We got a phone call at 6am this morning to inform us that Hannah's operation had been cancelled for today due to her having an elevated lactic acid level. While many would be upset & frustrated by this, (& believe me the dr's & nurses were!), we are quite calm & accepting of it. Why? Well you see every night when I have to get up at 3am to express milk I use the time to pray for Hannah & the other children whose medical stories I have been following. Last night I ask God that if today was not the right time for her to have the op that He would cause it to be delayed. So we believe that this was God's answer to that prayer & His hand in this situation. Another thing I prayed for was that the doctors involved in Hannah's op would have had a good nights sleep & be fresh, then when we came up to then ward this morning & met the anethatist that was to be doing the op, he had been on duty last night & he was looking quite tired. So again this was an answer to prayer. <br>
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Hannah has been sedated again & given extra fluid & blood & she seems to have stabilised again. They are unsure of what caused the rise in lactid acid as she is well in all other areas, there is no infection & her heart looks the same as it has (no greater leaking from the valve or reduction in function). So now all going well she is scheduled for surgery Thursday. <br>
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As Tom's parents had come up to take care of Joshua & Hannah was to have a quiet day, we decided to have an early lunch & then headed to Randers Regnskov for the afternoon. Due to it being a very wet day, it was very crowded, but we still enjoyed seeing the exotic animals & getting away from the hospital for a bit.
Tuesday 31 July 2012
Saturday 28 July 2012
Decision is Made
Since I last wrote a lot has happened. They were finally able to do the ultrasound via the oesophagus & this showed what we were already aware of/expecting from the other scan, that her tricuspid valve (between the 2 right chambers of the heart) is leaking quite a bit, & that the stent put in to keep the ductus arteriosus open is starting to become blocked. So all going well & unless Hannah has a big leap forward in the positive direction over the weekend, she will have her next BIG op on Tuesday. This will involve repairing the leaking valve & doing the next stage of the 3 operatations. This second op is normally done at 3-4mths of age. Because she had the Hybrid procedure for her first op, the next stage is called the Hybrid Stage 2, which essentially is a combination of the Norwood (usually the first op) & the Glenn procedures. This involved 3 stages:
1. Removal of the stent in the ductus arteriosus and pulmonary artery bands, which were placed in the first op
2. The aortic arch is enlarged by disconnecting the small ascending aorta and connecting the aorta with the pulmonary artery root to make one large vessel, creating a new aorta.
3. The superior vena cava (brings blood back to heart from upper part of body) is connected to the pulmonary artery. This is called a Glenn shunt. This allows upper body blood flow to go directly to the pulmonary artery & lungs to be oxygenated, and the blood is not pumped through the heart first. This is a passive blood flow into the lungs.
It is possible that they will not be able to the 3rd stage due to too high of a pressure in the lungs, which newborns normally have & normally reduces when they are a bit older. If this is the case they will have to do a BT shunt instead. This is normally done during the Norwood procedure.
So are you with me? Followed all that & got it clear in your head? Well done if you have! It's taken 3 explainations from the drs & numerous pictures & explainations on the net & I'm still not sure I've got my head round it all yet.
Now as you can see this is a BIG operatation with BIG risks. No one knows if Hannah is strong enough to pull through it. She has a few things going against her. For one she is still quite small & not at full health & strength. Two, she has a mild infection in her CVC line & perineum. However, Tom & I have a real peace about it. I believe that God will get her through this despite the odds. Having said that I'm still constantly praying that all will go well & would ask you to do the same.
Please pray:
* that Hannah will have the strength to pull through the operation & recovery.
* skill, wisdom & guidance for the doctors/surgeons
* that the pressure in Hannah's lungs will be low enough to be able to do the Glenn shunt.
* peace & strength for Tom & I
1. Removal of the stent in the ductus arteriosus and pulmonary artery bands, which were placed in the first op
2. The aortic arch is enlarged by disconnecting the small ascending aorta and connecting the aorta with the pulmonary artery root to make one large vessel, creating a new aorta.
3. The superior vena cava (brings blood back to heart from upper part of body) is connected to the pulmonary artery. This is called a Glenn shunt. This allows upper body blood flow to go directly to the pulmonary artery & lungs to be oxygenated, and the blood is not pumped through the heart first. This is a passive blood flow into the lungs.
It is possible that they will not be able to the 3rd stage due to too high of a pressure in the lungs, which newborns normally have & normally reduces when they are a bit older. If this is the case they will have to do a BT shunt instead. This is normally done during the Norwood procedure.
So are you with me? Followed all that & got it clear in your head? Well done if you have! It's taken 3 explainations from the drs & numerous pictures & explainations on the net & I'm still not sure I've got my head round it all yet.
Now as you can see this is a BIG operatation with BIG risks. No one knows if Hannah is strong enough to pull through it. She has a few things going against her. For one she is still quite small & not at full health & strength. Two, she has a mild infection in her CVC line & perineum. However, Tom & I have a real peace about it. I believe that God will get her through this despite the odds. Having said that I'm still constantly praying that all will go well & would ask you to do the same.
Please pray:
* that Hannah will have the strength to pull through the operation & recovery.
* skill, wisdom & guidance for the doctors/surgeons
* that the pressure in Hannah's lungs will be low enough to be able to do the Glenn shunt.
* peace & strength for Tom & I
Thursday 26 July 2012
In Gods hands
After 6 weeks in intensive care all the nice words in the beginning about whether or not God gives special strength to Christians during hard times are being tested.
Not seeing any great improvement in Hannah's condition, hearing the doctors not knowing what to do, seeing the expressions on the nurses faces, the uncertainties and all the if's and maybes, it is in someways getting more and more difficult to handle. However, at the same time we must say that we have a strange peace about it all, this I think surprises many in the care team as they keep asking if we are okay or if we would like to talk to a priest or psycologist.
My question is then what is it that brings that peace? If there is no difference between Christian and Non-Christian then can this be explained by some human strength or extraordinary ability to stay calm under pressure?
Living in the "Familyhouse" we hear of other families going through difficult times, and I notice that one thing which often comes up is that all families rely on the skills of the doctors and nurses to do their job properly. This is very true. Without the ability of the nurses and doctors we wouldn't have much of a chance. One mistake from a doctor could end it all, or as with Hannah they are talking about that the reason for the defect in the heart valve could be due to it being scratched during the first operation, a small mistake by one of the surgeons which is now having big consequences. My point is that if our hope is only relying on the ability of the doctors I would be a nervous wreck. How can I trust another human being not to make a wrong decision or a mistake, when I can't trust myself to do the same.
