Thought for Today

Do we accept the circumstances that God places us in or do we continually seek an escape? In fact, do we do more than just accept our circumstances? Do we seek to see God's purpose in them, be open to the the lessons that He is teaching us, grow through them & come up the other side stronger?

I would rather be in God's pre-ordained valley than to be on the world’s mountain top. Mark 8:36 says, "What does it profit a man to gain the whole world and then lose his soul." Sure, it seems attractive to be living a life in which I didn't have a child with a heart defect, a life in which I didn't lose that child, but then that would not be the life that God purposed for me. I would not have learnt the lessons that I have. I would not have learnt to know God in a new & deeper way, nor learnt the things I did about Tom that have deepened & strengthened our relationship. Perhaps I would not have learnt to appreciate each day & the time I have. It has certainly put a whole new perspective on what is really important.

After thoughts

It is now over a month ago since Hannah died and even longer since I've shared my feeling here on the blog.

So here are my after thoughts...

The last 24 hours of Hannah's life was very special to me. Everything around Hannah's death just seemed liked it had been planned that way for a long time and it was like God telling me that He was in full control of everything.

As Ally wrote in her post on the 8th of August, Hannah suddenly got worse and the doctors told us that she would only have 5 to 10 minutes left, when her heart beat suddenly picked up and stabilised. I shall never forget the look on the surgeon's face that night, she was truly surprised and I'm sure that this was God's work.

The following day my family had planned to go to Djurs Sommerland (a big amusement park near Århus). My sister from Greenland and her family were in Denmark on a 2 weeks holiday and this was to be our family day together. Due to Hannah's condition, they all agreed to come and spend the day with us in Skejby instead. Everybody came during the morning and we had a bit of rest time after the long night while the doctors where looking into Hannah's chest again. I remember playing a game of table soccer with my brother and there was just a relaxed atmosphere, which looking back was kind of weird.

However, after lunch Ally and I went up to the ward to hear if there was any new development. The nurse seemed a bit stressed and didn't really want to talk and soon after the head doctor came and wanted to talk to us. She told us about the bleeding in the brain and that if it was confirmed Hannah would only have few hours left.

Half realising that this would be the end and half hoping for another miracle we just sat next to Hannah's cot. We then decided that if it was to be the end it would be nice to let the family get a chance to say goodbye, so we asked them all to come up to the ward.

When they came Hannah's blood pressure began to drop again and we then knew that it was time. Ally wanted to have Hannah in her lap and this was arranged. Slowly over the next half and hour to an hour her blood pressure and heart beat just slowly declined until we stopped the adrenaline and the respirator and all that was left was the blank screen, no beeeeeeep or anything just a feeling of peace.

My first question was....so, what now? It was all over. I guess this is the same feeling an athlete would have after having lost the last race in the Olympics...what now? I've been fighting to get this far, but lost...where do I go from here? It is a mixed feeling of relief and disappointment. The hard work is over, but we didn't get the results we wanted.

Anyway, the nurses where very helpful and our good friend Lars, who works as an undertaker, helped us in getting everything prepared for the funeral.

We quickly packed up everything at the Familiehus and came home the following day. The next couple of days where busy, with a baptism, and 70th birthday party and preparing the funeral, which got our minds off things for a while.

As Ally wrote the funeral was a good day for us. We kept is simple and had the joy of being with friends and family on a day where the sun was shining from a blue sky.

Almost a month later now and we are starting to get into a more normal routine. Ally's parents have gone back to Australia & we've had a mini holiday at a nice little quite place in the south part of Denmark. I've got one week of holiday left before I start back at work. But all the time we have had a peace and no big emotional breakdowns. I think the most upset I've been has been while sitting and writing this blog update and it's not so much a feeling sorrow but more an overwhelming gratitude of how God has cared for us and made everything give some sort of meaning. As I said at the funeral, Hannah has touch so many life around the world and if I could have the same impact I would die a happy man. A short life is not a meaningless life, we all come into the world with a purpose and have a role to fulfil. The question is if we see it, or do we hide away thinking we a worthless?

The other question that I have is...why us? Did we do anything bad to deserve this, or are we extra spiritual so that we can handle it better than others? I think the answer to both is No!. I don't believe God would punish people is this way no matter what we have done. Yes, our wrong doings have consequences and can lead us into trouble, but a thing like this, where you have no choice is not part of God's way of disciplining.
You who have followed the blog from the beginning will know that one of the biggest fights that I had was this question..."Does it make a difference being a Christian?". My faith in God was nothing special, yes I've done alot of "Christian" things, have studied many "Christian" subjects, I have a great knowledge of who God is, but I didn't have a personal understanding of how God acts.

