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.

141107 - UK

MAC was moved to the corner of the room this morning. Great for us because it is less noisy then in front of the door as before. The whole day pasted with visitors today. Neil sat with MAC and I bathed her. Then the day was over. We didn’t even go for lunch. We grab a sandwich on our way home to Cecilie.
I did write a lot about Cecilie yesterday. But I have to mention her here again. She has made the must lovely story as a letter for MAC. I snuffled my way through this story about our family. Cecilie wrote (directly translated from Danish);

“Here’s a little story form me your big sister to you. I’m happy that you are my little sister. That you are well. I mostly look forward for you to get big and strong. Then it will be fun to be with you. I have almost all the time been to see you. I stick my hand in(to your incubator) when I want to touch you. You are lying in an incubator and you are lively. You turn around many times every hour and you are a strong little girl. I play football I’m good at it. Your dad is called Neil. He is a chef and your mum is called Tina and she is very wise. This is me, Cecilie L. Campbell. It is me who has written all this. I go to Vodskov School. I look forward for you to get home to us. Then we become a family. We also have your room ready for you. In the class we are 8 girls and 16 boys. We have a dog at home called Tiree. I live two places. I live at the country site with my mum. I have a little sister called Ida and a little brother called Lasse and a big sister called Tea and a big brother called Dan. And I have many animals. I’m 11 years old. Your parents make fun with me and I’m sure they will do that with you too. We have the best neighbours in the world. I’m in 4th grad class A. That’s the best class. We have the sweetest teachers. I go to reading training, that help’s me read and write. I have to go to handwork class and visual art class today. You came out of your incubator yesterday and now you lye in a crib and you still have your eating tube on”.
I found the letter so touching because: 1. just imagine: Cecilie’s intention to do something like that by her self. Who does that beside Cecilie as an 11 year old? 2. She wants to spend time to write this 3. All the kind thoughts about our family 4. Writing is very difficult for Cecilie. That makes it even more special.
It was a treat to read that story.

131107 - UK

MAC has been okay lying in the crib without warm water mattress and without the protection from the sounds as in the incubator. So that is also working out fine. She now has 30ml formula 8 times a day over 1,1/4 hour. The nurse in the night had been taking a new photo of MAC simply because MAC looked so cute with her eyes wide open sucking on her new best friend. A very big friend ...

I simply can’t explain how fantastic it was today sitting with her without all the cords. I could hold her in my arms, walk around with her, have her in front of my face, make contact with her face to face, look at her for hours and so I did. I just wanted to cry in all those hours I sat with her. It was a totally new experience for me today. I really felt; this is my baby and I’m bonding with her!
In the evening we fetched Cecilie with us to the hospital. She changed MAC’s nappy like a professional. She just lifted MAC’s legs up, took her nappy of and a new on in few movements. Neil had to be very quick with the camera.

Cecilie acted less nervous then Neil and I were at our first time to change MAC. Cecilie sat with MAC the rest of the evening. MAC tried to get to know Cecilie better by biting in Cecilie’s shirt. I think MAC could have been biting Cecilie’s finger without Cecilie getting upset with her. Cecilie is such a good big sister. We can’t be anything but proud of her and her caring reactions towards MAC.

121107 - UK

Oh my. So many things have happened now. MAC is out of the crib, dressed in clothes and with out monitoring except one; oxygen saturation monitor. She has put on almost doublet then expected per day since Thursday. That gives her a weight on 1410g. I feel like I have a baby now and not just a premature. It is also a lot easier to make contact with MAC from today. We can have her close by as we don’t have glass between her and us any longer. She also got a bigger size dummy. But I really need to get some normal clothes for her instead of the hospital clothes she is wearing today. We have some friends who have tiny clothes from their twins. I will contact them ASAP.
Cecilie is back here again so we had a short day with MAC. Especially I had, since I had to go to one of my regular check up’s at another hospital and had a meeting with a social adviser. All my appointments all the time with doctors and advisers make me even more certain that it’s a good thing that Neil has the maternity leave and not I. I can’t take maternity leave from all that but only from my part time job. So this arrangement gives MAC a better routine, more constant and stable care and my self more peace at mind. I did have some struggles about it. Now I have come to the conclusion that I’m a better mum because I can admit and act after the fact that Neil is more capable of taking good care of her. I have other skills like taking care of Cecilie and her homework and other administrative tasks in our daily life. Plus writing this for especially Neil’s family. So I stick to those skills and enjoy the fact that Neil is such a wonderful and caring dad – and husband.
“Only a life lived for others is a life worthwhile”, Albert Einstein

