Nico is in hospital... again... but this time a planned stay. You'd think that would be better; it's not. He is back to his worst and there is not a damn thing anyone can do about it it seems. So why am I on the laptop writing this post or this on to Brooklyn instead of soothing him? Same reason anyone visits a psychologist. Therapy.
His PEG is in, the procedure (which is not classed as surgery) went well but it seems that Nico's immune system must be weak because all signs point to infection. Screaming pretty much constantly, not sleeping more than 30 minutes, temperature of 38-39.7 for over 24 hours despite panadol... and several other pain relievers. He is flailing around, back on oxygen as a precaution, on IV antibiotics. Nurses see traits of seizures in his behaviour but the neurologist hasn't been in yet. He has been told all that Nico does in the past and is confident they are not seizures but I want him to see for himself and then tell me. If they are, from what I can see he only does this when there is something wrong, like infection... which may explain why 2 x EEGs have come back clear. Or maybe it is just his body's reaction to pain/ infection/ frustration and is not seizures at all
I can't put into words what I am feeling. But I will try.
Drained.
Done.
Heartbroken.
Ready to Run.
Helpless.
Pretty Effing angry at the world.
I just look at his gorgeous face and the last 16 months goes through my head and it is all so wrong. Half his life in hospital. 4 operations if you include this, 6 times under general anaesthetic, 6 further hospital admissions. How can this be right???
For a boy so weak, I haven't met one stronger. I know there are kids and parents in worse situations and am grateful it's not any worse, but he is my hero.
PS If you are wondering what a PEG is, it looks like this but don't look if you don't like medical stuff. Nico's doesn't have all the tape on and actualy looks a lot better but it gives you an idea.
From Little Things... Big Things Grow
Showing posts with label home. Show all posts
Showing posts with label home. Show all posts
Monday, January 31, 2011
The Weakness and the Strength
Nico is in hospital... again... but this time a planned stay. You'd think that would be better; it's not. He is back to his worst and there is not a damn thing anyone can do about it it seems. So why am I on the laptop writing this post or this on to Brooklyn instead of soothing him? Same reason anyone visits a psychologist. Therapy.
His PEG is in, the procedure (which is not classed as surgery) went well but it seems that Nico's immune system must be weak because all signs point to infection. Screaming pretty much constantly, not sleeping more than 30 minutes, temperature of 38-39.7 for over 24 hours despite panadol... and several other pain relievers. He is flailing around, back on oxygen as a precaution, on IV antibiotics. Nurses see traits of seizures in his behaviour but the neurologist hasn't been in yet. He has been told all that Nico does in the past and is confident they are not seizures but I want him to see for himself and then tell me. If they are, from what I can see he only does this when there is something wrong, like infection... which may explain why 2 x EEGs have come back clear. Or maybe it is just his body's reaction to pain/ infection/ frustration and is not seizures at all
I can't put into words what I am feeling. But I will try.
Drained.
Done.
Heartbroken.
Ready to Run.
Helpless.
Pretty Effing angry at the world.
I just look at his gorgeous face and the last 16 months goes through my head and it is all so wrong. Half his life in hospital. 4 operations if you include this, 6 times under general anaesthetic, 6 further hospital admissions. How can this be right???
For a boy so weak, I haven't met one stronger. I know there are kids and parents in worse situations and am grateful it's not any worse, but he is my hero.
PS If you are wondering what a PEG is, it looks like this but don't look if you don't like medical stuff. Nico's doesn't have all the tape on and actualy looks a lot better but it gives you an idea.
His PEG is in, the procedure (which is not classed as surgery) went well but it seems that Nico's immune system must be weak because all signs point to infection. Screaming pretty much constantly, not sleeping more than 30 minutes, temperature of 38-39.7 for over 24 hours despite panadol... and several other pain relievers. He is flailing around, back on oxygen as a precaution, on IV antibiotics. Nurses see traits of seizures in his behaviour but the neurologist hasn't been in yet. He has been told all that Nico does in the past and is confident they are not seizures but I want him to see for himself and then tell me. If they are, from what I can see he only does this when there is something wrong, like infection... which may explain why 2 x EEGs have come back clear. Or maybe it is just his body's reaction to pain/ infection/ frustration and is not seizures at all
I can't put into words what I am feeling. But I will try.
Drained.
Done.
Heartbroken.
Ready to Run.
Helpless.
Pretty Effing angry at the world.
I just look at his gorgeous face and the last 16 months goes through my head and it is all so wrong. Half his life in hospital. 4 operations if you include this, 6 times under general anaesthetic, 6 further hospital admissions. How can this be right???