So why can I sit calmly in my chair watching my daugther's blood pressure dropping below what it has been earlier, and write this blog?
My hope lies with God! I trust that no matter what the doctors do the outcome will in the end be under God's control. I even trust that if the doctors decide to give up today and turned off the respirator, but it is God's will that Hannah should live, he will be able to make her breathe. On the other hand, if it is not God's will that she should live, then the doctors can do everything right and the outcome will be the death of Hannah. I think this is the source of my peace: there is nothing I can do to change the will of God, there is nothing the doctors can do to change the final outcome. This doesn't mean that we don't appreciate the highly qualified staff that we've met here at Skejby, but it means that we see them as a tool in Gods hand.
God is good to us, we can enjoy the sunny days, spend time together with our family, get to think and read more books and overall get to experience the feeling of being in Gods hands.
Not seeing any great improvement in Hannah's condition, hearing the doctors not knowing what to do, seeing the expressions on the nurses faces, the uncertainties and all the if's and maybes, it is in someways getting more and more difficult to handle. However, at the same time we must say that we have a strange peace about it all, this I think surprises many in the care team as they keep asking if we are okay or if we would like to talk to a priest or psycologist.
My question is then what is it that brings that peace? If there is no difference between Christian and Non-Christian then can this be explained by some human strength or extraordinary ability to stay calm under pressure?
Living in the "Familyhouse" we hear of other families going through difficult times, and I notice that one thing which often comes up is that all families rely on the skills of the doctors and nurses to do their job properly. This is very true. Without the ability of the nurses and doctors we wouldn't have much of a chance. One mistake from a doctor could end it all, or as with Hannah they are talking about that the reason for the defect in the heart valve could be due to it being scratched during the first operation, a small mistake by one of the surgeons which is now having big consequences. My point is that if our hope is only relying on the ability of the doctors I would be a nervous wreck. How can I trust another human being not to make a wrong decision or a mistake, when I can't trust myself to do the same.
So why can I sit calmly in my chair watching my daugther's blood pressure dropping below what it has been earlier, and write this blog?
My hope lies with God! I trust that no matter what the doctors do the outcome will in the end be under God's control. I even trust that if the doctors decide to give up today and turned off the respirator, but it is God's will that Hannah should live, he will be able to make her breathe. On the other hand, if it is not God's will that she should live, then the doctors can do everything right and the outcome will be the death of Hannah. I think this is the source of my peace: there is nothing I can do to change the will of God, there is nothing the doctors can do to change the final outcome. This doesn't mean that we don't appreciate the highly qualified staff that we've met here at Skejby, but it means that we see them as a tool in Gods hand.
God is good to us, we can enjoy the sunny days, spend time together with our family, get to think and read more books and overall get to experience the feeling of being in Gods hands.
Wednesday 25 July 2012
6 Weeks
It's 6 weeks today since Hannah had her op. We're still in ICU, she's still on the repirator & dialysis & still has one drain. Not exactly where we'd imagined we'd be at this stage. It has certainly been a bumpy road thus far, with many highs & lows, & no doubt many more to come. But through it all we have seen God at work, pulling her through each crisis, keeping her free from infection & giving us the strength we need. We have been drawn closer to Him, constantly brought to our knees before Him in total surrender, reminded that human strength & wisdom are completely inferior to His.
Hannah's condition continues to be stable. Her white cell count remained low following the pause in antibiotics. We are still waiting on the results of the cultures, but it looks like good news. After consulting with the renal dr she was recommenced on the Vancomyacin in her dialysis fluid to just make sure the bacteria is gone there.
The cardiac surgeon came by & said they would like to wait 3 weeks before doing the Glenn procedure (second stage op) & fix valve at the same time, but also need to time it for while she is at her strongest, the longer they wait the high the risk of her suddenly going backwards & missing the window of oportunity, so it's a day by day decision. If they can't wait, then it means they will probably fix the valve & then do the Glenn at a later stage. The Glenn procedure would take a lot of pressure/workload off the heart which hopefully would improve Hannah's condition.
Pray:
* for wisdom for the Drs in determining the right time for the op & whether to do the Glenn or just fix the valve.
* that Hannah would continue to stay strong & do well, & if possible even improve in condition.
Hannah's condition continues to be stable. Her white cell count remained low following the pause in antibiotics. We are still waiting on the results of the cultures, but it looks like good news. After consulting with the renal dr she was recommenced on the Vancomyacin in her dialysis fluid to just make sure the bacteria is gone there.
The cardiac surgeon came by & said they would like to wait 3 weeks before doing the Glenn procedure (second stage op) & fix valve at the same time, but also need to time it for while she is at her strongest, the longer they wait the high the risk of her suddenly going backwards & missing the window of oportunity, so it's a day by day decision. If they can't wait, then it means they will probably fix the valve & then do the Glenn at a later stage. The Glenn procedure would take a lot of pressure/workload off the heart which hopefully would improve Hannah's condition.
Pray:
* for wisdom for the Drs in determining the right time for the op & whether to do the Glenn or just fix the valve.
* that Hannah would continue to stay strong & do well, & if possible even improve in condition.
Monday 23 July 2012
The Same
Hannah continues just the same, no big changes. She is stable & eating well. They still haven't done the ultrasound scan to look closer at the heartvalve problem, as the probe for infants is in for repair and will not be back for at least 14 days. They are going to try & get another probe from somewhere, but haven't heard anything yet. I'm not too concerned, or anxious about it as as I said in the last post I believe there is a reason for this delay & at the right time it will happen.
The latest tests of her dialysis fluid show no sign of bacteria, so they have stopped the Vancomyacin. Her white blood cell count continues to go up & down a little, so they are thinking of stopping the prophylactic antibiotics she is getting for 24hr to see if any infection shows up & then they can treat that more specifically. Please pray that if there is an infection that it will not take too much of a hold before they start treating it.
Friday night the drain in her left pleural cavity fell out. This was the one that fell out a week ago but had to be replaced again as fluid started to build up. So far this time it has been able to stay out with no more fluid building up. So hopefully we can now safely say she is one drain down, one to go. It could be a while til the other comes out as it is still draining a fair amount of fluid.
The latest tests of her dialysis fluid show no sign of bacteria, so they have stopped the Vancomyacin. Her white blood cell count continues to go up & down a little, so they are thinking of stopping the prophylactic antibiotics she is getting for 24hr to see if any infection shows up & then they can treat that more specifically. Please pray that if there is an infection that it will not take too much of a hold before they start treating it.