Looking back over the time I can say with confidence, yes, it does make a difference being a Christian, if being a Christian means trusting in a almighty and loving God who is involved in your life. A God who reaches out to you when you're down and hugs you. Now it is not just a theological knowledge, but I can say as the blind man. "I may not fully know who this Jesus of Nazareth is, but one thing I do know, I was blind and now I see". I may not fully understand God and how he acts, but I've felt his presence and I know He loves me.

Life keeps going on and I'm sure this will not be the last storm on the way. Maybe the next time will be a hurricane and this was just to prepare us. Maybe the fire will take more than the storm. No matter what, we know that God will walk with us.

Now we will enjoy the good times and rejoice in all the blessings which God gives and keep praising him.

Catching Up

If you have been subscribing to this blog & getting notifications of new posts you will notice a few new ones popping up. These are posts from around Hannah's death & funeral that I wrote drafts for, but never posted due to technical difficulties with the Ipad. Because I was also keeping this blog as a record of our journey for myself, I have back dated the posts to the days they refer to.

Where Are The Feelings?

Since the Sunday after Hannah died I have had no great feelings of sadness. I feel numb. Often it doesn't even feel like I had a daughter. It's like Hannah is just a baby we met while on holidays. I'm actually more upset that I'm not grieving more & am just getting on with life. I don't want to forget her. Is this God giving us an unexplainable peace & strength? Is it because I have accepted that it was God's will? 

I really struggled in the immediate days after her death with questions of "did we do the right thing?", "was a mistake made by the drs?", "what if....?". The big one was "Why would God so obviously perform a miricle & bring her back to life, only to take her the next evening?". But the answer I believe He has given to me is that He was showing me & most likely the Dr that He was capable of doing it if it was His will, but it wasn't. I've accepted this & am at peace with it. 

A Father's Speech

Here is Tom's speech from Hannah's funeral.

I sat down the day before yesterday and tried to write down what I wanted to say today. When I had filled 3 A4 pages I thought it was getting a little too long. The last 9 weeks have been very eventful and emotional and there are many things that link together and only make sense in the larger context.

Today we are together to commemorate Hannah, and Ally has talked about some of the things that we will remember her for. Despite her short life we have many memories that we cannot just forget. We have been with her ​​when she was all right and was smiling. We were there when it went bad and she lay crying. We have seen God do miracles, so even the doctors stood speechless. We were there when God took her soul home.

I have decided to put my focus a little different. Because the question I think we are all left with is, "why?" It's probably a question that we will never get a full answer for, but here are some thoughts that have helped me to see things in a slightly larger perspective.

As Christians, we believe in an omnipotent God who has everything under control, and in a loving God who wish us the best. It is these two characters of God that has helped me the most in recent times. It may sound strange so let me elaborate a little bit.

We read before from Psalm 139:

For you created my inmost being;

you knit me together  in my mother’s womb.
I praise you because I am fearfully and wonderfully made;
your works are wonderful,
I know that full well.

This means that God created Hannah while she was still a fetus. He knew her heart defect and allowed her to be born with this. Although I do not understand why, it has kept me up to know that God had a plan for Hannah and that nothing that has happened over the last 9 weeks, has been random. Especially Hannah's last day showed it maybe the best. You can not plan to have most of your  family gathered around you when you will die, but that’s what Hannah had, and that showed me God's timing in a unique way.

At the same time Hannah in her short life has affected more people than many people have done in a long life. If I could influence just half as many in the rest of my life, I'd die a happy man.

Yet perhaps you ask, "How can a loving God allow all this, could it not be done differently?

Yes, perhaps, but here it is important to understand that God's love does not consist in that we always have it good and never have  problems. We live in a fallen world where death and transience is a natural part of life and as Christians we cannot expect that we won’t have our share of the pain. No, God love is that He has given us eternal life!

For God so loved the world that He gave His only begotten Son, that whosoever believeth in him should not perish, but have everlasting life.

Our life here on earth can be short or long, but at some point we all go the same way. The question is whether it is to eternal damnation or eternal life. We know that Hannah with her Creator and has eternal life. We know that one day we will be together with her ​​again, if we believe in God's Son Jesus Christ. I know without a doubt that Hannah's greatest wish would be to see as many of you again on the other side and together praise an almighty and loving God.

A Mother's Speech

This is the speech I made at Hannah's funeral.

When I sit & look back over the 2 short months of Hannah’s life my mind doesn’t immediately go to the hard times, the pain & the suffering. It goes to the good times, the times when she smiled, when I held her, when I got to see her personality & when she opened her big brown eyes & looked at me with recognition. My biggest wish today is that you too could have had the chance to meet her & get to know her. Today I would like to tell you about my precious little girl.

