Wednesday, June 6th
Things are going well with June and she is developing great. But, she has been sick for a week, a bad cold with fever. She can not eat normally and we had to take her to the hospital in order to get her checked and to make sure she did not loose fluid. We stayed for two days/nights. She is now doing better now and is home again. We have all been ill, cold with fever, so we have been feeling very tired the last week. Luckily, we seem to be recovering now.
It was scary to return to the hospital with her. She looked so weak. The emergency doctor very soon decided that we should stay and we actually got our old room back ! Since both Christina and I also had a cold, the three of us where isolated in our room. We where not allowed to move around... Luckily, the room is nice and the staff are wonderful and caring. This makes it easier. Now we hope we do not need to go back again...
Wednesday, May 23rd
June has had her first real re-visit to where she spent her 93 first days... She has developed very well. The doctors are very satisfied. We still run tests on her blood, and hope to find out what caused her being ill, but we become less and less confident that we will ever find out. Still, the doctors do not give up yet.
Having June at home is great joy. Although she does not want to sit/lay still, we enjoy it very much. When awake, whe have to walk around with her all the time, otherwise she gets upset. We believe it has to do with her stomache, that is not fully developed yet, and a stress symptome from the time in the hospital. We slowly try to get her to sleep more than one hour at the time in her bed...
She has gained weight and now weighs 3908g... She is looking like a normal baby and is already starting to wear size 62 !! We´ll have some more pictures up soon..
Monday, May 17th
Today we celebrated Junes 4th birthday.... Well, when it comes to months. This means that she is, if we correct her age, 5 weeks old. She weighs incredible 3750g and is now 53 cm tall... We are so happy and proud of her. Also, we've been back at the hospital and checked alot on her. Everything developes fine !!! Feels so good !!!! She eats, pups, cries and laughes like a normal baby at her age (5 weeks)...
Monday, May 6th
Friends, sorry for not having updated... The first time at home has been somewhat different to what we expected. It has been very nice, but very tiring. The first days I feel we slept more than June... I believe things are catching up and we both feel very tired and we are happy that we have eachother in order to cope with everything. We have had so many things to do...
June is doing just great. Everything is going fine, and last Friday (4th) we where finally released from the hospital. Now we stand on our own... But with a very good "follow up" scheeme for the next months / years to come.
June is growing very quickly and she has grown out of some of her clothes already. She can now wear 50-56 (normal size for up to 3 months). Now we do not have to use the premiee-clothes any more. They will be used for her dolls in the future... She is now about 52 cm tall, and weighs 3300g.
The plan for this website is to rebuild it. Many parents, who come in the same situation that we did, look for support and want to read about other parents and how they cooped with the situation. We will make this site available for them after having rebuilt it. We will also continue to post news about June on the site, but not as frequent as before.
Junes Christening will take place on June 16th in Stockholm. Her full name will be June Fredrika Marie Bergland. We look forward to that day with great joy !
Again, we will soon update with some pictures from Junes first time at home...Please let me know if you want a reminder when it is done, by sending me a e-mail. Just klick on our names, Christina and Sven
Tuesday, April 24th
WE ARE HOME !!!! AFTER HAVING SPENT 93 DAYS IN HOSPITAL, WE ARE FINALLY HOME !!!
Thursday, April 19th
Maybe tomorrow, maybe... Today June's blood value had fallen again, and she is getting another infusion. Thanks again all of you blood donors out there. We are now going into another stage of her treatment, and even if we will have to return to the hospital many times the following months for blood tests and other things, we might be able to live at home... Read all about it this week-end.
Wednesday, April 18th
Maybe, just maybe, we will be able to bring June home this week-end. It is up to her, how much she can eat by herself. We disconnected her today from the nutrition through the needle (I do not know the proper English word) and if she continues to eat by herself, then... keep your fingers crossed. We want to go home, even if we like it here with all the nice people, it is enough now !
Have a look at the weight curve below.. Looking good. She really started to grow, but this is very much because she gets extra nutrition/fat now..
Monday, April 16th
What a night. Around midnight I discovered that June's right leg was swollen. This is where the needle was situated. (The needle through which she gets the nutrition now). I called for the nurse... She looked, called for another nurse who then again called for a doctor. It is good to know that there is always people awake at the hospital. It was decided to remove the needle and replace it. Last time it took four different people to get it there, and many hours of work. I about started to cry. Not again. It is painful for her and it is not easy to sit next to her seeing her cry, cry, cry... But, it had to be done.
We went down to the operation unit in the middle of the night. This time it went smoother. The second person managed and we "only" had to punch her three times. Again I was close to tears. She has to go through so much pain. It is difficult to punch her and it takes much concentration from the nurses/doctors. Later in the morning, her leg looked better and we hope it will continue to improve quickly.
