As yet unnamed!

Yesterday and today

Well, Noemie has been sleeping loads since we got home. Probably because she never managed consistent sleep for long at the hospital as the nurses seem to like waking babies up. Blood pressure checks, various meds, taking her temperature (under her arm) and on and on. They even did this throughout the night. I realise they needed to keep an eye on her but really, every 4 hours?!? Worst was when they did it right before shift change and then the next nurse had to do their own observations. It was endless. Surely they realised she was recovering from major surgery and needed her rest?

After she proved she could drink from her bottle a few times, they finally agreed to remove her nasal feeding tube. Had they not agreed, chances are I would've pulled it out. Or at least asked them to try sticking a tube down their throats and see how it then felt to drink something. Her stitches also came out (the ones where they closed up 2 vent holes in her chest, the main one has dissolving stitches) along with the IV needle in her hand. It was really nice to see her without all that crap on her, especially the tape they put on her face to hold her feeding tube in place. She still has a few sticky bits from various things stuck on her but we figure that will come off in time. A nurse tried using some plaster remover and she howled so they soon stopped.

I stayed with her last night and she was pretty good. The nurse turned on the sats/heartrate monitor in the middle of the night and left it on, so each time Noemie moved in her sleep the thing would beep as it would stop reading properly and tell us that Noemie had no pulse and no sats. It was endless and it turned me off from wanting one of those machines at home as it would drive me nuts. I think Kirk paid the nurses to do that last night as I had mentioned wanting a machine at home so I could not worry at night. He thought I was insane.

Today the Drs came to do their rounds at around 11am and asked how much milk Noemie was having in a 24 hour period (745mls - they work with a 150ml/1kg of body weight so she should be having around 645mls so she is clearly making up for lost time), how she was having it (well, no tube so how did they think she was having it?) and then asked us if we wanted to go home today. Of course we said yes, so they agreed she was ready but that they needed to do a final echo to make sure things hadn't changed since the last one a few days ago. We waited about 4-1/2 hours for the echo as they had an emergency in PICU to deal with first. We just sat around the room and Noemie napped a bit and smiled a lot and ate often.

Finally it was time to come home. Echo showed nothing bad (we were looking to see if her pulmonary veins were clogging, a risk of her condition albeit a minor one). I had loads of expressed milk in the freezer (2.5 liters of it) so we got a large bag for the little containers and off we went. Good job I had made space in our freezer when I was home the other day. I've already got one drawer FULL so just for fun I added it all up today and Noemie is going to be fine for a while... 7 liters!!! Not too shabby for someone who had planned on formula feeding huh? We are going to start mixing some formula into her feeds beginning this week though just so that I have the option to stop expressing. At this point I plan to keep going for a while, at least until she is recovered from the surgery which they say is around 3-4 weeks. She'll be 12 weeks old on Wednesday anyway so we're nearly halfway to the recommended 6 month mark. I could probably manage until then.

It's so nice to have her home. I am a bit nervous she will stop breathing or something but then I would be scared of that even if she had not had any problems. As always Kirk is totally chilled out. We are going to get her a cot to go in our room so she can sleep there for a few more months. She did sleep in her moses basket today but it's a tad too small for her already (she is one looooooong baby) and she also likes to sleep like a starfish with her arms and legs spread out. Her cotbed is too big to fit through her doorway and we don't want to take it apart so it's easiest to buy a new cot. I just want to buy new stuff for her!

We are truly lucky that Noemie came through all of this so well. Kirk has another week before he goes back to work so we are going to enjoy our time together as a family and hope to get settled into a nice little routine!

What a little superbaby!

We're home! 9 days in the hospital and they asked us this morning "would you like to go home today?" Duh, of course we would.

More details later... oh, and she's sleeping in her moses basket at the moment. If anyone ever wants to train their baby to sleep alone on their back, just go stay in a hospital for a week and it'll sort things out.

Evening Update

Here is Noemie with her newest friend. It's called an Ugly Doll. We bought 3 different ones last week while she was in surgery and I took one down to her bed the other day. Yesterday we came back from lunch to find the nurse had tucked the Ugly Doll into bed next to Pretty Baby so today we recreated the scene as I took the camera in with me. They were both staring at the musical mobile overhead (we took that in for her as well as she loves it at home). It entertains her so much so it's on non stop. I think Kirk and I have managed to totally tune out the music at this point.

Noemie spent the afternoon smiling non stop at all of us. She seems to be just about back to her old self again with being a happy baby. She got lots of cuddles from us but we were sure to put her down on the bed as soon as she started getting drowsy so she can continue sleeping and settling on her own. No way are we going back to how it was pre-op with one of us having to hold her continuously. Well, it would be me as Kirk goes back to work soon. She only seems to nap for 30 min at a time though so we will need to work on that so I can do stuff during her nap time once we are back home.

