Monday 23 April 2012
Fox cubs come home!
My beautiful babies are home!! Finally the day we've been waiting for has arrived. 100 days exactly and our babies are at home. Peace in my heart and chaos at home!! This is the end of a long painful journey and we're going to enjoy every minute of looking after our two little fox cubs. Thank you to everyone for all your phonecalls, texts, cards and presents which kept us going for the last 3 months. Lots of love from all four of us.
Thursday 19 April 2012
The finishing line
Over the last few days, the boys have picked up then of course slowed down and now again picked up. They're both feeding from bottles only and have found their lungs in a big way! Xander likes to use his to scream and shout when his dummy falls out of his mouth and Joeby likes to screech when he has a dirty nappy. They defintely like to copy each other and if one starts, the other will copy and will stop as soon as the other one stops. What a fun game to play!
Yesterday they decided to shout at the same time and after 10 minutes of trying to calm them down I was about to pull my hair out when I found a way of cradling them both at once using a scooping technique and then jiggling them from side to side. This is a real skill when trying to get fingers around all the O2 tubing! These new crys are a really good sign that they're behaving like proper babies now - not sure our neighbours will be as proud of them as I am!
So..the big news is that we are taking our boys home on MONDAY!!! As long as the boys keep feeding well and dont become ill then we're bringing our baby boys home! There have been a couple of days where it just didnt look possible but today has been good so fingers and toes crossed they come home where they belong. Matthew and I are rooming in at the hospital on Saturday night so the staff are happy that we can look after the boys and give them their meds etc. Then we have Sunday to recover (?!) and Monday we bring our babies home. The thought of having them at home makes me so happy I cant quite believe it's going to happen.
I've spent a long time being so afraid that these little fox cubs won't make it home and now it's becomming real I get a shiver just thinking about it. I felt so blessed when I found out I was pregnant and doubly blessed when I found out it was twins. These little miracle babies were so excited to see the world they decided to come out 3 months early and we're so lucky they're doing so well . Not all parents in the NNU can say the same and my heart goes out to them.
So, I will of course be filled with excitement on Monday but I'll wait until I'm outside of the unit to high five my boys.
Come on now baby boys...we're almost at the finishing line!
Yesterday they decided to shout at the same time and after 10 minutes of trying to calm them down I was about to pull my hair out when I found a way of cradling them both at once using a scooping technique and then jiggling them from side to side. This is a real skill when trying to get fingers around all the O2 tubing! These new crys are a really good sign that they're behaving like proper babies now - not sure our neighbours will be as proud of them as I am!
So..the big news is that we are taking our boys home on MONDAY!!! As long as the boys keep feeding well and dont become ill then we're bringing our baby boys home! There have been a couple of days where it just didnt look possible but today has been good so fingers and toes crossed they come home where they belong. Matthew and I are rooming in at the hospital on Saturday night so the staff are happy that we can look after the boys and give them their meds etc. Then we have Sunday to recover (?!) and Monday we bring our babies home. The thought of having them at home makes me so happy I cant quite believe it's going to happen.
I've spent a long time being so afraid that these little fox cubs won't make it home and now it's becomming real I get a shiver just thinking about it. I felt so blessed when I found out I was pregnant and doubly blessed when I found out it was twins. These little miracle babies were so excited to see the world they decided to come out 3 months early and we're so lucky they're doing so well . Not all parents in the NNU can say the same and my heart goes out to them.
So, I will of course be filled with excitement on Monday but I'll wait until I'm outside of the unit to high five my boys.
Come on now baby boys...we're almost at the finishing line!
Joey's face with no tubes!
Xander in a big boy chair
Joeby
Joeby's new play toy!
Xander keeping his dummy to hand (it accidentally got wedged inbetween his Oxygen tubes and stuck to his face!)
Sunday 15 April 2012
The great outdoors
We didn't get to see Joey's face as the night nurse changed his tubes. I'll make sure we get to see a lot of his little face as soon as he's home.