She had such big brown eyes & such long fingers & feet.

She loved grasping hold of my finger & having her head stroked. There were many times when she was upset & the only way to settle her was to put my finger in her hand, my other hand on her head & sing to her. She loved music & being sung to as well.

She was not all that fussed on being washed, but absolutely LOVED when I massaged the moisturizing cream into her legs & feet afterwards. She would stop crying & completely relax. The other time she would completely relax was in my arms. The first time I held her she was all upset while the were getting her ready & moving her, then as soon as they put her in my arms she looked up at me, gave a contented sigh & snuggled into my chest. The nurses were always commenting on how Hannah’s vital signs would stabilize when she was with me.

Hannah was a very determined little girl. She had her own plan & schedule & did not like being rushed. As long as you took things quietly & slowly things were usually fine. Because Hannah was not able to take anything orally she would regularly have to have her mouth cleaned with a wet swab to keep it fresh & moist. This was something that Hannah DID NOT like. She would pull her mouth tightly shut in a very determined manner & it took quite a bit of coaxing to get her to open it again. One other thing she hated was having a dirty nappy. It didn’t matter if it was only a tiny little bit, she would cry until you changed it.

Hannah was a special little girl & our lives will never be the same. Our prayer from the very start of this journey was that God would use her life to bring glory to Him & we believe He has done that. While it's hard to understand why she had to go after fighting so long & hard, & seeing God answer so many of our prayers, we believe there is a purpose. May we never forget the lessons we have learnt.

The Funeral

I don't know what I expected the funeral to be like, but it certainly didn't end up the way I expected. I thought seeing the coffin & seeing it lowered into the ground may have been hard, but it wasn't. I was expecting to have to explain things to Joshua, but he didn't ask. He just quietly took things in & played with his cousins. He didn't ask what the coffin was or what was in it. He was interested to look down after the coffin had been put in the ground, but he didn't ask why.

It was a very peaceful day & the weather was perfect. This was something I had been praying for. I wanted it to be a sunny day, not rainy & dreary. One thing both Tom & I had said was that we wanted the day to be a celebration of her life, not a mourning of her death. In holding with this I placed the bears she had had with her while in hospital in front of the coffin.

We held a short service at a old, quaint little chapel in Varde & then proceded out to Janderup Cemetry where we sang a hymn & the coffin was lowered in the ground. Then all  were invited back to our house for a light lunch.

It seems our car was a little overwhelmed with the day & when we hopped in it to drive from the chapel to the cemetry it just would not start. So we quickly scrambled into a couple of other cars where there was place.

Safe in the Arms of Jesus

Thursday afternoon Hannah went to be with Jesus where she is free from pain & suffering, in a brand new perfect body. She will be sorely missed.  <br>
 <br>After coming back from death's door on Wednesday night & remaining fairly stable over night, they decided to open up her chest again a bit & see if they could find out why the stuff going into the CVC seemed to be coming straight out the drain. They found a small hole in one of the suture lines from the op & repaired it. However they then noticed that her pupils were uneven sizes & a scan showed that she had suffered a massive bleed in the brain. There was nothing more that could be done for her & it was just basically the medicine & machines keeping her alive. So the decision was made to stop treatment & let her peacefully pass away. <br>
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It was all very calm and peaceful. I got to hold her during the process, surrounded by all our family. We had the CD "Hidden in my Heart" playing & as she took her last breaths, we switched to the song "Holding You" by Matt Hammitt. After she has gone a few of Tom's family prayed & a couple of people spontaniously started singing a couple of hymns. Then all our family left & Tom & I got to sit alone with her. We also got to wash her & dress her after they had removed all the drain etc & closed up her wounds. Then I got to hold her one last time & move about the room freely. Although she was dead & it really was more like holding a doll, I was so glad to be able to do it. <br>
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Joshua was there through it all & was quite affected. He could see everyone was upset, but couldn't understand why. He didn't know what to do or where to go. It also didn't help that he was quite tired. A couple of times he climbed up on my lap with Hannah, but didn't stay there very long. Eventually he settled & fell asleep in his cousin Daniel's lap. Although it was perhaps quite traumatic for him we felt it was important he was there so that it wasn't like Hannah had just disappeared & that when he does ask about her we can refer back to it & explain. We of course tried to explain it to him in simple terms at the time, but we are not sure exactly how much he understands. Despite the fact that he went  to see Hannah everyday & was quite attached to her, he has not mentioned her once yet since her death. We wonder if he sees our time in Skejby as being on holiday & Hannah as part of that.  So now we are home...<br>
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Not Good

Don't have the energy to go into detail now, but just want to let those of you who are following us here know the latest. <br>
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At 7pm last night we were called to the ward & told that Hannah had taken a turn for the worse & was not responding to any treatment. There was nothing more they could do for her & she would die in the next few minutes. She has rallied & is holding on by a thin thread. Only a miricle will get her through, her body is tired.

