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.

Big Day

Tomorrow at 8am Hannah has her first operation. Of the 2 possible choices of ops, she will have the smaller one, called the hybrid procedure. This is still an open heart surgery, but a lot less complicated than the Norwood. This means that the second op at 3-5mths will be a much larger op, but the advantage is that she will be bigger & stronger by that stage.

It's a girl

Give thanks to the Lord, for He is good; His love endures forever. Psalm 107:1

It is with great happiness & thankfulness to God that we announce the safe arrival of Hannah Ruth Nygaard. Born the 11th June at 5:09pm, weighing 3120g & measuring 51cm long.

She is dong well & a bit better than expected. Joshua absolutely adores her & can't wait until she can play trains with him!

Mum & Dad are also doing well. It was a short labour, lasting only 4.5hrs from when they broke my waters until she came out, with no other intervention necessary to get things going.

Will post a picture when work out how to get the Ipad to do it :-)

Not Long Now

We went for our last scan today. Nothing had changed since the last one & they were happy with all they saw, so we continue with the plan set out last time. This means that early Monday morning (7am) we will be heading up to Skejby to give birth to our little bundle. The exact method of inducing me has not been decided yet as it depends on how "ready" my body is for birth. They are however in no rush to get it over & done with & have told us that although we start the process on Monday it may be a day or so before anything starts to happen. Even then, as long as I & the baby are OK they will just let things progress at it's own pace. Apparently there is no extra risk or stress for the baby during labour due to the heart condition than a healthy baby. I am feeling a little more at peace with the whole induction situation now & am looking forward to meeting Baby Bob  & starting the next stage of this journey.

I also mentioned in my last post the concern I had as to the short time Joshua & my parents had to get to know each other. I am happy to report that they are getting on well & Joshua loves playing with them. So I thank you for your prayers in this matter. There is however a little bit of a problem with language. Although Joshua completely understands English 100% (& probably could talk it too), he will only talk Danish. This of course is causing a fair bit of frustration on both sides. Please pray that Joshua will realise his need to use English & that my parents will be able to figure out what he is trying to tell them.