O MY GOD......what a week we have all been through in this household. And no.....its got nothing to do with screaming babies keeping us awake all hours of the night....I wish it was that simple. It was far worse than that.
it has taken me a few days to decide whether or not to post what happened on my blog as its has been such a scary situation and I'm not sure I'm totally over it all yet, or whether we will ever be over it. To think about what could have been is just too unbelievable for words. But so many people have emailed me asking what happened and how things are going that I just thought i would.
All I can do is to thank whatever higher power was looking over us and looking over my little boy. I swear it was his granddad and his great nana, who would have loved him so much if they were here to meet him. Hopefully his guardian angels will be with us for a long time to come.
Ok so here goes......Will try and give you a brief run down on it all!
We came home from hospital following jacks birth on Friday 29th and everything was fine. He was sleeping a lot and not feeding very often but the nurses in the hospital said he would get himself into a routine. So we thought OK. When they released him and did his obs before we left he had lost over 10% of his birth weight. This should have rung some bells but evidently it didn’t! They probably just wanted our bed!.
His eating sleeping routine never changed much over the weekend. If anything he was sleeping more and eating less. We were getting a bit concerned bout it all and when the mid-wife came out on Monday to do a follow up visit we mentioned it to her. This was 11.30am and the last time he had fed was about 4am in the morning! He hadn’t woken since! She tried to wake him and he just wouldn’t. She mentioned that he felt cold even though he was wrapped up. She took his temp and it was 35.4. Very cold! She told us too wrap him up and try and get him warmer and she would be back in 2 hours to see if he had woken up yet. Well she came back at 2.30. he was still asleep. Still hadn’t eaten and when she took his temp he was 35.1, so even colder. She told us to get him up to the hospital straight away. We rushed him up there, luckily its only a 5 minute drive! They put him straight in the humidicrib and started warming him up. Scott went and picked Kloe up from school and I stayed with Jack. When he was back up to 36 degrees he was stirring and opening his eyes so they tried to get him to feed but he wouldn’t. He was like a rag doll. So they got me to express some and tried to feed him by bottle but still no go. They just kept warming him up hoping he would want to feed once he got back to normal temperature. Scott took Kloe home to give her some tea. As Jack was getting warmer his body started twitching and doing weird things. They called the doctor in and he was basically baffled by what he was doing. They rang the pediatricians in Port Augusta about 7pm to ask their opinion. They suggested trying to feed him again and if that didn’t work to put in a nasal gastric tube to feed him that way. Well he just got worse and worse and by 8pm he had a full on seizure. I had never been so scared in all my life! Even the mid-wife and doctor were shocked. So they were back on the phone to Port Augusta and an ambulance transport was arranged to take him up there. Everything from then on was so surreal. People running everywhere, me on the phone to scott trying to arrange things for Kloe and for him to get back up to the hospital. We left Pirie by ambulance at about 8.50pm. Scott followed in our car. We got to Port Augusta about an hour later. They spent the next hour sticking tubes in him and wires and all other things it was horrible. He looked so terrible laying almost lifeless in the humidicrib with all his ribs showing and his belly all sunken in. I was a mess to say the least.. The only time he made a noise was when they put the tube up his nose. And then he sounded like a starving kitten. They started pumping some kind of food into him straight away.
