Have Pump need Power.

Yesterday there was a very strong wind storm in the area. Even today some places are still without electricity. Anyone who was outside yesterday can attest to all the debris on the roads and the strong winds. I was out visiting the lactation consultant in Merrickville so that we can get Miss C solely on the boob and stop the whole bottling thing which will hopefully mean the end of pumping. So what does all this have to do with the power outage. Well I still have to pump to get milk for Miss C at least till we go Direct from the Source. And do you know what powers the pump...electricity.  Hard to pump when there is a power outage. Luckily as mentioned the Lactation Consultant has been my savior in more ways then one. I was able at least to keep Ceilidh satisfied till the power came back on 5 hours later. Worse case scenario I guess I could always pack up my pump go the the hospital and use there power. They always have a generator. Of course how silly would I look "Hi my medical emergency is the need for power to pump milk for my child".

Doing what she does best, its a gift.

Well at least this week my mother has been around to help and of course to tell me how I should be doing things. But I guess what mother wouldn't be giving out advice. It will be interesting to see how I do next week when I go solo. I have all sorts of appointments for Miss C so this will be fun juggling traveling, feeding, pumping see why I want to get rid of pumping and just go Direct from the Source. Its like DirectBuy but without the scam. I will keep you posted.

There is no place like home

So the rumors are true we are at home. Sorry I will keep this short as we are all trying to adjust to our new reality which does not leave much time to update the blog. We are all very happy to be home and be a family together. I hope to update everyone on our release from the hospital and how our first week home has been early next week. For now picture this all 4 of us on our bed just chilling like a family. Miss C in M's arms and Trouble our furry child between us.

Going Home?

Wow. We may get our wish and have Ceilidh home for Easter? It has suddenly dawned upon Dalia and I how un-prepared we are!!! No the crib is not done, apparently we need to give vitamin D drops, and we still havent found our nany.

Needless to say rasing livestock is so much easier. All you need is a food supply, a heat lamp and a building free of drafts. And now I have to contend with a house full of stuff that people have given us out of the goodness of their hearts and I need to learn how to use it.

Stay tunned for further adventures.

A room with a view

Yes we are still in the NICU, no 4th floor vacancy. But we did change rooms, now we have a room with a view, okay so it's of the parking lot but we have windows and natural light. I don't know if Ceilidh appreciates the new room but I sure do. Tomorrow will be Good Friday and it will be three weeks since Ceilidh was born and that we are at CHEO. How quickly time flies. The question of course is will we be home in time for Easter...the answer maybe. Since last post we have changed the method of feeding. Feeding tube is out the window. Actually little Miss C did the honors by pulling it out herself. The other thing that is out the window is feeding every three hours. We are trying this radical approach it's called breast feeding when she wants and how much she wants. I know shocker! The other method of bf, bottle, and then feeding tube was very labour intensive and not realistic as to what we would experience once we bring her home. Although she did gain weight, which is what the doctors wanted.

Late afternoon nap basking in the sun

But now Ceilidh has proved that she knows how to bf and can do it quite well, so the action plan is for the next 48 hours see how she does ie gains weight and if she does well then she can go home. And if she doesn't do well then it might be a combination of bottle/bf we will cross that bridge in 48 hours. But everyone is delighted on her progress, she truly has come along way in three weeks.



Weight gain

Little Miss C is still in the NICU. Don't know when we will be moved to the 4th floor or "General Population" as I like to call it. All this depends on availability both at the NICU and the 4th floor. So for now we just take one day at a time knowing that we may have to move later that day.
For now we are still learning how to feed but I must say we are making progress. Yesterday she bottled most of her meals. She doesn't always have her whole feed by bottle and she has to be topped up by feeding tube but this is a drastic improvement. The nurses say the light has gone on. She generally wakes up for feeds now. This morning I bottled her 52 cc which meant she only needed 8 cc by feeding tube. Trust me this is great.

