Birth to home
Well as you know my little man was born at 25 weeks weighing 845g. He was doing really well for the first week and a half, went from a ventilator (tube down the throat), to CPAP (prongs in the nose) which is fantastic for a baby who was virtually born with no lungs. Unfortunatly he got tired and caught a bug. This then lead to several more bugs and then pneumonia, then his lungs started to collapse so he had to be put back on the ventilator with his oxygen continually being turned up. Every day one of his lungs collapsed, then one would re inflate and then collapes the next day and so on. At one stage his oxygen was on 100% which means it can't be turned up anymore and most likely could lead to brain damage, brain bleeds, hearing being effected and eye sight as well. We were called in twice to say goodbye to him. You would leave him at night and he was good only to ring in the morning and he had had a bad night and gone down hill. I remember after one call we got up straight away to get ready only for my husband to pick me up off the floor in the laundry as my legs gave way I was crying that much.
One day one of the Drs told us the only step that was really left was to give him steriods but there were possible side effects with the main one being cystic fibrosis, but we didn't care we just wanted him alive we would deal with anything that was wrong with him. We signed the form to give the steriods and they were given straight away and over a course of what we thought 9 days. He almost turned a corner straight away and we thought this was it this was all he needed, but then devestating news....his oxygen started to be turned up again and he caught another infection, I'll be honest I thought that was it, I thought there was nothing else they could do i just cried and cried.
They decided to bite the bullet and pull the breathing tube as it had been down his throat for 6 weeks and they knew it would be full of gunk so they said it might help with a new one and as much as they don't like retubing a baby as it causes dramatic stress to them they thought they would pull it out, but then made the choice before they did that that they would try him on a less powerful breathing maching and see how he goes and bugger me he started improving, it was almost like he said about bloody time you put me on this other machine. Before we knew it a few days later they pulled the tube out which I must say scared the crap out of me. We were told not to expect him to last as he will probably get tired but we will give it ago and see how long he can last..... it was like he stuck his finger up and said I will show you and he never went back to be tubed and just had the prongs up the nose. It was almost like he was just saying about time that's all I needed.
He started to grow nicely, graduating from an incubator to what they called the big boys bed or open cot. I remember walking in one morning, all the nurses looking at me and there he was in his open cot......I was so excited I had to run out and ring Nathan to tell him. It was the best to be able to lift him in and out of his cot, to touch him, to hold his hand all the time, for him to look at us without the plastic inbetween us. Then the biggest surprise was when he moved up bays. Bays were the rooms they were in. Bay 7 &8 were NICU, 6 was still NICU but not so dependant then bays 5, 4 were where they still had babies who needed assistance with breathing, or still needing special care, then Bay 3 was called SCN or special care nursery and bay 2 & 1 were OMG we're nearly home! I walked in as I did every day and he wasn't there, it's the worst feeling ever, the nurses said didn't anyone ring me and that he had been moved to bay 6 and were so exciting for us that after 13 weeks of being in intensive care he was finally on the move.
We spent several weeks in bay 6 and whilst I was driving into the hospital I got a call saying our beautiful boy had been moved all the way to bay 3, skipping 5 & 4 straight to special care. For anyone that knows this system or has experienced it you will totally understand the whole thing. He was now on low flow oxygen which was just normal air flowing through his nasal prongs and had to have times off air altogether to get his lung strength up. This went on for a few weeks only for him to catch influenza off someone and we are tipping a staff member even though we were questioned and almost acused of it. After being in hosp that long we weren't dumb enough to put his health at risk, so that put his coming off oxygen behind whilst he got better. Another few weeks went past, again as usual I walked in and nope he wan't there OMG he had moved to bay 2 and his next step was to a level 2 hospital and closer to home.
After 17 weeks and 2 days before Christmas we got come fantastic news....he was being moved to a level 2 hospital which was now 45 mins from home and not the traveling of one hour and 10 mins one way. It was such an emotional time to say goodbye to what had been our family for 17 weeks, we made some really good friends and that includes other NICU parents and nurses. The nurse were our strength and without them I know sitting there day by day I would of lost it alot more than I did. They so don't get recognised for the work they do and I have to say they are my hero's. I travelled in the infant transport ambulance to our new home.
For the next month or so my day was the same, in to see my boy, spend the whole day with him just holding him and never wanting to let him go. Before he was allowed home he had to do what was called 'air tests' and that mean't he he had to last off oxygen with his own oxygen levels staying at a certain %. He failed the first one, thena week later he did another one but it wasn't good enough, the following week he passed but his Repiratory Specialist wanted him to do one more to be safe. Now we always did the tests when he was asleep because that way he wouldn't fidget around. The fourth test started off well but he woke up and I started stressing the the max and got all upset, but you know what..... it was the best he ever did, he kicked arse. That was the tuesday and then on the friday his Resp Dr came into see us and we got the news we had been so longing for.......he was going home!!
