Maria joined the angels...

  ON 3RD OF JANUARY, AT 4 PM, OUR LITTLE DAUGHTER DIED IN OUR ARMS.

OUR LOVE AND THE SENSE OF OUR LIVES [*]

THE FUNERAL WAS ON SATURDAY AT 12 O'CLOCK

2012-11-17

In the end of October we visited Mr. Shafiq who again congratulated my parents twice for having such a wonderful child ;). Regarding a contact lens which was tried in my left eye (but had stayed there only a couple of hours because I had rubbed it out) he said that if I do not accept it, we will leave it with glasses. In 2 months time, during the next visit, we may try again or we may change the glasses. We’ll see...

Also in the end of October aunt Magda visited us. She spent with us almost a week. Her visit was a time of rest for us, but by no means physical ;q. We did lots of shopping and walk. As auntie came in the time of All Saints’ Day, according to local tradition, we gathered as many children as we could and we went on Halloween knocking on the nearby doors shouting “trick or treat?”. We were dressed fantastically, of course. I was a very sweet pumpkin :q.

Last week I was very moody. My parents couldn’t believe that I cried so often.  Most likely all of this was because of teeth. Dad noticed that the other upper first tooth has come out. It’s high time! Moreover, I caught a minor cold. But mum and dad suspect that my moodiness may be simply because I understand more and more every day, and maybe I am checking what can be achieved by crying ;). They also try to make me fat, but without a success. I eat poorly. Once I may eat more, but then I will not accept anything for a couple of hours and I will close my mouth firmly. Maybe it is partly because of the teeth, but my parents are worried. However, I am such a little sweet “Thumbelina”, aren’t I?

In the beginning of this week 2 therapists visited us. One will stimulate my vision and the other is for early education, so I suppose we will play a looot. We are going to start in December.

We are still looking for a private physiotherapy. Bobath would be the best. Although the method was created in the UK, we cannot find any therapists. And it is very important for us because physiotherapy that I have now is once a week and it is only sitting and playing. I like Ms. Liz very much, but this kind of physiotherapy and once a week only is really not enough. I am 22-months-old and I neither sit, nor even start to crawl...

2012-11-16

So many months have passed since I have written/translated my daughter’s last post that I do not know what to start with…

It would take me a lot of time to translate everything and I think there is no point because no one would like to get through it…

So in a very short summary…

In the beginning of August 2011 doctors suggested tracheotomy as a chance to get out of respirator and maybe even going home, and we eventually agreed. Thus on 10^th of August it was made.

Taking out the intubation tube made it also possible to teach Maria of normal eating, but it was a very difficult and long process…

However, what happened next was something we dreamed about for a very long time.

At the end of August first trials were made to take our little daughter off the ventilator. Initially she was on CPAP. The first day when she was on her own breath since she was born was on 6^th of September. However, she needed some oxygen (and she still does), but it did not matter. An unbelievable day came when after 8 months spent on intensive care wards Maria was transferred to a “normal” one.

Then, at last, on 21^st of October we went home. After 8,5 months spent in hospitals we were able to put our little treasure in a bed that waited for a very long time…

At home we fought with eating and we were losing our hope after 2 months, but on Christmas Eve 2011 Maria gave us a most precious gift – she started to eat normally. The feeding tube was taken out by mistake by us, but we decided not to put it again and she managed.

Winter passed and we had not gone back to the hospital even once, though we were told we were expected to be coming back very often. Spring also was moving fast, so we started looking for ways of taking out tracheotomy tube, because we considered it was needed no more. However we could not find any doctor in Gdansk that would help us. Eventually we found a doctor in the South of Poland in Rabka-Zdroj that was able to undertake such a thing. We went there and on 7^th of May the tube was taken out…

And now the entirely new chapter.

On 19^th of July 2012, after many weeks of preparation we have moved to the United Kingdom. We settled in this country in Northern England, in Darlington. We rented a house, found a job and we want to spend here a couple of years.