Her tummy bug is clearing up quite a bit but she has the worst diaper rash. I know part of it is the tummy problems but also, we are always really good about making sure she is dry before putting on her new nappy but the nurses aren't as careful. I now wish we had said something but I didn't think it would get this bad. The poor thing howls when we change her. Hope it clears us soon, we've been putting all kinds of barrier creams and stuff on her which hopefully helps a bit. Her breathing has been great all afternoon, her saturation is almost always at 100% but no lower than 95%. We put a baby gro on her today so she is no longer a nekkid baby. Her wounds are healing up nicely and all dressings are now off. No wires on her other than a heartrate and sats monitor on her toe and then the feeding tube down her nose. She did well with feeding out of a bottle today. She gets fed every 3 hours and only needed the tube once out of four feeds. She does need a bit of encouragement but gets there in the end. She is already eating the same amount she did pre-op and her weight is back to where she was on surgery day so she is impressing everyone. As she is in her own room due to being in isolation for a few more days and there is 1 nurse for 4 patients, one of us has to stay with her at all times. I was there most of the day, Kirk is there tonight and I will be there tomorrow and tomorrow night. There might be a chance of us coming home Monday if she continues to do as well as she is now but we've learned to take one day at a time so we'll see what happens.

Hard to think that this time last week she was only about 10 hours out of surgery. The progress is amazing though it does feel like it's been much longer than a week. We also got a bit used to being able to just leave her and go to lunch or dinner as we had built in baby sitters while in the PICU. It was like that in the first 11 days of her life so the last 3 months has been an unusual intro into parenthood. I'm going to have to start my nanny hunt pretty soon as I already know I won't manage on my own for the long term once Kirk is back at work. I definitely need a break although she is the cutest baby in the world (sorry, no offense to the other parents reading this) ::grin::.

Thurs 28th Morning Update

Disclaimer: This is subject to change in all sorts of directions every 10 minutes.

Kirk called this morning and Noemie didn't need the CPAP overnight and her breathing is pretty much normal so they are moving her to the wards. Her tummy bug is just about gone as well but she needs to be in isolation for 72 hours so yay, we get our own room. Sad she had to have a tummy bug but it's worked out to meaning not needing to be in a room with multiple other kids. As the baby room on the wards is still in isolation we would be in the mixed ward which has some teenagers as well as an infant and lemme tell you... these kids are noisy. I know they must be so bored as they are well enough to wander around but have to stay in the hospital for ongoing treatment. Still... I'm not used to much more than a baby crying and even that is an adjustment. The morning nurse is in love with Noemie as she was apparently treated to a smile first thing this morning. Kirk's been telling Noemie to really smile at the Drs as they are the ones that make things happen.

My cough sounds so bad again today as the place we went to dinner was pretty smokey. I can't wait until the smoking ban is passed in 2-1/2 days time. It's appalling that people still smoke in this day and age. I know it's an addiction but seriously, can people be *that* weak? With all the damage smoking can do, not to mention how expensive cigarettes are in this country it's no different to rolling up a £5 note and lighting it on fire each day and more if you smoke more than a pack or so. Kinda like paying for the privilege of damaging your lungs! If people want to smoke I realise it is their choice but frankly as a non smoker I don't want to be doing the passive smoking thing and pay the price for someone else's stupidity. I've got plenty of my own stupidity to contend with. Will be nice to take Noemie out with us when she has recovered and not worry about her inhaling smoke as well.

Time to go to the hospital again.

Update Wed June 27th

My turn to come home tonight though I have to admit I slept well last night in the "dorm room". My cold seems to be going away quickly so that is good too.

Noemie is doing really well. She was a bit lethargic yesterday but we think we know the reason... she has a tummy bug. (sooo glad we're not changing nappies). The tummy bug from the other ward has arrived in the PICU so now the 3 PICU rooms are in isolation. The good news is the bug apparently passes in 24 hours and sure enough Noemie seems to be doing better and was back to her giggles again this afternoon.

We are a bit frustrated (ok, I am, Kirk's still chilled out) about how they just seem to change their mind a lot about what to do with Noemie. I hate that we don't have 1 or 2 people who consistently care for her but I guess this is how the NHS works. This morning they said she would remain in the PICU for a few days as she is generally fine but may need CPAP at nighttime and has to be in the PICU for this. Kirk and I went out to lunch and we got back 2 hours later and the update was they were going to move her into a room in the wards (single room as she is in isolation). We questioned this and said no as we weren't sure why they would change their mind in 2 hours with no basis for their decision. NOTHING had changed in the 2 hours, they just suddenly made this decision. So the decision taken was to let her try the night without the CPAP to see how she does. She is fine during the day, maintains good oxygen saturation and breaths just about normally (still does a weird gasping thing sometimes) but an xray they took early this morning showed a partially collapsed right upper lung which had resolved itself when they took another xray later this afternoon so they think that might've been the cause. She was breathing a lot more normally this evening before we left for dinner so fingers crossed it just keeps getting better.