Friday night the drain in her left pleural cavity fell out. This was the one that fell out a week ago but had to be replaced again as fluid started to build up. So far this time it has been able to stay out with no more fluid building up. So hopefully we can now safely say she is one drain down, one to go. It could be a while til the other comes out as it is still draining a fair amount of fluid.
Sunday 22 July 2012
Quiet
Not a great deal to report. It's been a quiet weekend, Hannah has been stable. Still no sign of her kidneys functioning. The fluid from her drains seems to be lower and the dialysis fluid is not leaking as much as earlier.
The medicine for her BP seems to be working, but it is unsure at the moment whether it's enough to avoid surgery. They are unable to see clear enough on the normal ultrasound, exactly how much the valve is leaking & whether there is any damage to it. So Friday they were supposed to sedate her & pass a small ultrasound scanner down her eosophagus to get a better picture. (amazing what they can do!) However the only scanner of this type in the hospital was away for repair. So now we will have to wait until Monday at the earliest to get this done. While some may be frustrated at this & think "how can this be?", both Tom & I have a peace that this is God's plan & there is some reason for the delay. So we continue to trust God & His timing in it all.
With everything going so quietly here, we took Joshua to a large indoor playground yesterday and had a break from the hospital. He had a great time & it was good for Tom & I to have a little fun as well.
The medicine for her BP seems to be working, but it is unsure at the moment whether it's enough to avoid surgery. They are unable to see clear enough on the normal ultrasound, exactly how much the valve is leaking & whether there is any damage to it. So Friday they were supposed to sedate her & pass a small ultrasound scanner down her eosophagus to get a better picture. (amazing what they can do!) However the only scanner of this type in the hospital was away for repair. So now we will have to wait until Monday at the earliest to get this done. While some may be frustrated at this & think "how can this be?", both Tom & I have a peace that this is God's plan & there is some reason for the delay. So we continue to trust God & His timing in it all.
With everything going so quietly here, we took Joshua to a large indoor playground yesterday and had a break from the hospital. He had a great time & it was good for Tom & I to have a little fun as well.
Thursday 19 July 2012
Plateau
Hannah seems to have reached a plateu in her recovery. She has improved to the stage she was 2 weeks ago & is not going any further. This is concerning the drs & why they are focusing now on the leaking heart valve, as they believe this may be what is holding her back.
I will try to explain the problem so you can understand. Firstly, there was nothing wrong with her valve when she was born, but due to the extra work the right side of the heart has to do since the operation it has grown a bit. This means that the valve between the 2 right chambers of the heart no longer snugly fits the gap and causes a small back flow into the top chamber of the heart when the bottom one contracts to pump blood out to the body & lungs. This results in a reduced flow out into the body and to the lungs, & as the body naturally will ensure the flow to the vital parts of our organs, less flow is going to the kidneys and lower part of the body, hence the reason for her kidneys not kicking back in (that's the theory anyway).
A second consequence is that the flow coming back from the lungs to the heart are meeting a higher resistance due to the higher preessure in top champer of the heart. This means that the flow is backed up in the lungs which could be the reason for the continued fluid in the drains.
Two alternatives are sugested to fix the problem. One: lower the blood pressure by medication; two: do heart surgery to try and fix the leaking valve. At the moment we are trying to reduce her blood pressure with medication. This hadn't been working so far, so today they increased the dose of the drug, plus started a second drug. So far it seems to be having some effect, but not sure if it's enough.
Keeping her feeds down continued to be a problem, so they talked of again inserted the NG tube so that it goes directly into her intestines. They had previously tried this last time she had trouble with vomiting & it was sucessful, but apparently when they replaced the tube last week they just put it in her stomach. HOWEVER, while waiting for them to do this, she started keeping her feeds down. So we are just continuing as it is & see how it goes.
There continues to be a small amount of urine producion, but not much. The dialysis is still working well. There was however a small amount of bacteria in the fluid that has come out the last 2 days, so they have started putting vancomyacin (an antibioic) in the dialysis fluid. This is something they are famiæiar with in treating adults, however is not something they normally do for infants, so they are a little unsure of the dosage & it's a little trial & error.
I will try to explain the problem so you can understand. Firstly, there was nothing wrong with her valve when she was born, but due to the extra work the right side of the heart has to do since the operation it has grown a bit. This means that the valve between the 2 right chambers of the heart no longer snugly fits the gap and causes a small back flow into the top chamber of the heart when the bottom one contracts to pump blood out to the body & lungs. This results in a reduced flow out into the body and to the lungs, & as the body naturally will ensure the flow to the vital parts of our organs, less flow is going to the kidneys and lower part of the body, hence the reason for her kidneys not kicking back in (that's the theory anyway).
A second consequence is that the flow coming back from the lungs to the heart are meeting a higher resistance due to the higher preessure in top champer of the heart. This means that the flow is backed up in the lungs which could be the reason for the continued fluid in the drains.
Two alternatives are sugested to fix the problem. One: lower the blood pressure by medication; two: do heart surgery to try and fix the leaking valve. At the moment we are trying to reduce her blood pressure with medication. This hadn't been working so far, so today they increased the dose of the drug, plus started a second drug. So far it seems to be having some effect, but not sure if it's enough.
Keeping her feeds down continued to be a problem, so they talked of again inserted the NG tube so that it goes directly into her intestines. They had previously tried this last time she had trouble with vomiting & it was sucessful, but apparently when they replaced the tube last week they just put it in her stomach. HOWEVER, while waiting for them to do this, she started keeping her feeds down. So we are just continuing as it is & see how it goes.
There continues to be a small amount of urine producion, but not much. The dialysis is still working well. There was however a small amount of bacteria in the fluid that has come out the last 2 days, so they have started putting vancomyacin (an antibioic) in the dialysis fluid. This is something they are famiæiar with in treating adults, however is not something they normally do for infants, so they are a little unsure of the dosage & it's a little trial & error.
Wednesday 18 July 2012
Positives
We were greeted this morning by a happy excited nurse who rattled off a list of positive things with Hannah.
* Drain fluid amount greatly reduced
* Urine production, though only a small amount
* Minimal leakage from dialysis
* She had slept well over night It was good to hear some good news for a change.
Everything however is not good. She has struggled since yesterday to keep much of her feeds down. Due to this she has had a little bleeding from her stomach & they have started up the TPN again so that she gets the calories she needs. They are still trying to feeds her via then NG tube as well, but just small amounts. Currently she is tolerating 10ml every 2hrs.
* Drain fluid amount greatly reduced
* Urine production, though only a small amount
* Minimal leakage from dialysis
* She had slept well over night It was good to hear some good news for a change.