Sunday, April 15th
Her stomache ache is better, we took of the extra oxygen. Keep your fingers crossed. Also, read above, starting with the text in bold.
Today (April 15th) I went for a long walk. Birds singing, flowers starting to awake after the winter, sunshine, Easter... It is difficult to believe that three months have passed sinced we gave birht to June. Three long months, a quarter of a year. All this time in hospital. Worries, happines, pain and joy. It has been a very special time. We are happy that June has recovered and is now almost ready for going home. She will continue to need extra care and we have a time ahead, when we will have to adjust to taking care of June our selves. She feels so fragile. We will continue to get support from the hospital for some time, but we really hope we can move home within a week (or two).
Christina and I are lucky to have You. Thank you for your support through this difficult time. Many are those times when we have hugged eachother and spoken about your support. We have received many many e-mails, letters, gifts and greetings through our website. We decided early to use this media to be able to keep you updated.We are so fortunate to have friends and family all over the world and this media is so easy to use. We have received greetings from Papa New Guineea, Australia, Asia, South America, the US, most countries in Europe, from friends, family and from people we do not know. Every time we feel so happy.
June was a gift. She was saved by her mum's intuition that something was wrong just before it was to late, and by the fantastic skills of the doctors who where present. She recovered and survived. The fact that she was saved with such a low blood value has made her famous her at the hospital. No one have ever seen anything like it, and she has already been a topic at seminars here. All new doctors we meet say they know her already from having heard about her.
All of this makes her special and we are so grateful that you wanted to share her first time with us. Tomorrow (16th of April) we hope to be able to take her for her first walk.
Yesterday we received the greeting above from Claudia, a colleague of mine from EMDS, working in Moscow. Reading about her son's night prayer late last night, I had to wake up Christina and tell her. Thank you Maximiliam and everyone else who keeps June in your prayers. Her guardian Angel Anette is watching her in her bed. This Angel came all the way from the US. Thank you Karin.
Saturday, April 14th
The controls of her stomache have continued. Since it was difficoult for June to eat, we started to check her up very good. We learn more and more about how it is to have a premature child every day. It is not unusal that they get problems with theirs stomaches as they are not fully developed. But, nevertheless, it is important to check up on her symptoms. The last days June has been awake crying most of the time. Christina and I considered if we could complain and bring her back in exchange for a new one, but the again, no :-) We love her more than anything and we will contiune to fight with her forever. She gets to eat about ten percent of what she usually eats, the rest she gets through "a hose". This needle fell of her, and it took many hours to get a new one back. One team tried, failed, another one tried and failed... Finally, she was brought down to the unit where they operate on children, one person failed, then, then finaly a doctor succeeded to set the needle right. What pain she had to go through... I sat by her and she (as any one would have done) cried the whole time.
Luckily, it seems like there is nothing wrong with her stomache and we will slowly give her more and more food. It was important to check up on her because if there had been something wrong, it would have been important to act quickly.
Wednesday, April 11th
June next to us, asleep. For the first time in many days she is actually sleeping well. We´ve had some troublesome days. Junes stomache has not been functioning well and she has had the drops in her pulse again. She also stopped breathing a few times. We have checked her lungs and stomache and it seems she has a lot of gas in her stomache. She gets swollen and the stomache pushes up on her lungs, hence influencing her breating. A few times we had to give her more extra oxygen.
Today she could not eat. She would only swallow very little, then just refuse to swallow. In more than 12 hours, she only got about 15% of what she should eat. It was a very exhausting day for us, starting of with eye examination (everything ok), then June not eating. Talks with nurses/doctors. What is wrong ? Last night we x-rayed her lungs, nothing wrong. Today we x-rayed her stomache. We havent heard the actual result yet, but nothing seems to be visible wrong. We helped her to get some gases out/ and some pup, by flushing her. Old, bad smelling stuff came out, and she now seems more reliefed. We where not allowed to feed her while waiting for all results today, so she has been hungry, in combination with not being able to swallow. - We heard her voice today. She has a temper !
As from now, we will change the mixture we put in her food (she gets Christinas milk still. I admire her how she can continue to produce milk under such extreem circumstances that she lives under. So do the doctors). This is an attempt to lessen the preasure on her stomache and to keep gases out.
Although we have left the intenvsve care unit, we are still in the best care of Astrid Lindgren Hospital. The unit we now stay in is very good and specialised in children under one year. They have all the experts here and there are no long waiting times if something nees to be done. It is fantastic and we feel very priviledged to have such good resources and nice/skilled people around us. We feel very safe. The Astrid Lindgren Hospital is a children hospital, where parents are very much involved in the care of their children. It is great for us !
We where hoping we would be able to come home before Eastern, but now we will celebrate it her. Eastern dinner at the hospital, jummy :-)
June continues to grow, 2585g today.
