301207 - UK

Is having kids not suppose to keep you young? I looked 15 years older in the night when I was at the loo. I guess that I after all have changed after having kids in some aspects. I’m still philosophising about this; has the world changed in my eyes or have I, after having Mary Ann? One thing is for sure. I’m a lot more nervous to loose now. I wake up totally scared because I have dreamt that I have lost one of them. I go directly to check on Mary Ann. Is she still breathing? Is Neil still here? Is Cecilie doing okay? Neil has always teased me when I felt the urge to check upon Cecilie. He does not understand that I want to check an 11 year old in the middle of her sleep. I do realise that she can’t die of cot death. But you never know what else could happen. Imagine to loose your treasure without even knowing is was there. When Cecilie was four years old sleeping in Neil’s bedroom I could wake up feeling that she didn’t breath/snore. I had to wake up Neil as well because I couldn’t reach her while lying their in her high bed. I can tell you, I was not miss popular, waking him up like that. I guess he came to his senses in the morning when he suddenly embraced me and gave me a big kiss on the forehead (like you do at a child); Thank you for caring so much. Thank you? Thank you is word used when someone do an effort. I’m just my normal self doomed with this fidgety feeling 24/7. I didn’t say anything. I just mumble something about a proper girlfriend kiss on the lips would be a treasured gesture.

291207 - UK

Bottle feeding is truly an art form. Especially when it’s going on for 3,5 hours. Today Mary Ann had this idea that she only want to eat a little but all the time. That meant that I was running around to warm some more milk and I had a cold porridge and cold tea after the first 3 hours. I didn’t want to get up again to make myself some new breakfast. I try a new approach today regarding my own nutrition. I have big problem with my blood sucker if I don’t eat on a regular basic. It was close that I fainted twice in the last two days. I have heard from other mums that they have the same problem when they are busy with their babies. Since I don’t feel busy and the slightest stressed I didn’t think about the importance with the nutrition. So in quiet time I make my self small pieces of different fruit now so it’s easy to get some kind of healthy food when I sit with Mary Ann.
Cecilie has asked again to feed Mary Ann. But she finds it difficult so I didn’t allow her. But now I came up with an idea that might work out for Cecilie so she now can get some success experience to make Cecilie want to keep feeding Mary Ann. I found that it was a lot easier to keep Mary Ann in her crib while feeding. Then you have both hands free. I will only do that myself sometimes when it’s too hard to get up and down the chair all the time. Like this morning and again this evening where I’m totally boosted. We have all been cleaning the house after each ones ability. That meant that Cecilie was doing the vacuuming in the whole house. She did complain a bit but she did it all by her self. I had to tell her a couple of time that neither Neil or I could do it because of health and normally we always pay someone else to do it. Our cleaning lady didn’t come last Thursday for some reason. So we had to do it our self this week. Of curse Cecilie complain when it’s chores time. But she always does what I ask her. She is such a good girl.
I want Cecilie to know that kindness and willingness is worth a while. We want to raise Mary Ann in the same way of curse. So after dinner we will watch some dvd with Cecilie. That is something she really enjoy that we do together.
I love that Cecilie want to do some things with us. You never know when that will change. Cecilie said today that it must be good for me that I now have Mary Ann to spoil, spent time with and kiss all the time “now when I’m almost too big for all that”. Cecilie also asked what I’m looking much forward for with Mary Ann. If it is when she can eat normal food or walk. I’m just looking forward for – it all. When she can tell if she feels loved enough, safe enough, or when she can laugh, when she can smile or just for a new day with her. Everything changes so quickly so you better enjoy every single simple moment. You don’t get it back.

281207 - UK

Today is the monthly Cecilie day. I have promised her from the very beginning that when we had a new baby in the house we would still be alone with her once in a while. And why not celebrate Cecilie day by us going on our own to the movie theater? Then another day Neil and Cecilie could do something on their own. We saw a classic Disney animated fairy tale which meets with the modern, live-action romantic comedy in Walt Disney Pictures' ENCHANTED. Featuring an all-star cast, the film follows the beautiful princess Giselle (AMY ADAMS) as she is banished by an evil queen (SUSAN SARANDON) from her magical, musical animated land and finds herself in the gritty reality of the streets of modern-day Manhattan. Shocked by this strange new environment that doesn't operate on a "happily ever after" basis, Giselle is now adrift in a chaotic world badly in need of enchantment. But when Giselle begins to fall in love with a charmingly flawed divorce lawyer (PATRICK DEMPSEY) who has come to her aid -- even though she is already promised to a perfect fairy tale prince (JAMES MARSDEN) back home -- she has to wonder: can a storybook view of romance survive in the real world?
Oh my, the romantic part of me loved that movie. So did Cecilie even though she normally doesn’t like girly things. H’m? Maybe there’s a girl in her some where after all?! She was certainly also being girly when she all of a sudden didn’t wanted to walk next to me when some bigger girls were around. Funny. I didn’t say anything before afterwards when we were alone in the car. I tried to talk about it with her “Cecilie, when I was a teenager I sometimes felt embarrassed if …” That gave us a good chat. A nice day today. First with Mary Ann who eat very well the most of the day. Neil didn’t wake me before 5.30 today. So I had many hours of sleep. When we woke Neil up round 2pm Cecilie and I made English breakfast for him/lunch for Cecilie. We all watched a dvd together; Beethoven. Right after the dvd Cecilie went to the movie theatre. Now neil and Cecilie are calling the UK-part of family who all are together today. I’m on my way to bed as normal this hour.

http://www.youtube.com/watch?v=-nRGC720Qak

271207 - UK

Mary Ann is now discharged from the hospital. Neil was there all three hours waiting for the doctor to check her. She is now up to 2570g! Luckily I had this feeling that it could take some time. So I took Cecilie out shopping in the meanwhile. The long wait meant that we were late home for some new friends to come by, bad start. But they took it nicely. They were waiting outside our house when we came. I’m glad that I had prepared the table the night before. We just had the leftovers of our Christmas sweets and tea, so that was an easy way of entertaining. It was so good to see them here. It is a girl I meet during my recent stay at the hospital. She was almost to due when I went to the same ward because of my blood pressure problems during pregnancy. The fun part is that with all the things that happened with me, we gave birth the same day. I can not describe how fun it was to see the difference between those two babies. She brought her baby Oliver here with her British husband and four year old son. We had a nice afternoon together. We hope to see them again in the new year.

261207 - UK

Cecilie was with her grandma today. That gave Neil and I an afternoon with dvd watching quietly together. I took Mary Ann out on the mini crosser again doing some shopping. This time I also brought the dog. Tiree was very curios to see what was the that auto chair on the mini crosser. I showed her and then everything was fine again. We also took advantage of the quiet day by using the towel from my colleagues. Mary Ann had her first bath here in the house. Neil did that. My back and neck is still cursing me some problems. And in the other hand why give my self more pain with bathing. Instead I have her round 17-19 hours a day. My main focus is to have as much contact with her as I can before the doctor send me back to work. So now Mary Ann is washed every evening instead of mornings. I undress her and find her clean clothes and give her her vitamins first and then Neil takes over. Again we do what we are best at here.

251207 - UK

I talked with one of Neil’s brothers tonight. He asked about the Mary Ann routine. I think it’s going very well. Yet, I pondered that this routine means that Neil and I never go to bed in the same time or wake up in the same time. I love when we go to bed in the same time so we can have a little chat. The same as waking up in the morning knowing that you loved one is next to you. But when I come to think about it, it was not normal for us to go to bed in the same time any way. And through those seven years of Neil’s time on the sea, we had very few days where he slept at home. Another thing is that I know he’s here when I wake up. He’s just in the other end of the house. When all comes to the point, this routine gives us some sleep. The only thing is I find it difficult to go to sleep as early as before Mary Ann came along. Fare most nights I sleep 3-4 hours, then maybe 1 hour in the morning and sometimes a nap for an hour in the afternoon. I’m kind of waiting for the sleep to hit me one early night, so I can get 7-8 hours in a row. Mary Ann and Neil just look so cute together in the evening when I have to go to bed. I want to stay up with them.
I simply love this daily life. Mary Ann on my lap, Tiree by my feet and Cecilie sitting closely next to us talking about all sorts of things she want’s to share with me. Neil in the background humming while doing his domestic chores. Life is grand! AND a lot more nice moments yet to come …