A Long Day

Today was a LONG day. I didn't have to meet up at gyn ward til 10am, so went up to have a quick visit with Hannah first. She was happy & had her eyes open, I think she even gave me a smile. Then I went up to the gyn ward where I had to wait until 1pm before going into theatre (I had been fasting since 11pm the previous night & hadn't had anything to drink since 8am). The procedure it's self didn't take that long & I was discharged by 1630. 

As we didn't know when I'd be out, nothing had been arranged for dinner, so we decided to have it up at the hospital canteen. While we were on way up to ward after dinner we got a phonecall that Hannah wasn't doing well. We didn't get too worried as she often went up & down, but that changed when we walked into the room & saw the faces of the drs. We were told her BP & HR had dropped suddenly & was not responding to treatment. They said she had been given the maximum amount of adrenaline that they could give & she only had minutes to live. We began to fervently pray to God that he would intervene. Suddenly without explaination her heart rate stopped falling & started picking up again & her BP started coming up again. The drs were speechless. 

Having had that scare though we were unwilling to leave her & so spent the night up at the hospital with her. Tom had rung his parents & they had driven up straight away. We had called my parents to also come up with Joshua when told she didn't have long. The nurses were wonderful. They organised for a couple of beds to be brought up & put in the empty room next door to Hannah's & we had a couple of recliner chairs in her room as well. They organised for jugs of coffee, tea & juice to have in the room. They did all they could to accomodate us & make us as comfortable as possible. Hannah stayed stabile, though on a HUGE dose of cardiac meds, the whole night.

No News, Good News

Been a few days since I posted here. But things have been going well, just no great big chamges to report. Hannah has been stable the last 2 days (had a little trouble with plumeting BP Friday night after they partially closed her chest). They have been able to slowly reduce all her cardic support meds & hopefully today they will be able to completely close her chest. She is still sedated, but I'm hoping they'll wean her off that soon too. <br>
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In other news, it will be me (Alison) heading to theatre on Wednesday. I am still bleeding after the birth & they now think there is still a little placenta left behind. So Wednesday morning I go in for an D&C.

Wobbly, But Good

Hannah continues to be a little wobbly with her BP dropping quite low now & then, but overall she is doing quite well. They were able to already close her chest a little today. Both Tom & I think she look a little better today. She is still sedated & paralysed, but only just. Her arterial line stopped working last night & it took them nearly 2hrs to get a new one in. This is an important line as it allows them to constantly measure her blood pressure & react quickly.

Back to Square One

Although the operation went well & so far it seems that her heart & circulation are better than they were, to look at her it just feels like we are back where we were after the first op & we've lost all that ground we had gained. Her chest is sitting open again & she's heavily sedated & paraylysed, she has 3 drains coming out of her & 3 different IV sites with six different infusions, plus she's still on dialysis. But so far she has been stable & we pray that this will continue.

So details of the operation...

Things went smoothly & as planned with no big surprises. She was stable under the whole procedure & as mentioned last night, although they had to take their time (hence the reason it took so long to get her back to the ward), she was able to come off the artifical heart pump & her own heart is coping well with doing the work all on it's own.

It was discovered when they came to reapir the valve that Hannah was actually born with a malformed tricuspid valve, so it is possible that it would have malfunctioned on it's own anyway despite the operation. They were able to repair it & although it is not completely sealing properly the leaking has been reduced considerably. I am still to find out if more will need to be done in the future or what.

As we had expected, when they came to join the Superior Vena Cava to the Pulmonary Artery they were still the size of a newborns & had therefore too high of a pressure in them, so a BT shunt was placed instead. This means that she will have to have another operation in 3-4mths time to do the original procedure of joining the Superior Vena Carva to the Pulmonary Artery.

Now begins the road to recovery again. Hopefully this time it will be less rocky, faster & not come to a halt. Thank you once again for all your prayers & words of encouragement.

Back on the Ward

So she finally came back to the ward at 10pm & we have just been up to see her. She has been stable up until now, but became slightly unstable the last hour or so. They have been able to stabilise her again, so we just pray she continues to have a stable night. The next 24hrs are very crucial.

I will write tomorrow with more details, but one praise point right now is that she was able to come off the artifical heart pump before coming back to the ward.