111107 - UK

MAC might be the smallest at her room but she is way the cheekiest. We had a little problem with her stomach tube. We where looking for a little bend on it some where. I found that the bend was because of MAC. Every time I tried to unfold it she took her little hand and some how winded it around her own hand. It looked like she did it on purpose and she even did it twice. I laugh so laud about it that I woke up the other kids.
She eats quicker and quicker. She take her food at 1,5 hours. That is already twice as quick as when she was born. She now has 28ml. 8 times a day. Neil took her out of her incubator him self today. That was his first time doing that. He has been nervous about it. But he did fine and of course he didn’t drop her or any thing. It is also a little scaring with all the cords and all. I have been doing it on my own for several days now. I was also nervous, but I just had to get on with it with out thinking to much about it. I found a good tactic for putting her in the incubator after having her with me. It was just a matter of finding out how to get up from the chair with her in my arms. The rest was easy. The chair was replaced for a higher one. That gave me the courage to do it my self.
Her bowels are also working better now. She has regularly stools now. It’s easier for her to keep her temperature now. Yesterday she had a temperature at 37,5 so the incubator temp was reduced to 28,5 degrees. It might be reduced again before she gets out in a crib one of these days.

Look at her picture. You can tell that she has enlarged her size with 33 percent.

101107 - UK

Okay. MAC’s lungs are working just fine. Today I heard her scream for the first time. And so did the rest of the ward. The nurse came running from down the hall. She was amazed that something that small can make a noise like that. MAC defiantly has a strong mind and a good set of lungs. And the reason for her scream? The miss (read MAC) wanted me to stop talking with another mum. So I had to keep quiet and make her comfy. I guess the rules are set now. I have been longing to hear her voice as other mums could their babies’ voices. Today was simply the day.
Another nurse told us another story about her strong will power. MAC had single-handed crawled from the bottom of the incubator and up to the other site. I describe it as up, because the mattress is raised with several degrees. So it is crawling “up hill” for MAC. When the nurse saw that, she just had to call another nurse from another room to see it. They where so amazed about it. Yes, our Mary Ann is very amazing! Can’t you all see that? :-)
I also want my family to see that. So I went to my grand ma today at the old-age home. I tried to tell her that she’s now a great grand ma. But in those weeks I have been sick and haven’t seen her, she has totally lost it. She is so dement now, that she didn’t even wanted to talk with Neil and I. It was very difficult for me to see that big chance. It makes me very sad. I would so much love for her to understand that she has come to become a great grand ma. It is really gloomy.

091107 - UK

MAC was dropping in her oxygen values in the night and also in the daytime yesterday. So they took some tests. They wanted to see if she had an infection. But nothing was wrong. They think it’s because they didn’t increase the amount of caffeine they give her daily. That’s also normal for prematures. They sometimes “forget” to breathe when they are too relaxed. Pretty frightening for us parents! So they will give her a higher level of caffeine accordingly to her new weight.
I have wondered why the new nurses around her always say that she’s very strong. Of course Neil and I think so. We think of her as the strongest baby in the world but … Today I read that babies normally are 3 months before they can move their head. But MAC has been doing that for a least one week. She does that when she gets tired of our why to tuck her in. Then she knows how to lift her head. So no wonder now that other people also see her as a strong baby. "Proud Mary keep on burnin' " (Tina Turner lyric)

Present list - UK

Here are some ideas: (the list will be updated once in a while and last it was updated at 27 December 2008)
NB: Mary Ann is her age toy wise but her body is just still a bit small.

Baby shoes – all sorts also for christening. We have tons of clothes
Wellingtons
Toys – love the Early Learning Concept
Wooden chest for keeping memories and for equipment later on. See a picture here of what it could look like
Things that can teach her English!

All sort of toys with sounds are a hit for Mary Ann! She loves music and sounds.

