April 30, 2012

be back tomorrow.

So a week ago we went for our routine 2 week appointment.  Recently Ronan has been slowing down in growth like every kid does.  Well last week he lost 15 g. Needless to say that some changes were put in place for this last week.  We go back tomorrow morning.....so we will see.  I will be back tomorrow with more on everything. 

April 17, 2012

That's it I am DONE

I have been struggling with breast feeding now for about a month.
I have been notice the beginning signs of me not being able to satisfy him.
but I have been working hard to put in the effort to keep it up as much as I can while still letting him sleep. all of my kids have been the same. between 3 and 4 months they start to show signs of being hungry, and I am not what will make it go away.
my husband and I took a prenatal class when pregnant with our oldest child. they went over all the regular stuff about birthing, labor, after care, and breast feeding. they stated all the info and support you can get for it. I don't know for sure but am pretty sure that he thought they were all hippies or weird people that like to talk about feeding their kids till they are 5, and how to do it and support each other in all of it. when we had our daughter and nursing started off not great, with having to deal with inverted nipples and milk that didn't come in right away, and just inexperience. he looked at me and said "I thought breast feeding was naturally easy, God given and the way it is supposed to be....well it doesn't seem to be". but my dad summed it up in the first week that we had her and were visiting and I was trying to get her fed he walks by me and says "2 rookies trying to figure it all out". SO TRUE.
Well for me it went even further....once I/we got the hang of it, it didn't last long. supposedly milk supply doesn't last until you choose to be done.
my daughter was starting solids at 3 and half months and weighed 11lbs 11oz at 5 months. at 6 months she weighed 11lbs 5oz. she lost weight. my doctor said I needed to start supplementing her with formula and start it off with preemie formula that is high calorie. I said no supplementing her...I am just plain done fighting with her and she was on formula full time and happy and full and slept through the night :D .
So when Elias started to show signs of not being full and the such, well we started supplementing at 3 and half months and solid food at about the same time that he was on formula full time at 5 months.
Well the time has come.
Ronan is special because he has had to have a bottle since he was just under 2 weeks old. He needed to be given vitamins and saline solution. God granted me a gift of being able to pump for him for about 2 weeks or so...which is a miracle. but then I used formula. I have always used as little as possible to accommodate him keeping his saline solution down. it was always little enough that I nursed a bit at the end, but that changed almost to the day that he turned 3 months.
At 2 months I wanted to quit, but I got a big guilt trip from the doctors and a bit from my husband....in his defence he was like why quit when it is still working....I can see where he is coming from, but he has never had a child attached to him everyday for 2 months(at the time, almost 4 months now)6-8 times a day for at least 20 minutes. I don't usually have a space bubble but I also have 2 other kids that like to cuddle and touch me.....I am not a cuddler.
It the last week Ronan has gotten sick...not anything to do with feeding. but it sucks. anyway..... in the last week I have really started to see the signs....actually for the last 2-3 weeks off and on, but very prominently in the last week,or last 3 days.
It has been an inner struggle. He is sick and needs antibodies and a good immune system and the best way to get that is from me, but he is fighting now not me.
In the past few days if I didn't drink enough or exerted more energy than doing day to day minimal chores he would fight. I wouldn't come fast enough for him, then he wouldn't get enough or he would show that he had enough but would want to eat very soon after, which is a lot of what Zandria did.
Today I didn't do a whole lot and drank water pretty good....it was going ok until tonight.
got latched pulled off and fought....finally got some food and then was done, fights burping, but did any way. then he pulls off and doesn't stay on, but stiffens up like a board and won't try.
I let him fall to the nursing pill. I was so frustrated and annoyed and relieved that I laughed.
relieved because I have been praying and begging for someone to tell me what to do about nursing. God is good...He sent the one person that really has the right to tell me that it was time to be done. Ronan. I tried my hardest and then went and got a bottle with formula and he tanked it and was happy after he burped......he can be super full and still fight and whine when the food stops until he burps.
I am on my way to being done, on Ronan's leading it seems. I will try to nurse at my usual times, but won't push it.
i feel relieved, and happy and sure that this is right.
but I am still me, so I do feel a bit guilty when I hear him cough, and when i see the price of formula.

God is Good and God will take care of us.....He has a plan.
His plan I believe is for me to be done now.

April 15, 2012

Been a while....

Well it has been a while. Sorry. I have had a lot going on and have been working on how to write all the things that are swirling in my head.