Sunday, April 8th
This is great. We start to feel like a family. Today all three of us laid on the bed for the first time. Like a family. For the first time only the three of us watching TV together... Imagine, after 12 weeks. June has stomache ache, but we comfort her with warm cloths and by holding her. She looks so much bigger now and we are happy about her 2410g.
Saturday, April 7th
Today June should have been born. She is now 40 weeks old ! Happy birthday !!
Friday morning, April 6th
No, we did not sleep much...
Thursday, April 5th
We have moved !!! We did not have to change hospitals, but we have moved out of the intensive care unit, where June has spent her first 12 weeks. We moved into another special unit, where babies are treated, and where we are able to take care of her by ourself, but with nurses outside the door if needed. It is very nice and great staff here as well. They all take good care of June and us. It is like a step between intensive care and going home.
Today, for the first time, we could pick her up from her bed, hold her, lay down on a bed and keep her for ourself. Almost like a real family !!! We are so happy ! She is back on some extra oxygen, but very little. Two steps forward, one step back... you know the game by now... Another thing, now we sleep in the same room as she ! For the first time. I wonder if we both will be awake the whole night, or if both of us are going to jump out of our beds as soon as an alarm goes of or as soon as she makes a noice?
Check out the new pictures of today !!
Wednesday, April 4th
Help, they turned of the extra oxygen today... will she make it without it, or do we have to turn it on again ?? I´m off for a doctors meeting now. Keep your fingers crossed. Hi, why not send June a greeting through her guest book. It will be a nice contribution to her baby album that we have started to make now. We´ll print all the greetings and save them for her.
Tuesday, April 3rd
June has really started to gain weight again. She has grown as much in the last couple of days as she grew in the last 4 weeks. She now eats every 4 hours and gets about 60ml every time. A large Swedish snaps !!!
We got June a baby sitter for the car. When we use the smallest settings possible, it is still to big. I think I will mix something stronger into her food...
Sunday, April 1st
June is coming home today, she has gained 2 kilos and can almost crawl.... April fool :-)
How I wish it was true. But, we keep on fighting. We have now been in the hospital for more than 11 weeks. We spend about 10-18 hours there altogether every day, taking turns. June sleeps on our chests (the kangeroo method) and this gives her more comfort and she feels the heat/love from us. Many studdies have been made on the topic and it shows that children that get a lot of human touch as very small (premature children) develop better and face less risks of stress symptomes, that are very comon among these children. It often develops later when the get older. If we can only help her slightly by being there all the time, it is worth every second.
She is still on oxygen, still hooked up to all the instruments. We took everything of two weeks ago, but had to take a few steps backwards. We see that she now puts on weight again. For about three weeks, she did not put on weight at all. This was scary and probably due to her lung desease. Now she is treated for it and she does not have to use so much own energy in order to breath.
We have not moved to the other hospital yet, but we will visit them today in order to see how it is. All the hospitals in Stockholm are overfilled with small children now (it it the time of the year... the result of the Swedish summer...) and it is difficoult to find beds. Some children even have to be sent of to other cities nearby.
Spring has slowly came to Stockholm and this makes things easier. The sun really has a nice impact after the long and dark winter.
Tuesday 27th of March, part two
No, no.... We wanted things to be OK by now, but no, no.... June will not be able to come home yet. The examination of her lungs showed that she has BPD. It is not uncommon that premature children get this, but we thought, and obviously so did the doctors (or at least some of them) where not expecting this. Last week, she got worse and weaker as we said, and the probable cause is her lungs. They are not fully developed and she will need extra oxygen for a while more.
The doctor explained that she has a very "light thouch" of BPD and she will get well. But, this probably means that we will stay hospitalized for another 2-4 weeks.... Just as we where getting hopes up for going home.
In the last one and a half weeks, June has not grown enough and this is probably due to the fact that she has used her energy breath and collect oxygen enough. We have now changed her treatment slightly and we hope she will get better through this. We should be able to see her take of in only a few days.
This probably also mean that we have to change hospital and Christina and I will visit the new one (Danderyds Sjukhus) tomorrow to "check it out". Why do we have to move ? The hospital we now stay in are focused on intensive care. They only have room for about 15 children. What June now needs is to grow out of her BPD, and get her weight up. This does not acctually need the intensive care resources and the other hospital is more specialized in the care of children after the most intensive care period.
BUT, the other hospital and ours are very closely connected, which means that the doctors are pretty much the same AND our doctor now will continue to follow her. Of course we will get new nurses and baby care takers, because these do not alternate. Still, a move is scary. June will be transported in an ambulance and I tell you, my car is not going to be more than 10 feet behind at any time. Of course the move is a normal procedure and it does not mean that we will risk things with her. A doctor and/or a nurse will sit by her all the time and she will travel in a humidity crib.