So this week, we had the oxygen delivered to our house for when the boys come home. We had 18 cannisters! Some travel and some permanent. We've placed them all over the house and they're waiting eagerly to be used!
The boys had a sleep study which went well but it took the doctors a week to get around to reading and analysing it. The sleep study just means their stats are recorded over night and it shows how well they did on that level of O2. By the time the doctors got around to reading it, a week had passed and both boys especially Xander was doing so well and alarming high that I asked for it to be re done on a lower level. They were reluctant but I pushed for it and finally they agreed. They turned xander down by two points - the second sleep study showed that he did very well even for that lower level. Joey will stay where he is. They're reluctant to move their O2 levels now as they're almost ready to come home and want them to be stable for home time. I understand that but it's frustrating when I can see them doing so well and obviously needing less O2 than they're on. The sooner the boys come off the O2, the sooner we can start having a normal life with them.
I had a couple of teary days as the nurses didnt seem to be pushing the boys at all and it seemed like the boys just wouldnt ever feed from the bottle for all their feeds. They're so sleepy and no poking or covering them in kisses would wake them up!
Today however...Xander had his feeding line removed! It was taken out as he needed it changed anyway and the nurse said we could just see how he does. He did 5 in a row! Joey too! If they get too sleepy then it'll have to go back in but i'm hoping thats it now. Come on baby boys...we're all ready for you at home. Please please wake up for your feeds.
Another lovely thing happened today. We took the babies out for the first time! We were allowed to take them for a walk around the hospital grounds and I LOVED it! We had travel Oxygen cannisters in the pram and their sats monitors came with us too. Only the occassional beep beep beep but apart from that it was just amazing. We were like all the other parents you see every day pushing their babies around. I'd like to say that the boys loved it too but they spent the entire time fast asleep! The receptionists who we've seen every day for 3 months were so excited to see them! We're still not allowed visitors and it was just lovely to show them off to people - even if it was just the hospital receptionist! We'll try and get the grand parents to stand outside the hospital next weekend so they can see them. There will be so many tears!
So this week, we had the oxygen delivered to our house for when the boys come home. We had 18 cannisters! Some travel and some permanent. We've placed them all over the house and they're waiting eagerly to be used!
The boys had a sleep study which went well but it took the doctors a week to get around to reading and analysing it. The sleep study just means their stats are recorded over night and it shows how well they did on that level of O2. By the time the doctors got around to reading it, a week had passed and both boys especially Xander was doing so well and alarming high that I asked for it to be re done on a lower level. They were reluctant but I pushed for it and finally they agreed. They turned xander down by two points - the second sleep study showed that he did very well even for that lower level. Joey will stay where he is. They're reluctant to move their O2 levels now as they're almost ready to come home and want them to be stable for home time. I understand that but it's frustrating when I can see them doing so well and obviously needing less O2 than they're on. The sooner the boys come off the O2, the sooner we can start having a normal life with them.
I had a couple of teary days as the nurses didnt seem to be pushing the boys at all and it seemed like the boys just wouldnt ever feed from the bottle for all their feeds. They're so sleepy and no poking or covering them in kisses would wake them up!
Today however...Xander had his feeding line removed! It was taken out as he needed it changed anyway and the nurse said we could just see how he does. He did 5 in a row! Joey too! If they get too sleepy then it'll have to go back in but i'm hoping thats it now. Come on baby boys...we're all ready for you at home. Please please wake up for your feeds.
Another lovely thing happened today. We took the babies out for the first time! We were allowed to take them for a walk around the hospital grounds and I LOVED it! We had travel Oxygen cannisters in the pram and their sats monitors came with us too. Only the occassional beep beep beep but apart from that it was just amazing. We were like all the other parents you see every day pushing their babies around. I'd like to say that the boys loved it too but they spent the entire time fast asleep! The receptionists who we've seen every day for 3 months were so excited to see them! We're still not allowed visitors and it was just lovely to show them off to people - even if it was just the hospital receptionist! We'll try and get the grand parents to stand outside the hospital next weekend so they can see them. There will be so many tears!
Xander loves his new parrot!