Everything however is not good. She has struggled since yesterday to keep much of her feeds down. Due to this she has had a little bleeding from her stomach & they have started up the TPN again so that she gets the calories she needs. They are still trying to feeds her via then NG tube as well, but just small amounts. Currently she is tolerating 10ml every 2hrs.
Tuesday 17 July 2012
A New Week
Hannah has been doing better the last couple of days. Today she has been doing well clinically (heartrate, blood pressure, numbers etc), but has been very restless/ unsettled & irritable. She has been vomiting with every feed & spiked a couple of temperatures. None of the usual method of settling seem to be working (clean nappy, repositioning, suctioning). I did get to hold her again this morning which she seemed to enjoy.
Yesterday the doctors came & scanned her heart and everything is looking as expected. However, they are a little concerned that the leaking heart valve is making the other problems worse, even though it is not a significant leak. They will try & help this with some medication, but if this doesn't work by the end of the week there are some big decisions to be made as the only other option is surgery. This would be high risk & the drs are not sure in her current condition that Hannah would make it thorugh. As you can imagine this is a scary prospect to be facing, even though we trust the God is in control & He can pull her through despite the odds.
We also tried putting her back on my breastmilk today, but unfortunately the fat returned in the drain fluid straight away, so we'll give her the formula for another week & try again.
Please pray for Tom & I, that God would continue to give us the strength we need, not just physically & emotionally, but also spititually. I feel Satan is really trying to use this situation to weaken our faith. Having said this, I have also been encouraged by the following Scriptures:
Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Psalm 23:4
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7
Yesterday the doctors came & scanned her heart and everything is looking as expected. However, they are a little concerned that the leaking heart valve is making the other problems worse, even though it is not a significant leak. They will try & help this with some medication, but if this doesn't work by the end of the week there are some big decisions to be made as the only other option is surgery. This would be high risk & the drs are not sure in her current condition that Hannah would make it thorugh. As you can imagine this is a scary prospect to be facing, even though we trust the God is in control & He can pull her through despite the odds.
We also tried putting her back on my breastmilk today, but unfortunately the fat returned in the drain fluid straight away, so we'll give her the formula for another week & try again.
Please pray for Tom & I, that God would continue to give us the strength we need, not just physically & emotionally, but also spititually. I feel Satan is really trying to use this situation to weaken our faith. Having said this, I have also been encouraged by the following Scriptures:
Though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me. Psalm 23:4
Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. 7 And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Philippians 4:6-7
More thought, less philosophy
My last posts have been a bit philosophical, as to this question of what the differences between Christians and non-christians going through tough times are. This post will be more about the thoughts and feelings over the last couple of weeks.
After the first two weeks, where our emotions were going up and down and it was difficult to handle, we have had a strange peace about everything that has been going on with Hannah. Of course there has been times with tears and where you what to give up, but we have been able to talk about it and the more we see Hannah go through the more we see how God does have a protecting hand over Hannah.
It is comments from doctors and nurses like "not many grown-ups would have had much chance of surviving what Hannah is going through", "I haven't seen a case with so much leaking and open wounds where infection has not been a problem" or "you two must be made of some special material going through this", which makes you realise that God must be doing something. Does this mean that we are certain that God will bring her through all this unharmed? No, but it gives us a hope and it gives us a peace that no matter what happens God is ultimately in control.
Maybe I'll be a little more philosophical anyway, as this might help understand my view on Hannah's situation and how I am dealing with it. I'm reading a book called "A Matter of Life and Death" by John Wyatt dealing with the whole dilemma of biological ethics and how far do you take medical treatment. Anyway the point he makes is how do we see human life. Are we just vessels of pre-programmed DNA's with the only purpose of providing survival of the species or do we have a much broader purpose as a relational being in a complex interdependance with other fellow human species.
From a Christian point of view humans are created in the image of God. So every time we look at another being of our kind we look at someone who reflects who God is (I know this may sound strange, but bare with me on this). What this mean to me is that you look at other people with a sense of wonder..."wow, here is a creature similar to me, showing me something about God" (This is not to be mistaken by the thought that we are all gods, we are just images or reflection of Gods character).
Secondly God "knitted us together in the womb" Psalm 139, even though this is a poetic language then the idea that God is in control of every human being who is born is unfathomable. It also means that God has created little Hannah with the heart defect. Of course this raise the big question of why! Which I think I discussed enough in my earlier post. But it also gives you the comfort of knowning that if God created Hannah and many others this way then they have a purpose. They are not just "mistakes" or defected humans, they enter into a context in which they affect many others and are part of the defining who we are. This raises other much deeper questions of how do I affect the people I'm around?, what is my role?, if I were to die tonight which lives would I have changed for the better?
Back to the feelings. I must say it is still hard and at times you wonder if you will be able to go through it all, but as one of the other parents said the other day, its not like you can say stop and say you want out. We knew when we found out that Hannah was going to be born with the heart defect that the chance of survival or full recovery was aganist us and that it would be difficult. Some may ask why we did not have an abortion and spare both us and Hannah from going through this? Again I think this is linked with our view on life. As God created all life with a purpose who are we to end it prematurely? Even though it is hard now, I think it would be even harder to not have given her the chance to live, and the question of what would she have been like if she had been born would haunt you the rest of your life. So, I think if I was asked again today if we should abort or go through with it, I would still go through with it.
Anyway I'm looking forward to seeing how it all ends. Something inside me tells me it will be a big joy which outweighs all the trouble we are going through.
After the first two weeks, where our emotions were going up and down and it was difficult to handle, we have had a strange peace about everything that has been going on with Hannah. Of course there has been times with tears and where you what to give up, but we have been able to talk about it and the more we see Hannah go through the more we see how God does have a protecting hand over Hannah.
It is comments from doctors and nurses like "not many grown-ups would have had much chance of surviving what Hannah is going through", "I haven't seen a case with so much leaking and open wounds where infection has not been a problem" or "you two must be made of some special material going through this", which makes you realise that God must be doing something. Does this mean that we are certain that God will bring her through all this unharmed? No, but it gives us a hope and it gives us a peace that no matter what happens God is ultimately in control.
Maybe I'll be a little more philosophical anyway, as this might help understand my view on Hannah's situation and how I am dealing with it. I'm reading a book called "A Matter of Life and Death" by John Wyatt dealing with the whole dilemma of biological ethics and how far do you take medical treatment. Anyway the point he makes is how do we see human life. Are we just vessels of pre-programmed DNA's with the only purpose of providing survival of the species or do we have a much broader purpose as a relational being in a complex interdependance with other fellow human species.