The move will be difficoult from another perspective. We have gotten used to the way they treat her here, and we know their ways. At the other hospital they do things differently and this will be confusing for us. We have heard other parents telling us about the move and it is often painful. Remember that it is our child we speak about, the most precious thing in the world for us now. And, we have slowly gotten used to one hospitals way of treating her. What if a nurse do things differently now, will that be right or wrong ???
I just called the hospital, it is now quarter to eleven at night and June is having stomache ache. She has had this for the last couple of days and she is in pain at times. If this continues I will go to her tonight again and let her sleap on my chest. This is much better than in a bed when you have pain at it keeps her more "comfy". We bought her her first Walkman and we play music for her at times. She loves this and it calms her down a little. Thank you Mozart !
Tuesday 27th of March, part one
No, we did not get to take her home for a day. She developed very quickly and we did many changes to her treatment last week. To many it seems, because she did not keep up with everything. We had to give her more oxygen again, and she did not eat enough. So, a few steps backwards again, .... In a way, I am glad that the rolercoaster slowed down, it was scary...
Due to these facts, June has been examined again, this time with focus on her lungs. X-ray and a special computer examination. Last night she was connected to a computer for 14 hours, and today the results are being analysed. We will meet with doctors today to get the results. We really hope it is not serious.
She does not catch on weight, she has been standing pretty much still for more than a week. This worries us. We do not want to stay in the hospital any more, we want to go home !! We want her to feel good !! We want to become a "normal" family again, but I guess, this is not going to happen for a while yet, or ???
Thursday 22nd of March
Have you ever been scared ? You know, the feeling you have going downwards in a rolercoster, thinking you are about to die, but knowing that it will soon slow down... This is about how Christina and I feel this week. June has developed so quickly in the last few days, and we have disconnected her from the machine that has measured her puls/breathing since the first moment of her life. Not only that, we have quit with some of the medicines she has gotten from the start, and we are trying to get her off the extra oxygen she gets. She is looking so fine ! But, wow, it was scary to disconnect her. I hardly wanted to leave the
room. In my oppinion, all children should have an alarm on them if they stop breathing for only a second.. No, I am not paranoid, I know it is necesary, but...
Yesterday our doctor came into our room, with the nurse close behind. - Now we are going to do this and that, this and that... It all went so fast that I only after a few minutes actually understood what she was saying. -We are going home !!! Now June will go through a lot of tests in order to recheck everything, and we will be prepared for taking care of her by ourself. We already know that June IS PRODUCING HER OWN RED BLOOD CELLS (No Christmas present ever can beat that!!), that her organs are functioning well. But, a last check.
OK, we are not leaving today. Maybee we get to bring her home for the day on Sunday, then return to the hospital for the night. But, maybee next week we will be released...
Now, bringing home a child that is premature is not like bringing home a "normal" child. We will get support from medical staff and we will check back with the hospital frequently in the beginning. June is also more sensitive to infections and we have to protect her well. Guests got to feel 100% well, and we have to continue to be careful. Christina and I do not travel by bus nor subway, as these environments are dangerous now. The flu is still around, and if one of us get it, we have to isolate us from June. If June gets it, then...
We will tell you more about this exciting period soon..
Sunday 18th of March
We have had some nice days, without any incidents. She still breathes without breathing support and she eats more and more from her bottle. When she can eat everything by herself, we will be able to go home... We long for that day. It can be 1 week, or three, we do not know yet, but we are very busy also preparing our home for her.
Take your time and check out the new pictures !!
Thursday 15th of March
Yes I know, it is high time for some new pictures... We have som very nice ones... They will come a.s.a.p.
The last days have been good days. We examined Junes lungs, and they are very good, we examined her eyes, and it all looks fine. She has a cold now, and you know how that feels... Why can she not just be 100% ok... It seems there always have to be something...
The results from the meeting with the experts last Friday was that they will do new tests of her blood, and probably DNA-analysis. We will wait until she gets a little older before we take the "bonetest" (benmärgsprov), as it is a big risk that she gets a fracture from this, and we also have to put her to sleep because it is painful.
Todays score on the weight scale is 1960g. We hope to get her over 2 kg on Saturday. Focus the next days is to get her to eat more and grow. We are not satisfied with her growth (but it is not alarming, as she had to use so much energy to fight her illnesses), so a dietist will analyse her food and suggest how to proceed.
Christina and I are slowly also preparing our home for the big DAY when we get to bring her here. We bought a new bed, painted her room (even though she will sleep in our room until she turns 22 :-), and we are looking into cleaning... Maybee we can have her here in 2-4 weeks... Let us hope !!!
Sunday 11th of March
As you can see, we do not update every day any more. This is a good sign, as June is stabilizing more and more. She is now feeling good, except for an eye infection and probably a cold...
On Friday we got rid of the Cpap, the breathingsupport she had. Last time we took it off, she could not handle it, but this time it looks better. At least she has managed 48h by now. Not perfectly, but good. She had some pulse drops again, but we still continue to try without it. She gets extra oxygen through a thin plastic hose instead.