But now for the issue. Ceilidh hasn't put on any weight. She hasn't lost weight either but at this point she needs to be putting on weight. The dietitian has a detailed count of calories consumed and she is getting enough but no substantial weight gain. So the plan for the day is to breast feed her ad lib meaning however much she will take and then bottle her the rest, and if she doesn't finish that to feed her with feeding tube. Did you follow that process. The easy step would be to fortify the milk, however, she is on breast milk and the goal is to get her to consume it by breast which you can't fortify milk if it is given by breast. If she only bottles that is a different story. So today's plan is breast, then bottle, then maybe feeding tube. If this works we continue this route, if not we up her feed but then the problem with that is will her tummy handle it. 

I think I will focus on her just getting the food in. And speaking of food I now have to go feed Miss C. No rest for the wicked.

Moving on up

Today during rounds the Neonatologist mentioned that it was time for Ceilidh to be moved out of the NICU and on to the 4th floor. She is still working on feeding but that at the moment this her only issue. So you may think that moving her out of the NICU would make me very happy, however, I went into panic mode. Here at the NICU we live the life of luxury, at least in terms of medical care. When Ceilidh was first admitted she had one nurse devoted to her care. As she slowly needed less and less interventions ie medication and what not, she then went on to share a nurse. Now that she might possibly move on to the 4th floor I have no idea what level of care she might get and this unknown has me scared.  Since we knew that Ceilidh was going to need surgery we toured the NICU and we also had great friends who were able to share there recent experiences with the CHEO NICU. Not so for this mysterious fourth floor. 

Ceilidh with no feeding tube

I called said friends to share my panic and hysteria. They knew exactly what I was feeling and even though their daughter went to a different part of CHEO they could share their experiences with me. They apparently wanted to send them home with the feeding tube still in use and wanted to train them how to use it. They pushed and got to try feed her without the feeding tube in place and this seemed to do the trick for them. Armed with this knowledge I went back to feed Ceilidh. As it happened she pulled out her feeding tube yet again (actually for the second time today). It was clearly a sign. I asked the nurse to leave it out and see if we could feed without it. Ceilidh took almost all her feed (55cc instead of 60cc) and she had no spit ups. Yes it took 50 minutes to accomplish this small triumph but it showed them that she could indeed do it, just takes patience and work. Her next feeding we fed her earlier because she was wide awake and looking hungry,  this time we tried the breast and again she has done the best that she ever has on the breast. Granted she did fall asleep and probably only consumed 10cc but she showed us she can learn.

They did have to put the feeding tube back in her nose but I am hoping that these small victories of today can be repeated. And if we have to go to the scary 4th floor (only scary because I don't know what to expect) we hopefully won't be there long as long as she keeps things up. When we will be moved to said floor we don't know as there are currently no beds available but it could be as early as this weekend. I really do hope we won't be there too long.

Occupational Therapist



Miss C being cleaned up



The occupational therapist came by the other day to assess the whole feeding predicament with Ceilidh. The problem being that she doesn't seem to bottle her whole feed (60 cc) in one sitting. After the OT spent some feeding time with us her watching the prognosis is that Miss C knows what she is doing ie she can grasp the bottle and suck, she has those capabilities, so the issue is not capabilities. The consesus is that she doesn't deal well with the tummy pressure caused by bottle feeding or breast feeding. When she is fed by feeding tube it goes in so gradually that she can tolerate that, but even then it is over 40 minutes and it was over 50 minutes just the other day. Left to her own devices it would take her too long to feed before her next feeding is due. Not good. The plan for now is to have her either bottle or breast feed while she is being fed simultaneously through her feeding tube. So far this has worked really well with the bottle. She takes down 15 cc by bottle and the rest is given by feeding tube. The breast is not going as well but it would also be harder to gage what she really takes in. It also depends on her moods. She is more awake and alert these days, which will only help in terms of her understanding cues to eat. Little Miss C has her own schedule she follows.



Getting Miss C ready to eat