One Day At A Time

One thing we have learnt with Hannah's situation is to take one day at a time. Last night we were told that it was planned to do the operation on Thursday, but this morning at 8:30am we recieved a phone call to say that they had decided to do it today & were taking her into theatre in an hour. Wow! Ok! So we quickly got dressed, as we had just got out of bed, & hurried up to the ward to see her one last time. She was still awake, though slightly groggy, & we were able to sit with her until they took her to theatre at 10am. <br>
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After we came back to the house & had some breakfast we headed off to the shopping centre for the day, returning at 3pm. They rang at 6pm to say that the operation was finished & it had gone well. We are just waiting now for her to return to the ward so that we can come up & see her.

Postponed

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.

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

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.

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.

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.

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.

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.

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.

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

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.

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.

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.

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. 

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

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

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.

Slowly Forward

Slowly over the last few days the drs have been closing the gap in Hannah's breastbone. They are hopeful that perhaps tomorrow they will be able to close it completely. The reason for not closing it in one go is that the pressure on her heart would be too much, so they are doing it gradually so the heart can adjust & also it is easier to take a step back if needed.

Her kidneys are still not working. They are going to try again today to see if they can kick start them into working. The drs are still confident that when everything else sorts it self out & settles down that her kidneys will function again.

They have increased the amount of milk that she is recieving via the NG tube, she is up to 5mls now. However because of the dialysis fluid pushing on the stomach she has been bringing it back up. So yesterday when they closed her chest a bit, they also inserted a longer NG tube that deliverers the milk straight to her intestines. So far this seems to be working.

Since closing her a bit more yesterday she has not been leaking dialysis fluid, which is a big plus.

A Small Step Forward

Today we made a tiny step forward with the drs closing the hole in Hannah's chest a couple of cms. They also repositioned the drains. She continues to lose fluid slowly & her kidneys are producing a little urine.

Week two: ups and downs

I'm not going into all the details of what happened during the second week, but I'm feeling this is going to be one of the more philosophical posts.

The second week was all about the ups and down, or the two step forward and one step backward, as the doctors keep saying.

The questions that I keep asking is why and how long...two questions that the doctors cannot answer. In one sense I'm not scared that Hannah will die, as hard as it will be, I'll still know that we gave her a chance to live and that she will be in heaven with Jesus where it will be far better for her.
On the other hand, if God wants her to live and survive why does she have to go through all these things to get there, why did she have to crash on the operation table, why doesn't she loose the liquid so that the open holes can be stitched up, why does the dialysis fluid keep leaking, and so on. It is questions that no one can answer and all we can do is sit back, wait and pray.

So in all this is there a purpose?

I will always believe that somehow God is gloryfied through this! Whether this is by teaching me to trust him more, to touch the life of the many people that are following us through this, or something completely different. I don't know right now but I have the feeling that something much bigger than we can imagine is going on.
This then leads to another question...why me? Am I anything special? Am I any stronger than anyone else?

I talked with a family at the house we are staying at who have a 5 year old boy who has had his second cancerous tumor removed from the brain and is going through a 4 week chemo treatment where his is to be in isolation. The family are not Christians or anything but they had such a positive view on things. It just made me think about what it is that makes us, as Christians, different? Are we not all just going through life?

It is a hard question.
As Christians we of course have the assurance that we shall be in heaven with Christ when we die, and it gives us something to look forward to.
As Christians we know that "all things work for good".
As Christians we know that "as your days, so your strength will be".
As Christians we have all Gods promises
But is this what is keeping us going or are we relaying on the same strength as "normal" people?
Maybe this is where the real difference lies and maybe this is the answer to the whys.
Everyone can manage hard times as long as there is hope and as long as there is light at the end of the tunnel. I've seen that over this week, that when things were going forward the hope rose and so did the mood, but as soon has something happened the hope dropped and I was ready to give up and just wishing it was all over. This is our human strength. When things drag out, when hope of things turning to the good start to deminish, when the doctors start to get worried, this is where the unending supply of God's strength can kick in!
Am I at that point? Hmmm, not sure, sometimes I feel that I am still going in my own strength. So does this mean that I'm the one holding Hannah back from getting better? Maybe...but at the same time I'm starting to see that the longer it takes the more clear it becomes that God is protecting her, and that it is not just the doctors work alone (though they are doing the best they can) which has brought her through.

So all in all we hang on to God and trust in him. And as Daniel's friends said "no matter whether God is going to save us from the fire or not, we only worship the one and true God" so we say "no matter what happens, we know the one and true God loves us and we worship him alone"

Back on Track

Things are back to normal & on track again this morning. They now think the problem was that they pulled too much fluid off too quickly with the dialysis yesterday & that sent her haywire. So we are back on the weaker dialysis fluid & doing much better. Her blood results also showed that her white cell count had fallen, another good sign. She is still lightly sedated. No mention as yet of what they plan to do about the leaky valve.

