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Thursday, January 5, 2012

Keep beating, little heart.

After I's two month cardio visit and the start of her medications (Lasix and Aldactone), we began to see improvements in her mood and behavior. Her breathing was quiet again and had slowed down. She was more alert and spent more time awake. She nursed faster and more actively without as many sleepy breaks mid-nursing session. How much of this is due to regular growing and getting older and how much to the medicine, I don't know. But she was happy and active and aside from her heart defects, healthy.

At her three month cardio visit, she had gained just three ounces. Her cardio doc wasn't ready to jump to surgery just yet--the longer he can wait so she can get bigger and stronger, the better. Either the holes will close on their own or she will physically be better able to make it through surgery and recovery. But growth restriction is one of the things that leads to surgery sooner :( So we need to get I to gain some weight! The cardio sent us off with a script for breastmilk fortifier, the powder they mix in for NICU babies to add calories and nutrients to get them to gain weight, instructions to take her in for weekly weight checks to make sure she doesn't start losing, and I needed to find a pump because hand expression wasn't going to cut it.

We ran into a few problems along the way:

1. The first few pharmacies I tried did not have breastmilk fortifier and did not know where to get it. The IBCLC I talked to didn't know where to get it. The RN and IBCLC at a local hospital didn't know where to get it. And it was the weekend so some people weren't even in the office so this particular mission gets shelved for a few days.

2. I start pumping in earnest and am doing quite well considering I have not been regularly pumping. I seems somewhat amused at all of it but has little interest in actually drinking expressed milk from the bottle, no matter who gives it to her. She has never much liked artificial nipples and it swiftly turns into an outright hatred. Now, she cries if she just sees someone pick up a bottle and that crying swiftly escalates into shaking and vomiting. Oy.

3. Her regular doctor fires her as a patient the following week. I guess he can't help us find the fortifier.....

4. We try dropper feeding. It is moderately successful but such slow going I am not sure it would be at all helpful in getting extra expressed milk in her. And then she moves into full-on hatred for that as well. Cue bottle reactions to the sight of droppers.

5. At the suggestion of an LC, I talk to a NICU nurse at the hospital where I was born. The fortifier I was prescribed is only available at hospitals and I will not be able to get it. The over-the-counter fortifiers on the market are not what we need. The NICU nurse says the best thing we can do is separate out the hind milk when I pump and just give her that to supplement. I like this idea :)

6. Meet with IBCLC and get set up with a SNS. I is irritate but agrees to nurse with it. Hurrah! Extra hind milk is delivered! And then the next time, she moves into full-on hatred mode for this as well. *sigh*

Just a few days after her doc fired her, I meets with her new pediatrician. Dr. A has had patients with heart defects before so she has some experience plus she herself is a breastfeeding mom so she is wonderfully supportive in that area as well. In her opinion, since I is stressing out so badly at any type of feeding other than nursing, we need to just nurse. Stressing and crying and throwing up is not going to help and she was in agreement with me that it wasn't helping, especially since I lost a couple of ounces over just the few days I had been working with her and trying to get her to take extra milk in various ways. Dr A thinks I's weight stall is mostly caused by her medications because she is very alert and active and even hitting physical milestones early.

I continued to pump, though, and am building up a freezer stash--this also gets I some extra hind milk since at least once a day I pump off some fore milk and then nurse her :) Pumping is also upping my supply so that it literally comes pouring out of my nipple once she gets things going--very little effort meals for her ;) A week later, she had gained nearly a half pound. The week after this, she started army crawling, playing her own version of hide-n-seek where she rolls from one side to another giggling every time I move out of her sight, grabbing toys on her playmate toy bar and pulling them towards her and then letting them go so she can laugh as they bob up and down. No weight gain that week but her ped is impressed by her newfound motor skills and how active she is. The next week, today, she is up another half pound. Hopefully Tuesday will see a little more gain and a happy cardio doc :)

Most of the time, it is hard to believe our little girl is in congestive heart failure. She smiles and laughs and squeals in delight most of the time. She loves to play with her big brothers. She is a cuddle bug. She will talk your ear off if you have time to sit and listen. She likes to stand and bounce whenever someone is willing to support her so she doesn't fall over. She now tries to escape by army crawling away whenever she is down on her play mat. She is so full of life and love and happiness and joy. Keep beating, little heart, keep beating.