Burp
Joey wanting to get in the photos
Joey crying and Xander trying to hold his hand!
Head scans
Bath time
The boys are getting a bit big for their cot now..note Xanders foot sticking out the bottom!
Holding hands
Ready to go for their walk - first time they've experienced fresh air!
Matthew would look more excited if he weren't so hungover!
So tempted to do a runner...
Oxygen waiting for the boys at home!
Sunday 8 April 2012
Great expectations
The last week has been filled with the usual ups and downs. The boys are still on 3 hourly feeds and were on two bottles to one tube feed. Last week Dr Pie saw the boys and said that he expects them to be on bottle only feeds by early next week (this coming Monday) and as soon as that happens then they're ready to come home. My heart literally skipped a beat and I called Matthew to tell him the good news! We were so excited and spoke quickly about all the things we need for their room so we're ready for the day we've both been waiting for for such a long time. The list was long and the last few days have been a bit of a blur. We wake up about 6.30am then its all systems go - express, shower, clean flat, mothercare trip, hospital, change, feed, burp, clean up vom and repeat all day, come home, research online more things to buy, build boys furniture, return wrong items to mothercare, rush rush rush, bed, sleep and repeat all over again. I find myself literally running around the house trying to get as much done before getting to the hospital for 9.30/10am for the boys feeds.
I dont know why I havent learnt my lesson but I did get my hopes up and again I shouldnt have. The boys took a step back and had to go back to alternate feeds. One bottle, one tube feed. They're just so sleepy and have such bad reflux that they cant manage feeding from the bottle. They're so uncomfortable after feeding and they wriggle and squirm about then they're sick and finally they fall asleep meaning they're too sleepy to suck feed when their next feed is due. They wont be coming home next week now.
Matthew's been off for the Easter weekend which has been just the most incredible relief for me. Having him there to share all the stress and worry makes such a difference. We've tag teamed a bit too so we both have a little break from the hospital - although our time has been spent doing jobs around the house so we're both shattered! It's been a good weekend though and despite the horrible reflux, we've managed to get the boys just about back on to two bottles and one tube feed. There;s been a little bit of force feeding going on but it all counts! We have to get these boys home somehow!
Highlight of the week - The boys not only have reflux which is very common for premmie babies but they also find it very difficult to wind. Joey in particular has been doing well on this front. We sometimes see him stretching and we then hear little pop sounds - he's basically farting like a trooper. It's a great sound as it means he's more comfortable and can rest and be ready for his next feed. Yesterday, Matthew bent down to change Joeys nappy. As he bent down I heard a louder, more pronounced pop sound than I've heard before. I looked at Matthew and asked if that noise was Joey...Matthew shook his head but said , and I quote "but if anyone asks just say it was him!". He's already blaming his farts on his sons! To set the scene, the nursery was completely silent apart from Matthews fart and the nurses and other parents would have definitely heard him. I was holding Xander at the time and was laughing so much but trying to control it so no one noticed , which of course made it worse and little Xander was almost boucning off my chest as I was shaking so much from all the laughing. The worst thing about it was that there was another cot with another set of twins just behing Matthews bottom...so he basically farted in their faces.
Other slightly more profound highlight of the week: Every week the boys have their Oxygen cannulas changed but it's always been done very quickly when they still have tape on their faces and their feeding line in. This week they changed the feeding tube at the same time on Xander and they took the tape off too. We saw his face for the first time in weeks. It was just amazing to see his face and to see what he actually looks like. He looked just perfect. I held his little face in my hands and gave him a million kisses all over. He was so handsome and looked like a healthy little baby. The nurse let Matthew hold him whilst I sobbed of course! It was so lovely to see him looking like other babies we see in the outside world and to catch a glimpse of what he really looks like without all the tubes on him. My precious little one was so gorgeous, I cried for him and told him that he wouldnt need the tubes forever and that he was so handsome just as he is. We will hopefully get to see Joey's face tomorrow and no doubt the tears will flow but they're happy tears... sort of.