241207 - UK

Oh my. Finally the day came. Christmas Day where Mary Ann should meet my Granny – her Great Grandma for the first time. I have been looking so much forward for it, that I totally had forgotten about the Christmas present I had for Neil and he had for me.
It has been a hectic program today. First we had to go to the hospital with Mary Ann to check her weight. She had gained 110g – more then double of what she should have. That gives her a weight on 2485g. We now have to stop counting grams and millilitres. That will be hard. The nurse told us that Mary Ann can adjust her consume herself. We shouldn’t worry. The nurse was so pleased with Mary Ann’s progress that she wanted to discharge her today. We wanted to wait to Thursday just to be on the safe side.
Right after hospital Mary Ann and I went to church. It’s important for me, that she get use to being there. I was afraid to stay there to long though. We left when they were about to sing the second song. I rather have her sleeping so she can feel the strength to eat more.
When we came home the neighbours returned back Tiree. They had her for few days so we could concentrate on Mary Ann and her eating routine.
Half an hour later we were on our way to Christmas dinner with my Granny. A lovely dinner which we really enjoyed. But my! It was busy. We were to tell many times the senile that they lived there. They didn’t understand where they were at all. We explained to them that we would follow them home. Had to promise them to drive them to another town. They were all very confused and thought they lived in other towns. I gather it was their old home towns they talked about. My Granny seemed so happy. When she saw Mary Ann she asked: Who is that little fellow? And then she pricked Mary Ann’s eye. She behaved like Mary Ann was a doll. She always said little fellow also to Cecilie when she met her the first time many years ago and before she was senile. I’m not too sure how much she understands. I think she kind of knows who I am. She kept on telling me, that I always have been such a nice girl and good to her. (Maybe she has been thinking on another then me). That’s the main ting; she’s happy and knows that I only want the very best for her. She tried to charm her way with Neil. She told me that he was a nice handsome young man. I had to tell her that I knew. That’s why he is mine!
The poor Mary Ann didn’t eat that much today. I’m sure it is because of all the fuss that happened in one day. She didn’t make a sound throughout the whole day. She is easy to bring along. I hope it stays like that.

231207 - UK

What to do on the day before Christmas Eve? I had Mary Ann out for the first time on my mini crosser. I was dieing to try it out especially before tomorrow. I would like to go to Church tomorrow. Neil doesn’t like to go. But it’s important for me that Mary Ann gets use to going to Church and especially going everywhere on the mini crosser. It went smoothly. She cried a bit after a couple of minutes. I then cuddled her and felt a sleep again. I’m sure it’s difficult to imagine how she goes with me on the mini crosser. It was very safe. I have a car safety seat screwed on the mini crosser. It has one seat belt and another one to strap around duvet and all. Neil installed a little shelter over her head. When I came back she was still warm and sleeping.
Cecilie suddenly called. She wants to come over today and sleep with us. She was not supposed to come before Tuesday. I think she wants to come because Mary Ann is here now. Neil thinks it’s because she is hoping to get presents already today. I don’t think so because Cecilie is normally not that kind of child. Let’s see. Anyway I love that she’s coming. That means that we will have her on Christmas day morning. I love that. It’s nice to have her here on that day. She is still going to her mum’s house for Christmas dinner, but still … We will have her Christmas next year.
When Cecilie came I was feeding Mary Ann. Cecilie wanted to do it. But I was afraid that Mary Ann would stop eating if moved. So I refused Cecilie feeding her. Instead I asked Cecilie to gently squeeze Mary Ann’s hand. This can help Mary Ann’s desire for sucking. So can other things as me moving the bottle around in a special way, pressing her chins together or pull the lip. I did these things as well to keep Mary Ann sucking. But I want Cecilie to feel important and useful, so I told Cecilie that her squeezes were what did the trick. I had Mary Ann eat up to 100ml! today. Cecilie now feels she can feed Mary Ann because she did so well with the squeezing. The exaggeration from my part gave me a substitute for feeding Mary Ann. Cecilie is totally ready for all sorts of things with Mary Ann. I think Cecilie could be a great help. That is also what I tell her all the time. It’s just a matter of us to let Cecilie do stuff. I always let Cecilie do different things. But I think Neil find it easier to do everything himself/with out Cecilie sometimes. But I believe she’s big enough to change her own bedding as ex.
In the morning I tried to find Mary Ann some Christmas clothes to wear. Granny gave her a nice bib “My first Christmas”. It’s way too big for her. I thought about using it as a little dress. But then I found some white clothes she could fit. We have a big thick sweater from our friend Jette’s boys. I weaved red satin ribbon at the bottom. In the end she had red socks on from our friends Anne Dorte’s girls. She became a cute little Christmas baby by that. With those Christmas pictures in the slide, we wish you a very merry Christmas! We are certainly going to have a Mary (!) Christmas.

221207 - UK

Tiree has become a very irritating big sister. She barks and makes a lot of noise with her toys when we feed Mary Ann. That stresses me out. I think that’s why I haven’t been able to give Mary Ann the quiet time she needs so eat enough.
I told the nurse that today when we went to the hospital to have her weighed. Mary Ann has only gained 20g while at home with us. We will have to go to the hospital again Monday and Thursday to have her weight checked. But they are not worried in any way. I had Neil to take Tiree in the bedroom with him while I sat in the other end of the house with Mary Ann. Guess what? She then took 80ml!!!
Therefore Tiree stays with the kind neighbours for the next couple of days. Now it is so peaceful here with us. I don’t even feel tired even thought I have been up for several hours now. I rather sit a little with Mary Ann and Neil in the living room without Tiree disturbing us. It’s not even tempting to sit here in front of the computer tonight. So I’m off again.

211207 - UK

It has been a totally insane multitasking day today. I tried to go to the toilet three times without any luck. That insane. I better do some recording to remember. Maybe just for my own sake for pathetic sentimentality but never the less. It’s my blog and then my decision. Finally I have a little power on something :-) Everything happened at the same times it seemed. I woke up at 0330am wondering where Neil was with Mary Ann. I was supposed to have her from 3am. Neil sat with her in the living room. I sent him to bed and sat with Mary Ann in the living room instead with my porridge and tea. Then the day was started.
0500 Mary Ann was washed and feed.
0545 She slept with me and I watch a dvd
0630 Did some laundry and tiding up
0730 I bathed and got dressed. Arranged some of Mary Ann’s changing things and made some rye bread lunch and had “lunch”
0845 Made breakfast for Neil served in bed. I thought we could be a little cosy together. I wanted to feed Mary Ann in there as well. But I was not comfortable so we went to the living room again.
0855 Changed Mary Ann and feed her
09.30 Left the house going for doctor appointment at the hospital. I brought Mary Ann. Neil went with us and left us there and went to the hairdresser on his own. He stayed in town to do a lot of different errands to the photo shop after extra copies of Mary Ann pictures from his mum to mine, buying new t-shirts for him self where he had a credit waiting for him and a little of shopping.
I had an appointment for some new rheumatism drugs – I thought. But they were not ready for that because they hadn’t given each other the massage about it. So I came for nothing. Although I then had the change to test how it would be to be on my own outside with Mary Ann. I had her in a baby sling. It went very well. I could get up and down their chairs on my own because I didn’t have to hold my hands on her. It was possible because they have a lot of extra special pillows on their chairs. Mary Ann slept peacefully for the 1,5 hours it took of the outpatient department with waiting and all. When I was at the doctor’s room I just laid her on the bench with her little duvet over her. Actually I don’t use a duvet but a pillow because that fits better with her size for now. I had a little problem to explain to the doctor that I wanted heavy medicine now despite the fact that I don’t feel my joins are swollen and warm. I only want it to stop the development and the attacks of sudden pain and uncontrollable failure of functioning joins. I think he finally understood the importance of that. He will do some more tests on me and call me back in again. I hope I’m able to come due to the weather situation, if I’m alone with Mary Ann, if I can go on my own then and so on. I worry a little about these things. The doctor reflected on the fact that I must have activity in my rheumatism again now. He asked me details about my work. I found it was because the office of sickness benefits had asked him. We talked about how easy it was for me to work instead of be at home with Mary Ann. He gradually said that he could feel how important it was for me with my job. He also thought I was wise so have more medicine to cope with work and everyday life. He guessed that I might be able to be back work round April depending on how quick he could get me started some better medicine and how quick it would help me out. He asked me to think of having fewer hours at work. Fewer are better then nothing. I’m pleased that he wanted to give me some better medicine soon. Cecilie called two times while I was with the doctor.
She wanted to come and see us. But I couldn’t come and get her and then also drive her back to her mum’s house again because Mary Ann had to bee feed as soon as I went home again.
1210 I had something to eat at home
1220 The mail man came as I tried to go to the loo
1230 My friend Rikke called and I had to go to the loo while I talked with her
1300 Running out of time I quickly had to change Mary Ann who should eat at 1300
1350 Mary Ann was still eating while the phone rang a number of times. In the end I had to answer. That was the carpenter. While I talked with him the dog saw a possibility to jump up on my lap. Alarm! I had to hang up on the carpenter because Mary Ann was lying on my lap. I’m not too sure a baby can survive a nine kilo dog on top of her. I had to call the carpenter back. He said he wanted to come and see me. I was better to tell him to get in by him self since I still sat with her. Finally I got her to eat well again and then all these disturbances. Frustrating. While the carpenter was here both phones rang. In the end I had to answer still trying to feed Mary Ann who now had to be placed in her bed because the carpenter had forgotten my measurements. He stood there measuring how long my arm was. The phone call was the occupational therapist from hospital who wanted me to talk to the OT from my local region about – the ….. crib. Never mind the carpenter at least got his measurements of me again. He will hurry to build a functional playpen for me.
1400 The carpenter left and Neil came one minute after. As soon as I saw Neil I just burst it’s an insane day. He didn’t hear me since also he had been in contact with the big world today and needed to tell me all about it.
1410 I had to take Tiree out on a walk despite the fact that I wanted to have a nap. But Tiree has been all crazy and Mary Ann needed some quiet time. So I took Tiree out to the recycling shop, wastepaper container, drug store, grocer and the post office (where I made arrangements with the neighbour in the queue). I had to pick up four parcels. One from Auntie Julia and Uncle Donald with Christmas presents for Mary Ann and Cecilie. Thank you so much for that!
1530 Unpacking the parcels and putting them away.
1545 Writing blog for Wednesday
1630 Mary Ann cried, so I made a bottle for her since Neil was in the shower.
1730-1815 I finally had my nap with Mary Ann while Neil made dinner, cleared away and did some laundry, from where I left it in the morning.
1815 We had dinner together to chat about the day. Or that was the intention. I had to go to the loo and to check on the crying Mary Ann. When I came back Neil was all done and had cleaned up after the dinner. Then he had to run to kill the barking dog … I mean to ask the dog politely to stop barking.
18.45-22.30 Writing blog for Thursday and Friday