For a boy so weak, I haven't met one stronger. I know there are kids and parents in worse situations and am grateful it's not any worse, but he is my hero.
PS If you are wondering what a PEG is, it looks like this but don't look if you don't like medical stuff. Nico's doesn't have all the tape on and actualy looks a lot better but it gives you an idea.
Sunday, May 30, 2010
We got him!!
Tuesday 18 May: At 7 months and 5 days old, we got our baby boy!! There are no words to explain what that felt like. Like there are no words to explain the feeling when you first see your newborn. Completely amazing, new and scary but so natural. After several hours of waiting around while forms got signed, meds got ordered and the doctors did their final exam of our little man, we bundled him into the capsule, thanked everyone and ran out the door. There really was a huge, audible sigh of relief as we walked out the double glass NICU doors and realising that we would never have to go back in there (unles we want to visit)
The seven months flashed through my head and it suddenly hit me that we had been through something pretty intense. I know I have thought this before but not sure if I have written it but it doesn't actually feel as bad or as stressful as it should have. I am sure there were days where I was about to have a complete mental breakdown but that has faded from my memory. I can't visualise him being the size of my hand anymore. I know his arm was thinner than my finger but I just can't picture it. Thank god for photos, thank god for this blog and thank god for Nico.
Brooklyn was at daycare so we made a quick stop to get her. We'd been telling her for a few days that he was coming home but the look on her face when she saw him in the car was priceless. She was so excited and wanted the sun shade off him just so she could look at him the whole way home. It was the sweetest thing to see her little brain processing this and the smile that just never stopped. She calls him "Little Man" and didn't leave his side the whole afternoon. We still get a runnig commentary of what Nico was up to too : "Leeko's awake!" "Leeko's crying" "Leeko's ungy" (we still aren't sure if that means angry or hungry)
His night times are fabulous. He falls asleep about 7 or 8 pm, has a feed at 10.30 and then I wake him whenever I wake up in the night, usually around 2 or 3am for a feed. I wouldn't bother but we have a few feeding issues so I need him to get in as many feeds as possible. If he feeds well, this gets him through til 7.30am, if not, there may be another feed at 6am.
Daytimes are HECTIC!
I am sure we will settle into a better pattern but at the moment, his feeds take up to an hour, every 3 hours and he is often unsettled. This doesn't leave me much time for good quality time with Brooklyn and as fabulous of a toddler as she is, her behaviour is already showing me that she is feeling it. At least they are both asleep by 8 and I get some wind down time now though. This is a new thing to me as the last 7 months have been filled with hospital visits, expressing or work, and before that, I worked 4 evenings.
If anyone has any suggestions (I have probably tried them all but worth asking) about feeding, here is our problem:
About 60% of the time, whether it's bottle or breast feed...Nico will feed for a few minutes (sometimes we won't even get that far) and then stop and clamp his mouth shut/ arch his back/ turn his head/ scream. One or all of the above. He does have reflux, he has medication for that. He is best at the night feeds when I wake him, he will still often only have one side (not enough, my supply is crap after 7 months expressing) but at least he is calm and getting a positive association happening.
Sunday, May 16, 2010
The Home Stretch
Nico was scheduled for a hernia repair on Wednesday 12/5/10. His 7 month birthday. He was to be transported by ambulance back to Monash but no-one knew exactly when or to which ward. The lovely team at Casey were on the phone most of Monday trying to get him a bed in the Paeds ward instead of Special care Nursery but to no avail. In fact, when I arrived there on Tuesday ready to ride the ambulance with him, I was told there were no beds anywhere and not to hold my breath for the move and even perhaps start processing the idea of him not having his operation the next day. No beds in Special Care, no beds in Paeds... we'd try again in the morning. When I visited later that night, they had word that he was moving at 10 am and going to the Paeds ward. This was great news, I'd still be able to take Brooklyn and he'd be in the same quiet atmosphere as he had been the last 3 weeks. 
When I arrived in the morning, we were told the neonatologist had vetoed his move to the Paeds ward after looking at the room, It was a 4 bed ward room so he said "No Way" Although I did agree that nursery would be better than a 4 bed room in the kids ward, I was a bit diappointed he wasn't going to a single room. He had made such progess in regard to sleeping at night, I was dreading the bright, noisy nursery. He has really started smiling purposefully the last month or so and I think it is from all the great interaction he's been getting with us visiting so much more and the nurses doting on him. The nurses in Paeds would take him to the desk and to their tea room if I wasn't around and really give him lots of stimulation. SCN staff just aren't able to. On the other hand, there were a few people I was excited to see again and I did think it woud be nice to be back in familiar surroundings.