The Quiet is Over

From the moment we came into Hannah's room this morning I had an uneasy feeling & sensed something wasn't quite right. She was much more awake & seemed to be distressed. Though all the obs at that stage were fine & apart from an elevated white blood count was elevated, indicating she had an infection somewhere. She had an episode of bringing up a copious amount of mucous mixed with what looked like milk. This was sent to pathology, but came back negative, as did the x-ray of her lungs. Late in the afternoon she had a sudden & rapid increase in her lactate level (up to 9, should be around 2). This put the drs into a panic & she was sedated again & given medication to lower her BP. Thankfully she responded to treatment & by 11:30pm (when we went to bed) she was well on the way to being stable again. However in investigating the reason for the increase in lactate they discovered that her Pulmonary valve was leaking. This they are going to review in the morning & decide the course of action to take. They also discovered some tissue protruding out of the site of her old dialysis catheter site, so she had a minor op to place it in again.

Unfortunately our night did not end at 11:30pm, as when we got back to our room we discovered Joshua was still wide awake & waiting for us. This was in part due to the fact that he had slept til 9:30am this morning & then slept the whole 2hr journey from Varde back to Århus, & partly due to the fact that he had become insecure about us leaving again. It took 1/2hr or more to get him to settle to sleep & in the end I had to lie in bed with him.

We also had the pleasure of a visit from Tom's brother & sister & families. This was a nice break & stress relief, not to mention the absolutely delicious watermelon & fresh baked rolls they brought with them.

More of the Same

Again today we just continues removing fluid with the dialysis. Hannah continues to be stable & slowly & steadily improve It's now visable that Hannah has lost more fluid and we can see her fine little nose and her eyes are not as puffed. She is opening her eyes more now & responding to our voices & touch. There are still problems with the dialysis fluid going everywhere so we continue to pray that her kidneys will start functioning.

Continuing forward

Another quiet day of slow but steady improvement. Dialysis continues as it has, with more fluid coming away. It continues to leak out everywhere & they went into her chest again & tried to seal a few more of the holes, but they said there are just so many that it is impossible to stop it. So we must pray that her kidneys start fully functioning soon so that the dialysis is no longer needed, as all the leaking fluid poses a big risk of infection.

Family wise, Joshua & my parents drove back home to Varde for the weekend. This has allowed Tom & I to spend some time together, just the 2 of us, which has been good. It also gives my parents a small break as Joshua is staying with Tom's parents while there.

Dads outlet (the first week)

I'll give my side of the last week or so. Mainly just as an outlet so don't feel you need to read this. I may be more honest that what some people would like but hope it will just help to see what we are going through.

Monday 11th.
When we left home to drive to Skejby I was grumpy. We were running late and hadn't slept much and I could feel the pressure of the unknown for the coming weeks we are there. When we got to the hospital (half an hour late) things were not much better. However after Ally got examined and it was desided that she was ready enough just to take the water things were looking better. Maybe this could be the easy ride...

7 hours later I was standig there ready to cut the umbilical. I remember thinking earlier that this was actually a terrible act. Knowking the condition of the baby cutting the umbilical was like cutting the main life support, without any help it would now die.

I followed the little girl to the intensive care where she was examined and her heart condition was confirmed. It was mixed feelings at that moment. She looked so healthy but God had not miraculously cured her on the way through the birth canal, and ahead was lying some critical operations. However, the healthy look gave the hope that she would handle the operations without major problems.

Tuesday 12th.
Everyone saying congratulation and were excited about the little girl. Still I was filled with mixed feelings. How can you say congratulation with a practically dying little girl. I know that's not the meaning but it just seemed so shallow.

Wedensday 13th.
The day of the first operation. We'd been told that they had chosen to perform a much simpler operation than normally would be done due to the good condition of her vessels. There was hope that this would go as planned, no major concerns. The spirit was high, though still with the knowledge that there was a risk. But of course God would keep her safe.

At three o'clock the call came: The operation had gone as planned, but right at the end our little girl (now called Hannah) had crashed for no known reason and they were going to put her on CPR.
Our spirit sank, maybe things where not to go as easy.
Three hours later we could see Hannah for the first time with tubes going in and out her little body. She looked better than I expected, but it was still hard.

Thursday 14th.
Hannah seemed to have recovered from the heart attack and her heart was ready to come off the machine. This took place in the afternoon and it looked like it was a success. Things where starting to pick up.
However, one of the side effect of being on CPR is that there is a risk of fluid being pumped into the tissue in the skin due to pressure and the thin blood. This was starting to show and when the doctors decided to try and remove some Hannah lost blood preesure. This showed us how fragile she was, one little change was enough to put her out of balance. The same happened later in the night, and for the first time I think we realised that there was a large risk of loosing her. I was ready to up and let her go. The story of David when his son with Betshebath was sick came in to my mind. For days David was praying and fasting for God to save his son, but when the son died he got up and ate. I was ready to do the same. Get up go home and get on with our lives.