Good night!

201207 - UK

Today is the day. We are going home with Mary Ann. I had her from 3am and packed all our stuff after feeding her. Neil slept so it had to be a very quiet packing. I’m glad Neil sleep so heavily since I always drop the heavy things on my “I can do it all by myself mission”.
The poor Mary Ann was dressed very early. I wanted everything to be ready so we could go home. I was worried about her weight though. We weighed her again since it’s Thursday. She was only 2365g onto she wet the changing mat then she was down to only 2360g! Please Mary Ann, don’t pee when we have to weigh you. That means she has only put on 20g since Monday. That’s not enough. They let us bring her home anyway. As I also said we are not going to do anything differently at home. I think she didn’t put enough weight on because she couldn’t eat well due to her stomach ache. Hopefully that will be better in the next couple of days. Nevertheless it seems as she might have the problem still.
She was feed at 10am and at 11am we were having a meeting with the local authority. Finally we got some cleaning help. Neil needs to be relieved from some work here at home. Normally they don’t give that help when you have an able partner. But Neil has allergy so he can’t dust and things and he is always helping me, so they gave in. I hated that begging meeting but for Neil’s sake I swallowed my pride.
In the afternoon I went to see my colleagues. It was so great to see them all. But also a little odd realising that the world is spinning as always although my everyday has turned upside-down. We were having a Christmas launch together or rather they were and I cancelled my lunch because of the meeting we unexpectedly had to have at the hospital. Yet, it ended up with my bringing my own lunch since I was running around at the hospital for meeting with a nurse, a social adviser and an occupational therapist just because I wanted to borrow a crib with me home as different staff members promised me in my beginning pregnancy. Suddenly they had all forgotten about that deal. They all thought that was impossible all of a sudden. So now I have an old-fashioned crib which is without any functions. That again leaves it all to Neil with lifting Mary Ann. My guess is that I can lift her up in that kind of crib for 1-2 more months. Then what? Then I hope the carpenter is finished with the special made playpen I have booked him for in the beginning of my pregnancy. Patience is a virtue.
Going home with Mary Ann was of curse very special. I was so happy that I wanted to cry (yes guys it’s a girl thing). It was a little like that day we became parents. It was “great big”.
I tried to introduce Mary Ann slowly to few rooms. It ended up with her and I withdrawing from Neil and the very eager dog. We sat in the bedroom. I felt as relaxed with her as never before sitting there in my own comfy bed and not expecting anything from her what so ever. Not even when she cried for food. I thought she couldn’t concentrate on eating. I guess it was good not to expect anything because she had every drop of milk I gave her without spoil, complaints and breaks. Perfect start here on our own tot.

191207 - UK

Okay, I'm defiantly that baby’s mum. Finally I really feel that. I have loved her like a mum but didn’t feel I was the one closest to her – before now that is.
The started like every day here at the hospital has started. She was special beautiful this morning. Sweet and innocent looking at me with big dark eyes very a wake. She even smiled twice! That was my first time to see that. But through out the day her mood changed. She got angrier, it seemed. Special around feeding time she stood out like a bow away from me. Why was that? I know that you get angry when in pain. So maybe she had some pain somewhere? I had noticed that she hasn't made any poo since Monday. I felt more and more reassured that must be the reason even though the staff didn’t think so. In the evening I insisted that they did something about it. They made a lavement and then the problem was solved. Yes!, I know her best. In that moment I realized that I have the mother instinct therefore I must admit I can call my self her mum.

181207 - UK

Mary Ann is two months old now today. As usual the staff took her picture. I dressed her in the suit from Auntie Cath. Oh my, she looks so "growen up" and adorable - why shouldn't she? I took a nice picture of her. The suit which is size "tiny baby" fits well and will fit her for a couple for weeks, I will guess. And it is very warm which is perfect for these cold days where we started having minus degrees this week.

Our first night with her here at the hospital went well. Neil had her the whole evening unto 2am and I had her from 2am to 11am. We had to figure out how to make sure we didn't wake up eact other. I found it hard that Neil woke me up every time he turned on the light and opend the door. At home it will be easier. Then he can stay in the living room while I sleep in the bedroom and the other way around.

It worries me that Neil seem so tired today. He slept for many hours. At home he could easily be awake to 2am and up again at 7-8am. I hope it's because he's not use to sleep at hospitals.

It is a lot easier for me. Because I'm use to sleep here and because I can fall a sleep right away again and for a short periode without problems. Thought, I don't like to be woken up every five

minutes.

It seems as we can get home Thursday. She eats very well. Neil had her to eat 40-65ml last night. And she had 70ml three times in the night and morning with me. Maybe she is a night person like Neil and Cecilie. I was kind of hoping she could look more like me.

Another mother said yesterday that Mary Ann looks like Neil. I said that so does Cecilie after my oppinion. She said "No, Cecilie looks so much like you". Then I had the break the news for her: I'm not Cecilie's real mum. So I guess who's looking like who is a matter of the eyes of the beholder.

I better be back so I can get some sleep. I just need to see my own hospital nurse first regarding my new medicine which is working well.

171207 - UK

We are going to the hospital to stay with Mary Ann now. I hope I can use the computer at the hospital once in a while to update her progress as long with ours. It is really a matter of us being cable of taking care of her on our own now. Of curse we can but it must take some time before we figure out how to share the care of her 24/7. I still think it would end up with me having her in the morning time and Neil in the evening. That would fit our personalities well. But what then when we have other things to do? I will go to Cecilie’s mum’s house to talk with Cecilie’s teacher. That is pretty important since it involves Cecilie special reading lessons.
So in this week we can easily have visitors and receive sms or phone calls. That would be a great break at the boring ward.

She is now 2345g, so I guess she puts on enough weight again now. We have moved her to our own room now. So tonight all three of us can sleep together for the first time.
We dressed her in our own clothes - size 44- The shirt is a little long but the trousers almost a little short. Today in a suit from my collegue Annika. Unfortunately I can't add pictures here at the hospital. But I did take a cute on of her with her new clothes on. See the new slide show I made when I was home tonight.

161207 - UK

We have spent the whole day in town. We went to the hospital in the morning where all three (four?) of us watched a dvd together. In the afternoon we took Cecilie to the movies and her and I visited my mum afterwards to exchange Christmas presents. Neil went back to the hospital where we met him. All three of us were out to dine in the evening. We wanted to spoil Cecilie with all her favourite things to do. It was our very last day with Cecilie on our own without Mary Ann.