I was wrong. I felt immediately like we were walking back in time and like it was a big step backwards. Even though I knew it wasn't. It felt like Nico had become the "sick premmie" instead of "the baby waiting for his op". The time at Casey really made me comfortable with Nico being a regular baby who just needed some oxygen. It made me concious of not treating him like anything but a regular baby. back in NICU walls, the old feelings and fears got dragged back, just a little. He went off to theatre, I go to stay with him right until he was ready to go in, then went and had a bite to eat with a new friend whose little girl had been travelling a parallel journey to Nico and also looking at going home next week. The nurses asked what the plan was but in all honesty, I had no idea, so I just told them MY plan which was he was coming home next week. At handover to the next shift, this plan was passed on to the next nurses. I figured maybe if enough people were told MY plan, it would be done. We will see.
As soon as I woke up on the Thursday, I also remembered how difficult it was to visit with Brooklyn and I was dreading the long drive.Thankfully a friend offered to take Brooklyn and I made the trek to the hospital. I just kept repeating "One more week, it's only few more times" and then I realised I ought to check that the doctors signing discharge papers were somewhat in line with my plan. My insides danced when it turned ou they were on exactly the same page and intended to have him home by Wednesday. Oxygen would need to be delivered and I needed to be taught baby CPR. When I got home that afternoon there was a message on the answering machine from the oxygen company, they were coming the next day. When I got back to the hospital that night there was a note on Nico's crib telling me my training was at 1pm. Everything was set at our end. Just add baby!
This weekend has been the slowest I have ever felt time pass. I know it sounds ridiculous because we couldn't be any more ready to have our man home but at the same time, I have no concept of it. It doesn't feel real. Have you ever had a realistic dream, wake up with that feeling of excited anticipation which lingers and have to keep reminding yourself throughout the day that it was a dream? That's what I feel. Brooklyn is so excited to have her little brother home, she wakes up in the morning and says "Leeko home?" She has tantrums when we drive past the old hospital and don't go in "Leeko!!!!!!!! See Leeko in 'ere!!!!!!!!!" She didn't know that he had moved until today.
Today I watched Nico's little friend Michelle getting ready to go home and it did make me feel like we really were here. He was really coming home. 15 weeks after he was originally meant to, 31 weeks longer than I wish on any parent to have to wait for their baby.
When I arrived in the morning, we were told the neonatologist had vetoed his move to the Paeds ward after looking at the room, It was a 4 bed ward room so he said "No Way" Although I did agree that nursery would be better than a 4 bed room in the kids ward, I was a bit diappointed he wasn't going to a single room. He had made such progess in regard to sleeping at night, I was dreading the bright, noisy nursery. He has really started smiling purposefully the last month or so and I think it is from all the great interaction he's been getting with us visiting so much more and the nurses doting on him. The nurses in Paeds would take him to the desk and to their tea room if I wasn't around and really give him lots of stimulation. SCN staff just aren't able to. On the other hand, there were a few people I was excited to see again and I did think it woud be nice to be back in familiar surroundings.
I was wrong. I felt immediately like we were walking back in time and like it was a big step backwards. Even though I knew it wasn't. It felt like Nico had become the "sick premmie" instead of "the baby waiting for his op". The time at Casey really made me comfortable with Nico being a regular baby who just needed some oxygen. It made me concious of not treating him like anything but a regular baby. back in NICU walls, the old feelings and fears got dragged back, just a little. He went off to theatre, I go to stay with him right until he was ready to go in, then went and had a bite to eat with a new friend whose little girl had been travelling a parallel journey to Nico and also looking at going home next week. The nurses asked what the plan was but in all honesty, I had no idea, so I just told them MY plan which was he was coming home next week. At handover to the next shift, this plan was passed on to the next nurses. I figured maybe if enough people were told MY plan, it would be done. We will see.
As soon as I woke up on the Thursday, I also remembered how difficult it was to visit with Brooklyn and I was dreading the long drive.Thankfully a friend offered to take Brooklyn and I made the trek to the hospital. I just kept repeating "One more week, it's only few more times" and then I realised I ought to check that the doctors signing discharge papers were somewhat in line with my plan. My insides danced when it turned ou they were on exactly the same page and intended to have him home by Wednesday. Oxygen would need to be delivered and I needed to be taught baby CPR. When I got home that afternoon there was a message on the answering machine from the oxygen company, they were coming the next day. When I got back to the hospital that night there was a note on Nico's crib telling me my training was at 1pm. Everything was set at our end. Just add baby!