Friday 15th.
Hannah was a lot more stable but had puffed up like a michelin man. Her kidneys had not started to work and the leaking into the tissue was worse. The doctor was fiddeling as they called it to keep the balance. But overall it looked like it was going in the right direction.
Most of my familly came to visit which was good. Joshua had a good time playing with his cousins. After dinner we were discussing to go up to see Hannah and whether or not to take Jousha with us. Shortly after I see my mother in law pulling up with Joshua kicking and screaming and I snapped and got mad at her and pulled Joshua out of her arms. "why did she have to stir up a riot before we had figured things out calmly?"
However, this didn't help an already tense relationship between Jousha and my inlaws. For a while this filled my mind as things with Hannah were stable.

Saturday and Sunday
There was little change in Hannahs condition. Due to the kidneys being out of function Hannah was on diasysis which though leaking seemed to be working satifactory.
Joshua went to the zoo with my parrent and had a change of scenery, which was good. Beside the problem with the fluid Hannah was getting more and more stable and the hope was rising.

Monday 18th
No significant change in condition. Which is good and bad. The main problem is that the fluid in her body is not reducing and the dialysis fluid is now leaking through every hole in her little body. Doctors don't seems to know what to do and nothing seems to be working

A Good Day

Things continue to progress slowly in a positive direction. The dialysis is slowly drawing fluid off & her blood results are slowly coming down to normal levels. She is off her muscle relaxing medication & awake & moving. This is wonderful to see & she even managed to partly open one eye & take a peek at me. There is still a lot of fluid round her eyes so it's quite hard for her to open them. She is also taking great delight in blowing bubbles from her mouth. She responds to touch & our voices.

As they were not planning on any procedures or that today, just concentrating on getting as much fluid off as possible, we were encouraged to get out away from the hospital for a bit. So after lunch we headed up Himmelbjerget & enjoyed some time in the beautiful sunshine & a "proper" ice-cream.

A Flicker of Hope

Well as you can see from the previous post, we started today very down in spirits. The dialysis wasn't working cause it was just leaking out everywhere & her blood results & vitals were starting to go all out of whack. Thankfully they decided to finally do something about the dialysis & after trying a few different simple fix ideas without success, they went into her chest again. There they found the souce of the leak was around where the pacemaker electrodes were attached (it's there just "in case" & up til now hasn't needed it). So they fixed these & inserted a new dialysis catheter & things started to pick up. They dialysis started to remove some of the excess fluid & her blood results started to come back to normal. We breathed a huge sigh of relief & went to bed hopeful that all would be ok. It's hard to get my hopes up too much though as everytime we seem to take a step forward something else goes wrong & we go 2 steps back, so part of me is just waiting for the next set back. But we continue to pray & trust that God is in control & His purpose is being forfilled. I had the thought the other day that even if Hannah doesn't make it, perhaps God's purpose was to have us her to talk to certain people. We had a couple of good chats with the nurses looking after Hannah today in regards to our beliefs & church etc. We have also seen God working in the lives of some of our friends & aquaintances through our situation.

Hanging by a Thread

This is so hard! Hannah doesn't seem to be making any progress & little things keep going wrong. We wonder if we are doing the right thing continuing with treatment or if it would be kinder to just let her go. The drs don't seem to have given up hope yet, but they have also said that it could go either way. I'm not ready to give up hope yet, but then I don't know if I ever will be. Part of me has a confidence that God will bring her through this, & part of me feels at some stage He will take her.

One of the most frustrating things of all this is that the heart operation was a complete success & in that area everything is fine & working perfectly.

Up & Down

Hannah's condition has been swinging up & down the last 24hrs, & with it our emotions. She continues to leak dialysis fluid from all the various wounds. Her lactate levels have been a bit high, which indicates that some parts of her body are not recieving the blood flow, therefore O2, that they require. This evening her BP has also dropped again, though quickly stabilised again with medication. A few of her IV lines have also failed & had to be replaced. They are fast running out of places to insert an IV line & it is becoming increasingly difficult to insert them. Please pray that she quickly stabilises again without any further deteriation. The drs have said that she's not out of danger yet & it could still go either way as to whether she survives or not. There is now also a slight concern that the muscles in her legs are compressed & they may need to place incisions to open them up & allow the muscles room.