From a Christian point of view humans are created in the image of God. So every time we look at another being of our kind we look at someone who reflects who God is (I know this may sound strange, but bare with me on this). What this mean to me is that you look at other people with a sense of wonder..."wow, here is a creature similar to me, showing me something about God" (This is not to be mistaken by the thought that we are all gods, we are just images or reflection of Gods character).
Secondly God "knitted us together in the womb" Psalm 139, even though this is a poetic language then the idea that God is in control of every human being who is born is unfathomable. It also means that God has created little Hannah with the heart defect. Of course this raise the big question of why! Which I think I discussed enough in my earlier post. But it also gives you the comfort of knowning that if God created Hannah and many others this way then they have a purpose. They are not just "mistakes" or defected humans, they enter into a context in which they affect many others and are part of the defining who we are. This raises other much deeper questions of how do I affect the people I'm around?, what is my role?, if I were to die tonight which lives would I have changed for the better?
Back to the feelings. I must say it is still hard and at times you wonder if you will be able to go through it all, but as one of the other parents said the other day, its not like you can say stop and say you want out. We knew when we found out that Hannah was going to be born with the heart defect that the chance of survival or full recovery was aganist us and that it would be difficult. Some may ask why we did not have an abortion and spare both us and Hannah from going through this? Again I think this is linked with our view on life. As God created all life with a purpose who are we to end it prematurely? Even though it is hard now, I think it would be even harder to not have given her the chance to live, and the question of what would she have been like if she had been born would haunt you the rest of your life. So, I think if I was asked again today if we should abort or go through with it, I would still go through with it.
Anyway I'm looking forward to seeing how it all ends. Something inside me tells me it will be a big joy which outweighs all the trouble we are going through.
Sunday 15 July 2012
A Little Better
Hannah was still a bit shakey this morning with low O2 sats & "numbers" still going up & down. However she has stablised over the course of the day & I even got to have cuddles with her this afternoon (insert big smile!).
We had thought that they may have been able to try removing the drain in her left pleural cavity again today as not much had drained over night. However when they flushed it they found it had been blocked by fibrin & quite a bit of fluid drained after that. So we'll have to wait a little longer.
The dr informed us that while doing the ultrasound of the liver yesterday the technician also looked at the brain (not sure if this was of her own intuition or not), & found although there was no sign of any bleeds there was some abnormality noticed. To get further details on this she is going to have an MRI scan tomorrow.
We had thought that they may have been able to try removing the drain in her left pleural cavity again today as not much had drained over night. However when they flushed it they found it had been blocked by fibrin & quite a bit of fluid drained after that. So we'll have to wait a little longer.
The dr informed us that while doing the ultrasound of the liver yesterday the technician also looked at the brain (not sure if this was of her own intuition or not), & found although there was no sign of any bleeds there was some abnormality noticed. To get further details on this she is going to have an MRI scan tomorrow.
Saturday 14 July 2012
Short Lived
Unfortunately Hannah has had another turn for the worse. Same problems as Thursday. So once again she's sedated & they did another ultrasound of the liver to make sure they didn't miss anything on Thursday. It showed no abnormalitites. Another chest x-ray was taken, which was normal. She is also starting to build up fluid in her tissues again despite being on dialysis. In summary, she's becoming a sick little girl again & nobody knows why.
Pray God will give the drs wisdom & show them what is the cause as they are quite puzzled at the moment.
Pray God will give the drs wisdom & show them what is the cause as they are quite puzzled at the moment.
Friday 13 July 2012
Smiling
Hannah is doing much better today. Her "numbers" are all back to normal & she's awake again. Dialysis continues, leaking as always. She went to the cath lab for a contrast scan to check the placement of her CVC. This went well & showed that it was where it should be. This is good news as it means the drugs she is getting through it are going where they should. However it means we are none the wiser as to why the drain continues to drain so much fluid.
I am also doing much better today. Yesterday was just really a bad day for Hannah to take a turn for the worse, as I was already struggling emotionally, though not sure why, & this just was more than I could take.
Thank you for all your prayers & words of encouragement. We’re amazed by how many are supporting us & following Hannah's progress. We’re so thankful that God is using each of you to encourage us.
I am also doing much better today. Yesterday was just really a bad day for Hannah to take a turn for the worse, as I was already struggling emotionally, though not sure why, & this just was more than I could take.
Thank you for all your prayers & words of encouragement. We’re amazed by how many are supporting us & following Hannah's progress. We’re so thankful that God is using each of you to encourage us.
Thursday 12 July 2012
Puzzling Setback
Hannah took a turn for the worse this morning & the drs don't know why. Her liver numbers are swinging up & down. Ultrasound showed no real problem with the liver to cause this.
Lactate shot up. Don't know what caused it. But it seems to have returned to normal again now. But this could be just due to her being sedated & the meds they gave her.
Respiratory distress with acidosis. Lung x-ray clear.
She also had to have a drain placed in her left pleural cavity (lung) to drain the fluid that I mentioned last night.
So today has been filled with drs, radiologists, nurses, tests & tears.
Treatment/investigations:
Sedation
Dialysis
Blood & swab cultures
Echo - normal, no changes
Lactate shot up. Don't know what caused it. But it seems to have returned to normal again now. But this could be just due to her being sedated & the meds they gave her.
Respiratory distress with acidosis. Lung x-ray clear.
She also had to have a drain placed in her left pleural cavity (lung) to drain the fluid that I mentioned last night.
So today has been filled with drs, radiologists, nurses, tests & tears.
Treatment/investigations:
Sedation
Dialysis
Blood & swab cultures
Echo - normal, no changes
Wednesday 11 July 2012
Forward & Backwards
We started off today in good humour. Hannah was now down to one drain. One of the drains fell out last night & unfortunately there was still too much fluid build up to leave it out. So they came this morning & inserted a new one, while doing this they decided that the other drain wasn't needed anymore & took it out.
She has also had her respirator tube changed today. After she lost all the excess fluid in her body the tube she did have became loose & started to leak air around it. This wasn't a big problem, but did make the machine not too happy (kept alarming) & meant it wasn't really working to full capacity. So they have now inserted a bigger tube. We of course keep hoping that soon she will be able to come off it.
In the evening however things started to go a bit of course. She became cranky & restless, started vomitting her feeds & her lactate levels rose. On investigation they found a small build- up of fluid round her left lung where they had removed one of the drains. At this stage though it is thought to not be too big of a problem so they are just keeping a close eye on it.
She has also had her respirator tube changed today. After she lost all the excess fluid in her body the tube she did have became loose & started to leak air around it. This wasn't a big problem, but did make the machine not too happy (kept alarming) & meant it wasn't really working to full capacity. So they have now inserted a bigger tube. We of course keep hoping that soon she will be able to come off it.