141207 - UK

Today was the original date for c-section. I thought I would never forget this date but actually it was Neil reminding me. Strange to think about. I was alone with Cecilie today. She said that she wished Mary Ann was still in my tummy. Surprisingly I don’t feel like that any more. Because then we would not know her yet. And I am sure glad to know that fantastic girl.
I have been nervous that I would feel differently about Cecilie when I had my very own baby. And I do. But only in the sense as you do for a girl at 11 years old and a baby. I’m surprised to know that my feelings haven’t changed at all in that aspect to love Cecilie just as must as before. But mainly I was afraid I could give her the same attention. I’m sure it helps that I’m not a totally eager baby mum, who can’t think of anything else but this little perfect creator. Thought, I had to tell Cecilie to watch some telly tonight at the hospital. I couldn’t make Mary Ann eat and chat on with Cecilie in the same time. I felt sad about it. Of curse Cecilie took it nicely. It is a matter of remembering to tell her in a gentle way.

Mary Ann suddenly had a physiotherapist examination today. I’m sorry they didn’t tell us in forehand. Neil was where alone with her in the daytime and I didn’t come before the evening. I would have liked to be there. I wanted to ask something about her movements. Sometimes she pulls herself backwards so her back curves like a bow. Why is that? I have to ask the physiotherapist another day. Neil was told everything was fine though.

She has only gained 35 g since Monday. So now I’m afraid that the plan about next week and us staying there with her will not keep. We all think it’s because she use too much energy on sucking. So the staff gives her tube in the night to save her strength. Of curse we can’t give her tube at home. So we need her to be of the tube first.

By the way. I did ask the doctor about Mary Ann’s funny hole on her lower back. I thought it was that they call sacral cyste. The doctor said it is something called Fovea. But I think he got a wrong Latin word for it. Because if I translate what the doctor explained me to English. It must be something called spina bifida or just split spine. Mary Ann has the lightest one which shouldn’t course any problems.

131207 - UK

Neil went to the hospital alone. Yesterday we were suddenly told she had to go to a heart scan at the other hospital. Her heart scan went fine. But they need to check again 090108 because of a new noise from her heart which scares me a bit this time. There is a long time for January now.
I was sad I couldn’t go with them on her first trip out in the real world. I thought about cancelling my doctor appointment but to when? Next week we are at the hospital with Mary Ann and then we should get her home, so I better get it over with my doctor appointments and so. I need to be able to concentrate on her appointments as well now.
Therefore I dressed Mary Ann in new clothes. I didn’t want her to go out wearing the hospitals clothes saying: “Belongs to Aalborg hospital”. That was important for me. So I dressed her last night because I knew she was not going to be washed before after she has been out. I guess Neil told the staff that it was important for me. Because when I came tonight they had marked her papers with a note for all to see: “It’s important for the mum that Mary Ann wears her own clothes on her trip to the other hospital”.
Just for the record: It’s more important for the mum, that Mary Ann’s nutrition program is being kept as arranged! I wonder if they need at note for that as well. I’m so irritated AGAIN, because again they changed the bottle to one of theirs. So we are back where we started. If she can’t suck on our bottles how can we get home for Christmas then? Most important of all, we have planned and organized everything so we can stay with her from Monday next week. But there’s nothing to stay there for if she still needs the tube because they confuse her with different bottles all the time. The purpose for us to stay with her also in the nights where to feed her all by our selves with our own bottles 24/7. We should just use these days to get to know her routine.
Finally I have found something to wish for at Christmas: a big neon sign saying “Use own bottles!”

121207 - UK

I have never been so angry at hospital staff before as today! I came back to Mary Ann’s room after being in my own with her for several hours to change her. And right there on the changing pillow was a list over all the children at the whole ward and their diagnoses! The note was divided in different fields with name, social security number, their special needs and then – my diagnose!
That gave me a number of objections. What is going on with that note? Why is that note lying there? Where has the discretion gone to? It’s already a railway station in here! That is totally unprofessional! It’s is unacceptable! Please show some courtesy! All the above objections and even some where given to the poor nurse.
A totally other thing is, I do not understand why it is important for all the staff members to know Mary Ann’s mum has rheumatism. It has absolutely nothing to do with Mary Ann’s care, wellbeing or health! I can think of a number of other things they should concentrate on instead. After my five minutes of anger I let it pass for Mary Ann’s sake. I have to loosen up and keep thinking they do take good care of our precious. But the first thing I would like to do after we get her home is to talk with them about different issues. I know that their professional skills are great. I appreciate that and we defiantly need that since we don’t have any skills in that direction. But their ethics are doubtful.

I know that the parents beside Mary Ann is not open about the diagnose they had recently revolving their baby. A lot of people might know or have guessed that I have rheumatism. People can also just ask and I will tell them without a doubt. But the thing is, it should be my decision on behalf of my self as on my child.
The parents just mentioned happened to be someone I know through work. I would not be happy if they read that I have rheumatism or anything else private then I don’t know them any better. I also find is odd that all staff members on the whole ward knows my diagnose as well as a lot of other private things when I don’t even know their name.

111207 - UK

I’m not Tina Campbell anymore. Did I get your attention?
Tonight I called to check on Mary Ann before I went to water aerobics. I told the nurse that I was Tina Campbell checking on Mary Ann. The nurse called Mary Ann’s nurse with the words “It’s Mary Ann’s mum”. Oh my, I’m not Tina any longer. I’m a mum!

151207- UK

Mary Ann has gained 25g more then she had to. She’s now up to 2200g. I measured her head today. It is 32cm and she is now 44cm long. She was 37cm at birth. We continue to try bottle feeding her. I guess the hospital must feel it’s normal to take this long because they stick to the plan with us coming and sleep at the hospital on Monday. The nurse thought we had to stay there to round Thursday. A least we will have the weekend before Christmas home alone with her before Cecilie comes on the 25th. Cecilie has to celebrate the Christmas at her mom’s house. That gives us a quiet Christmas where we hope Mary Ann quickly will settle. In the same time Cecilie has a normal Christmas as before Mary Ann. She had her hearing test today which also was normal. We just need a vitamin schedule hand over. And they promised me I could borrow a crib home with me. Theirs is very functional with up and down buttons. Neil and I have bought different shelves to organize all our things. So now we got a lot more space for Mary Ann’s stuff. We have also made the living room more childproof. I went to the hospital on my own and I will do the same tomorrow. At least Thursday Neil will be there on his own since I go to my family doctor for a check-up (from the neck up, Neil would say here). It is just this standard one 8 weeks after you have given birth. I will also go on some shopping. I hope to find some cloths for Mary Ann which is small enough. I will have a friend on visit at the hospital tomorrow. She will bring Mary Ann some small clothes from her boys. I think I will buy just a little since I hope she soon fits clothes we have from some other friends. Now it’s a good thing I’m not a shop-o-holic like a lot of other women are. As I have mentioned before, into the bargain I’m into that entire baby thing so I expect the cost to be low (being a true Scotch, Neil would have said). You should think I miss Neil since I mention him all the time here. Hem, we just had one day apart here. That’s a rare thing. I think it’s good to have more days apart here in this week. Not because we need it, but just because we can. From Monday we will be in each others throats (again Neil expression) for a looong time. Well onto round March/April when I start work again. It feels as long time now. But I’m sure when I come to the date for starting working again it feels like yesterday we brought Mary Ann home.

101207 - UK

Mary Ann has gained 25g more then she had to. She’s now up to 2200g. I measured her head today. It is 32cm and she is now 44cm long. She was 37cm at birth. We continue to try bottle feeding her. I guess the hospital must feel it’s normal to take this long because they stick to the plan with us coming and sleep at the hospital on Monday. The nurse thought we had to stay there to round Thursday. A least we will have the weekend before Christmas home alone with her before Cecilie comes on the 25th. Cecilie has to celebrate the Christmas at her mom’s house. That gives us a quiet Christmas where we hope Mary Ann quickly will settle. In the same time Cecilie has a normal Christmas as before Mary Ann.
She had her hearing test today which also was normal. We just need a vitamin schedule hand over. And they promised me I could borrow a crib home with me. Theirs is very functional with up and down buttons.
Neil and I have bought different shelves to organize all our things. So now we got a lot more space for Mary Ann’s stuff. We have also made the living room more childproof. I went to the hospital on my own and I will do the same tomorrow. At least Thursday Neil will be there on his own since I go to my family doctor for a check-up (from the neck up, Neil would say here). It is just this standard one 8 weeks after you have given birth. I will also go on some shopping. I hope to find some cloths for Mary Ann which is small enough. I will have a friend on visit at the hospital tomorrow. She will bring Mary Ann some small clothes from her boys. I think I will buy just a little since I hope she soon fits clothes we have from some other friends. Now it’s a good thing I’m not a shop-o-holic like a lot of other women are. As I have mentioned before, into the bargain I’m into that entire baby thing so I expect the cost to be low (being a true Scotch, Neil would have said). You should think I miss Neil since I mention him all the time here. Hem, we just had one day apart here. That’s a rare thing. I think it’s good to have more days apart here in this week. Not because we need it, but just because we can. From Monday we will be in each others throats (again Neil expression) for a looong time. Well onto round March/April when I start work again. It feels as long time now. But I’m sure when I come to the date for starting working again it feels like yesterday we brought Mary Ann home.