Our daughter has already been seen by a lot of specialist, mainly in Newcastle. Respiratory doctor said that the lungs are not so bad… Cardiologist confirmed that the heart condition is very serious, but he has done a couple of successful operations of  this kind of heart defect. Nevertheless, it never is one surgery but maybe 6-8… However, the decision whether the surgery will be undertaken or not has not been made yet. What worries the doctors most is that our daughter is so small. Some genetic examinations have to be done to check whether she do not have some rare syndrome that would influence her life and possible surgery.

Eye doctor – Mr. Shafiq – is very positive and he said that he is happy that Maria sees something with the left eye (the right is gone…). She was given beautiful glasses which help her for her short sightedness.

And so we are moving forward… At the moment we are looking for more physiotherapy, as we reckon 1 hour a week not enough. And we would gladly find some Bobath therapist… We also fight with oxygen, but Maria is so addicted to it that is not able to be without it. Now she is on 0.5 litre/minute whish is not much, but still not “0”.

We also fight with feeding her, but this goes very slowly, especially recently, maybe due to the teeth which are coming out all the time…

2011-07-31

It’s the second day I am without antibiotics. Today I slept all day. In the evening I started to cry as my belly ached. My parents made a massage of my little stomach and it helped – before they went home I had fallen asleep again.

2011-07-30

Last days passed peacefully, so there is nothing to write about. On Thursday doctor decreased the pressure on respirator of 1 mmH2O more. She said that if I don’t learn to eat until I have tracheotomy they will make me a PEG (Percutaneous endoscopic gastrostomy in which a tube is passed into a patient's stomach through the abdominal wall) so that I will be able to eat through a tube. Mum said they will not agree and showed her how eagerly I suck a dummy. The doctor said it’s an easy reflex and I have to practice nevertheless of fear of anything that comes to my mouth. Yesterday clinical speech therapist called my mum and told her to make a massage of my tongue and palate. But it will be difficult as due to constant 5-month intubation I have a gouge in it. It hurts me when it’s touched. I hope it will heal. But still it’s amazing that so many people care about me and want to help me. Together with my parents we are very grateful

2011-07-27

Last two days were peaceful. Yesterday aunt Kate visited me. I am learning to suck. The best place to do it is in the arms of my mum. One nurse that was long absent, was shocked that I am so big when she saw me after coming back. I grow so quickly that there are some clothes that I haven’t wear yet and they are already too small. In the morning when mammy came I turned my head to the other side so that she had to help me with the tube.

2011-07-25

Yesterday Emily’s mother came to the hospital. Emily is a 2 years-old girl with tracheotomy due to the “Ondine’s Curse” (www.emilkowo.pl). My mammy spoke with her mother before about feeding children on respirator. She brought two dummies for me, so that I will be able to learn eating. The doctor said that we can start to learn sucking. She put her finger in my mouth and said that my tongue works so there is a chance that I will learn to eat normally. Yesterday I tried with my father’s finger and dummy, but it will take time as I always have eaten only through a probe. What is more everything that comes near my mouth frightens me because of often intubations. Today I slept all day. The nurses say that I am an utterly different child when my parents are absent. I feel safe with them. I weigh 3840g. Yesterday I was wearing my pink dress for the first time. I looked like a little princess. But my parents forgot to take the camera.

2011-07-23

Since yesterday I am no longer in incubator, but in bed. It is the third such a change. First bed I received in Lodz. After coming back to Gdansk I was put back into incubator, but after 3 days I was again in bed. When I came here it was decided that I will be lying in the open incubator. But now it’s over with heating… ;). Mammy long was trying to put the tube comfortably, but something wasn’t right. It was bending all the time. Finally  when daddy came they found out that the tube is shortened, and they were told that by the ward head. We are curious why she has done it… Hmh…

Today the doctor on duty made me a flexible indwelling again. She said she doesn’t like when so ill a child doesn’t have one because in case of emergency it must be possible to give the medicines quickly. I don’t like needles, but I must agree she’s right, especially that it’s so difficult to make me an indwelling... She also switched off ECG saying there is no need for me to be connected to it all day. My stay in the hospital is long-term and electrodes hurt my delicate body. It is enough I will have them at night.