In the evening however things started to go a bit of course. She became cranky & restless, started vomitting her feeds & her lactate levels rose. On investigation they found a small build- up of fluid round her left lung where they had removed one of the drains. At this stage though it is thought to not be too big of a problem so they are just keeping a close eye on it.
Tuesday 10 July 2012
Small Changes
There have been a few small positive changes take place with Hannah today.
1. She is off the IV nutrition and is now getting all her food through her stomach.
2. One of the drains has been removed, so only 2 more to go.
3. She has now been off dialysis for 3 days & her "numbers" as still ok.
1. She is off the IV nutrition and is now getting all her food through her stomach.
2. One of the drains has been removed, so only 2 more to go.
3. She has now been off dialysis for 3 days & her "numbers" as still ok.
Monday 9 July 2012
Time
Time is a funny concept. Everything work on time. Sometimes it flies other times it seems to stop.
We have now been here at the hospital for four weeks, and in some sense it seems like time has gone really quickly, but at the same time the days can be draging alongand you wish it would go faster.
So, what do I want to say with this...I don't know it is just an interesting observation.
I guess that when we go through the rotines of our normal daily life, we don't think too much about it. It's up in the morning, get everyone ready for whatever they need to do, go to work, be stressed because there is not enough time, come home, have dinner and waste time in front of the TV. The funny thing is that being here you quickly get into a similar rotine. Get up have breakfast, go up to Hannah, sit around waitng for the doctor to come and update on the day's planned events, sometimes it may be spiced up with a visit from x-ray, ultrasound or eco scanner, go and have lunch, have a short rest or play with Joshua, take Joshua to see Hannah, sit around or entertain Joshua on the Ipad, have dinner, put Joshua to bed, go up and see Hannah again and go to bed.
The other side is the waiting for Hannah to recover...Giving birth (half a day), the operation (half a day), getting off the CPR (one day), getting rid of the swelling to close her chest (small steps for two weeks), getting off the dialysis (one week), getting stable foodwise ( ?????), getting rid of drains (?????), getting of the ventilator (?????), all things which takes times.
I think the thing that suprises me is how easy it has been to adapt, but also how quickly I forget to spend time with God, in reading, in prayer, in behaivour. I guess I come back to the question from my philosophical post "what difference does it make being a Christian?"
A thought which has come to me through the last weeks is what James brings out in his letter chapter 2:17 "Even so faith, if it hath not works, is dead, being alone."
If our lives don't show any difference to the life other people live, is our faith dead? Has my faith died?
I mean, I've been on mission trips to Russia and Rominia, I've been to Bible school in Australia, I've lead bible studies through many of the books of the Bible, people are moved when I prepare a talk based on the Scripture, as a Christian I've done all the right things, but does my life show it?
I'm not talking about the faith which gives salvation. I'm talking about the faith that makes a difference. The faith which shows everyone else that trusting in God is not just a personal choice to help some people through the hard times.
What is it that characterise faith, what deeds should we expect to see in a Christian?
I've been ready a book by Kelly Minter called "The fitting room - Putting on the character of Christ", she base her book on Colossians 3:12-17
Put on then, as God's chosen ones, holy and beloved, compassion, kindness, humility, meekness, and patience, bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive. And above all these put on love, which binds everything together in perfect harmony. And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful. Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him."
What I liked about the book is that it clearly states that the only way that we can achieve the above is when we see ourselves in the light of who we are in Christ, which is a fallen sinner, doomed for eternity, but made right in Christ. Only when we see oursevles as chosen, holy and beloved in Christ, can we begin to show compassion, kindness, humility, meekness (gentleness) and patience.
Secondly how can we show compassion, kindness, etc. if we can't forgive. Forgiviness, is the ultimate sign of Christ's work towards us and will be the ultimate sign in our lives that Christ makes a difference. Coming to think about this is probably the real difference between being a Christian and not...the ability to forgive others when we've been hurt, the ability not to blame others when things go wrong, not to blame God when your baby is hurting and all you really want to do is to give up hope. This must be the real difference....
Think I got a bit carried away there. Anyway, things are going forward with Hannah one step at a time. We are greatfll for all your prayers and thoughts.
We have now been here at the hospital for four weeks, and in some sense it seems like time has gone really quickly, but at the same time the days can be draging alongand you wish it would go faster.
So, what do I want to say with this...I don't know it is just an interesting observation.
I guess that when we go through the rotines of our normal daily life, we don't think too much about it. It's up in the morning, get everyone ready for whatever they need to do, go to work, be stressed because there is not enough time, come home, have dinner and waste time in front of the TV. The funny thing is that being here you quickly get into a similar rotine. Get up have breakfast, go up to Hannah, sit around waitng for the doctor to come and update on the day's planned events, sometimes it may be spiced up with a visit from x-ray, ultrasound or eco scanner, go and have lunch, have a short rest or play with Joshua, take Joshua to see Hannah, sit around or entertain Joshua on the Ipad, have dinner, put Joshua to bed, go up and see Hannah again and go to bed.
The other side is the waiting for Hannah to recover...Giving birth (half a day), the operation (half a day), getting off the CPR (one day), getting rid of the swelling to close her chest (small steps for two weeks), getting off the dialysis (one week), getting stable foodwise ( ?????), getting rid of drains (?????), getting of the ventilator (?????), all things which takes times.
I think the thing that suprises me is how easy it has been to adapt, but also how quickly I forget to spend time with God, in reading, in prayer, in behaivour. I guess I come back to the question from my philosophical post "what difference does it make being a Christian?"
A thought which has come to me through the last weeks is what James brings out in his letter chapter 2:17 "Even so faith, if it hath not works, is dead, being alone."
If our lives don't show any difference to the life other people live, is our faith dead? Has my faith died?
I mean, I've been on mission trips to Russia and Rominia, I've been to Bible school in Australia, I've lead bible studies through many of the books of the Bible, people are moved when I prepare a talk based on the Scripture, as a Christian I've done all the right things, but does my life show it?
I'm not talking about the faith which gives salvation. I'm talking about the faith that makes a difference. The faith which shows everyone else that trusting in God is not just a personal choice to help some people through the hard times.
What is it that characterise faith, what deeds should we expect to see in a Christian?
