Quality time with my special girl

Now that life is a bit of a logistical nightmare, I am understanding the meaning of "Quality Time". It's not that I didn't believe in it or understand it... I just thought it was for the dad's who didn't get home from work til their child's bed time.

Now I am the Invsible Mum. My time with Brooklyn has been cut down to maybe 1/4 of what it was. Not by 1/4. To 1/4. I wrote out a mini schedule with 2 times slots per day: AM and PM and 3 activities "Work" "Nico" and "Brooklyn" for the nurses so they knew when to expect me. Work got 3 slots, Brooklyn got 3.5 (in just 3 days), Nico got 5.5 and Saturday was left blank. Seeing this on paper, although completely skewed as of course I spend time with her each day, made me incredible sad. I wanted to cry. My little girl, my amazing little girl, was going through one of the funniest ages in her lifetime, and I was missing chunks of it.

Through this little exercise, I found Thursday's has become Brooklyn's day. It is the only day I have to devote the whole day to her. Even then I miss the start of it. I go to the hospital at 6am, feed Nico at 8 and get home by 9.30am. On Wednesday night I had our day all planned to makes sure that the time we did get was all about her.. not me or the house (although we did do a few groceries but the trip was to get her some fairy wings)

We started off the day outside where she had been helping her dad move some stones. We filled buckets, ran along the side of the house and searched for snails... something either her Nana or cousin taught her...

With fairies being her latest obsession, I was ordered inside to watch The Fairies which I had recorded for her the day before. We did the Boogie Woogie Sand Dance (sha-a-ake your bo-ot-tom), helped Harmony and Rhapsody write a letter and scoffed at the flying boat.

Just in time for lunch we cooked some muffins. She shook in the ingredients, mixed it up and most importantly, licked the spoon and bowl!!! She stood on a backwards chair in front of the oven and watched in amazement as they grew and grew... it was almost, but not quite as exciting as getting to eat them. She was even allowed to have "juice" with her lunch, just like her mum. (A splash of juice in a cup of water)

After a nap we went to the shops and bought some fairy wings and playdough equipment. This resulted in a little fairy sitting at Brooklyn's table playing with playdough for the afternoon. Only after another trip to the beach in the flying boat with Harmony and Rhapsody though. With her wings and wand, obviously. It wan't until we put this on that she pointed out that she didn't have the "eyes" like the other fairies. Oh well. Thursday will come again next week!

Quality time with my special girl

Now that life is a bit of a logistical nightmare, I am understanding the meaning of "Quality Time". It's not that I didn't believe in it or understand it... I just thought it was for the dad's who didn't get home from work til their child's bed time.

Now I am the Invsible Mum. My time with Brooklyn has been cut down to maybe 1/4 of what it was. Not by 1/4. To 1/4. I wrote out a mini schedule with 2 times slots per day: AM and PM and 3 activities "Work" "Nico" and "Brooklyn" for the nurses so they knew when to expect me. Work got 3 slots, Brooklyn got 3.5 (in just 3 days), Nico got 5.5 and Saturday was left blank. Seeing this on paper, although completely skewed as of course I spend time with her each day, made me incredible sad. I wanted to cry. My little girl, my amazing little girl, was going through one of the funniest ages in her lifetime, and I was missing chunks of it.

Through this little exercise, I found Thursday's has become Brooklyn's day. It is the only day I have to devote the whole day to her. Even then I miss the start of it. I go to the hospital at 6am, feed Nico at 8 and get home by 9.30am. On Wednesday night I had our day all planned to makes sure that the time we did get was all about her.. not me or the house (although we did do a few groceries but the trip was to get her some fairy wings)

We started off the day outside where she had been helping her dad move some stones. We filled buckets, ran along the side of the house and searched for snails... something either her Nana or cousin taught her...

With fairies being her latest obsession, I was ordered inside to watch The Fairies which I had recorded for her the day before. We did the Boogie Woogie Sand Dance (sha-a-ake your bo-ot-tom), helped Harmony and Rhapsody write a letter and scoffed at the flying boat.

Just in time for lunch we cooked some muffins. She shook in the ingredients, mixed it up and most importantly, licked the spoon and bowl!!! She stood on a backwards chair in front of the oven and watched in amazement as they grew and grew... it was almost, but not quite as exciting as getting to eat them. She was even allowed to have "juice" with her lunch, just like her mum. (A splash of juice in a cup of water)

After a nap we went to the shops and bought some fairy wings and playdough equipment. This resulted in a little fairy sitting at Brooklyn's table playing with playdough for the afternoon. Only after another trip to the beach in the flying boat with Harmony and Rhapsody though. With her wings and wand, obviously. It wan't until we put this on that she pointed out that she didn't have the "eyes" like the other fairies. Oh well. Thursday will come again next week!