. They weighed him and he was 5lb 8oz, so he had lost 1lb 4oz since he was born.. Over 13% of his body weight. He no longer had the strength to keep surviving on his own. His little body was slowly shutting down, which is why he wouldn’t wake up and feed. He didn’t have the strength to. They told us that if we had left him for another day he would have died. He would have slowly starved to death. I spent all night just sitting in the NICU watching him. It was awful. I was so scared he was going to die
Come Tuesday morning they started doing a heap of tests on him. Lots and lots of blood tests to try and find out why he was like he was. They were asking me all kinds of questions about my pregnancy and stuff. One thing they thought might have been the problem was that his calcium level might have been low because of my diabetes. They tested him for all other things like infections as well. And all the time they were feeding him through his nasal tube every 2 hours. Well after numerous tests later they found out that he has a Strep B infection. I rang my brother to look it up on the web to see what it was. Now they knew what he had they had to try and treat it. They tried to put an intravenous line in so they could pumped him full of antibiotics but they couldn’t get one in. They ended up ringing the Women’s and children’s Hospital in Adelaide and a hospital in Melbourne before they found one they could give him orally. After just 2 doses of antibiotics I could already see the improvement in him. Scott had to go back to Pirie so I was left up in Port Augusta for 2 days on my own. But my little boy was improving so it was ok. My brother and his wife paid me a surprise visit as well so that was good. They were very shocked as to how little he was and how sick he looked. By Wednesday afternoon he was waking regularly and was moving around a bit. Scott brought kloe and his mum up for a visit. Kloe was allowed to hold him but she was a bit scared of all the wires and tubes. They told us that if he kept improving overnight, on Thursday, they would take him out of the humidicrib to see if he could maintain his own body temperature and if he could then we could go back to Pirie on Friday. Well I had a very strict talking to my little man and he did improve overnight and did get out of the crib and was able to maintain his body temperature. They then wanted me to start trying to feed him again. He couldn’t latch on. It was like he had lost the ability to suck. So they got me to try and express it but I couldn’t do it. They said it was probably all the stress.
On Friday we got to go home, well back to Pirie hospital in anycase. My mid-wife back here was very angry that they hadn’t gotten me to express all the time they were feeding him through his nose. Now my milk supply was compromised. They gave me some tablets to try and build it back up, but Jack still wouldn’t latch on and suck properly. I had to make a choice about what we wanted to do. Try and get my supply back or put him on the bottle and formula. Another very hard decision to make. I don’t think I have cried so much in all my life. I was a huge big blubbering mess. I just didn’t need this on top of everything else. We had just had a baby everything was suppose to be all fun and excitement, not like this. I eventually decided to put him on the bottle. I’m still not happy about it but its done. He now still has the sucking problem. He finds it very hard to 'latch on' to whatever is put in his mouth. We are not sure if this has been caused through the infection or not.
We came home from hospital following jacks birth on Friday 29th and everything was fine. He was sleeping a lot and not feeding very often but the nurses in the hospital said he would get himself into a routine. So we thought OK. When they released him and did his obs before we left he had lost over 10% of his birth weight. This should have rung some bells but evidently it didn’t! They probably just wanted our bed!.
His eating sleeping routine never changed much over the weekend. If anything he was sleeping more and eating less. We were getting a bit concerned bout it all and when the mid-wife came out on Monday to do a follow up visit we mentioned it to her. This was 11.30am and the last time he had fed was about 4am in the morning! He hadn’t woken since! She tried to wake him and he just wouldn’t. She mentioned that he felt cold even though he was wrapped up. She took his temp and it was 35.4. Very cold! She told us too wrap him up and try and get him warmer and she would be back in 2 hours to see if he had woken up yet. Well she came back at 2.30. he was still asleep. Still hadn’t eaten and when she took his temp he was 35.1, so even colder. She told us to get him up to the hospital straight away. We rushed him up there, luckily its only a 5 minute drive! They put him straight in the humidicrib and started warming him up. Scott went and picked Kloe up from school and I stayed with Jack. When he was back up to 36 degrees he was stirring and opening his eyes so they tried to get him to feed but he wouldn’t. He was like a rag doll. So they got me to express some and tried to feed him by bottle but still no go. They just kept warming him up hoping he would want to feed once he got back to normal temperature. Scott took Kloe home to give her some tea. As Jack was getting warmer his body started twitching and doing weird things. They called the doctor in and he was basically baffled by what he was doing. They rang the pediatricians in Port Augusta about 7pm to ask their opinion. They suggested trying to feed him again and if that didn’t work to put in a nasal gastric tube to feed him that way. Well he just got worse and worse and by 8pm he had a full on seizure. I had never been so scared in all my life! Even the mid-wife and doctor were shocked. So they were back on the phone to Port Augusta and an ambulance transport was arranged to take him up there. Everything from then on was so surreal. People running everywhere, me on the phone to scott trying to arrange things for Kloe and for him to get back up to the hospital. We left Pirie by ambulance at about 8.50pm. Scott followed in our car. We got to Port Augusta about an hour later. They spent the next hour sticking tubes in him and wires and all other things it was horrible. He looked so terrible laying almost lifeless in the humidicrib with all his ribs showing and his belly all sunken in. I was a mess to say the least.. The only time he made a noise was when they put the tube up his nose. And then he sounded like a starving kitten. They started pumping some kind of food into him straight away.