This weekend has been the slowest I have ever felt time pass. I know it sounds ridiculous because we couldn't be any more ready to have our man home but at the same time, I have no concept of it. It doesn't feel real. Have you ever had a realistic dream, wake up with that feeling of excited anticipation which lingers and have to keep reminding yourself throughout the day that it was a dream? That's what I feel. Brooklyn is so excited to have her little brother home, she wakes up in the morning and says "Leeko home?" She has tantrums when we drive past the old hospital and don't go in "Leeko!!!!!!!! See Leeko in 'ere!!!!!!!!!" She didn't know that he had moved until today.
Today I watched Nico's little friend Michelle getting ready to go home and it did make me feel like we really were here. He was really coming home. 15 weeks after he was originally meant to, 31 weeks longer than I wish on any parent to have to wait for their baby.
The Home Stretch
Nico was scheduled for a hernia repair on Wednesday 12/5/10. His 7 month birthday. He was to be transported by ambulance back to Monash but no-one knew exactly when or to which ward. The lovely team at Casey were on the phone most of Monday trying to get him a bed in the Paeds ward instead of Special care Nursery but to no avail. In fact, when I arrived there on Tuesday ready to ride the ambulance with him, I was told there were no beds anywhere and not to hold my breath for the move and even perhaps start processing the idea of him not having his operation the next day. No beds in Special Care, no beds in Paeds... we'd try again in the morning. When I visited later that night, they had word that he was moving at 10 am and going to the Paeds ward. This was great news, I'd still be able to take Brooklyn and he'd be in the same quiet atmosphere as he had been the last 3 weeks.
When I arrived in the morning, we were told the neonatologist had vetoed his move to the Paeds ward after looking at the room, It was a 4 bed ward room so he said "No Way" Although I did agree that nursery would be better than a 4 bed room in the kids ward, I was a bit diappointed he wasn't going to a single room. He had made such progess in regard to sleeping at night, I was dreading the bright, noisy nursery. He has really started smiling purposefully the last month or so and I think it is from all the great interaction he's been getting with us visiting so much more and the nurses doting on him. The nurses in Paeds would take him to the desk and to their tea room if I wasn't around and really give him lots of stimulation. SCN staff just aren't able to. On the other hand, there were a few people I was excited to see again and I did think it woud be nice to be back in familiar surroundings.
I was wrong. I felt immediately like we were walking back in time and like it was a big step backwards. Even though I knew it wasn't. It felt like Nico had become the "sick premmie" instead of "the baby waiting for his op". The time at Casey really made me comfortable with Nico being a regular baby who just needed some oxygen. It made me concious of not treating him like anything but a regular baby. back in NICU walls, the old feelings and fears got dragged back, just a little. He went off to theatre, I go to stay with him right until he was ready to go in, then went and had a bite to eat with a new friend whose little girl had been travelling a parallel journey to Nico and also looking at going home next week. The nurses asked what the plan was but in all honesty, I had no idea, so I just told them MY plan which was he was coming home next week. At handover to the next shift, this plan was passed on to the next nurses. I figured maybe if enough people were told MY plan, it would be done. We will see.
As soon as I woke up on the Thursday, I also remembered how difficult it was to visit with Brooklyn and I was dreading the long drive.Thankfully a friend offered to take Brooklyn and I made the trek to the hospital. I just kept repeating "One more week, it's only few more times" and then I realised I ought to check that the doctors signing discharge papers were somewhat in line with my plan. My insides danced when it turned ou they were on exactly the same page and intended to have him home by Wednesday. Oxygen would need to be delivered and I needed to be taught baby CPR. When I got home that afternoon there was a message on the answering machine from the oxygen company, they were coming the next day. When I got back to the hospital that night there was a note on Nico's crib telling me my training was at 1pm. Everything was set at our end. Just add baby!
This weekend has been the slowest I have ever felt time pass. I know it sounds ridiculous because we couldn't be any more ready to have our man home but at the same time, I have no concept of it. It doesn't feel real. Have you ever had a realistic dream, wake up with that feeling of excited anticipation which lingers and have to keep reminding yourself throughout the day that it was a dream? That's what I feel. Brooklyn is so excited to have her little brother home, she wakes up in the morning and says "Leeko home?" She has tantrums when we drive past the old hospital and don't go in "Leeko!!!!!!!! See Leeko in 'ere!!!!!!!!!" She didn't know that he had moved until today.