After dinner I came home and Kirk went back to see her before heading up to the luxurious suite they have given us (I know I shouldn't complain considering it's free). He spoke to the night staff and they have agreed to phone him before doing anything in terms of moving Noemie or leaving her in the PICU so he can accept their decision or not. We just want to make sure she is not moved out of the PICU until she is really ready.

We have had to really watch these people closely and question things often. It is supposed to be routine for them to weight heart babies each morning to make sure they are at least not losing weight. Noemie has been weighed each day (other parents are sometimes around when this happens so have told us it is being done) but no one has bothered to actually record her weight anywhere. So, we complained about this so hopefully tomorrow we see results. It's kinda important to know if she is gaining or at least not losing weight since food is going down a tube rather than her eating until she is full. We also had to ask over and over (like the past 5 days) about what her liver function levels are when they do blood tests considering they nearly cancelled her op as the levels were elevated this time last week. Finally we got an answer today that everything is normal. We had a fantastic nurse called Karl today who was very efficient and got us answers, etc. Noemie adored him as well and smiled at him loads.

All in all, she is doing incredibly well considering this time last week she was still pre-op. Her scar is definitely visible but it's healing nicely and will fade as time goes on. Still hard to see it on my cute little girl but we're thankful she is with us so the scar is a small price to pay. She is also quite popular with the staff there for being an easy happy baby (clearly Kirk and I are doing something wrong as she is a tad more difficult at home!). If I had a dollar for each time we were told how beautiful she is I would be able to donate enough money to get the hospital some much needed equipment! We even had one person come around today and tell us that during morning handover one of the night drs opened Noemie's file and apparently the first thing he said was "she is one gorgeous baby" before he proceeded to debrief the day staff on her progress. Her eyes and smile seem to mesmerize people.

Tomorrow I will take the camera with me again and take an updated photo of her. We're planning to take her feeding tube out of her nose once her tummy bug is gone so we can "starve" her for a few hours until she is so hungry that she takes her bottle again. I personally think that the reason she is refusing her bottle is because she has this tube down her throat which may not be hurting her but must be a weird feeling each time she swallows. It could also be irritating her throat if it has any trauma from when she was intubated. She just can't feed via a tube in the long term considering she has always taken her bottle even when she was really breathless. We're worried if we leave it in there too long that she will get too used to it and get lazy. Luckily the Drs agreed with us so perhaps tomorrow we will try removing the tube and see what happens. 

And another change of plans

This is like a roller coaster ride! They decided not to move her to the general wards and as there is no space in HDU they are keeping her in the ICU. The consultant felt her breathing was a tiny bit laboured so they want to put her back on oxygen to help her get her rest, etc. They tried the CPAP but Noemie let them know what she thought of that so they compromised with the nasal canula. Apparenty she is alert and smiley and the Drs aren't concerned. Her blood gasses came back with a tiny bit of CO2 in them so they are just being cautious. Hope it's nothing bad... Kirk said the Drs said it's nothing to worry about, perfectly normal, etc., so his last words to me were "don't freak out".

Yeah. Ok. Am off to the hospital now to see her and then may go up to the room and sleep.

Tues June 26 - Morning Update

Good news! Noemie has been promoted and is going to the general wards today. The HDU is still full but they feel she is fine to go into a normal ward as she did well over night and pretty much had been left alone all day yesterday anyway. Kirk said the night nurse said Noemie was really well behaved and even smiled at her a few times. Kirk got more smiles this morning when he went to see her and she was apparently holding her right arm up over her head as she always used to do. We often call her superman as she looks like she is trying to fly. She's still refusing her bottle but the mik is going down the feeding tube and so she is getting the food she needs. Fingers crossed she takes the bottle soon. I know it's more important for her to eat, rest and get strong but the tube just feels weird. Maybe it's because she never needed one before. She probably has a sore throat from having tubes down her neck.

I'm doing a few things around the house then will head in. Feel ok but sound bad. I totally lost my voice last night. It's just like having a really dry throat so maybe I need to just increase my fluid intake or something.

Can you believe it's day 5 post op?

