Gideon day 44
22.30u
Gideon was happily doing a lot better today. We don't know what exactly it was yesterday, but he was a lot happier today. We had some moments of restlessness, but a lot less intense and less long. With now mostly more pleasant moments of being awake and sleeping more peacefully.
We also got the results of the cultures they took from Gideon's blood and urine, to see if there was an infection in his body, but nothing was found. So what exactly it is with his lungs they don't know, but probably a virus. Gideon was coughing and sneezing more today though so hopefully that's it and he can "sweat it out". Then at least there is something to work on so to speak. But the prospect is that he will stay on CPAP for the time being, and we have noticed that he needs it.
We also had the results of the 2nd kidney test. This showed that his kidneys are in fine condition and both work normally. But they do see that it takes too long for anything from the kidneys to get into the bladder. And that is probably also the reason for the dilated ureters between them. Acute it is not and it does not seem to be anything serious, but there will have to be a follow-up on this and possibly surgery to remove the obstruction that is apparently between them. But as mentioned compared to the current problem with the lungs etc, this is not prio and Gideon is otherwise peeing well.
For the rest, we realise more and more that it will probably be a while before we are home with Gideon. Christmas has come and gone and a lot has happened and been done, but a lot also still needs to be done. Also, I (Nathanael) need to start looking at whether and how I can pick up my work again because especially if it's going to take a bit longer, a way has to be found to be able to sing it out longer. Even though my head is not in the right place yet, "normal life" also has to find its place in this story. Because we simply have no idea how long this will last. It could be that with 2 weeks we might end up in a hospital closer to home, but even then we have to find a way to combine hospital and normal life.
All in all, it seems an impossible task, but we are more or less forced to go along with this. But it is also just impossible to live isolated for so long. Both practically and humanly, we find ourselves running into walls. Financially we just need to work and emotionally we just need to be "taken out of the situation" more, and at the same time we want to be with Gideon as much as possible. Between the walls of the hospital, you lose all sense of the outside world and of time. Days last long but are over so quickly. Need to be pulled out but not the space to get out. Work to do, but that also takes time. Let's see where to get that from... Pff....
13.15u
Didn't write a blog yesterday, in fact we had no energy left yesterday. It was a tough day. Gideon cried a lot, was overtired and could not be comforted by the nursing staff. Fortunately, as soon as we were there and he sat on our laps, things went well. But well, unfortunately we can't spend 24h/day in the ICU. So was this some kind of 'regulation day'?
Fortunately, things improved last night and today too is going well. From today onwards, Gideon can drink at the breast twice a day again, YES! How wonderful it is to be allowed and able to do such 'normal' things. And he is doing so well. Whereas before he had to recover a lot after each sip, he can now drink 3 sips in a row and then recover for a while. Handsome, isn't it?
To get a bit of an idea about CHD and newborn intensive care, you can this broadcast watching 'Intensive Care'. This was recorded at the Sophia hospital in Rotterdam.
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Messages 1 up to and including 9 out of a total of 9
Miranda from Veenhuizen (Almere)
Saturday, 05-01-13 16:45
Dear parents!
I can't begin to imagine what it means to spend all those weeks in hospital, having to pick up something of a working life again (how do you do it anyway) and then also hearing news on a regular basis that is well not eleven-threatening but still intense (back to ICU, kidneys).
Our longest zkh duration was 14 days isolated forthirza. We were pretty exhausted from it... No idea what feeling after five, six weeks, but that it is very tough I can assume so well!
I am starting to feel like I would like to do something.
Vwbwerk nathanael, have you discussed this,et the medical social work department? It may help to ask about this. Partly because of emotional exhaustion. I once worked in dei position and regularly negotiated more time with the employer, company doctor for people. A,le time goes on Gideon and then you try to pull the other person through, then you don't get to yourself.... Actually, there needs to be some space and time for yourself before the energy goes to work.
Strength.... X
Klaudia
Saturday, 05-01-13 12:41
Dear Nathanaël and Marieke. I watched the video but then it's all even more intense than I already thought it was. The picture you posted on the blog yesterday also speaks volumes. If there is anything I can do for you please let me know. For now keep praying for you of course. Lots of love and a big kiss X
Elza&Evert and Eliza
Saturday, 05-01-13 09:57
Good morning M&N and Gideon,
Another new day..What a tough time you guys are going through!
It is very understandable that you want to be with Gideon as much as possible. Taking care of your little man and being with him is something parents do not want to miss. But at the same time, you are also searching for the next step, because the world and the time around you is going fast indeed.
Peaceful day ahead.l
Sweet greetings and a hug from the 3 of us
Marijke from Leusden
saturday, 05-01-13 00:31
Dear Marieke Nathanael & Gideon,
How intense everything is, and yet there are many positive developments.
I continue to pray for you and trust our mighty Lord....liefs from Marijke.
Danielle from Amersfoort
friday, 04-01-13 17:32
Dear Nathanael and Marieke,
Pfff... What a days you have had and what a battle Gideon's body put up again. I am so glad he is surrounded by such good and kind parents and that there are good doctors nearby! Above all, I am thankful for our God who is with you to carry you through this time. I pray for recovery, healing and lots of happiness and health for next year. Let 2013 be the beginning of an otherwise wonderful family life!
Love Danielle
Richard Klomp from Hoogland
friday, 04-01-13 16:18
Dear treasures, I am immensely proud of you. We pray for you, love you and look forward with you to a breakthrough in a further upward trajectory.
Big hug,
Pap
Elza&Evert and Eliza
friday, 04-01-13 14:49
Dear treasures,
Finally a ray of hope for the three of you. We wish you lots of strength, energy and, above all, moments of rest. We admire your energy to be able and allowed to look after your little man. We pray that your brave little man will recover soon and that the feedings will also improve.
Kind regards from us and especially for Gideon many xxxx from Eliza
Esther from Hoogland
friday, 04-01-13 14:15
Hi dears, any results from the tests yet? Glad to hear that he's already on the mend. We look forward to seeing him and you guys. Big kiss
Liesbeth Krijtenburg
friday, 04-01-13 13:57
Hey Kanjers,
What wonderful people you are, really!!!
Giving such intensive care to your beautiful little man day in and day out. Super. Of course that's all you want, that's the beauty of being mum and dad. Being able and wanting to give everything for your child. Wonderful how that's laid into it!!!
But then also write a blog almost every day. Very clever! I'm happy with it, love to read along and therefore be at your side, but don't forget to rest yourself. Those moments you have to do nothing. Take a walk around the hospital, find some silence. Take that time! Before you know it, the day will have flown by :)
A big hug for you
Love Liesbeth