This makes a large difference and we are very happy for it. Now we can see her face better, and it is easier to lift her out of the bed. We do not need to be two persons every time. Finally we can hold her like a "real baby".
On Friday, there was an expert meeting about June, but we have not seen the outcome yet. They are still trying to find out what has been wrong with her. Today Sunday, her blood value was the best ever, which makes us very happy. There is also trace of own blood production which is a very important step in the right direction. Weight is going up and down now, as she is treated for the water in her lungs. We help her to get liquid out of her body, and this has an impact on the weight
We have some new great pictures, that I will try to post tonight or tomorrow.
Thursday 8th of March
June is doing better again, much better. So are we. We where very worried in the beginning of this week, as it started of with such though times. It feels good that she is better now and is catching on some weight again.
With the help of X-ray, we found some liquide in her lungs and she was treated for this. Now her breathing is better as well and more stable. A few days she was breathing so quickly all the time one would think that she had ran long ways :-)
Sunday - Tuesday we did not sleep well. We were awaiting her progress all the time. I spent two veeeryyyy loooong nights with her. It is more important that Christina gets her rest, as she also has to think about the "milkproduction" and as soon as she is to worried and/or sleep to little it is affected. This milk is so valuable to June. Christina has been able to feed June with her milk all the time, which is very good. I admire her for this (and for alot of other things of course).
We got some more food... great... now we can avoid McDonalds for another week. Thanks a lot !!
Life at the hospital is very special. We meet people in so many situations, everyone with their special feelings / fate and their child with their special situation. These children are all miracles and fighters. They get a though start, and so do the parents. It is a very intensive and though environment to stay in. All parents so much engaged in their children, yet not able to take care of them themselves, but always depending on medical assistance. A special way to start a family. Then it is good to know that the children are in good care with professional staff. We have seen many examples of this.
Tuesday 6th of March
June is ill... We have had though days. Sunday/Monday where among the the thoughest days (not counting the first two weeks...) we´ve had.. Things seemed to develop so well and then this step backwards...
Sunday afternoon June suddenly turned pale and lost all power. It all came so quickly. She could not get enough oxygen through her own breathing and became week. We had to give her much more oxygen and raise the breathing support she gets.
Of cours she was treated immediately and all kinds of tests where taken. Later in the evening it was decided to give her more blood. She still has problems producing her red blood cells.
It was very scary to us and we have had some days with little or bad sleep.
She is now doing better again, and the tests did not show any signs of infection. She looks like nothing has happened.. One day we´ll tell her all about how she scared us... but, as a parent to a teenager just told us... there will be worse surprises !!?? :-)
As we can not get the answer to the question, why does she not produce her own red blood cells a team of experts will meet on Friday to discuss June and how to proceed. It is very likely that we will have to check her (benmärg) bone, by taking a test on it ( I do not know the proper English word for it).
While waiting for a diagnosis, we continue to give June blood at times, which keeps her "fresh".
Good news, she has now started to get food directly into her mouth and she can swallow it all. Christina is now slowly beginning to hold her to her brest in order for June to learn how to get the milk by her self.
Wednesday-Thursday 28-1st update
Good days, but busy... We enjoy more and more moments when she is awake and we can have eyecontact. More tests have been taken on her heart (looks good) and for virus checks. June has also received more extra blood, and will continue to do so for a while. She does not produce enough red bloodcells herself yet. We have taken some nice new pictures, they will be up soon. For now, I just got home after a long evening at the hospital, so I´ll post them this week end.
Sunday-Tuesday 25-27th update
The weight does not go up as it should. June is having alot of stomachepains. Monday we probably got the answer to why her pulse has dropped so many times, and to her stomachepains. She has an infection caused by a virus. She has been contained by an airborn virus, which we can not treat. We just have to wait it out. This has caused her alot of pain and she is still ill from it. It is also the probable cause to why her weight is not going up as it should. It feels good to get an answer. This is not an answer to why she was ill when she was born, that we are still investigating.
She continues to eat every 3rd hour, now 37 ml of her mothers milk. She still gets the food through help from us. She is still to young to eat from the breasts. In between every meal she gets pain when she tries to pup. This puping is a big thing !! We then lessen her pain by helping her by holding a hand on her stomache, by giving masage and by doing some "gymnastics" with her legs. As soon as she gets some gases or pup out, she relaxes. It is painful to see her suffer, but we know that by being with her, we help her through it and at least we can reduce the pain somewhat. She uses a lot of energy to this process, energy that she needs to grow instead.
We will also take some more tests this week. We will take a small part of her bone, in order to find out why she is not producing red blodcells as she should. As for now, we continue to give her some extra blood every now and then in order to keep her at a good blood level. To do this test, we might have to put her to sleep, so it is not without worries we await it.