I've been ready a book by Kelly Minter called "The fitting room - Putting on the character of Christ", she base her book on Colossians 3:12-17
Put on then, as God's chosen ones, holy and beloved, compassion, kindness, humility, meekness, and patience, bearing with one another and, if one has a complaint against another, forgiving each other; as the Lord has forgiven you, so you also must forgive. And above all these put on love, which binds everything together in perfect harmony. And let the peace of Christ rule in your hearts, to which indeed you were called in one body. And be thankful. Let the word of Christ dwell in you richly, teaching and admonishing one another in all wisdom, singing psalms and hymns and spiritual songs, with thankfulness in your hearts to God. And whatever you do, in word or deed, do everything in the name of the Lord Jesus, giving thanks to God the Father through him."
What I liked about the book is that it clearly states that the only way that we can achieve the above is when we see ourselves in the light of who we are in Christ, which is a fallen sinner, doomed for eternity, but made right in Christ. Only when we see oursevles as chosen, holy and beloved in Christ, can we begin to show compassion, kindness, humility, meekness (gentleness) and patience.
Secondly how can we show compassion, kindness, etc. if we can't forgive. Forgiviness, is the ultimate sign of Christ's work towards us and will be the ultimate sign in our lives that Christ makes a difference. Coming to think about this is probably the real difference between being a Christian and not...the ability to forgive others when we've been hurt, the ability not to blame others when things go wrong, not to blame God when your baby is hurting and all you really want to do is to give up hope. This must be the real difference....
Think I got a bit carried away there. Anyway, things are going forward with Hannah one step at a time. We are greatfll for all your prayers and thoughts.
I'm Sick
I have been fighting a sore throat, runny nose & headache for the last week now (unsure if it was a cold or just my hayfever) & after the hectic weekend it has finally got the better of me. So I have spent the day in bed sleeping/resting & trying to give my body the best chance of getting better. This has of course meant no visit to Hannah, which has been hard after having been away from her over the weekend, but also necessary as I don't want to go spreading my germs to her.
Back Again
Joshua, my parents & I have had a short trip away over the weekend. We were offered some free tickets to Legoland, & seeing as my parents needed to go back to Esbjerg to pick up somethings from the house, we decided to make a round trip of it. So Saturday morning after popping up to the hospital for a quick visit with Hannah we set off for Legoland. Joshua had a great time looking at all the lego models & going on the rides that he could. I'm not sure what his favourite was, but he was pretty impressed with the penguins & the trains. I can be pretty sure his least favourite was the pirate boat ride through the tunnel. He was terrified.
We slept at home Saturday night. It was great to see home again & see that everything was in order, as well as my vege garden & flower beds. My parents-in-law have been doing a good job of looking after it for me.
Sunday morning we went to church before heading back to Skejby. What a pleasure it was to see our church family again, as well as join together for worship.
While we were away Tom stayed back in Skejby with Hannah. She has been a bit "off" over the weekend. She is still stable, but she has had diahorrea, vomiting, fever & been quite cranky. Today they think this may be due to withdrawal symptoms from the Fentanyl (pain med), so have increased it slightly again. She has been off dialysis since 6am yesterday & has been producing approx. 3ml urine per hour. This is of course an improvement from 0ml, but still no where near enough. Tom has just come back from the hospital & informed me that her "renal numbers" have increased so she will probably start back up on dialysis again. Please continue to pray for her kidneys to start working properly.
They have also been fiddling around a bit with her feeds. The fluid coming out of her drains turned cloudy on Friday, which they thought was due to her body not breaking down the fat in the TPN (IV nutrition) & my milk. So she was changed to a special formula & TPN mix, but this didn't change anything & when the surgeon came round Saturday he said he believed it was due to the CVC line which they were putting the TPN through sitting in the cardiac cavity rather than in the heart where it should. So they stopped using this line, the drain fluid turned clear again & she started getting my milk again. But this morning the drain fluid is cloudy again so she's back on the special formula.
We slept at home Saturday night. It was great to see home again & see that everything was in order, as well as my vege garden & flower beds. My parents-in-law have been doing a good job of looking after it for me.
Sunday morning we went to church before heading back to Skejby. What a pleasure it was to see our church family again, as well as join together for worship.
While we were away Tom stayed back in Skejby with Hannah. She has been a bit "off" over the weekend. She is still stable, but she has had diahorrea, vomiting, fever & been quite cranky. Today they think this may be due to withdrawal symptoms from the Fentanyl (pain med), so have increased it slightly again. She has been off dialysis since 6am yesterday & has been producing approx. 3ml urine per hour. This is of course an improvement from 0ml, but still no where near enough. Tom has just come back from the hospital & informed me that her "renal numbers" have increased so she will probably start back up on dialysis again. Please continue to pray for her kidneys to start working properly.
They have also been fiddling around a bit with her feeds. The fluid coming out of her drains turned cloudy on Friday, which they thought was due to her body not breaking down the fat in the TPN (IV nutrition) & my milk. So she was changed to a special formula & TPN mix, but this didn't change anything & when the surgeon came round Saturday he said he believed it was due to the CVC line which they were putting the TPN through sitting in the cardiac cavity rather than in the heart where it should. So they stopped using this line, the drain fluid turned clear again & she started getting my milk again. But this morning the drain fluid is cloudy again so she's back on the special formula.
Friday 6 July 2012
At Mommy
Hannah had another quiet day. In the morning she had a cuddle and was sitting with mommy for about one and a half hour. She seems to relax and settle when she is in mommys arms.
'
The dialysis was set on hold for just over 12 hours in order to see if this would help her kidneys to get going. She is producing a little urine, but not enough to satisfy the doctors (about 1-2 ml/hr), so she went back on the dialysis, which is starting to leak through some of her openings again.
'
The dialysis was set on hold for just over 12 hours in order to see if this would help her kidneys to get going. She is producing a little urine, but not enough to satisfy the doctors (about 1-2 ml/hr), so she went back on the dialysis, which is starting to leak through some of her openings again.
Thursday 5 July 2012
Weaning
Hannah has continues to do well & take small steps forward. She is now being slowly weaned off the ventilator & is currently managing 1 - 1 1/2hrs off at a time. She continues to have periods of apnoea (forgetting to breath) but these are getting less.
They are also slowly reducing her pain medication (Fentanyl) by 0.1ml per day (has been on 1.2ml/day). This means she is becoming more alert & able to focus her eyes more.
She is also increased in the amount of breastmilk she is receiving via the NG tube. She is currently up to 25ml every 3hrs. In conjunction with this they are reducing the amount of IV nutrition she is receiving.
Her kidneys continue to not work, but all tests & scans show that everything is normal with them, so it is just a matter of waiting until they decide to kick in again. At the moment they are pausing the dialysis for a few hours each day & giving her Lasix (diuretic) to try & give them a nudge. We would ask that you really make this a focus of prayer.