091207 - UK

I don’t really feel like writing today. Today one nurse felt it was better is just one of us feed Mary Ann for some days in order to find a good routine with the feeding bottle. That would have to be Neil then since he has the maternity leave and not I. First I agreed about it. But now I don’t because that would mean that nothing is left for me to do with her but look at her when she sleeps. I just can’t give that up as well. Now I feel as a selfish mum. Before now I have felt that I made decisions after what was best for Mary Ann and not for me. But I just can’t do that now. Therefore Neil and I decided on our way home that we both feed her. Then we find a favourite feeding tactic each and try them both onto we find the perfect one we both have to stick to.
We still try out different nipples for our bottle. We have started to give Mary Ann food every 3, 5 hours instead for every 3 hours. We hope that will make her more eager to take the bottle. But she still seems as tired as before.

081207 - UK

Mary Ann was on the scale again today to make sure that she’s get enough nutrition now she has to ask for it and eat it herself. She has lost weight! Down with 55g to 2125g. That’s not good. It’s a lot to loose in two days. So back to the scratch; she has to have the tube once in a while again. Neil and I decided that she should try the bottle for max 30 minutes because it exhausts her too much. After those 30 minutes we give her the rest of the milk by tube. I just hope that the staff will do what we have decided. Sometimes they don’t because they have another opinion, they didn’t know what they should do, they didn’t read our instructions or … ? These days we feel frustrated. Every time they change our ways of doing thing we start from the beginning, we feel. Of curse we don’t but it sure feels like it. Now they tell us we can’t get her home for Christmas. Imagine having to celebrate Christmas at the hospital now when we are so tired of being there.
A good thing: She took all her vitamins on a spoon yesterday. That is also what she should do, when she comes home. So some things indicate that she’s ready soon. Another good thing. One of our friends invited us for dinner. It was so kind for her, especially because she is very busy her self. It gave Neil a break with his cooking every day and our both some nice quality adult time with friends. We are a little afraid that we will miss out on some good times with friends. We don’t have the time and energy to be the ones who keep contact as we normally do. So it was very appreciate that she had invited us. We even got some other kind of food home, she had prepared for us. So now we have dinner for two other days waiting for us in the freezer for late days at the hospital.

071207 - UK

I made a little sound with my tongue yesterday. Mary Ann still likes that sound. She like it so much that she lift her head up to my face when I pull my head back. It’s like she want’s to follow my face.
Have I told you that she has got baby fat now? Maybe you have seen her double chin. But she also got rolls of fat on her upper thighs. As I mentioned the other day she sure is looking more and more like a baby now. The young birds’ days are over.
She had taken all her milk by bottle since last night. So the time for us to be hospitalized with her is very close. That will be when she’s only using the bottle for some days. We will have to stay there unto we understand her routine. I think we will understand it quickly because we are with her for several meals in a row. Other mums are maybe only there for one. But the days are different with her now and we need to understand the new structure as well. Before we knew that 9.30am we could curdle her unto 10am. Then we had to change her nappy and then give her food and then it all started over again at 12.30. Now we can sit for hours waiting for her to let us know she’s hungry. In the meanwhile she should have her rest. She’s more tired now when she has to work for her living. So as soon as she cries for food we change her and try to give her the bottle before she falls a sleep again. When I gave her the bottle today she took it right away. I wanted to cry because I felt so happy that I understood that she cried because she was hungry and acted upon it. I think we have found a good bottle for her. We found that she prefers a rubber nipple on the feeding bottle. She doesn’t even spit milk out as before. Oh my, things are going well.

061207 - UK

I find it so hard with letting Mary Ann notify us when she’s hungry. The thing is that she doesn’t notify us. Not here in the beginning at least. I think it’s normal, but it’s still hard. I’m afraid she doesn’t get enough to eat. For more than 9 weeks it has been the most important thing, to make her eat a specific amount every day. And now we are supposed to stop controlling it. That is hard. But they will give her some in the night by tube, if they feel she is getting too little nutrition.

She is up to 2180g now. We let her eat by our own bottle now. That means that we have to try different types to find the right one for her as well. That is also difficult. Especially when she doesn’t feel like open her mouth. But I’m glad we’re not alone on the task. It’s a lot easier at the hospital with professionals. Though, I dream for the day where they agree about their advices for us. It’s frustrating to have new feeling for every change of watch. I will count on the day where we as parents feel more secure to take the advices we agree upon and tell them to stick to those. That day will come quicker then the day where they agree with one another.
I talked with a friend today about baby passion. I have never had this desire of having a baby. But I have had a dream of a family on my own. I dreamt of having a child I could spoil with love, raise with/and give confidence, security, strength, boundaries and happiness. It is therefore typical for me, that I see her as my daughter, our little human not as a baby. But it doesn’t change the fact that I of curse want to give her closeness, love and cuddle. She is my child and that is what she needs from us. It’s the stage she’s in. I just enjoy the moment. The moment is now that I can spoil her with cuddle. Way to quick she gets so old where she won’t allow me all the cuddles. But I also do look forward for the strange where I can do something else but see to she’s getting something in by eating and getting something out by pooh … and sleep.

051207 - UK

It seems like no one knows anything about Mary Ann’s sacral cyste. I’m not that surprised about it since I had big difficulties to find some in Danish about it. So maybe it’s very rare thing. I will have to ask the doctor tomorrow. Her nails have to be rubbed off while they are wet. We will try that tomorrow when we give her a bath. She smells of baby now and not of this strange smell that the whole ward is permeated with.

I went to the rheumatologist today. I will start on some new medicine to relief the pain I have more and more. The pain has increased since I use my arms in another way now holding Mary Ann. I have a headache like never before and pain in my back, neck and shoulders. Nothing seems to help. I can only be given massage once a week by my physiotherapist. I need at least twice a week. I still go to water aerobics four times a week. So the only thing left for me to do is taking server medicine. The medicine also puts a stopper for the development of the rheumatism itself. I also need that desperately. Now I’m not pregnant anymore, therefore I will start already today. The doctor gave me some Prednisone which I only can take shortly because of all the side affects. In January I will have to start something else. In the meanwhile the doctor will test me to make sure I’m healthy enough with heart and lever to take Methotrexate from January. I look forward for the Prednisone to work in few days, but dread that I will put on a lot of weight like last time when I was teenager. On the other hand, I also thought I would put on a lot of weight during the pregnancy which I didn’t.

041207 - UK

We try a new approach from today. We let Mary Ann have all the milk by the tube. I’m afraid she doesn’t get enough nutrition by sucking. She spills a lot and sometimes she does even get all the milk she is suppose to because the nurses find it difficult to measure precisely 44ml as she should have now. If she’s not totally ready and eager for sucking her milk I rather wait onto she has more strength and ardour for it. So we let her have it by tube the next days unless she shows ardour for sucking. If she is wide-awake we would also try to let her have the bottle.
Today the nurses guessed that she might come home for Christmas. I don’t care about Christmas this year and I just want her home when she’s ready – no matter the date. Another nurse said that Mary Ann still has this typical premature look, so you could tell that she’s not on her way home just yet. Strange since I don’t think she looks premature anymore. I think she looks like me. Ahem, does that equals that I look unmature?
We had visit from my colleagues today. It was so great to see them and hear news from work.
The other day I found a little funny hole on the lower part of her back. The nurse said it was a survival from older age where we all were fishes or apes, as I had guessed. Some people have it and it will stay there her whole life. Many times it is genetic. But I don’t have it nor does Neil. I did a little search on it on the internet. It looks like it’s what they call sacral cyste. But hers is closed, so it shouldn’t do any harm. They write about it as it might have been a twin. I will ask tomorrow.
Bring you back to the planet Earth again: she needs to have her nails cut, but not by me. I wouldn’t dare!