Leaky

You know the saying "what goes up, must come down". Well it is also true that "what goes in, must come out". As mentioned in yesterday's post, Hannah is on peritoneal dialysis to try & remove some of the fluid build up she has. The first catheter they put in kept leaking the dialysis fluid as it went in, so they decided in the end that this was creating too high of an infection risk & they were not able to attain optimal dialysis & inserted a new catheter. This resolved the problem of the fluid leaking before it went in, but now the dialysis fluid keeps seeping out of the old wound site. As a result she is not getting much peace & quiet as they are having to change the bedding & dressings frequently.

They attempted to stimulate her kidneys to work without much success. I feel she is getting puffier again in the face, but the records show she is actually losing fluid, so it just must be redistributing a bit.

Otherwise everything else is progressing slowly, but surely in the right direction.

Quiet & Stable

Today was a nice quiet day with no crisis & a slow progression forward. Hannah has been completely stable. She still has quite a bit of fluid in her body that they are trying to get rid of, but it is slowly disappearing. Drs are pleased with her progress, from what they can see, heart is working well & she is starting to try to breath more on her own. She is also requiring less O2. Her kidneys are still not working so dialysis continues.

It has been nice to have a break from the stress of the last few days & be able to spend a little more time with Joshua & even pop out for an hour to do some shopping. Now Hannah is stable for the time being, I am also able to be a bit more involved in her care, doing the eye & mouth care.

Balance

The catch word for today seems to be "balance". Hannah has a huge amount of fluid in her body & is so swollen that she looks like a plastic doll. She is now on dislysis to try & remove some of the fluid but it is a fine balance between the amount of fluid she gets in & the amount of fluid they drain off, so as to not cause her blood pressure to drop too much. Then there are all the different medications she is on (9 different IV pumps, plus those they are just injecting), that are constantly being adjusted to find just the exact right amount required. Thankfully it seems that things are coming into balance. After struggling most of the day with little responce to treatment, Hannah's blood pressure has now come up & stablised, & the amount of fluid in her tissues has reduced.

On the personal life front there is also a lot of balancing to be done. A balance between time spent with Hannah & time with Joshua. The need to be with Hannah & spend as much time with her as possible, but also needing to take care of ourselves so that we don't get too run down. Today I reached breaking point emotionally. It all just became too much & I wanted to just give up & curl up in a ball, shutting the world out. Hannah was just so swollen & it just didn't look like she was there. I wondered if she had already gone & it was just the machines keeping her "alive".

What a Night

After posting the previous blog at 8pm last night Hannah took a turn for the worst. Under a routine ultrasound they found a colloection of fluid in her adominal cavity & wanted to drain it off as this causes undue pressure on the heart & lungs. However while inserting the drain she suddenly dropped in blood pressure, her heartrate skyrocketed & O2sats went out of wack. They managed to get her stablised again, only for her to do it again at 11pm (just as we had gone to bed). This time they decidéd to look into her chest (which is still open at the moment, just covered by gauze & a plastic dressing) & see if there were any clots or bleeding. This took 2hrs of nerve racking waiting in the parent room, but no bleeding or clots were found. They did however decide that too much blood is going to the lungs & not enough to the body, so they adjusted the bands they had placed around the pulmonary arteries. Finally at 3:45am she was stable enough that we could head back down to our room & crawl into our much longed after bed & sleep.

Another Stressful Day

Today has been another emotionally draining day, but with a good ending. Hannah is now off life support, after a nerve racking 3.5hr wait, & doing well under the circumstances. She is pretty much where we expected her to be after the op yesterday, so we're back on track. She is still sedated & on a respirator, so no cuddles, but we are allowed to stroke her & help with some of the daily care (nappy change, bathing etc).

Other positive news of the day:

* My milk supply has started to come * We have finally managed to get a room in the equivalent to Ronald McDonald House

Emotional Rollercoaster

Well! What a day! Today was the day of Hammah's first op. Tom & I headed up to the ward at 7am to spend an hour with Hannah before she was taken into theatre. She was sleeping the whole time, but I got to sit & hold her most of that hour. They ended up coming to take her at 8:30am & then we headed off to spend the day with Joshua until they rang to say it was finsihed. I left with a real peace that all would be well, we had commotted her to God's hands & I enjoyed spending undivide attention with Joshua.

Some time between 1 & 2pm we got a call to say that the procedure had gone well, but she had crashed & they were currently doing heart massage on her & going to connect her to life support. Then began the waiting game, with regular (2hrly) updates, until 6:30pm, when we finally were allowed to go up to the ward & see her & touch her. She is very stable, & showing some positive signs. She is still as beautiful & precious as ever despite all the tubes & lines. The plan is to just observe her overnight & then all going well try & take her off the machine tomorrow. Your continued prayers would be appreciated.