I am going to start with an update about all that is going on with Ronan and how we are feeling and dealing with all this.

Well last I had mentioned Ronan was 11lbs 8oz. Not sure I put his height on there but that is ok. We have been going more on the every 2 weeks span right now. He has slowed down in his weight gain....we all knew it would happen. The reaction that I got when it happened was not what I expected. It was pretty much at the 3 month mark when most babies slow down a bit in the growth that he also did. The doctors immediately said to put him on enzymes. He weighed 13lbs 2oz, not bad still gaining just over 15 g a day. The ideal of what they wanted was over 20 g a day. Again no lea way....straight to enzymes. Fine I will do what I need to do.

At this appointment they brought everyone in....the physio, dr, and nutritionist. All going over the same thing and saying and repeating the same things over and over. I came home with my head trying to process. I didn't even know what to feel. After I got home and just thought and talked to Jer I realized that I felt like I was being drilled all of the same care of Ronan needs again because they thought I wasn't doing a good enough job taking care of him or following their instructions. At this same appointment I got the guilt trip about nursing. It was hard.

The enzymes are a pain in the butt, but got to do what we got to do. I empty a capsule into a little container and then put half of it on a spoonful of apple sauce. Apple sauce because it protects them until they get to the small intestine. They told me I could do it with just dipping my finger in each and letting him suck it off to get it in him, but had to check his mouth after to make sure none of the beads were left in his mouth because they can start to break down in his mouth and enzymes are made to break things down including gums and cheeks. Well only a dab of apple sauce is not going to cut it in my opinion....so he gets a spoonful and is doing awesome. He gets them before every feeding except if he eats at night...I am too lazy and I am not going to mess with him going right back to sleep....the enzymes can make him really gassy.

But must admit that the enzymes have helped with his poops looking more normal. Not as greasy or mucusy. That is a bonus.

On Tuesday at his appointment they were expecting him to go back up to that at least 20g a day weight gain now that he was on enzymes.

Nope. He gained 6 oz in 2 weeks. He now weighs 13lbs 8oz. That is a little over 12g a day.

Yup. Should have seen the shock on their faces.

I understand that they are concerned and have their goals for them but they have to remember the family he comes from and his genes. Even tho his genetics say he has cf, he is still my child and the biggest thus far of my children....they can't change that with anything.

So they measured his length and charted him at 50th percentile and talk amongst themselves in a different room, then came back to tell me that they would stick to what we were doing. I wanted to say I told you so to them about him not gaining like crazy, but I didn't. At this point they also informed me that cf kids tend to do better when they are at at least the 50th percentile. Good to know...kind of wish I know sooner, but whatever. We realized, Jeremy and I, that they were trying to push the enzymes before the doctor went on mat leave this week. I understand that, she wants to make sure Ronan is covered, not missed or forgotten. He is going to be seeing doctors that aren't as devoted to cf as the other doctor was.

Now since we are on enzymes full time, I am having a hard time figuring out why I am beating myself up about nursing, why am I fighting with him, why is it such a big deal when he is already getting help with the digestion and even with his immune system. I didn't mind nursing my other kids, but have come to hate it this time around. I know how important it is to him, but I also think that my other kids need me to not be tied down by always trying to keep it up, plus I am beginning to not be happy. I think my family needs a mommy that is happy and helpful, not sitting here dwelling on not wanting to do this or anything else because it is not working. Such a conflict of guilt selfishness worry and stress. what to do what to do. :(

Elias has been coming to all the appointments. He is awesome with this stuff, all the other stuff in our life tho....total defiance. So frustrating. We have a strong willed child. I thought Zandria was....nope I was wrong...God was working up to Elias. Just got to work on working with him to put it to good use, if it doesn't break me first.

Zandria loves school. She is sooo active and fun. I think she is my hypochondriac. Always playing the sick card. Also very frustrating. Doesn't help that we have been sick a lot this winter....I mean A LOT A LOT. I am not positive but think that since November we have had maybe 3 weeks where no one was sick in our house. SUCKS. I know a lot of other families that have struggled with the same this winter, other wise I would think that there was something in our house making us sick. Ronan seemed to skip it all until this week. He got a cold....the dreaded 3 week cold that has been going around. The unfortunate thing is that they want me to call or come in in five days if he hasn't shown improvement, but this cold goes on too long so not sure what to do.

Life is going on for us...the normal in our lives keeps changing...with renos and baby and such....wondering when it will change and not sure if it ever will settle down. Oh well.