. They weighed him and he was 5lb 8oz, so he had lost 1lb 4oz since he was born.. Over 13% of his body weight. He no longer had the strength to keep surviving on his own. His little body was slowly shutting down, which is why he wouldn’t wake up and feed. He didn’t have the strength to. They told us that if we had left him for another day he would have died. He would have slowly starved to death. I spent all night just sitting in the NICU watching him. It was awful. I was so scared he was going to die
Come Tuesday morning they started doing a heap of tests on him. Lots and lots of blood tests to try and find out why he was like he was. They were asking me all kinds of questions about my pregnancy and stuff. One thing they thought might have been the problem was that his calcium level might have been low because of my diabetes. They tested him for all other things like infections as well. And all the time they were feeding him through his nasal tube every 2 hours. Well after numerous tests later they found out that he has a Strep B infection. I rang my brother to look it up on the web to see what it was. Now they knew what he had they had to try and treat it. They tried to put an intravenous line in so they could pumped him full of antibiotics but they couldn’t get one in. They ended up ringing the Women’s and children’s Hospital in Adelaide and a hospital in Melbourne before they found one they could give him orally. After just 2 doses of antibiotics I could already see the improvement in him. Scott had to go back to Pirie so I was left up in Port Augusta for 2 days on my own. But my little boy was improving so it was ok. My brother and his wife paid me a surprise visit as well so that was good. They were very shocked as to how little he was and how sick he looked. By Wednesday afternoon he was waking regularly and was moving around a bit. Scott brought kloe and his mum up for a visit. Kloe was allowed to hold him but she was a bit scared of all the wires and tubes. They told us that if he kept improving overnight, on Thursday, they would take him out of the humidicrib to see if he could maintain his own body temperature and if he could then we could go back to Pirie on Friday. Well I had a very strict talking to my little man and he did improve overnight and did get out of the crib and was able to maintain his body temperature. They then wanted me to start trying to feed him again. He couldn’t latch on. It was like he had lost the ability to suck. So they got me to try and express it but I couldn’t do it. They said it was probably all the stress.
On Friday we got to go home, well back to Pirie hospital in anycase. My mid-wife back here was very angry that they hadn’t gotten me to express all the time they were feeding him through his nose. Now my milk supply was compromised. They gave me some tablets to try and build it back up, but Jack still wouldn’t latch on and suck properly. I had to make a choice about what we wanted to do. Try and get my supply back or put him on the bottle and formula. Another very hard decision to make. I don’t think I have cried so much in all my life. I was a huge big blubbering mess. I just didn’t need this on top of everything else. We had just had a baby everything was suppose to be all fun and excitement, not like this. I eventually decided to put him on the bottle. I’m still not happy about it but its done. He now still has the sucking problem. He finds it very hard to 'latch on' to whatever is put in his mouth. We are not sure if this has been caused through the infection or not.
We had a follow up visit this friday just gone with the doctor, who gave him a thorough going over. So far he seems to have not been affected by the infection, but there are a lot of things that cant be tested until he is older. I dont care if he does have a few things wrong. I'm just glad he is here with us! We can deal with other issues in times to come!