So, we need to get these feeds going for them to come home and then the fun and sleep deprivation starts! We have no idea how long it'll take but slowly slowly my little miracle babies will come home.
.
I dont know why I havent learnt my lesson but I did get my hopes up and again I shouldnt have. The boys took a step back and had to go back to alternate feeds. One bottle, one tube feed. They're just so sleepy and have such bad reflux that they cant manage feeding from the bottle. They're so uncomfortable after feeding and they wriggle and squirm about then they're sick and finally they fall asleep meaning they're too sleepy to suck feed when their next feed is due. They wont be coming home next week now.
Matthew's been off for the Easter weekend which has been just the most incredible relief for me. Having him there to share all the stress and worry makes such a difference. We've tag teamed a bit too so we both have a little break from the hospital - although our time has been spent doing jobs around the house so we're both shattered! It's been a good weekend though and despite the horrible reflux, we've managed to get the boys just about back on to two bottles and one tube feed. There;s been a little bit of force feeding going on but it all counts! We have to get these boys home somehow!
Highlight of the week - The boys not only have reflux which is very common for premmie babies but they also find it very difficult to wind. Joey in particular has been doing well on this front. We sometimes see him stretching and we then hear little pop sounds - he's basically farting like a trooper. It's a great sound as it means he's more comfortable and can rest and be ready for his next feed. Yesterday, Matthew bent down to change Joeys nappy. As he bent down I heard a louder, more pronounced pop sound than I've heard before. I looked at Matthew and asked if that noise was Joey...Matthew shook his head but said , and I quote "but if anyone asks just say it was him!". He's already blaming his farts on his sons! To set the scene, the nursery was completely silent apart from Matthews fart and the nurses and other parents would have definitely heard him. I was holding Xander at the time and was laughing so much but trying to control it so no one noticed , which of course made it worse and little Xander was almost boucning off my chest as I was shaking so much from all the laughing. The worst thing about it was that there was another cot with another set of twins just behing Matthews bottom...so he basically farted in their faces.
Other slightly more profound highlight of the week: Every week the boys have their Oxygen cannulas changed but it's always been done very quickly when they still have tape on their faces and their feeding line in. This week they changed the feeding tube at the same time on Xander and they took the tape off too. We saw his face for the first time in weeks. It was just amazing to see his face and to see what he actually looks like. He looked just perfect. I held his little face in my hands and gave him a million kisses all over. He was so handsome and looked like a healthy little baby. The nurse let Matthew hold him whilst I sobbed of course! It was so lovely to see him looking like other babies we see in the outside world and to catch a glimpse of what he really looks like without all the tubes on him. My precious little one was so gorgeous, I cried for him and told him that he wouldnt need the tubes forever and that he was so handsome just as he is. We will hopefully get to see Joey's face tomorrow and no doubt the tears will flow but they're happy tears... sort of.
So, we need to get these feeds going for them to come home and then the fun and sleep deprivation starts! We have no idea how long it'll take but slowly slowly my little miracle babies will come home.
Joeby
Xander fox cub
Xanders beautiful face!
Joey cuddles
.
Monday 2 April 2012
Oxygen training
The boys have evened themselves up a little now and they're both doing as well as eachother. Fingers crossed that means that they'll come home at the same time. It's very difficult to know how they're doing as one day they can be on 0.01 O2 and the next day they're on 0.06 so they dont seem to be consistent in their progress. Again - it's normal for prem babies to be up and down so we just have to be patient.
They're now on two bottle feeds to one tube feed so they're doing really well. Joey is especially doing well - he's gulps his feed down and is getting good at burping and farting his way through! Xander finds it a little more difficult. His reflux seems to be much worse and he looks like he's struggling when feeding. He looks so uncomfortable and wriggles around and cries. I give him lots of kisses and then remember that doesnt help so I try and burp him but he's so little he finds it hard to burp. Nurse Claudia is especially good with him and is so gentle. She has the knack of lifting him and moving him around without disturbing him. I've tried to move him gently a few times but it seems to end in vomit. Today it went straight down my top! Not every nurse encourages holding him after feeding as they think its bad habits and that he should be put down to rest but others think he needs to be upright for his reflux. It's very difficult to convince one nurse that another nurses technique works and they seem to take offence to it so you have to be very diplomatic and smile sweetly and beg that they please try. I'm so fed up of asking if I can pick up my baby and ask to please do what works best for my baby. MY baby! I can't think about what happens in the night when I'm not there as it keeps me awake worrying. Instead I think about them both being peaceful and sleeping all the way through until I arrive in the morning!