The hours in the hospital are very long at times. We try to cover at least 12-16 hour every day by taking turns, and by spending alot of time together. Some days we try to take some breaks in order to "breath". Your continous support is great and makes us feel very good. Many have asked they could do anything to help... The best things is home-made food. We eat seperately most of the time, and there is not time to cook. And the "already made food" you buy in a store is easy to get tired of... If you help us with this, you simply freeze in small portions, and we´ll pick it up. We valuate this tremendous. Last week we got a batch and we enjoyed Magnus and Annelies food for many days. We eat anything!!!
Have a great day !
Friday-Saturday 23-24th update
No more alarms. We had two less dramatic days now. Today, Saturday night, June was awake for a long time. She laid naken in her bed, her big eyes open and looked at us. She reached her arms towards mum and seemed very happy. We had about 10 minutes together like this when she enjoyed mums kisses on her stomache and listening to her song with big ears. What a moment !! We long for the time when she will be more awake.
Wednesday-Thursday 21-22nd update
June is now 34 weeks young...
The eye examination went well. The sight is not fully developed yet (normal for her age) We follow the development of her eyes closely every week. As for now, she can differ between light/dark, but her vision is not clear. Like a blury picture...
She has been developing fine. We gave her her weekly bath Wednesday, and we can see how she grows from week to week.
Today we took of her Cpap, the breathing support, and it started well. It was so nice to see her face without anything disturbing (see new pictures). One hour - ok, two hours - ok, the third hour she could not handle... her pulse dropped and she could not get back herself, not even with our stimulation. Alarm... 10 nurses came running in seconds that felt to long, a doctor, big attention and they got her pulse beating again. The dropp was caused by her needing to pup, which is hard work for her and this in combination with no breathing support was to much... She already likes to get attention :-)
This was a little to much for dad. One thing is to keep calm when it happens which I do, another is the reaction afterwards. Having seen her laying there for such a long time, pale and with very vague pulse... all the people, alarms... I had to sit down for a while afterwards and catch up. There was never a great danger for her, they have many measures to take to get her breathing/the pulse going again, but it still scared the "heck" out of me. Luckily Christina was not there when it happened, but came back only when everything had calmed down again.
So, back with breathing support for another week, then we will try again !!!
We launched some new pictures, have a look at them...
Monday-Tuesday 19th-20th update
June has been stable these two days. Almost no pulse drops... Great !!! She is getting bigger (1640g, length 41,6cm). She got a new bed, a modern one that is adjustable in height. Good for our backs.Tomorrow, Wednesday, we will check her sight. Thank you Magnus and Annelie for lovely food !!! A change to restaurants and Findus...
Sunday 18th update
What a wonderful day, sunshine and June has been doing great. She slept through most of the day, and her stomache did not cause her much trouble. When she was awake, she looked at us with her big beautiful eyes. She emptied her stomache and scored the highest "puppoint" ever. When a nurse was changing her diper, June farted so strong, that she got it all on her blouse :-)
Saturday 17th update
Mum and dad finally got out of the hospital together. We went for our first walk in 5 weeks... Thank you Johan and Christina for "taking us out"... We are going to spend another (at least) 8 weeks in the hospital, so we need to get out of the intensive care at times. Slowly, slowly... But, it is difficoult to leave her there. Fortunately the staff at Karolinska are great and they take great care of all of us.
Except for stomache ache June has being doing fine today.
Friday 16th update
Now we can feel June is putting on weight. It is not just skin and bone. It is wonderful to fell her soft arms, legs... I wish I could give her some of my extra kilos :-) (not that I believe I have any, but her mum claims so...???)
Thursday 15th update
What caused June´s sudden illnes ? We still do not know. In order to get further more tests will have to be taken. Poor girl, but she is though.
The stomache is aching, so we spend much time giving her massage. Her blood value is not as it should be, but we watch her closely. Overall she is doing better now and she is catching on weight. 1486 yesterday !!! She has grown 2 cm in her first month. She could have put on more weight, but she had a very though start in this life.
A neurologist checked her today, and all her reflexes are normal and she is developing well.
New pictures today!!!
Today, Wednesday the 14th, we celebrate June´s first month with us. She was born on Wednesday the 17th of January. She is doing better, but now has problems with her stomache. We give her massage and cheer everytime she gets something out....
Happy Valentine !!!!
12th of February update:
June has stabilized more and this feels great. She has worn her first clothes, size 40, and they are much to big... Incredible. We will have to use the clothes we buy for her dolls later. 10 more grams in 2 days, (should have been more) and +2 cm since she was born. We can see her growing from day to day. She likes her new bed !
11th of February update:
A small step for mankind, a giant lap for our family
June moved out of the humidity crib and into a bed. The bed is kept warm through a heated water matress. This really makes a difference for us all. Suddenly we came so close to her and everything becomes so much easier. We can comfort her without having to open the crib, we can see her without having to look through the plexiglas, we get so much closer. And, it becomes more comfortable for her.
