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



Crash and burn

Well little Miss C started off well enough with the attempt to breast feed. And then she would forget what she was doing and fall asleep, I wonder how old you have to be to be diagnosed with narcolepsia. At one point I just started to laugh because it was so funny that one second she was awake and the next asleep.
Sadly breastfeeding is not always the easiest thing for babies to get and that is compounded by the fact that for the first week of her life she didn't have to do anything. It was like being right back in the wound she constantly had food in her tummy this time it wasn't because the umbilical cord but thanks to the TPN (total parental nutrition)  which was given to her via IV. There was no need to learn these new fandangle ways of eating ie bottle and/or breast, the indignity of it all, how dare we expect it!
They bottled her only once last night and then she received the rest of her feeds through her feeding tube. Her TPN is now over so she is exclusively eating breast milk. She will actually be on full feeds later on this afternoon, which in a perfect world would mean we might be able to take her home. However, until she learns how to either take a bottle complete with full feeds or feed directly off me then she is still calling CHEO her home. She not only has to take in the feeds but keep them in, which is hard when you get gas while eating and her tummy is still sensitive to pressures.
Speaking of tummy, her incision (if you can call it that since they didn't so much cut as close) is healing well. She is the youngest person I know who has a tummy tuck. They now have it covered with a simple gauze to air it out and promote more healing. She will get another ultrasound next week to continue to check her progress inside her tummy. It will be interesting to see how her psuedo belly bottom will look once it is done healing.

My last note for the day is my ankles are back! The swelling is now gone. I think this calls for a celebration with new sandals. Sadly little Miss C is still naked other then for her diaper so I can't even show you cute booties that she has or any other outfit for that matter. Well at least she has all those receiving blankets.
Thanks for the receiving blankets.

Falling asleep while eating

Miss C bundled up

Okay so I am finally ready to post some pictures of Miss Ceilidh eating. She did really well on small feeds. Heck I was so proud when I first bottle fed her but that was only 6cc's no wonder it was so easy. Friday was harder. Even though I fed her freshly pumped milk she still would take almost an hour to go through her bottle. They generally want her to finish within 30 minutes. This meant that for all her night time feedings it was done through her feeding tube.  By Sunday morning (today) she was up to 53cc and she only took 20cc by bottle and was fed the rest through her tube. The doctor recomended having an occupational therapist consult to see if something can be done to help her feed through the bottle. Generally she just falls asleep. By midnight she will be removed from her TPN (food through IV) and she will be exclusively on boob juice. The doctor also recommended trying her directly on the boob this afternoon to see if she has better luck with feeding off of me then through her bottle. No pictures will be posted of that event. = )

So we continue to wait and see how she tolerates each graduation in feed. For her birth weight she needs to be at 60-70cc of food. With that she also needs to show that she is gaining weight and that she is processing her food, read poopy diaper. Taking one feeding at a time.

M feeding his little girl

Me feeding Miss C.

Extra lobe in the liver does this mean my kid can be a super drinker

How quickly the day flies. And here I thought being on maternity leave would be all about unstructured time. I basically come in to the hospital pump, feed, cuddle and then try to grab food in between to do it again. But she is totally worth it. And she puts up with me and my experienced feeding. But we are both learning. M on the other hand feeds her like a pro, I guess working with animals helps. Although he is still nowhere to be found when there is a diaper to be changed. Although today he has a valid excuse as he went back to work. So Miss C has to put up with mom feeding her.

Last night we got a bathing demo which was lots of fun. Pictures to follow. I know I keep saying that but I think I have a valid excuse. I still can't get over her attitude in all this. She really isn't a fussy baby, and although at first we chalked it up to the morphine she was on, she is no longer on it and still manages to sooth her self. Her favourite state is being all bundled up, there truly is something to swaddling them tight.

But yes back to the liver thing. Well they did an ultrasound, the other day and informed us that she has an extra lobe to her liver. What this means we are unsure yet. The gut doctors have been consulted but there will have to be a follow up in two weeks. For now it is not an issue so we are hopeful it will continue to not be an issue. Maybe all it will mean is that she will have a super liver. You learn to just deal with news like this and just keep focusing on the good points. Again right now no one feels it is an issue. On the bright side when she was born they thought one of her legs was at a funny angle but after the bone doctor was consulted he feels that it may have been something transit. Meaning he doesn't see it now and her legs are fine. Did I mention how glad I am to have a science background. Honestly it truly does help to understand things.

Okay break time over, back to work now. Someone needs cudles.

First feed and First Diaper Change

Today is a good day. The day started off with M getting to hold little miss C for an hour and with her passing another bowel moment. Of course leave it to M to not be around for the first opportunity to change a diaper with more then just pee in it. After all that practice he was doing just for the occasion. Oh well, I got to change her which made me feel more like a normal parent then a parent with a child in the hospital.
More good news from the doctors. First no sign of jaundince, and second they gave the go ahead to start Ceilidh on her first feed. This is what I have been working hard for doing my pumping and freezing. And as my reward I got to feed her, her very first feed. I know it seems so simple but these midlestones again make me feel like a normal parent. At first she didn't really know what to do with the bottle. She just lay there in my arms with said bottle in her mouth but no sucking. But after maybe 10 minutes she finally decided to give it a shot and consumed a whole 6 cc. And so far so good it is still in her.

Right now she is getting an abdominal ultarsound to see how things are settling in her tummy after all this surgery. So I am taking this quick break to post an update. Hopefully, things are settling in fine and we can continue with the recovery. More holding and feeding I hope. Still we are taking it one day at a time. I will try to post a picture of her next feeding.

Day 4 post surgery

I was released from the hospital yesterday. I must say the pain isn't as bad as I thought it would be but I am still taking Advil to help me out. However, I have the best motivation in the world to try to heal as fast as possible. The nurses were really great in helping me get out of my room and off to see Ceilidh that Saturday before her surgery. It was really important for me to be there before they took her away to fix the Omphalocele. And now that I am released from the General I don't have to keep doing the back and forth. I can spend all my time at CHEO just being with her. Just know that I am doing well in my recovery, my feet may be swollen, which is funny since they never were swollen during pregnancy, but I am mobile. But enough about me lets talk about about Ceilidh.

Everyone learning about Miss C. Omphaloceles aren't that common.

Shortly after birth. She has a bag covering her Omphalocele to keep it moist and protected.

In her isolate ready for transport but not before I get to meet her for the first time.

Our first meeting.

Post eviction

Post surgery with M by her side.

Here is the update since Saturday. Sunday was a rough day for Ceilidh they tried to remove her ventilation tube but that didn't go so well so back in it went. This is partly due to some of the pain meds she was on which can make breathing difficult. She really was not a happy camper on Sunday, which of course was very upsetting for us. It is hard to see her grimace through the pain, it just breaks your heart every time. They later decided to change the pain meds to Morphine. She has since been much more stable and content.

Today they finally removed the ventilation tube and this time success! This also meant that we could hold her. Only I got to hold her when she was born. Before the CHEO transportation team came to wisk her away in her little cadillac. They gave me a chance to hold her and we had her baptised by Father John. So holding her again today for us was pretty monumental. She is doing so much better then we could have ever hoped for. But we still won't know yet when we will be able to take her home. For now she is reaching those mildstones she should be ie passing bowel moments and breathing on her own. Tomorrow they will try to feed her my milk through her feeding tube and see how she tolerates this. The next step will be feeding her without the tube. Till then I will continue to pump.  She truly is a tough nut and already we can see she has a strong personality. Each day with her is very special to us.

I have finally included some pictures.Mostly of the day she was born and one post surgery with M. We will continue to keep you all posted till she can come home with us.