Today we were told that they're going to do a sleep study on the boys. This means they'll see how many times they desat in the night and what the max amount of O2 is that they need. They do this in preparation for them coming home on Oxygen. It's looking very likely that they'll be home on Oxygen so they'll come home on the maximum amount and a team of people will review it weekly at our house and bring them down slowly. They could be on it for a few months or a few weeks. It's a shame they'll be home on Oxygen but we're used to the tubes and monitors now so we'll just be over the moon to have them home. A team of people come and set up the canisters in our house and teach us how to use them. Once the boys have their bottles for every feed and once we've completed the resusitation course we then room in for the night (stay at the hospital) with the boys and make sure we're happy and then...home time!!! This could be in two or three weeks!! Really trying not to get excited as I dont think I'll truly believe it until it happens but I'm obviously bubbling with secret excitement inside!
The boys will be coming home on 3 hourly feeds. They take two hours to feed and burp meaning we have an hour to sleep/eat/wash. How do people survive?! I may not be in contact much when the boys come home!! Both our mums are so keen to help which is amazing. I dont know what we'd do without them. My mum throughout all of this has cooked and filled our freezer to make sure we have enough food for when we get home from the hospital late at night and dont have energy to cook. She's been a life safer - Matthew especially is enjoying some nice home cooked food as it's a vast improvement on my cooking!! He asked me the other day how long she would keep it up for as he's got used to having nice food at home now! The cheek. Matts mum has also been just brilliant - she's made the boys little blankets for their prams and is a tower of strength for Matthew when things have been hard.
I'm also panicking slightly as we still havent got their room ready. We seem to have so little time to do anything that we haven't even got their cots yet! A lovely friend who I went to school with who I havent seen for years and years and who seems to love the boys even though she's not met them yet very kindly introduced me to her neighbour by email who also has twins. I hadn't even met her in person and she already offered me her twin moses basket stand. So kind of her. She then introduced me to her local twins club and introduced me on email. One of the mums herself had very prem babies and one of hers also came home on O2 so she knows exactly what we're going through. She's lending me her monitor mats so I dont spend the nights watching them to see if they're still breathing! Prem mums have seen their babies stop breathing to the point where you have to give them a shake to remind them to breathe. I think once you've seen that you worry about them taking their next breath for a long time after they come home. This may seem a little neurotic to some people and maybe it is but after everything I've seen I can't help but worry for them. It's so kind of these mums who I've not even met to be giving me things for the boys - people are so generous. I'm amazed at how many people read the blog and ask after the boys. Friends have come all the way to the hospital for a quick coffee just to say hello as they know I sit in the hospital all day myself as visitors arent allowed. I'm so so lucky. I still have no time to reply to texts and emails as even writing this blog is always done at high speed last thing at night with eyes half closed but I want everyone to know how grateful I am for their thoughts, cards, emails and texts. Friends who I've not seen for years or don't keep in touch with too often have sent such lovely cards and messages - friends from abroad and friends from way way back have been so lovely. I'm so grateful and luckly to be surrounded by such lovely friends and family. Thank you all so much. Keep crossing those fingers for my boys - we're getting close now!! The world will see the biggest smile on my face when I bring these baby boys home. Happy tears only from now on.