031207 - UK

Today we had the change to miss one another Neil and I. For the first time I went to the hospital on my own. I was lucky with a parking near by and I still have my resting place next to Mary Ann. The nurses helped me today instead of Neil. It was important that Neil had a day on his own, I thought. Especially since it’s so close that we have to be hospitalized with her. He will soon have a lot of tasks. I’m afraid the snow is coming soon. That represents a lot of extra challenges for me going out. So if Neil should stay home it better be now before the snow comes.
I got a good routine with her now. I gently wake her up when I come in the morning. We take her to the changing table and “have a word”, as Neil calls it. We tell her that now it’s time to wake up because she has to eat to grow. We give her a lot of kisses and have her in a seating position. We try to hold her focus in different ways, so she stays a wake. I sit her in front of me after the change with the nursing pillow round her. I don’t give her the blanket or duvet since I don’t want her to be comfy. She has to feel that now it’s working time. I find it difficult to make her eat. Strictly it’s most difficult to make her open her mouth and have her tongue down from the roof of the mouth (the palate). She eats well enough even though she spits a lot of milk out. But she is so strong in her muscles around the mouth that it makes it very difficult. She keeps her mouth tight together. I try the trick, to gently pull her lower lip down. Normally the babies’ tongues will come down shortly after. But not with Mary Ann. It takes so long time and then the milk gets cold. In the time for the milk to warm again, she has fallen back to sleep again. It’s always a dilemma. Should I have the milk warm again and she falls a sleep or should I just give her colder milk? Tonight she had her last milk cold and she took it all. So I triumph her in the end in spite her strong willpower!
She is now 2055g so I guess she does eat some of the milk.

021207 - UK

I’m doomed. I’m a selfish mum. I don’t want anyone else to take care of her anymore even though I know they do a better job then I can for the time being. I want her home now. Today I feel frustrated. It’s very difficult some days to organise everything with Mary Ann at the hospital and Cecilie and the dog at home. Actually it felt like chaos today. A friend had been so kind to have Cecilie for a sleepover with her two girls. Then we could have more time at the hospital with Mary Ann. But we had to drive Cecilie back and forward several times anyway both today and yesterday because Cecilie had misunderstood when she was supposed to go to football and because she forgot her things twice! That meant that we were totally stressed with Mary Ann at the hospital for the last meal. Unfortunately I’m sure that Mary Ann could feel it. She didn’t want to eat by bottle tonight and she was more difficult to calm down. I feel terrible about that. She did eat most by bottle on the earlier meals. So she is still in progress. Again today we spend some hours in my bed together. We both enjoyed that. For the second time she had to change into a bigger size nappy. Actually she is not big enough for a bigger nappy size wise but because of the large amount that is coming out of her small body now, we had to give her a bigger nappy from now on. She now uses the newborn size. She must be more than two kilos now since she was 1995g yesterday. It will be interesting to weigh her tomorrow.

011207 - UK

Today has been the most wonderful day with Mary Ann. She has gained a lot of weight now again. She is up to 1995g! So the last two days of extra feeding became her well. She has gained 117g in these two days instead of expected 50g. She doesn’t seem as she has a cold any longer. She must have a strong health then, since it didn’t take a long time for her to be okay again.
We had the opportunity to be alone the three of us in the room I surprisingly sill have with a bed. I lied there in the bed with her next to me and Neil in the chair besides the bed. We stayed there for a couple of hours on our own. I feel more and more connected to her in line with the time I spend with her.
So it was very hard to leave her tonight especially since she was right a wake when we had to go. From the beginning people always asked if it was difficult to leave her behind when we went home. I haven’t felt it was dreadful difficult, since I didn’t feel/understand she really was mine. I felt a little left out. Yesterday I told Neil that I might not be feeling like Mary Ann’s mum before I had done something to deserve that right to be this perfect little creator’s mum. Maybe I am this mum now from this moment, because I sure don’t like to leave her behind anymore. I feel split now. I want to stay there every night. But in the same time I also now it’s better to try to enjoy these weeks where we don’t loose any nights sleep. I function a lot better here in my house and we need to be in our own house as much as possible because of Cecilie and the dog, which we don’t have anyone to take care of when we’re not around. If we had someone to take Tiree out on walks I would defiantly stay longer at the hospital. I truly need to think positive today. Therefore I will now enjoy, I can use my computer, watch some TV, and sleep in my own bed …

301107 - UK

Today I had her on my own. I could go to my room with her since they dropped her monitor now. She had all 50ml in her bottle by the nurse in the night. With me she had most of it in bottle every time and the rest round 15ml in the tube. She is doing well. I gave her up to 55ml today. That was to make sure she gets enough when she spits some of it out. And to make sure her weight it going up they check her on the scale already tomorrow again. We have to buy her bottles now so she can get used to ours before she gets home.
I’m sure she has a cold. She was sneezing a lot and I could wipe her nose several times. I was afraid she didn’t want to eat then. But no worries in that department. I changed her crib and when came a friend. She mentioned that Mary Ann looks like me when I was young(er). Of course I had to check my baby pictures when I went home.
What do you thing? A recent picture of Mary Ann and one of me when I was round 5 month coming right up.

By the way, we also had a visitor the other day. That was my old assistant. She came with Mary Ann’s first and only shoes. That was a great idea. It’s easy to get second hand clothes from friends, but shoes you have to buy from new. So we need that.
Mary Ann’s belly button is getting smaller and smaller now after she dropped the umbilical cord. She is beginning to have small signs of eye lashes. I wonder when she will have eye brows. I found a way to make her burp today. I have never tried that before. But now I learnt how to see if she needs that air to get out. Before I was so wise, she took care of it by herself with a big fart. That’s my girl (Neil would have said if he was there)!
















Tinas slideshow

291107 - UK

Urrgh, she has lost weight down to 1875g because of the feeding by bottle. Just forget about the home coming date 26th of December. I gave her 50ml. She took 35ml in bottle and the rest in tube. I want to be sure now, that she gets enough milk. I feed her plenty and hope that will do the trick. She eats everything we give her, so why not?

281107 - UK

Neil had to go to the hospital on his own today. I had an appointment with my family doctor. My blood pressure is now normal. So the last pill is ditched. I also played “being on normal pregnancy leave”. That was great! I could spend one hour making her room nice with the last things. I pretended that I was still pregnant and making the room nice for a new baby boy/girl. The pretend lasted 5 minutes. Then I realized that I was making it practical for Mary Ann. I was thinking how I held her with a fabric diaper underneath her. That is the way that I lift her up the best. Therefore I organised the room with a lot of fabric diaper near the changing table. I also found the little bathtub with a special little chair for her to sit in. In that way I will not have any problems bathing her myself. We have borrowed these things from friends. So in reality I was defiantly realising that she was here our Mary Ann. Maybe this doesn’t make any sense, I just needed that pretend for a short while, thought.
The blood test shows no sign of too low blood percentage. Therefore she will not get any blood. Mary Ann had a couple of bottles with 10ml milk. The rest she had in the tube again. It’s so close now, so I’m eager to get her to eat it all in bottle. But we don’t get anything out of pressure her. We will have to wait. I’m counting in the meanwhile: she is supposed to gain 25g a day. She can get home when she’s 2500g. Tomorrow she must be around 1900g at least. That imply Mary Ann can get home round 26th. But if she gain round twofold as she used to it will be quicker. Since she will gain less now she’s eating from bottle my long term feeling that she should be home already middle of December seems far-fetched. Humph, maybe I should just stop calculating as well. Now I wonder, what is wrong with the old fashion way: enjoy every day God has given us with her – at the hospital or at home.

271107 - UK

Her food is raised to 40ml. He had round 7-9ml in a bottle today. In the morning the nurse gave her it all through bottle. So she was tired when we came and she has been sleeping the whole day while we were there. That was also why we didn’t give her the bottle every time today. We tried but she was too exhausted. The nurse today said it’s perfectly normal for babies to gain a little less weight when they start eating them self. That was nice to know. As long as she doesn’t loose weight it’s fine.
We had her in bath today. Because of her diarrhoea we had to change the bath twice. Poor girl, she was not happy with us.

The picture of today is me trying to comfort her.

They did stop her lacunose yesterday. Her salt medicine is reduced to two times a day instead of four since the salt level is better. The hemoglobin percentage is a little low. They will test it again tomorrow. If it gets too low she will get a blood transfusion. Her bone marrow might bee able to produce blood on her own now. Just imagine, that small body being able to do all that.

261107 - UK

Mary Ann is now 1880g. She didn’t put on as much weight as she was supposed to (up to 1905g). That is her first time not to gain more than expected. I feel it’s because they insisted to give her lacunose because of slightly constipation. I felt her constipation was so insignificant that it shouldn’t been necessary. I was afraid that it would end up with diarrhoea and so it did in the last days. I know personally how easy it can turn. But I also realize that in spite of my more than 34 years of experience with the hospital service, I’m not familiar with preemies and their care. So I try to sip it sometimes. Today they decided to take her of the lacunose. I hope that soon with help with her red bottom. She still gladly eats some of her meals from bottle. Oh my, it’s so close that everything is going perfectly = we can get her home!