June 25th Evening update

I came home again tonight as I started getting really tired as the day wore on so we decided I should get another good night's sleep. I'm also doing laundry and stuff around the house a bit as it looks like a bomb site here. Not the biggest deal I know but it isn't relaxing to be in such a mess. I doubt even a cleaning lady could clean with how messy this place is. Here is a photo of Noemie from this evening. She didn't make it to the HDU today but it was because they had no beds available there and the regular room where the babies go was in isolation today as one of the babies had a fever so we're glad they didn't move us in there! She remained in the ICU but didn't have a nurse of her own so she was being treated like she was in the HDU though I would think she would've had more attention there. She has been very alert so it's a good thing we have her mobile hanging over her cot to entertain her. We both had her out for a few cuddles and we also each got a smile :) I got the first smile while Kirk was out and luckily had a witness so he had no choice but to believe me. This evening before I left she was giggling and talking to Kirk so it was really nice to see the old Noemie resurfacing. She is still refusing her bottle though and we thought it might be because they were feeding her every 2 hours so we asked to move to every 3 hours but that didn't do the trick so they are still using the NG tube. It was only today though and they all said not to worry, that she will go back to her bottle but that she may just be tired at the moment so the tube is easier. I suppose it does the job and it's most important that she eats now, not how she eats. The nurse from last night said she was feeding just fine out of the bottle so it may also be that she is just not starving like she was the past 2 days. All in all, pretty incredible to think she had open heart surgery just 4-1/2 days ago. At the nighttime rounds the Drs said she is moving to the wards tomorrow... fingers crossed there is a bed available and that no one is ill, causing a room to be in isolation. All being well, it seems she will be home sooner than later.

We're thrilled of course but also with it comes the anxiety and worry of having a baby so soon out of a major op at home... with no nurses... no monitors to tell us how she is doing, etc. Kirk pointed out that she was at bigger risk of a problem before the op and we were relatively relaxed then but I think the op brought back all the anxiety I remember having when we first took her home at 2 weeks old. It's weird how "used" to the monitors and hospital routine you become and the thought of going home is daunting, at least for me. Kirk as always is so chilled out. Glad he will be with us until he goes back to work on July 9th so a bit of time for us to adjust at home all together. They said about 3-4 weeks of being careful about how we pick her up, etc., and thereafter it's all "normal". Whatever that is.

June 25th update

I'm getting ready to head out to the hospital again shortly but wanted to update again as I spoke to Kirk this morning. Noemie did well through the night. Apparently they put the CPAP back on for a few hours but Kirk doesn't know why and I'm not sure why he didn't ask but I will when I get there. She was apparently quite grumpy this morning as they were all poking and prodding at her so when they tried to give her some milk she refused to open her mouth. Typically Noemie but she needs to eat so they stuck it down her nose tube. I was hoping they would never have to do that as she never needed that before but I guess it's not that bad as it means she is eating despite "arguing" with them. Hope she will take the bottle later today.

It's looking pretty good for her to be promoted out of PICU this afternoon and into the wards but most likely a stop in the HDU before the "going home" wards. With any luck we can have her home this weekend.

Not sure if I'll be home again for a few days but will continue to text Bren with updates and she will post here for us. Thanks Bren!

Some Photos

The one of Noemie and I was taken a few moments before we left to take her to the hospital on Wednesday. I was so worried I wouldn't get chances in the future for more photos with her so I had Kirk take a few shots. So glad I will get to have more photos with her in the future! I love this one as she is sticking her tongue out which is something I often do in photos. The other photo was taken about 15 minutes before we took her down to the operating area. She hadn't eaten since 4am and was really hungry but was being such a good sport about it all. They made her wear this tiny hospital gown (it's a small version of what us adults would wear) but she of course had her nappy on so it wasn't like an adult wearing it and flashing their butt to the world. The cord coming from her foot was just what they would plug into the monitor from time to time to check her stats (we had this in the NICU as well).

I came home to sleep tonight as I have barely slept since Tuesday night and it's catching up to me and I feel like I am coming down with a cold which would suck big time. The childrens ward has heart patients but also kids with respiratory probs so the last thing they need is someone with a cold hanging around. I'm hoping a good night's rest does the trick. Worst case I will stay home a bit longer tomorrow and hope to go back in the evening. By the time I went back to the hospital this afternoon, Noemie's face was hardly swollen at all so she looks more like herself again. She is very alert and it looked like she nearly smiled but not quite. Maybe tomorrow. They have removed the CPAP and said to leave it off unless she struggles. She did fine without it all day though so they don't expect her to need it again. Things are looking good and they mentioned promoting us to the HDU tomorrow-ish. Hard to believe it's only day 3 post op and she is doing so well. I saw her chest scar today and it's drying and healing nicely. She also had 2 holes where they had drain tubes coming out and one is doing well, the other seemed a bit less happy but they cleaned it again today so hopefully it gets better. They gave her another shot of antibiotics as well just as a precaution. All other tubes and stuff are now removed so she has a heart monitor and then an oxygen canula in her nose to help her dry out the fluid in her chest. It's incredible how much progress she made today. So proud of our little cutie pie :)

Sleepy time for me now. :)