They are also slowly reducing her pain medication (Fentanyl) by 0.1ml per day (has been on 1.2ml/day). This means she is becoming more alert & able to focus her eyes more.
She is also increased in the amount of breastmilk she is receiving via the NG tube. She is currently up to 25ml every 3hrs. In conjunction with this they are reducing the amount of IV nutrition she is receiving.
Her kidneys continue to not work, but all tests & scans show that everything is normal with them, so it is just a matter of waiting until they decide to kick in again. At the moment they are pausing the dialysis for a few hours each day & giving her Lasix (diuretic) to try & give them a nudge. We would ask that you really make this a focus of prayer.
Wednesday 4 July 2012
Cuddles
Finally after 21 days I got to hold Hannah again, & Tom got to hold her for the very first time. Apart from when they were moving her to & from the bed she was very content with being held. (check Facebook for pictures)
Her kidneys are still not working, so she continues on dialysis, but they believe she has got rid of all the excess fluid in her body so now it's just to remove the waste products that the kidneys normally would. Her arms and legs still feel a bit hard, but that is due to fat deposit under the skin from when her circulation was poor & with time it will disipate.
She is slowly weaning off the ventilator, but it will still be some time before she comes off it completely. At the moment she is managing about an hour all by her self.
Her kidneys are still not working, so she continues on dialysis, but they believe she has got rid of all the excess fluid in her body so now it's just to remove the waste products that the kidneys normally would. Her arms and legs still feel a bit hard, but that is due to fat deposit under the skin from when her circulation was poor & with time it will disipate.
She is slowly weaning off the ventilator, but it will still be some time before she comes off it completely. At the moment she is managing about an hour all by her self.
Thanks and Thoughts
Seems it's now my turn to write a philisophical post. Now my brain is definately not of the analytical/philisophical wiring like Tom's, but there are a few thoughts that have been on my mind lately & I feel prompted to share.
We praise God for the steady improvements we have seen in the last week as Hannah, with strength from God, has really been fighting and giving all of us inspiration to believe in the power of prayer and the ability for our God to sustain us in very trying times.
A few people have commented on how inspired they are with the strength Tom & I have shown in this situation. This is by no means any strength of our own. Without God giving us the strength we have needed we would have easily cracked under the pressure. It has by no means been easy & there have been a few times where we really have been holding on by the thinest of threads, but we hold fast in God's promise to always be with us, never leave us & his unfailing love for us, no matter what. When you're sitting in a waiting room while your daugther & drs fight for her life, & there's not a thing you can do, but cry out to God, & you pray the same thing over & over, & think "what more can I do".
Many of you have shared with us how God is speaking to you and your family through Hannah's fight and there is nothing that brings more joy to Tom and I than you having a closer relationship with our Heavenly Father because of His working in Hannah's situation. One of the nurses said to me that no adult & most babies would never have survived what Hannah has been through these past weeks, & although none of the drs have verbally said it outright, I think they too are a little surprised that she has survived. You pray for Hannah and our family constantly and we feel God answering those prayers constantly. We thank you for taking on this burden with us and ask you to please continue because we have a long way to go. It is encouraging to us to see so many people from all around the world interceding for Hannah & our family.
We praise God for the steady improvements we have seen in the last week as Hannah, with strength from God, has really been fighting and giving all of us inspiration to believe in the power of prayer and the ability for our God to sustain us in very trying times.
A few people have commented on how inspired they are with the strength Tom & I have shown in this situation. This is by no means any strength of our own. Without God giving us the strength we have needed we would have easily cracked under the pressure. It has by no means been easy & there have been a few times where we really have been holding on by the thinest of threads, but we hold fast in God's promise to always be with us, never leave us & his unfailing love for us, no matter what. When you're sitting in a waiting room while your daugther & drs fight for her life, & there's not a thing you can do, but cry out to God, & you pray the same thing over & over, & think "what more can I do".
Many of you have shared with us how God is speaking to you and your family through Hannah's fight and there is nothing that brings more joy to Tom and I than you having a closer relationship with our Heavenly Father because of His working in Hannah's situation. One of the nurses said to me that no adult & most babies would never have survived what Hannah has been through these past weeks, & although none of the drs have verbally said it outright, I think they too are a little surprised that she has survived. You pray for Hannah and our family constantly and we feel God answering those prayers constantly. We thank you for taking on this burden with us and ask you to please continue because we have a long way to go. It is encouraging to us to see so many people from all around the world interceding for Hannah & our family.
Tuesday 3 July 2012
Off the Respirator
Today Hannah continues stable. She had her first physio session this morning & apart from when they turned her over to the other side, she seemed to enjoy it. Her joints are all a bit stiff from having lay immobile for so long.
They decided to stop the dialysis for a couple of hours this morning to see if her kidneys would kick in. Unfortunately nothing happened so they started the dialysis back up again. They say they are 99% expectant that her kidneys will work again it's just a matter of time. There is that 1% chance however that they won't, so we keep praying.
The biggest step today was that Hannah was off the respirator, breathing on her own this evening. So far she has been off for an hour & has maintained her blood gases. It is likely however they will put her back on the respirator assistance over night though as it is still quite hard work for her & very tiring.
They decided to stop the dialysis for a couple of hours this morning to see if her kidneys would kick in. Unfortunately nothing happened so they started the dialysis back up again. They say they are 99% expectant that her kidneys will work again it's just a matter of time. There is that 1% chance however that they won't, so we keep praying.
The biggest step today was that Hannah was off the respirator, breathing on her own this evening. So far she has been off for an hour & has maintained her blood gases. It is likely however they will put her back on the respirator assistance over night though as it is still quite hard work for her & very tiring.
It's Closed
It finally happened! At around 6pm this evening the drs finally completely closed Hannah's chest. All went well & so far she appears fairly stable. We first got a call at 1pm to say they were going to start the procedure in the next 20min, so I raced up to the ward to see her, as I hadn't seen her this morning. Just as I got there they got a call to say that it would be delayed a little (ie. maybe 1/2hr). Finally they came at 5:00pm, so we have been waiting expectantly most of the afternoon.
In other happenings of the day:
* she got a new, clean bed (something they do every fortnight)
* she was supposed to start physio, but when they came she had just been moved to the new bed & needed a rest
* Joshua declared at his afternoon visit to her that Hannah was "his" baby.
Monday 2 July 2012
Breathing
Hannah is now breathing on her own most of the time, with the respirator just kicking in when she decides to take a short break. Still waiting to hear when they will decide to close her chest again. Otherwise She has had another quiet day.
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