We just need out little man to start gaining back some of the weight he has lost. they are giving him a few weeks to try and get back to his birth weight. If he cant then its down to Adelaide to visit some specialists down there who might have some magic suggestions. In the meantime we can just hope and pray.
Here is a photo of my little man just before they took the nasal tube out. I have other photos of him in the humidicrib but they are on my phone, and I havent worked out how to get them off just yet. Have had lots of other things on my mind!
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Just want to send a huge big thank you out to Ros, who if it wasnt for you our little boy wouldnt be here. Trudi and Alan for all that you did, and all that you continue to do! All in the NICU at Port Augusta, and the wonderful C ward staff. thank you all!!
18 comments:
Oh MG Leonie, your poor little man!! So glad that he is picking up now and SO glad that you picked up on his difficulties in time!! Thank God!! Keep well for him and try not to stress too much about the bottle feeding thing - the priority is to get the little guy fattened up. Thinking of you
OMG, Leonie. It's scary enough just reading about the whole thing on your blog. Poor Jack, poor you. Hope Jack puts on lots of weight this week. Thinking of you.
Heike xox
That is too scary. So glad his condition was caught when it was it was. Fingers crossed for a continued improvement.
Oh Leonie, how scary for you all. Your poor little munchkin. ((((((((((((((HUGS)))))))))))) to you all. You are all in my thoughts and prayers.
Hey Lone - you know I wished I could have been with you at that time. Fingers and toes crossed for Jack and his weight gain.
Hugs honey
TD xoxox
Thinking of you, your family and of course your darling wee man. That was one very brave post you have blogged to share with us.
Chin up ... I truly hope that the last few days have seen a much improved young man ... hugs being sent your way.
Take care.
OMG OMG OMG!!!! biggest ever hugs babe!!!!!
Oh Leonie I had no idea that this had happened. How frightening for you all. I hope Jack continues to improve. Your photo of him is just so precious. Give him a gentle cuddle from me.
Love and hugs
Anna
xxx
Oh no this is dreadful! I am so pleased things are looking up and will pray that Jack continues to be a good boy and puts on weight. My heart goes out to you all.
Oh Leonie, I am sitting here crying. :( Your poor precious bubby!! We have had such an horrendous couple of days here ourselves and reading this just makes my heart break. There are no words but honey I AM THINKING OF YOU AND PRAYING SO HARD YOUR LITTLE MAN WILL CONTINUE TO GAIN STRENGTH! Please let us know how he gets on over the next few days.
Blessings to you and your beautiful miracle bub,
Love Chrissy x
Leonie - OMG, I had no idea this was going on! I am sooooooo glad someone finally took the time to pay attention and save your little man! I hope he is doing better now and I hope he got over his infection *hugs*.
Christi
aka nzmommy
Dear Leonie. You poor girl. what a stressful time. Sending you lots of sunshine and rainbows for a speedy recovery for Jack.
Julie D
Oh my God Leonie. What a stressful time you have had. I was tearing up reading, and imagining your little bubby fighting for his life. But what a little fighter. He will be flying around the place giving you curry in no time.
Thinking of you
Leonie,
How absolutely terrifying for you and your family - such a near disaster. All the girls from S4L are keeping you, your family and your precious baby boy in our thoughts and prayers.
Hugs,
Lisa
Leonie: What a scary thing! I'm so glad Jack is better and I will pray for him to continue to improve. Don't worry about the bottle feeding, just hold him close.
Your friend from Puzzle Arts, Linda
I just cried my way through your whole post!! Its like your worst nightmare playing out before your very eyes! With all you have been through leading up to Jacks arrival it is a cruel twist of fate to have something like this happen. Prayers for Jacks continued recovery. BTW I dont work on Sat so Im very sorry I wont get to catch up with you on the weekend. I work Sundays.
Leonie that is the sadest story i cried reading it you poor thing.Things can only get better from here.You take care of yourself too as that little man needs you too.So glad he is okay.
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