081107 - UK

MAC was with me for 2,5 hours and with Neil for about an hour. I think we have a new plan now. We will try to have her on turn both of us on the same day. Instead of just one of us a hole day. That will also fit better with how I expect the plan will be when we can take her home. We discussed that. And having her alone on turn will fit very well. Both with my health since I might not be able to sit with her for that long in one go. But also with the fact that I’m more fresh in the morning and Neil in the evening. In that way it will end up with us having her half a night each. It’s nice to have that sorted already. Then we know that we should try in the period when we have to be hospitalized with her. Even though that might take some weeks yet. I guess it would be round December and then we can take her home middle of December.
She has gained weight again. Now she is 1275g.
Today’s practical things where first and foremost for Neil to talk to his boss. We really need to have the paper works in order now. On paper it is Neil’s last sick (just because of MAC) leave day. But what then? Is it okay for them that Neil takes all the maternity leave? Speaking of paper work. I also have a lot on my desk from the last weeks. I need to organise our life again. Today I got some things done. I’m more relaxed after organising things again.

071107 - UK

Oh no we had to steal today. MAC got a new dummy today. We wanted the old one as a memory. But the nurse was not allowed to give it to us of safety reasons (?!). So she asked us to steal it. So we did and hope to get it silver-plated some day.
Her head scan yesterday was normal. But she still has a little flaw noise from her heart. It must be because of the little hole in an artery, the heart doctor found when she was scanned. That’s normal and should close by it self in a week or two. But the hospital will check that again with a new heart scan. Just to be on the safe site.
After I sat with her for 2, 5 hour, Neil had her on his chest for 3 hours. We are getting better now to swap. In the beginning we thought it would be hard and difficult to swap. So that meant that we would put her in her incubator again instead of having her with us. Imagine that already tomorrow she is weighted again. So Friday she will eat even more and so on the day after every weight control on Monday and Thursday.
I went to town while Neil had her. It was so nice to get out again. There where even some new shops I didn’t know where built. In these days we are having the house done more isolated and comfortable before MAC comes home. So many practical things are taken care off step by step.
When we came home our Friend Nina had sent Mary Ann a present; her own personal book with a story about her. That was so thoughtful. I love these personalized presents you can get for babies. I can't wait for tomorrow when I'm going to read it out loud.

Let me teach you about my premature baby and tell you how my life has changed...