One day one of the Drs told us the only step that was really left was to give him steriods but there were possible side effects with the main one being cystic fibrosis, but we didn't care we just wanted him alive we would deal with anything that was wrong with him. We signed the form to give the steriods and they were given straight away and over a course of what we thought 9 days. He almost turned a corner straight away and we thought this was it this was all he needed, but then devestating news....his oxygen started to be turned up again and he caught another infection, I'll be honest I thought that was it, I thought there was nothing else they could do i just cried and cried.
They decided to bite the bullet and pull the breathing tube as it had been down his throat for 6 weeks and they knew it would be full of gunk so they said it might help with a new one and as much as they don't like retubing a baby as it causes dramatic stress to them they thought they would pull it out, but then made the choice before they did that that they would try him on a less powerful breathing maching and see how he goes and bugger me he started improving, it was almost like he said about bloody time you put me on this other machine. Before we knew it a few days later they pulled the tube out which I must say scared the crap out of me. We were told not to expect him to last as he will probably get tired but we will give it ago and see how long he can last..... it was like he stuck his finger up and said I will show you and he never went back to be tubed and just had the prongs up the nose. It was almost like he was just saying about time that's all I needed.
He started to grow nicely, graduating from an incubator to what they called the big boys bed or open cot. I remember walking in one morning, all the nurses looking at me and there he was in his open cot......I was so excited I had to run out and ring Nathan to tell him. It was the best to be able to lift him in and out of his cot, to touch him, to hold his hand all the time, for him to look at us without the plastic inbetween us. Then the biggest surprise was when he moved up bays. Bays were the rooms they were in. Bay 7 &8 were NICU, 6 was still NICU but not so dependant then bays 5, 4 were where they still had babies who needed assistance with breathing, or still needing special care, then Bay 3 was called SCN or special care nursery and bay 2 & 1 were OMG we're nearly home! I walked in as I did every day and he wasn't there, it's the worst feeling ever, the nurses said didn't anyone ring me and that he had been moved to bay 6 and were so exciting for us that after 13 weeks of being in intensive care he was finally on the move.
We spent several weeks in bay 6 and whilst I was driving into the hospital I got a call saying our beautiful boy had been moved all the way to bay 3, skipping 5 & 4 straight to special care. For anyone that knows this system or has experienced it you will totally understand the whole thing. He was now on low flow oxygen which was just normal air flowing through his nasal prongs and had to have times off air altogether to get his lung strength up. This went on for a few weeks only for him to catch influenza off someone and we are tipping a staff member even though we were questioned and almost acused of it. After being in hosp that long we weren't dumb enough to put his health at risk, so that put his coming off oxygen behind whilst he got better. Another few weeks went past, again as usual I walked in and nope he wan't there OMG he had moved to bay 2 and his next step was to a level 2 hospital and closer to home.
After 17 weeks and 2 days before Christmas we got come fantastic news....he was being moved to a level 2 hospital which was now 45 mins from home and not the traveling of one hour and 10 mins one way. It was such an emotional time to say goodbye to what had been our family for 17 weeks, we made some really good friends and that includes other NICU parents and nurses. The nurse were our strength and without them I know sitting there day by day I would of lost it alot more than I did. They so don't get recognised for the work they do and I have to say they are my hero's. I travelled in the infant transport ambulance to our new home.
For the next month or so my day was the same, in to see my boy, spend the whole day with him just holding him and never wanting to let him go. Before he was allowed home he had to do what was called 'air tests' and that mean't he he had to last off oxygen with his own oxygen levels staying at a certain %. He failed the first one, thena week later he did another one but it wasn't good enough, the following week he passed but his Repiratory Specialist wanted him to do one more to be safe. Now we always did the tests when he was asleep because that way he wouldn't fidget around. The fourth test started off well but he woke up and I started stressing the the max and got all upset, but you know what..... it was the best he ever did, he kicked arse. That was the tuesday and then on the friday his Resp Dr came into see us and we got the news we had been so longing for.......he was going home!!
Labels: Archives
posted by LiL Moo & Mee at
February 01, 2010
5 Comments:
This is overwhelming to read, I can only try to imagine what it was like to live through. I'm glad you connected with the other parents there and the staff, no better support than of those who know what you're going through.
Just reading all of it makes me cry.
What a big life little Maxx has already had!
Hugs
xxx
So glad that Maxx has done so well! Take care and I look forward to reading all the wonderful things that you have coming your way. He is adorable! :)
It's so good to see 3 of my favorites back!! Thankyou xoxo
no words, just hanging waiting for the rest of the story. so so glad he's home and you're all doing well.
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