 48 cc's by the way!

Alec on the other hand, had some big residuals this afternoon, so they took the fortifier out of his orders as well. Stupid old fortifier.

Olivia was pretty tired and acting up a bit, so we didn't stay too long. Curt fed Evan (he took a little fromthe bottle for him then the rest through is tube) while I pumped, then we hit the road.

I'll update more tomorrow when I have talked with the doctor.

Keep the faith. Today was a bumpy day for the boys :(