They're now on two bottle feeds to one tube feed so they're doing really well. Joey is especially doing well - he's gulps his feed down and is getting good at burping and farting his way through! Xander finds it a little more difficult. His reflux seems to be much worse and he looks like he's struggling when feeding. He looks so uncomfortable and wriggles around and cries. I give him lots of kisses and then remember that doesnt help so I try and burp him but he's so little he finds it hard to burp. Nurse Claudia is especially good with him and is so gentle. She has the knack of lifting him and moving him around without disturbing him. I've tried to move him gently a few times but it seems to end in vomit. Today it went straight down my top! Not every nurse encourages holding him after feeding as they think its bad habits and that he should be put down to rest but others think he needs to be upright for his reflux. It's very difficult to convince one nurse that another nurses technique works and they seem to take offence to it so you have to be very diplomatic and smile sweetly and beg that they please try. I'm so fed up of asking if I can pick up my baby and ask to please do what works best for my baby. MY baby! I can't think about what happens in the night when I'm not there as it keeps me awake worrying. Instead I think about them both being peaceful and sleeping all the way through until I arrive in the morning!
Today we were told that they're going to do a sleep study on the boys. This means they'll see how many times they desat in the night and what the max amount of O2 is that they need. They do this in preparation for them coming home on Oxygen. It's looking very likely that they'll be home on Oxygen so they'll come home on the maximum amount and a team of people will review it weekly at our house and bring them down slowly. They could be on it for a few months or a few weeks. It's a shame they'll be home on Oxygen but we're used to the tubes and monitors now so we'll just be over the moon to have them home. A team of people come and set up the canisters in our house and teach us how to use them. Once the boys have their bottles for every feed and once we've completed the resusitation course we then room in for the night (stay at the hospital) with the boys and make sure we're happy and then...home time!!! This could be in two or three weeks!! Really trying not to get excited as I dont think I'll truly believe it until it happens but I'm obviously bubbling with secret excitement inside!
The boys will be coming home on 3 hourly feeds. They take two hours to feed and burp meaning we have an hour to sleep/eat/wash. How do people survive?! I may not be in contact much when the boys come home!! Both our mums are so keen to help which is amazing. I dont know what we'd do without them. My mum throughout all of this has cooked and filled our freezer to make sure we have enough food for when we get home from the hospital late at night and dont have energy to cook. She's been a life safer - Matthew especially is enjoying some nice home cooked food as it's a vast improvement on my cooking!! He asked me the other day how long she would keep it up for as he's got used to having nice food at home now! The cheek. Matts mum has also been just brilliant - she's made the boys little blankets for their prams and is a tower of strength for Matthew when things have been hard.
I'm also panicking slightly as we still havent got their room ready. We seem to have so little time to do anything that we haven't even got their cots yet! A lovely friend who I went to school with who I havent seen for years and years and who seems to love the boys even though she's not met them yet very kindly introduced me to her neighbour by email who also has twins. I hadn't even met her in person and she already offered me her twin moses basket stand. So kind of her. She then introduced me to her local twins club and introduced me on email. One of the mums herself had very prem babies and one of hers also came home on O2 so she knows exactly what we're going through. She's lending me her monitor mats so I dont spend the nights watching them to see if they're still breathing! Prem mums have seen their babies stop breathing to the point where you have to give them a shake to remind them to breathe. I think once you've seen that you worry about them taking their next breath for a long time after they come home. This may seem a little neurotic to some people and maybe it is but after everything I've seen I can't help but worry for them. It's so kind of these mums who I've not even met to be giving me things for the boys - people are so generous. I'm amazed at how many people read the blog and ask after the boys. Friends have come all the way to the hospital for a quick coffee just to say hello as they know I sit in the hospital all day myself as visitors arent allowed. I'm so so lucky. I still have no time to reply to texts and emails as even writing this blog is always done at high speed last thing at night with eyes half closed but I want everyone to know how grateful I am for their thoughts, cards, emails and texts. Friends who I've not seen for years or don't keep in touch with too often have sent such lovely cards and messages - friends from abroad and friends from way way back have been so lovely. I'm so grateful and luckly to be surrounded by such lovely friends and family. Thank you all so much. Keep crossing those fingers for my boys - we're getting close now!! The world will see the biggest smile on my face when I bring these baby boys home. Happy tears only from now on.
Joey
Xander
Joey
Xander
Joey
Xander
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