A Letter To My Friend,I share this letter with you because you care about me.When someone we care about faces a trauma, it is natural for their friends to want to help. When we do not totally understand what is going on, it makes it that much more difficult to help. You probably are having trouble understanding what is happening, what caused this to happen and why I am having such a rough time coping with the birth of my premature baby. Let me explain what is happening...Prematurity Facts...Eleven percent of all babies are born prematurely (before 37 weeks of gestation). 7.4% of babies born in 1996 were Low Birth Weight (LBW) Infants ( less than 2500 grams or about 5 lbs. 8 oz.). This is the highest level reported since 1975! Nearly one and a half percent of babies born in 1996 were Very Low Birth Weight (VLBW) Infants (less than 1,500 grams or about 3 lbs. 5 oz. at birth). This rate has been essentially unchanged for the last two decades at least.Twins, triplets and other multiples have a greater chance of arriving prematurely. Black women have the highest rate of preterm birth, double that of white, native and mexican americans. In 1965 there were 16 NICUs in the US. In 1993 there were 794 with 13,873 beds. A conservative estimate of the total cost of care for infants and children born at low birth weight is $6 billion, exceeding the annual cost of AIDS.There are many reasons that a pregnancy can end with premature delivery: preterm labor, incompetent cervix, premature rupture of membranes, placenta previa, toxemia are among the most common. The greatest majority of preterm births are not related to something the mother did or did not do. It is rarely the mother's fault. An increasing number of premature babies survive and thrive today. The statistics show that 20% of 24 weekers, 50% of 25 weekers, and between 70-80% of 26 weekers survive their early birth. The rates are much higher for babies born above 30 weeks, hovering around 95%. The smaller the baby, the more likely it is that they will encounter at least some type of developmental or learning disability, but this is not written in stone. There are many babies who come out of prematurity unscathed. (By no means should this information imply that a preemie is destined to an abnormal life of disabilities. It merely suggests that they have a higher likelihood of face greater challenges than the full-term baby. These challenges are often a result of the trauma the body suffered from the prematurity and center mainly around : impaired physical skills (such as Cerebral Palsy), learning disabilities, vision problems, feeding difficulties, or hearing problems. Many premature babies qualify for assistance from federal programs, such as Early Childhood Intervention, or take part in the special education programs offered in public schools. Remember!!! Each child's outcome will be different, depending on how their body coped with the preterm birth. The ability to accurately predict how a baby will develop cannot be determined by their birthweight, time in the NICU nor weeks of gestation. These factors are only indicators of the possible outcome for a preemie.Why Is Having A Preemie So Upsetting?The birth of a premature baby, even when it is expected, is the loss of very important dreams. It is the loss of the perfect pregnancy, the right type of birth, a healthy, perfect baby that can come home with you, a bright start to a new family. It is also involves a loss of optimism about the future. Worry about current and future development cloud my vision. I worry about what he will face later in life. And although my baby may have great odds of survival, I may still be fearful of losing him. Even with great odds like 90% survival mean that one baby in a room full of ten will not go home with their parents. I am worried I could be that one.I am angry. I am mad that this happened to me, especially if I was exceptionally careful about the pregnancy. I am mad that I lost control over my life and have placed my baby in this predicament. I am mad that I cannot take my baby home or even hold him. I am mad that people are not celebrating his birth, until he comes home and is "safe" from the arms of death. I am mad that others cannot understand how I feel. Guilt and failure are everywhere. I feel like I did something to cause this. I feel like I should be able to help my baby, not just sit silently by. I feel like a failure as a mother, daughter and wife. I feel like I failed at pregnancy, childbirth, breastfeeding and caring for my baby.I may still be in shock that this has really happened to me. I may repeat over and over the story of the birth. I may relive the early days with anyone who will listen. I may still even have OB appointments listed on my calendar and maternity clothes I was going to wear hanging in my closet!Mostly, I feel a total lack of power. I have no control over my body, my emotions, my baby's care, my baby's health. I don't even know how to calm my baby when he is uncomfortable. And I don't have any control over what will happen to my baby.Why Does My Advice Upset the Parents?When there is nothing specific to do to solve another's problem, we try to give helpful advice. Often we tend to draw on past experience or on the experiences of others. The truth: The preemie experience is unlike any other and comparisons only minimize the severity of it.Reason #1:Due to the nonstop advances in the field of neonatology, the survival rate of preemies has increased at drastic rate. Babies that did not survive 5 or 10 years ago, are now doing so and doing it well. So comparing the experiences of another preemie with this baby does not add information and support to the parent. Reason #2:Comparing the NICU hospitalization to another child's sickness or surgery is not appropriate (especially if the child is not a preemie). They are as different as apples and oranges. Your well-meaning advice is an attempt to transform an extremely complicated situation into a simplistic little problem and overlooks all the many losses that accompany a preterm birth.Reason #3:Advice on coping with pregnancy, birth, or a newborn baby doesn't apply as well. The feelings surrounding preterm birth are not the same as a fullterm pregnancy and birth. Moms would have liked nothing better than to endure the final months as big and pregnant. Comparing her situation with those of other full-term moms minimizes the trauma and grief she feels and makes her feel even more isolated, angry and misunderstood.Know that the parents appreciate your advice as an effort of support and consolation, but it is not useful, pertinent and accurate given the nature of the problem, unless you have actually been through the same situation of preterm birth. Answer:The best help you can provide is to be understanding and supportive. It is easier to do this if you can appreciate how devastating it is to have a preemie. When you speak with the parent, try to empathize with the burdens on their mind and in their heart. There is nothing you can do or say to make the baby better and take away the parents pain. What Can You Do For Her?When a parent feels so misunderstood and alone, they often begin to fear communication with others. Parents begin to fear that advice, suggestions, or comments will make them feel even more upset and despondent, instead of supported and understood.The most important thing to remember is that the parents are very distraught and very worried. Listent to what they have to say, but do not judge. Do not belittle their feelings or attribute them to the baby blues and hormones. Reactions to a premature birth is much more than a hormonal response. Don't try to pretend that everything will be okay. Don't sell her on fatalism with statements like, "What will be will be." If that were truly the case, what's the point of using medical technology to try to accomplish what nature cannot?Your willingness to listen can be of great help. Premature parents feel cut off from other people. Your ability to listen and support the parents will help them handle the stress they're experiencing. A baby's premature birth is one of the most difficult situations parents will ever have to deal with.Problem SituationsJust as an ordinary room can be an obstacle course to a blind person, so can the everyday world be full of hazards for a premature parent - hazards that do not exist for women with full-term babies and children.Some of the common obstacles that can cause increased pain and suffering in a parent ...* seeing mothers with their new babies* watching parents take home their newborns* catching view of a very pregnant woman* visiting the obstetrician's office for an appointment* hearing other's birth stories or complaints about late pregnancy* seeing babies at the store, passing them in cars, watching them stroll down the block or play at a park* hearing news of a friend's pregnancy* having to be around other pregnant women* passing by a childbirth class* attending showers or a bris* family gatherings, where babies and children are present* a breastfeeding mother* watching TV and being bombarded with baby commercials and programs that show pregnant women, birth, and newborns in danger* receiving and reading parenting magazines* reading parenting booksAs you see, there is no escaping painful encounters when you are a parent to a hospitalized premature baby who is not home and healthy.The Bottom LineBecause these parents, your friends, have had a premature baby, life is very stressful for them. It will be for some time, even after the initial difficulty of hospitalization ends. They will have to deal with isolation from germs, developmental concerns, and other health complications that often challenge a preemies first year of life.Your friends are doing their best to cope. Please be understanding. Sometimes they will be depressed. Sometimes they will be angry. Sometimes they will be joyful. Sometimes they will act in totally crazy ways that seem to defy explanation. Most times they will be physically and emotionally exhausted. The will not be the same old people they used to be. The parents have no concrete answer to when, or if, their problem will resolve. The fact that babies often ride a roller-coaster of progress and setbacks as they journey toward home only adds to the emotional turmoil. It is certain the NICU trip will come to an end, but when and how is often unknown. Afterwards it can be a long time before many of the parents questions about health and developmental concerns can be answered. They will not know the repercussions of the early birth for years to come and this can continue to plague their emotions at certain times, especially anniversary dates. During this time, though, they will form a close, loving bond with their child. They will accept any and all challenges and limitations their child meets. They will grow to see their child as perfect, regardless of any disabilities, for the love of a child is perfect. Never will the parent be the same as they were before the birth. They will be forever changed by the event. You will have to accept this as a result of the premature birth if you wish to continue supporting them as a friend. Your friend wants you to stretch and accept the new person she has become. She needs your support. Please care about her. Please be sensitive. Please be a friend...