Today I watched Nico's little friend Michelle getting ready to go home and it did make me feel like we really were here. He was really coming home. 15 weeks after he was originally meant to, 31 weeks longer than I wish on any parent to have to wait for their baby.
When I arrived in the morning, we were told the neonatologist had vetoed his move to the Paeds ward after looking at the room, It was a 4 bed ward room so he said "No Way" Although I did agree that nursery would be better than a 4 bed room in the kids ward, I was a bit diappointed he wasn't going to a single room. He had made such progess in regard to sleeping at night, I was dreading the bright, noisy nursery. He has really started smiling purposefully the last month or so and I think it is from all the great interaction he's been getting with us visiting so much more and the nurses doting on him. The nurses in Paeds would take him to the desk and to their tea room if I wasn't around and really give him lots of stimulation. SCN staff just aren't able to. On the other hand, there were a few people I was excited to see again and I did think it woud be nice to be back in familiar surroundings.
I was wrong. I felt immediately like we were walking back in time and like it was a big step backwards. Even though I knew it wasn't. It felt like Nico had become the "sick premmie" instead of "the baby waiting for his op". The time at Casey really made me comfortable with Nico being a regular baby who just needed some oxygen. It made me concious of not treating him like anything but a regular baby. back in NICU walls, the old feelings and fears got dragged back, just a little. He went off to theatre, I go to stay with him right until he was ready to go in, then went and had a bite to eat with a new friend whose little girl had been travelling a parallel journey to Nico and also looking at going home next week. The nurses asked what the plan was but in all honesty, I had no idea, so I just told them MY plan which was he was coming home next week. At handover to the next shift, this plan was passed on to the next nurses. I figured maybe if enough people were told MY plan, it would be done. We will see.
As soon as I woke up on the Thursday, I also remembered how difficult it was to visit with Brooklyn and I was dreading the long drive.Thankfully a friend offered to take Brooklyn and I made the trek to the hospital. I just kept repeating "One more week, it's only few more times" and then I realised I ought to check that the doctors signing discharge papers were somewhat in line with my plan. My insides danced when it turned ou they were on exactly the same page and intended to have him home by Wednesday. Oxygen would need to be delivered and I needed to be taught baby CPR. When I got home that afternoon there was a message on the answering machine from the oxygen company, they were coming the next day. When I got back to the hospital that night there was a note on Nico's crib telling me my training was at 1pm. Everything was set at our end. Just add baby!
This weekend has been the slowest I have ever felt time pass. I know it sounds ridiculous because we couldn't be any more ready to have our man home but at the same time, I have no concept of it. It doesn't feel real. Have you ever had a realistic dream, wake up with that feeling of excited anticipation which lingers and have to keep reminding yourself throughout the day that it was a dream? That's what I feel. Brooklyn is so excited to have her little brother home, she wakes up in the morning and says "Leeko home?" She has tantrums when we drive past the old hospital and don't go in "Leeko!!!!!!!! See Leeko in 'ere!!!!!!!!!" She didn't know that he had moved until today.
Today I watched Nico's little friend Michelle getting ready to go home and it did make me feel like we really were here. He was really coming home. 15 weeks after he was originally meant to, 31 weeks longer than I wish on any parent to have to wait for their baby.
Monday, April 12, 2010
6 months...