She felt better today, and her pulse has not dropped as many times. We put back the Cpap (a breathing support) and gave her medicine helping her to pee a lot. This helped and she has had a much calmer day. We have X-rayed her lungs and they look great, so do all her other organs. This week we will measure her breathing. This is done by a nurse, who sits by her the whole night, taking notes every other minute of how she breathes/heart rate and so on... We are so greatful for the professional care June gets.
We really appreciate all your support. We can see from the statistics that our site has many visitors (40-60 a day) and we really appreciate this. Being able to tell you through the web might seem a little less personal, but it saves us much time. As you understand we both spend most awake hours in the hospital, and it is difficult to get to a phone at times.
You can reach both Christina and me by sending e-mails and I/we try to answer as soon as we can. We apprecieate to hear from you. Send to Christina and Sven
June has received some more fresh blood, which also helps her. Thanks again all of you who
donate blood.
It is really needed. If you do not already, please think of it. It takes so little, and means so much.
New pictures... check them out. Junes first bed, first clothes and more....
9-10th of February update:
June is now in her 32nd week. We can see how she grows and it is wonderful. I wish I could put her next to a new born child in its 40th week, so that you could see the difference of size. I can hold June in one hand (my hand is big).
She is still having her problems. We try different things to help her, but we have not figured out what causes her pulse dropps. Her stomache gets very big and she swallows air in mas. We believe her problems with the stomache causes preasure on her lungs. This influences her ability to breath and her sometimes forgetting to. We hope we will find the answer soon.
8th of February update:
The problems from yesterday got worse. June´s pulse dropped so much that we had to help her almost 20 times today. We are trying everything to get her stable. Imagine yourself, in one day, your pulse goes down to 50... How tired would you be ? She slept the whole day and only woke up in the evening, giving me a great smile as if nothing had happened... - Hi dad ! Again, this is part of the premature behavour, but that does not make it less scary. She has it to much and it is of course not good for her.
Another thing that troubles us is her large stomache. Since she is back on a Cpap, breathing support, she swallows air, and her stomache grows. She also needs help (massage) in order to pup as much as possible.
Today, Christina left the hospital before me. I spent 14 hours there, hoping for improvements. I got my reward. At 22.00, June looked up at me as I menitoned above. It was a great feeling and trying to ligthening up the day, I called Christina at home saying, congrats, you have become a grandma.. June just had a baby...??? It took a while before she got the joke, it was really just a lot of air/pup coming out, making her stomache smaller. We got ourself a good laughter !
Good news is that she has put on a lot of weight. See below. Give it a shot, what will it be tomorrow on the 10th... a great picture of June is at stake.... Speaking about pictures, I´ve downloaded some new ones last night.... See grandma smile and June fly !!! Follow the link below...
7th of February update:
Junes breathing problems are continuing. She keeps us worried. Today a little less than yesterday.
We (Christina and I) left the hospital and stay at home. Unfortunately the preasure on the hospital is so big, and as we live not to far from it, we had to leave our room there. It was scary to sleep at home for the first time in 3 weeks, knowing we are 20 minutes, instead of 2, away from June. But, the nurses in at the hospital really take good care of her.
We have started to take June out of the humidity crib more and more. Now she gets to spend many hours a day sleeping on our chests. This gives her more comfort, an natural movement, and she likes it a lot.
It is wonderful to notice how she recognises Christina and me from our voices, smells and touches. It really makes a difference when we sit by her and calm her down when she is worried.
3-6nd of February update:
Sorry we did not update for a few days. It has been a somewhat special time. I believe things are catching up with us, and we both feel very tired right now. Sitting by June for a few hours is a lot tougher than to work... One thing that has troubled June, and made us both feel helpless are her continous "pulse-dropps". Suddenly she forgets to breath, and her puls goes down and we loose contact with her. Then we have to stimulate her, mostly lightly by lifting her hand, push her a little, but sometimes also by really shaking her, or even lifting her up. It is scary everytime. It is a part of her being premature born, but we believe she has to much of it. Of course the doctors are looking into this and we are awaiting results. Nurses tell us not to worry to much, but how can we not ?
She is catching on weight. Today she reached 1217g, and she eats 26ml of breastmilk every third hour. It is important that her stomache functions well, so Christina and I have started to compete... who gets the most "pupe-points" during the time we sit. For one and a half day, nothing came out at all, then, during my watch, I (or she) scored 10 points... We help her by giving her stomache masage. 1 point is little, 2 point middle and 3 points a lot. So, imagine how many times I had to change on her. Luckily it has not started to smell bad yet :-)
We feel much confidence in the people taking care of June and us. They are really professional, dedicated and nice. This makes us as parents feel good.