with much affection,a preemie parent

Ønskeliste - DK

Vi vil rigtig gerne have penge, så vi kan købe de ting, hun skal bruge hen ad vejen. Men hvis det er for kedligt, så er der nogle prioriterede ideer her (opdateret 271208):
OBS: hun er aldersvarende mht. legetøj, men kroppen er blot lille.

Deryan minitelt rød
Gummi- og vinterstøvler
Håndklæde med navn, mørkebrunt eller hvidt, gerne forskellige størrelser (ønske for os andre også)
Legetøj til indlæring - alt med lyd i er et stort hit for hende!
En lille båndoptager hvor man kan optage sig selv på
Bernsdorff sølvbestik lille gaffel, kniv og ske. Evt. med Mary Ann's navn i
Brudekiste
Indlæringscd'er
Rim og remse cd'er
Små bøger
Stempel til tøj
Personlig sækkestol
Personlig madkasse og måske vanddunk

061107 - UK

Today was a very relaxing day for me. I spent most of the day in the relaxing room I’m still so lucky to have. It was Neil’s turn to sit with her. Since I can’t sit in the other chairs in Mary Ann’s room that meant I had to stay on my own in the relaxing room. A little boring. I will maybe bring my pc or something else in two days time, when it’s Neil’s turn again.
The head scan of MAC was normal and she was increased in her doses of food again since she had put on weight yesterday. She lied with Neil for almost six hours. That’s the good part with Neil having her instead of me. I could not sit in the same position for that long. We where at the hospital for 2,5 hours longer today. On our way home, we dropped by Cecilie’s mums house returning some of Cecilie’s things. Then home and have the dog out for a long walk. Today I was thinking about how lucky we are. Imaging that we have the possibility to be home both of us. Not many are that lucky. It’s also amazing that we get on that well – being in each others faces 24-7. But we rally enjoy making it all work out as a family. AND lucky MAC. I hope she will enjoy having us both all the time.