| Nico is 6 months old. SIX MONTHS! When Brooklyn was 6 months, she had 4 or 6 teeth, she had a passport, she had been to NZ and the Gold Coast and was about to go to Europe. She'd been out for coffees and dinners, to beaches and parks. She'd stroked cats, rabbits and dogs and tasted pumpkin, apple and no doubt grass and dirt. She'd stayed in a hotel, at friends with us, at her grandparents. Nico has been to Bay 8, Bay 5, Bay 4, Bay 3 and now: BAY ONE : all within the 150 square metres that make up NICU. He has been in an isolette and 3 open cots. He has ingested milk, pentivite, ferrous, sodium, calcium, hydro, spiro, erythromycin, at least 4 different antibiotics. He's had one operation and is being booked in for a second to repair his hernia this week. He has been on 4 different forms of respiratory support and had IV lines in his arms, hands, legs, feet and scalp. He's been looked after by 30 people at a minimum. I can't really say whether it has felt like 6 months. It feels like forever. I don't remember a time before this crazy life of scheduling in babysitters for my daughter and driving hundered of kilometres a week to see my son. Crazy has become the norm. In saying that, when I write "it's been 6 months" and "Nico is 6 months old" it sounds ridiculous that it could possibly have been so long. Reminders are right in front of my nose though. Outside the NICU window is the 6 storey car park; a crevasse when we first arrived and we were assured we would not see finished. We put clocks forward in spring and we've put them back in autumn : visits after 7pm are done in the dark again. His weight flashes on the scales :4.6kg ... there never used to a number in front of that decimal point. A rubbish sized bag of clothes overflows on the nursing chair in his room, full of clothes he no longer fits. Brooklyn could barely copy us saying his name and had about 10 words in her vocab when he was born, now she says "Sit here. See Kiko photos" and "Kiko cuddles,happy now" I'm now the one recieving those "WIsh we were well enough to be in that Bay with you" glances as parents from further down the bays walk past, instead of giving them So in terms of happenings this week, the biggest is that he moved up to the top bay, Bay One and is certainly on the home stretch. Could still be 6 to 8 weeks away as his oxygen increased after a few days, he is likely getting a bit tired. It's great to be in Special Care instead of NICU but the level of care feels ... less caring. I guess they are more used to the sort term patients. I got REALLY annoyed TWICE tat Nico was given formula in a bottle against my wishes AND on top of this: there was EBM expired in the fridge. If they really had to give him bottles, even though he was only meant to have 4 per day, they could have at least used the EBM. I have supply issues as it is and the idea of tipping half a days worth was enough to send me into a fuming rage followed by tears. Thankfully we saved it by putting it in the freezer since it was only a few hours over their 2 day limit. Nothing else of any major significance. Just growing and feeding and the odd smile thrown in for good measure |
6 months...
| Nico is 6 months old. SIX MONTHS! When Brooklyn was 6 months, she had 4 or 6 teeth, she had a passport, she had been to NZ and the Gold Coast and was about to go to Europe. She'd been out for coffees and dinners, to beaches and parks. She'd stroked cats, rabbits and dogs and tasted pumpkin, apple and no doubt grass and dirt. She'd stayed in a hotel, at friends with us, at her grandparents. Nico has been to Bay 8, Bay 5, Bay 4, Bay 3 and now: BAY ONE : all within the 150 square metres that make up NICU. He has been in an isolette and 3 open cots. He has ingested milk, pentivite, ferrous, sodium, calcium, hydro, spiro, erythromycin, at least 4 different antibiotics. He's had one operation and is being booked in for a second to repair his hernia this week. He has been on 4 different forms of respiratory support and had IV lines in his arms, hands, legs, feet and scalp. He's been looked after by 30 people at a minimum. I can't really say whether it has felt like 6 months. It feels like forever. I don't remember a time before this crazy life of scheduling in babysitters for my daughter and driving hundered of kilometres a week to see my son. Crazy has become the norm. In saying that, when I write "it's been 6 months" and "Nico is 6 months old" it sounds ridiculous that it could possibly have been so long. Reminders are right in front of my nose though. Outside the NICU window is the 6 storey car park; a crevasse when we first arrived and we were assured we would not see finished. We put clocks forward in spring and we've put them back in autumn : visits after 7pm are done in the dark again. His weight flashes on the scales :4.6kg ... there never used to a number in front of that decimal point. A rubbish sized bag of clothes overflows on the nursing chair in his room, full of clothes he no longer fits. Brooklyn could barely copy us saying his name and had about 10 words in her vocab when he was born, now she says "Sit here. See Kiko photos" and "Kiko cuddles,happy now" I'm now the one recieving those "WIsh we were well enough to be in that Bay with you" glances as parents from further down the bays walk past, instead of giving them So in terms of happenings this week, the biggest is that he moved up to the top bay, Bay One and is certainly on the home stretch. Could still be 6 to 8 weeks away as his oxygen increased after a few days, he is likely getting a bit tired. It's great to be in Special Care instead of NICU but the level of care feels ... less caring. I guess they are more used to the sort term patients. I got REALLY annoyed TWICE tat Nico was given formula in a bottle against my wishes AND on top of this: there was EBM expired in the fridge. If they really had to give him bottles, even though he was only meant to have 4 per day, they could have at least used the EBM. I have supply issues as it is and the idea of tipping half a days worth was enough to send me into a fuming rage followed by tears. Thankfully we saved it by putting it in the freezer since it was only a few hours over their 2 day limit. Nothing else of any major significance. Just growing and feeding and the odd smile thrown in for good measure |
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