As I mentioned before, caffeine reduces sleep apnea in premature babies. Staff want’s to stop this medicine now and see if Mary Ann can do without it. If she can, they will also take the last monitoring of her = SOON SHE IS ALL MINE - MY BABY!!!

Sleep apnea is a serious condition where breathing stops or gets very shallow while asleep. In premature infants, this condition is called apnea of prematurity (AOP).
It’s normal for all newborns to have pauses in breathing, but babies with AOP have drops in heart rate before 80 beats per minute that causes them to become pale and bluish. Premature babies may resume breathing on their own of may require help. Although common in preemies, apnea of prematurity can have significant health complications if not diagnosed or treated effectively.
Premature infants receive medical care for AOP in the neonatal intensive care unit where they get help breathing with the help of ventilator and possibly some medications to help their lungs mature.
Surprisingly (to me, at least) one of the common treatments is caffeine therapy. Caffeine seems to stimulate the respiratory system of premature babies and help them breathe better.
A study that came out of New England Journal of Medicine (NEJM) last year found that caffeine is effective in as fast as two days after treatment and the babies stayed on the ventilator one week less than those who didn’t get the caffeine treatment.
Does caffeine have a long-term side negative effect on the infants? A follow-up that appeared this week showed that caffeine therapy even significantly improved the infants’ survival without any neurodevelopmental disability at ages 18-21 months. The therapy also reduced the risk of cerebral palsy and cognitive delay.
Although the study by Dr. Barbara Schmidt of the Caffeine for Apnea of Prematurity Trial Group is still on-going, these are reassuring results for pre-term babies that develop apnea of prematurity.

241107 - UK

Hurray she had her first bottle today! In the morning she seemed very interested in the dummy. She sucked on it like never before. And when I changed her, she pulled the tube out again. So for fun, I said: “Fine, just shows us that you are ready for the bottle and you don’t have to have the tube in your nose again”. The meal right after this change, she sucked happily on the dummy again. That made me think; maybe she wants the bottle now. And she then had 10ml of the 38ml in the bottle. The next meal she had 15ml in the bottle. She was totally washed out after that. I took the funniest picture of her. I have never seen her like that before. But on the other hand she has never before had to work for her living. It would make any lacy body tired. I know that for a fact.

I also bathed her for the first time. Neil bathed her the very first time the other day. But today it was my turn. It has been a great day for me with Mary Ann! Imaging that it is our fifth year engagement anniversary today. Nice way to celebrate the day.

She has dropped her umbilical cord now. That’s in the area for okay of dropping. At least she didn’t drop in her oxygen level at all today. Neil also watched the monitor all the time while I feed her. I can’t see the monitor when I sit with her. So I moved her around when Neil told me the level was starting to get low.
My mum called this evening to check on her granddaughter and so did Neil’s mum. Neil’s mum has also sent nice pictures of the two grannies with Mary Ann. I will scan the pictures and then I can put them on the blog some day where we don’t have any photos our self. But I added some on the 181107. So check the post from that day as well. I also added labels so you can click on Video if you just want to see her and skip all my many words.

231107 - UK

The food quantity is raised to 38ml. She dropped in her oxygen level twice today. Tomorrow we want to check their record to see if she is dropping more these days then some days before. We feel that she is. Sometimes you just feel that without it being the fact.
The strange thing is that they did an eye test on her again today. They told us that they couldn’t do it properly yesterday. What now? That was not what they told us yesterday. We were then told that she did well on the eye test and today they came and did a new one because they were not sure on the result yesterday because Mary Ann can kept her eyes closed (I guess the clever girl knew that was coming her way – eye tests are awful). Nevertheless today the staff told us the test from today was fine. How can we trust that when they didn’t tell us the truth yesterday? I defiantly want to ask them not to keep anything from us again.
Today have been so filled with all my hopes for Mary Ann. I hope everything will come easy to her but not too easy. I would also like her to know that life is a struggle sometimes. I gather that she already knows that since she already had to fight for life – literally. I’m also filled with all my longings for her to come home, open her eyes more, walk, talk, and so on. I look mostly forward to discover her personality and see which eye colour and hair colour she will get. To understand that she’s really mine! I have tried to look at other babies the last days. I feel she look like any other baby. That’s a good thing compared to before, but still I would like to be able to see a difference from other babies now.

ABC Baby Poem
A is for angel, sent from above,
B is for baby, smothered with love,
C is for cute as cute can be
D is for diapers and changing them for me
E is for everything baby and more
F is for father walking the floor
G is for glad you are finally here
H is for hiccups that are funny and dear
I is for icky sticky messing
J is for Jesus and His blessing
K is for kisses and kindness and keep
L is for Love, so wide and deep
M is for Mommy and her loving arms
N is for Never coming to harm
O is for oat cereal and later Cheerios
P is for precious little fingers and toes
Q is for quiet, baby is sleeping
R is for relatives, always come peeping
S is for sleep, but not for your folks
T is for tub and all those long soaks
U is for unconditional as in love from your parents
V is for very active as you will soon merit
W is for wakeful, watchful and wise
X is for the Xtra special light you brought to our eyes
Y is for you - who is as bright as the sun
Z is for zest of living that you gave us, little one.

221107 - UK

She did it again today. She forgot to breath because she was so relaxed sitting with us. I don’t like it but nothing to do about it. Most unfortunately.

The good news: she is now 1805g. So she has gained 25g more then she had to. The eye specialist found her eyes normal. Neil got the camera working. We found a cheap cleaner. She will start when our present one stops. Tirees’ barking seems better as long as we exercise her more and more. It is a stressing problem specially before getting a small baby home in the house. We finally got a date for christening Mary Ann. It will be 13 of April. Those how know me well, will properly say it is typical me to plan things way too early. But it’s not too early when fare most of the family live abroad. I’m on my way to water aerobic…
Look, I have been good. I try to focus on the positive things and not Mary Ann dropping in the oxygen level.

211107 - UK

Mary Ann frightened us today. Her oxygen level felt to 60! It’s supposed to be 100. The nurse said that is because she’s still immature. No, that can’t be the reason, I thought. Mary Ann is so perfect and strong. How can she still be immature? The nurse said that we should think about how few weeks old she is and how young she was when she was born. That is right of course. But we just see her as big now and so strong.
The nurse also reminded me that it’s normal that they do well and suddenly something happen so it seems for the parents like they have to start all over again. But often it’s just the baby trying to show he/she is the boss for few days.
After the scare she was doing fine again. She was so relaxed and lovely to watch. Neil got the exchange camera but it didn’t have any new batteries in. Instead I found a picture of another little preemie in her/his week 34: http://pediatrics.about.com/od/newbornsandbabies/ig/Premature-Babies/34-Week-Preemie-in-the-NICU.htm. It is easy to see how well Mary Ann is doing then compared to that picture of another preemie.
She is now in week 34+4. That means that round next week her oxygen should be stabile. When it has been stable and she doesn’t need caffeine for some days, they will take her of the monitor. I have been longing for that. Although now I’m a little nervous about it. The staff would never take the monitor of her if they were not sure it would be okay for her. Let’s see what’s going to happen with the monitor next week.
We have tried to exercise her sucking today with success. I managed to give Mary Ann her dummy. She had it for half an hour, but only because I held it for he. She was not so interested to hold it herself. It is important that she learn to suck. The quicker she learns to suck to quicker we can get her home. Therefore I gladly hold the dummy for the little miss.
I had my sick leave papers taken care of at work this afternoon. Neil gets all the maternity leave so he will not be back at work before August/September. But that means I have to be back 23 of March. I was so sad when I heard that I so quickly have to be back. Hence it will be hard to start work again. Yet, I still feel it’s better for him to have all the leave. Also since I still want/have to spend time on exercise and own hospital visits. I went to water aerobics this morning before the hospital. Feeling great because of the water aerobic this morning made me see things in another perspective. I started to plan how I can do it all still plus doing something with Mary Ann. I found that there is a water aerobic class just before baby swimming every Wednesday. A kombi solution is a good idea. It is more difficult to cancel the water aerobic class one morning when I know that that means that Mary Ann is not going either. Normally I didn’t need tricks like that to make me go. But it might be more difficult when Mary Ann comes home. I’m sure I rather sit with her at home then when I don’t work.

201107 - UK

Today she had 36 ml in 15-20 minutes. She eats well, I must say. I have this feeling that she might be a morning person – like me. At least I hope so. She seems very a wake in the morning and in the afternoon and evening, she sleeps through all the noises and movements.
She still cries when we wash her. She doesn’t like that at all. But she enjoyed the whole bath yesterday.

I add a picture from yesterday’s great session again since our camera still doesn’t work.