051107 - UK

Today was the day, she was weighed. She is now 1202g. That means it’s just after the book. She is supposed to put on 25g a day. And since she was 1125g Thursday, it couldn’t bee more perfect. So tomorrow she will be increased in her doses of food after her new weight. I sat with her for 2,5 hours today. She is getting better and better to be outside the incubator.
Neil’s mum called today. She will try to come to Denmark for a few days in this month. That is very appreciated by us. We will look forward for that. It is nice to have family to see her now.

041107 - UK

Mary Ann has change from the special premature formula to normal breast milk substitute. This other one is more concentrated. So in stead of 28ml she will only have to have 24ml eight times a day. Another step in the good direction. I sat with her for 2,5 hours. My colleague Annika was there for 1,5 hours while we bath her and so on. Annika gave Mary Ann her first set of very small clothes (sice 44) - in pink. Yet a nice day at the hospital.
The afternoon was spent on Cecilie’s football tournament and in the evening I invited Neil and Cecilie out to the local inn for supper. We had a nice night with Cecilie before she has to go back to her mum’s tomorrow.

031107 - UK

Neil and I had a nice quiet day at the hospital today. While Neil had a little nap with Mary Ann, I had the change to rest in a relaxing room today. Today, MAC seemed more as the well-balanced
Person, we have seen her as, compared to yesterday. She slept peacefully the whole day. She now has 28ml formula eight times a day. We bumped in a friend outside the hospital. He went with us to see Mary Ann. But besides that, we had no visitors today. That was fine because it gave us better possibility to arrange something with and for Cecilie.

Before we came we had the chance to take Cecilie out to buy some clothes for her self. Luckily Cecilie doesn’t take long time to shop. She is not a typical girl in that direction. We left Cecilie at the football club house and where alone with Mary Ann onto the afternoon when we had to pick up Cecilie again. I had planned that we should spend some time with Cecilie – having the monthly Cecilie day. That means that Cecilie decides what to do and what’s for supper. So we used the evening backing pizza with Cecilie after having chicken for dinner and watching a little telly together. Nice to feel it is weekend even though we have to get up early because of Mary Ann and football for Cecilie.

021107 - UK

Today I went to the hospital on my own. I bathed Mary Ann and sat with her for 2 hours. She was pretty cranky today. But when she was with me she felt a sleep. Her food volume is again increased and she eats up. I mentioned to the nurse that Mary Ann is improving quicker then Neil and I thought she would. The nurse said that it’s also quicker then they thought. Great to hear! She had blood test taken and they where all fine. The doctor ended his session with us with the words: I don’t know what else to tell you because she is just doing so well, so I can’t tell you anything new.
We had the night of. A friend had invited us for dinner. Nice to be pampered with homemade food from someone.
Today Neil asked his boss if he could have all the maternity leave accordingly to Danish law. The boss was very kind and understanding and told Neil, that he liked working with Neil and that Neil was very welcome just to drop by in his maternity leave just for a chat. They have been and are very supporting.
A friend had left us a goody bag with organic delicacies at the house. That was a kind thought!
Speaking of friend, I finally had the chance to finish and sent out letters to friends and family (both DK and UK) with the MAC-story. I have been looking forward for that. It was an up sum of the last two weeks and with picture of MAC and more practical information about visit at the hospital. It’s a lot easier to tell everyone the same long story and information. We still get a lot of calls and massages. So now all are informed and hopefully some will also use the blog here for more info.

011107 - UK

Neil had to go on his own to the hospital today. I had appointment with the doctor and other practical appointments. Now, my blood pressure is too low. I have not been feeling well today. So that was the explanation. The plan is now to take less of the medicine. Then the doctor will see my again in two weeks time.
The first thing Neil said when he came home from the hospital was, “We will defiantly have to show her boundaries. She is so stubborn”. Neil wanted her to change side to lye on, so her face does not get too flat. Nevertheless, she kept on turning her head as she wanted. Oh my, I am afraid that she looks a little too much like me. I remember way too well my entire crisis because I wanted to bee in charge – all the time. Especially when I was at the hospital as a child. I went to the hospital in the evening today and sat with her for one hour. That was great. I love the quiet evenings with her. She gained weight again to 1125g. If she has gained as she is suppose to on Monday, she might be placed in just a normal crib with a water mattress that will help her keep her body temperature. She will then be able to have clothes on. Things quickly improve.