Going with the flow

So this time last week, high flow had been written into the plan but had not started.... now it's in full swing. Monday morning was to be Nico's first attempt at this and I arrived at the hospital on the biggest high. Brimming over with excitement, I burst into the bay and told the nurse Me"Hooray, high flow today for 2 hours!!". Nurse "Um, no. It says you can when feeding if needed" Me "Yesterday at the round the doctors were talking about it and said 2 hours a day" Nurse "No, it has high flow for feeding if needed, it has said that for days" Me "I know that, but we haven't been doing it because it wasn't needed, he can feed on CPAP but the doctors want him on 2 hours a day now if tolerating" Nurse "No, that's not what is written here" I was nearly going to grab a pen and write it on the damn plan myself, I was furious. Thankfully the rounds entered Nico's bay just as we were about to feed and I knew they would back me up. It was not Nico's assigned doctor but I like him and he does know Nico from a while back. My heart sank a wee bit when he said "I don't see the need to change anything on a public holiday" (ummm holiday? This is medicine not a corporate office... there is no holiday!!) but thankfully he continued with "But i strongly recommend trying him on high flow while you feed and hold him today so we can see how he goes" Hurrah! So out comes the high flow machine, off come the giant CPAP prongs and hat/ headband and on goes the tiny (in comparison) cannula of high flow. He looked so good!! Even though he still had all the velcro tape on his cheeks to keep it all in place, you could see so much more of him. He had a good feed and a nice long cuddle and did so well.. I was overjoyed. It was another sign that he really would come home. The next day they increased his high flow time to 2 hours twice a day and upped him to 2-4 suck feeds . He has his feeds 3 hourly so that means up to half of his feeds don't need to be tubed now!. It seemed to make feeding so much easier, but maybe he was just getting the hang of it. I was a little concerned about the bottle feeding, as I think I mentioned in previous blogs, but I had to be pragmatic and there was no way I could be there for 4 feeds a day and I did not want to hinder his progress by limiting to 1 or 2 per day. We had established feeding pretty well so he would be getting 1 or 2 bottles a day. The day after his first bottle, he all but refused to feed. I was a bit anxious that he had already goten his preference to the bottle but this was quickly appeased the next day when we had a 45 minute text book feed I actually became really happy with this development when I got to watch Geoff give him a bottle. I felt like they don't really get much 'special' time together. I know every moment is special but I mean Geoff doing something with Nico other than nappy changes and baths. This was just for them together. I have my feeding, he has his bottles. Perfect. Another day or two went by and again they increased his high flow to 2 x 4 hours and the next day: 2 x 6 hours a day!!! Half his day! He has had a few of his little episodes but nothing too major. The worst being this morning and I had a little panic at hearing his oxygen requirement went from 26-28% up to 40% but when I go there an hour later, it was back down to 28%. I have a feeling that it was due to having a nurse who didn't know him and she just increased it every time he had a little desaturation. My time management skills are being tested (and failing) but we are managing... it really is geting harder and harder to leave though. He is just so alert when he's awake And yesterday... maybe, just maybe... he smiled.