Neil had charmed his way to get a replacement camera. I hope he will get that soon. I don’t know anyone but Neil who can chat with people in that way. Imagine that he get a replacement camera from the shop for free while ours is being fixed. I have never heard anything like it.
Her eyebrows are beginning to show and she now has small nipples. It’s just a little pink dot, but it must be nipples on their way.
I felt like a thief doing a runner when I tried to take her out of her room. It is first time for me to be on my own with her and without monitoring. When I sat with her, she tried to pull out her feeding tube 2 times and the third time it succeeded her. I was so surprised that she could do it so quickly. It only took her 2 seconds to win me and get the whole tube out. She defiantly knew what she was doing. She has will power. So since she was without the tube and I have learnt to disconnect the oxygen monitor myself, I tried to take her out on the hall. I wrapped her in her duvet and held her close to my breast so she would not feel the strong light too much or be scared. I took her to my room for just 10 minutes. Of course it was not dangerous for her in any way. We also take her of the monitor when we change her nappy. But still I had this feeling that some nurse would come running and ask me to put her back. I look forward for the day when I really understand that she is mine for keeps!

191107 - UK

Yet another good chat with the staff today. They kind of promised us that we could have a family room for both Neil and I when we are hospitalized with Mary Ann. They asked us how we prefer things. That was new. It’s a long explanation, so the short form is that a lot of things were planned for our satisfaction. That was of course great.
We had our first talk with the health visitor. That took two hours which were well spent. The funny thing was that she is also Cecilie’s health visitor at Cecilie’s school, so we had already met her before. She asked us how we had experienced the pregnancy, my sudden illness and the dramatic c-section. We also talked about our daily life at home and at the ward. The health visitor called us a very dynamic couple. I don’t know that she meant with that but I reckon it’s a good thing. So I think we had a good communication. I have looked forward to meet her. Especially since I never ever really had any meeting with the midwife. Everything went so quickly with my pregnancy. So I saw this meeting as good opportunity instead of the mid wife.


Mary Ann is now 1705g. That is a weight gain at 160g since Thursday. She was supposed to bee 100g heavier. So she is still doing very well.

AND she had her first bath today. She didn’t cry as we expected her to. She had her eyes right open and was a little unsecured about the whole situation. But she didn’t say a word/sound.



I ended the day with water aerobic again! Hurrah, for I have really missed it. My plan is to go 3 times a week again.

181107 - UK

My mum called this morning. She wanted to come today. Luckily we didn’t need to change any plans for that. She wanted to come at 3pm and we would bee there the whole day from morning.
At least I would because Granny had to leave us today.
Before she went to the airport we had some photos taken with Granny’s camera. Ours has broken down, urrgh.




We were meet with flags and a new picture today. The staff congratulated us with her 1st month birthday.







Cecilie wanted to make her footprints like other kids have made theirs. So the nurse helped Cecilie doing that.



Mary Ann was feed manual for the first time today. It took round 45 minutes the first time because of the Grandma’s being there with us as well. So there was a little confusion. It only took me around 35 minutes here the last time. She takes it all. It's more me being a little nervous if I feed her too quickly.

171107 - UK

Great day we had with Granny at the hospital. It was fantastic to see Granny with Mary Ann. Also a little odd though. Nice to think about that this little baby I had in my tummy can become so important to another family. It felt a little odd unto I realised; Oh yeah, it is also my family. One girlfriend told me that Cecilie must be feeling the stronger bond between her and me after having Mary Ann in our life. Cecilie has been so much more affectionate towards me since Mary Ann was born. Just like before she became a pre teenager. That bond I also suddenly felt today.
I missed Jim. I would love to see Granddad with Mary Ann as well. We talked a lot about him. What he would have said and so. Cecilie changed her nappy and sat with her. I sat with her and Granny sat with her. The pour child got very tired. She got her photo taken by both Neil and Granny. One for Auntie Julia, one for auntie Cath, one for uncle … Oh yeah, Granny think that Mary Ann looks like Uncle Robert as a baby!
We let Mary Ann's sleep and went to town with Cecilie unto Mary Ann’s next feeding time. In town we let Cecilie decide the route. She spends some of her Christmas money. In the afternoon she and Neil went to town again when Granny and I stayed at the hospital. In the afternoon Cecilie spend some of her money again - on Christmas presents for Mary Ann, Granny and Granddad. What a nice thought. We had dinner at a nice steak house before we went home.
At the house we talked about summer holiday plans in UK. We certainly want to take the trip to England in July/August as planned. When I see Mary Ann with Granny I’m thinking how important it is even though it will be a slightly importunate. I will discuss with Neil and then we will start making plans.

161107 - UK

I got a little irritated with the hospital today. First time when I saw they hadn’t clean Mary Ann properly in the night. She still had stools left under her nappy. That was yucky and unacceptable. Of course I told them that. That makes me sad. If we can’t trust they take good care of her, it’s difficult to go home every day. The next thing was that they took a blood test today they didn’t have to take. I asked them yesterday if it was not correct that they didn’t have to take it. They never gave me any answer. Today they took the blood test and I asked again. THEN they found out that they didn’t have to. I was irritated about that. That pour little girl has already been through so much, so I asked them to be sure next time.
But Mary Ann did so well with the blood test. She made a little complaint about all the fuss. That was it. Luckily her veins in the arm was good in spite her small size. Before they had to take the test from her foot and that is more painful. I was happy to learn that she didn’t have problematic veins like me. They do see that pretty often; if the mum has problems like that, the child has as well.
I feel surer that her hair is starting to get red. Just like Neil’s beard, he is growing now on his upper lip. Let me just mention here that I hate that beard and I’m not too pleased about the colour of her hair either. I hope I’m not right about her hair! Never the less I love them both no matter what.
They again tried to give her food in a shorter period. Now she is down to 45 minutes. They do that in order to make her ready to take her food in only round 15-20 minutes like other babies. Every time they try something new with her, she just adapt to the changes.
Neil’s mum will come from England to night. We told Cecilie this morning. I was up earlier because it is Cecilie day every second Friday. Then I make English breakfast for her (and Neil). She decides what to have for supper, so Neil is making hamburger right now. Then we watch something she like in the telly together or she decides that we should play a game or the like. We have plenty of things to do before Granny comes. Hopefully she will not be longing too much seeing Granny then. She is as always very eager to get her Granny here.
I look so much forward for Granny to meet Mary Ann. I kind of hope that my mum will come as well. My mum had it planned two times before, but something came up. So I hold my breath and see if third time is the charm.

151107 - UK

Four weeks old today! I think her 1st month will be celebrated on Sunday. I have seen other babies having their photo taken by the staff and they have it on a special birthday paper. Okay down to business; Mary Ann had of course put on weight again today. She is now 1545g. She was only suppose to put on 75g but is now 135g heavier. The boy next to her had only added small 75g to his weight. I’m ‘so happy that we have Mary Ann instead - for so many reasons.
Again today there was a new nurse on Mary Ann. I showed her the letter I have written for Mary Ann about all our hopes for her, how much we had planned this for her sake and the chock that nothing has gone as planned, our thoughts about it all, her family in UK for whom she’s also very precious, the frustration we had in the beginning, the pressure we felt from the hospital and so on. The nurse was very touched and even said Mary Ann was awfully lucky to have us as parents. Oh my, I do hope so. The letter is also meant for the staff to read. I want them to know exactly this amount about us. No more no less. Especially because it was important for me to show them, that we did plan a lot about this baby. The plan was made so I could cope with the tasks around her. Now they could only see all the “flaws”. There were suddenly so many things I couldn’t do at the hospital. Because nothing in there is accessible for me as at home. I didn’t put all these words on this topic in the letter. Just that she was long planned for. I think they can guess the rest. Or else it doesn’t really matter. It was enough to make me fell better about the troublesome situation I suddenly found me self in, in spite all my efforts. And that was the intention.
I went to the doctor again this morning. My blood pressure is getting better. I withdraw slowly from the medicine. In the afternoon Neil and I had some shopping to do. In the meanwhile Cecilie exercised the dog. When we came home I took Cecilie and Tiree on a bike trip round Vodskov. Cecilie enjoyed that, showing me all new roads. Cecilie has made another (short this time) letter for Mary Ann; “looking forward for having you here with us so I can hold you as long as I want to. I already love you so much. I have looked forward for being your big sister”. Her first letter was read laud when I sat with Mary Ann. After I read it I hang it up over her crib. You can see that on the picture from today.We did her homework and then she had to go to football. We also had a workman to look at our garage door. While Cecilie was at football Neil and I had a peaceful moment to watch a DVD. I felt a sleep though. Cecilie came home, we had Neil’s lovely dinner, she had a shower, I write this and then washing and making ready for tomorrow and next to bed. The days fly away. That is truly great. We would not feel the weeks at the hospital so long then.