2nd of February update:
A long night, and a long day. June is having continous problems with her stomache (we believe, she does not tell us :-) She is awake to much and has pains. But, in between she seemes very happy. Another happy person is dad, last night I held June for the first time! I sat with her on my chest for two hours during the night, and she slept most of the time. How nice to be able to give her comfort...This was the happiest moment in my life... Our little daughter, our little girl. Today, the second time I held her she thanked me by peing all over my stomache :-)
June now spends more and more time with us, and we are trying to let her sleep on our chests as much as possible. Many hours at the time, as it gives her comfort and security.
1st of February update:
Grandma came ! Happines. Grandma came from Spain today and met her first grandchild for the first time... Both June (?) and Grandma where very excited and it was nice to see them together. It is strange how I suddenly have so many questions to ask mum, and som many new topics to talk about... How did you use to do this, and that...
June´s pulse has dropped a few times today. Once we had to help her back on track, the other times she managed herself. It is scary to sit next to the crib, hear the "bibs" and se the curve on the machine go down... and not to interfere.. It is important that we see that she can recover herself, but sometimes she needs help. Then it feels grate to be here in the hospital. Usually we just need to scratch her back or tickle her a little and then she starts breathing again. It sounds very dramatic, and it is, but it is unfortunately one of the things that premature babies go through... Both Christina and I are doing fine, worried, but very positive and we know that everything is going to be ok in the end. We are greatful for your continous support.
31st of January update:
Today June celebrated her birthday !!! Yes, her 2 weeks birthday. Susanne baked a cake (see pictures) we celebrated with baloons and a nice little present from Charlie, a teddy bear.
Yesterday June and Mum where on the national news "Aktuellt". The professor managing the intensive department for children was interviewed about the "art" of saving lives of these early born children and about other things. June and Mum appeared a lot in the reportage. A moviestar already !!!
Today it was time for Junes first bath. Have a look at the new picture. It was a great feeling to hold her (first time for dad) and to see her enjoy the warm water.
weight 1167g
30th of January update:
For the first time mum is making the daily report...today June has recovered from yesterday's backdraw, so mum and dad are much happier today. We have also talked to one of June's doctors and he said that she is doing great. She is no longer ill, now she only has to fight the problems of beeing born to early. That is problem with breathing and nutrition...and for June it's the food thing...so I hope this will be solved in the days to come. Then she only has to focus on growing. She is a good girl and I'm sure she will listen to mum and dad. Keep your fingers crossed!
weight 1158g
29th of January update:
The night was troublesome with high temperature and with high puls rate. We took some blood tests, and discovered that there might be an infection coming up. Medicine! New tests... It was a late night and dad sat by her side until 3.30 a.m. One day, when June gets her driver´s licence it is payback time.. Then mum and dad whant to be picked up after dinners with friends, and driven to parties whenever we wish!!!
During the day June got better, again spent long time on mum´s chest and looked more content. As the nurses say, it will be a time with two steps forward, one step backwards. June will have to stay in hospital for at least 10 weeks more.
28th of January update:
What a morning.. Christina got to hold June for two hours in the morning. Happines! June has been fighting a high pulse and a high temperature today, but the nurses and doctors explain that this is part of the recovery process and an effect of the medicine she is taking. She can still breath by herself, and needs very little support. She continues to eat mum´s milk, a little bit more every day...
Our worry now is that she sometimes "forgets" to breath, resulting in rapid drops of her puls. It hurts in my heart every time, and we stay by her bed to follow it closely. Luckely her reflexes have helped her almost all the times, and she has started to breath by herself again. Also this, the doctors say, is normal for these early born children.
weight 1187g
27th of January update:
Today June looked at me (dad)with both eyes at the same time. For more than two minutes we had eye contact. I wish I knew what she thought about. Probably she wondered what all this is about... Why all these things... Take em off.. Why can´t we just go home dad...
June has now startet to eat with a great apetite. We give her more and more for each meal. Now we are up in 18ml milk every third hour. When she reaches 25ml (hopefully tonight) we will get rid of her infusion (nutrition through an hose). Today she also was able to sleep on her stomache for the first time... Small wonders every day !
26th of January update:
Yesterday June was moved out of the emergency room. This is a good sign. Instead she is treated in a room next to it, with the same care and by the same people. Only, it is not the emergency room, and that feels good. She breathes better and eat Christinas milk. Today we held June for the first time. We had to wait for more than a week. Guess how that felt !
Every day is a new adventure. We can give her more and more milk, we can get rid of one after one machine and we can see more and more of her face. Do we have to say that she is the most beatif...
The doctors still do not know what caused Junes illnes. She had the lowest bloodvalue they have ever seen when she was born. She attacked the red bloodcells and they had to change blood six times before she stabilized. The doctors and other experts are still working on trying to find out. In the mean time, we treat her symptoms.
weight 1170g
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