Going with the flow

So this time last week, high flow had been written into the plan but had not started.... now it's in full swing. Monday morning was to be Nico's first attempt at this and I arrived at the hospital on the biggest high. Brimming over with excitement, I burst into the bay and told the nurse Me"Hooray, high flow today for 2 hours!!". Nurse "Um, no. It says you can when feeding if needed" Me "Yesterday at the round the doctors were talking about it and said 2 hours a day" Nurse "No, it has high flow for feeding if needed, it has said that for days" Me "I know that, but we haven't been doing it because it wasn't needed, he can feed on CPAP but the doctors want him on 2 hours a day now if tolerating" Nurse "No, that's not what is written here" I was nearly going to grab a pen and write it on the damn plan myself, I was furious. Thankfully the rounds entered Nico's bay just as we were about to feed and I knew they would back me up. It was not Nico's assigned doctor but I like him and he does know Nico from a while back. My heart sank a wee bit when he said "I don't see the need to change anything on a public holiday" (ummm holiday? This is medicine not a corporate office... there is no holiday!!) but thankfully he continued with "But i strongly recommend trying him on high flow while you feed and hold him today so we can see how he goes" Hurrah! So out comes the high flow machine, off come the giant CPAP prongs and hat/ headband and on goes the tiny (in comparison) cannula of high flow. He looked so good!! Even though he still had all the velcro tape on his cheeks to keep it all in place, you could see so much more of him. He had a good feed and a nice long cuddle and did so well.. I was overjoyed. It was another sign that he really would come home. The next day they increased his high flow time to 2 hours twice a day and upped him to 2-4 suck feeds . He has his feeds 3 hourly so that means up to half of his feeds don't need to be tubed now!. It seemed to make feeding so much easier, but maybe he was just getting the hang of it. I was a little concerned about the bottle feeding, as I think I mentioned in previous blogs, but I had to be pragmatic and there was no way I could be there for 4 feeds a day and I did not want to hinder his progress by limiting to 1 or 2 per day. We had established feeding pretty well so he would be getting 1 or 2 bottles a day. The day after his first bottle, he all but refused to feed. I was a bit anxious that he had already goten his preference to the bottle but this was quickly appeased the next day when we had a 45 minute text book feed I actually became really happy with this development when I got to watch Geoff give him a bottle. I felt like they don't really get much 'special' time together. I know every moment is special but I mean Geoff doing something with Nico other than nappy changes and baths. This was just for them together. I have my feeding, he has his bottles. Perfect. Another day or two went by and again they increased his high flow to 2 x 4 hours and the next day: 2 x 6 hours a day!!! Half his day! He has had a few of his little episodes but nothing too major. The worst being this morning and I had a little panic at hearing his oxygen requirement went from 26-28% up to 40% but when I go there an hour later, it was back down to 28%. I have a feeling that it was due to having a nurse who didn't know him and she just increased it every time he had a little desaturation. My time management skills are being tested (and failing) but we are managing... it really is geting harder and harder to leave though. He is just so alert when he's awake And yesterday... maybe, just maybe... he smiled.

Whisper, whisper...

Hurrah... progress and then some more progress... and progess is also scheduled for tomorrow.
Nico must be over the whole giant prongs of CPAP and has decided he wants to get himself kitted out with something much more flattering and comfortable. So all week, obviously with with this in mind, he got his average oxygen requirement down to 25% (Our goal - "Air" - is 21%) I don't want my blogs to get technical, but: this doesn't mean that once he gets to 21% he'll be a regular bub and CPAP comes off. He still can't do the actual breathing thing without support to keeps his lungs inflated a little. But once in air, it means that his lungs are doing a good job at getting the oxygen to his brain/ blood. It is a step in the right direction for the next phase of assistance: High Flow (followed by Low Flow at which point he may be allowed home with his oxygen tank!)

In conversation and off the record, one of the nurses said she thought he would be trialled on to High Flow soon. I know the nurses really don't have any say in this kind of thing and it is just guess work but just that little whisper of the words "High Flow" was enough for me. He has taken so long to make any progress on the oxygen front, I was elated. I thought he would never get there... well, ok...not literally. The next day I was told that if he was having trouble latching on for a feed, the doctors were happy to try high flow. He wasn't having trouble so we were advised NOT to go to high flow but again.. just the words were enough.

The same day they started to grade him up from 22ml per hour to 44ml every two hours. His reflux caused him a lot of discomfort so with any luck, feeding him less often would help out there. So every hour they minused a millilitre from one feed and added it to the next. The process took almost 24 hours: 22ml, 24ml, 21ml, 25ml, 20ml, 26ml, 19ml.........3ml, 41ml, 2ml, 42ml, 1ml, 43ml, 0ml, 44ml.

4 days later and he is now on 3 hourly feeds of 67ml! Thankfully that was a bit less of a process, involving 3 feeds at 2.5 hours apart and that was that. Breastfeeds of course are not measured but we guess and watch his behaviour. If he is grumpy, they top him up but that has only been once.

There is a downside to all of this. My life has just become that much more logistically complex. With 1 hour feeding, I could arrive any time and be guaranteed it was almost feeding time and that if he didn't feed first go, I would be there for the next one. Also, he was only needing 20 ml, so as long as I didn't express just before I left home (30/40 minute drive) it was fine. Now I have to be there at one if not two of his feeding times: 7.30 or 10.30am, 1.30, 4.30, 7.30 or 10.30pm.. and if we don't feed... well.. tough. Also since he needs over 60ml, I can't have expressed for the 2.5 hours before I leave home.. so need to take that into account when planning my day AND stick to the time .. precisely. My friend, Toushka, jokingly wanted to make me a schedule to fit in work, Brooklyn, expressing and visits.... not to mention general house/ family/ life stuff ...like eating. I think I might need her to do it.

So he grew and he grew and today when he was weighed he tipped the scales at a fab 3.54 kg. He's got his Fisher Price Rainforest mobile on his cot now and sits up in a feeding cushion a few times a day. The physio also brought him this weird chair that looks like a car seat stripped of its fabric. He needs to get some control and strength his head/neck/torso like a regular baby would from being picked up/ put down all day and sitting in bouncers and swings etc.
Since I am trying to blog chronologically... I finish with the last piece of news we heard today:
Tomorrow:
High flow for up to 2 hours!!!!!!!!!!!!!!!!!!!!!! Woohooo. The time will then increase according to how he behaved the day before ... fingers crossed!!!

Whisper, whisper...

Hurrah... progress and then some more progress... and progess is also scheduled for tomorrow.
Nico must be over the whole giant prongs of CPAP and has decided he wants to get himself kitted out with something much more flattering and comfortable. So all week, obviously with with this in mind, he got his average oxygen requirement down to 25% (Our goal - "Air" - is 21%) I don't want my blogs to get technical, but: this doesn't mean that once he gets to 21% he'll be a regular bub and CPAP comes off. He still can't do the actual breathing thing without support to keeps his lungs inflated a little. But once in air, it means that his lungs are doing a good job at getting the oxygen to his brain/ blood. It is a step in the right direction for the next phase of assistance: High Flow (followed by Low Flow at which point he may be allowed home with his oxygen tank!)

In conversation and off the record, one of the nurses said she thought he would be trialled on to High Flow soon. I know the nurses really don't have any say in this kind of thing and it is just guess work but just that little whisper of the words "High Flow" was enough for me. He has taken so long to make any progress on the oxygen front, I was elated. I thought he would never get there... well, ok...not literally. The next day I was told that if he was having trouble latching on for a feed, the doctors were happy to try high flow. He wasn't having trouble so we were advised NOT to go to high flow but again.. just the words were enough.

The same day they started to grade him up from 22ml per hour to 44ml every two hours. His reflux caused him a lot of discomfort so with any luck, feeding him less often would help out there. So every hour they minused a millilitre from one feed and added it to the next. The process took almost 24 hours: 22ml, 24ml, 21ml, 25ml, 20ml, 26ml, 19ml.........3ml, 41ml, 2ml, 42ml, 1ml, 43ml, 0ml, 44ml.

4 days later and he is now on 3 hourly feeds of 67ml! Thankfully that was a bit less of a process, involving 3 feeds at 2.5 hours apart and that was that. Breastfeeds of course are not measured but we guess and watch his behaviour. If he is grumpy, they top him up but that has only been once.

There is a downside to all of this. My life has just become that much more logistically complex. With 1 hour feeding, I could arrive any time and be guaranteed it was almost feeding time and that if he didn't feed first go, I would be there for the next one. Also, he was only needing 20 ml, so as long as I didn't express just before I left home (30/40 minute drive) it was fine. Now I have to be there at one if not two of his feeding times: 7.30 or 10.30am, 1.30, 4.30, 7.30 or 10.30pm.. and if we don't feed... well.. tough. Also since he needs over 60ml, I can't have expressed for the 2.5 hours before I leave home.. so need to take that into account when planning my day AND stick to the time .. precisely. My friend, Toushka, jokingly wanted to make me a schedule to fit in work, Brooklyn, expressing and visits.... not to mention general house/ family/ life stuff ...like eating. I think I might need her to do it.

So he grew and he grew and today when he was weighed he tipped the scales at a fab 3.54 kg. He's got his Fisher Price Rainforest mobile on his cot now and sits up in a feeding cushion a few times a day. The physio also brought him this weird chair that looks like a car seat stripped of its fabric. He needs to get some control and strength his head/neck/torso like a regular baby would from being picked up/ put down all day and sitting in bouncers and swings etc.
Since I am trying to blog chronologically... I finish with the last piece of news we heard today:
Tomorrow:
High flow for up to 2 hours!!!!!!!!!!!!!!!!!!!!!! Woohooo. The time will then increase according to how he behaved the day before ... fingers crossed!!!