2011-07-21

Not so long ago I was a little child, and now I seem to be quite a big baby. I weigh 3700g. My parents didn’t learn x-ray results until today because yesterday the doctor was to busy with painting her nails to provide them information. But now we know everything. It was done to check once again whether I don’t have hydrocephalus. The result is negative. The doctors were worried that my head grows to quickly. On Sunday its circumference was 34 cm, on Monday 35,5 cm. But it was a mistake done during the measurement, because today a nurse measured 33,5 cm. Every time a different nurse measures my head so that’s why the results differ so much. Today while changing a plaster I extubated (the tube came out from trachea). I was then intubated again, this time through right nostril. The previous tube I had for more than 3 weeks. After all of this I slept all day

2011-07-19

My weight is already 3560g. When my mum holds me too long her arm aches ;). Yesterday doctor diminished respirator parameters: oxygen to 45%, breaths to 15 and pressure also a bit. Unfortunately CRP increased again. I was given new antibiotic. My immune system want develop in the hospital, so I continuously have some infection.

Today my milk amount was increased to 70 ml. I am a big girl ;q. The doctor said that I have grown up a lot and soon we will start to think about the tracheotomy. Children feel better with that than with the endotracheal tube. What is more it is easier to give medicines for lungs, especially inhalations. If my lungs improve it will be possible to take out the tracheotomy tube. Then the hole in my neck can close even in 24 hours time. Today grandma Beata and grandpa Zbigniew visited me. They liked me very much. They said that I look after my mum, that I have the same face as she when she was born. I wonder, when I was born everyone said that I look more like my dad, now they say that more and more like my mum ;) Tomorrow I have important examinations: abdominal and brain x-ray. We hope that everything will be fine.

2011-07-17

I surprised my parents on Friday;). My daddy took me into his arms, but I couldn’t calm down. As soon as he gave me to mammy I fell asleep hugging to her. Even when he was checking my blood pressure I didn’t react. No place like mum… ;q

I had a lot of guests today. First aunt Emily with uncle Thomas and in the late evening deacon Damian with father Matthias. I felt very well all day. I had a very good saturation. My parents noticed that I have my own likings and habits. When they covered me with a blanket up to my neck I started to cry and didn’t calm down until I took my hands out of it. Only then I was glad and fell asleep ;).

2011-07-14

During the last 2 afternoons I was sleeping and listening to the classical music – Bach. I weigh 3430g. I am so big! It is easiest to notice by looking at my clothes, which are to small ;) and during hugging. Probably baby colic started to bother me. I cry (soundlessly) horribly. After my anxiousness my mammy hugs me a lot. When she does that I fall asleep immediately. Yesterday my parents made me a photo session. I hate it because the camera’s noise annoys me (my hearing is good ;)). But it will be a souvenir when I grow up. Examination results are getting better, especially CRP.

2011-07-12

In comparison to the last few days I had a very good gasometry today. CRP is similar as recently. Ophthalmologist came in the morning. Dad brought mum to the hospital before going to work so she would be able to speak to her. She couldn’t stay long with me because in the morning there are no visits. Luckily she came for a moment and stroked me ;). Ophthalmologist was positively surprised by the results of the examination. Comparing to the previous one there is an improvement. I still have ROP 4, but retina has attached itself in some parts and it is possible that it will re-attach even more. There is a chance that I will see. Surely not like healthy people, but it’s always something… Maybe not much, but it makes us happy…

2011-07-11

I weigh 3230g. CRP rapidly decreased. The doctor was shocked – in 2 days from 144 to 18. Today we received genetic opinion from Lodz – none disease was confirmed. My mum was checking my sucking reflex. When she put her finger into my mouth I started to suck it immediately. My parents are happy because they doubted whether I can do that as I am spitting the dummy out over and over again.

2011-07-10

Yesterday I felt a bit better. I was more active. My parents bought beautiful set to take care of my nails. They made me manicure and pedicure. Today I was more anxious and wriggled a lot. New antibiotic helps me as CRP is a bit lower. Tomorrow I will have examinations and on Tuesday ophthalmologist will come. Doctors consulted me with a genetic. She said that she suspects one syndrome that could be connected with my problems, but it occurred that she fought about Di George Syndrome, which we already know that I don’t have ;). I am really a little women. When my parents use a lipstick I fold my lips like a big girl. Nature cannot be deceived – it must be an inborn reflex ;).

2011-07-08

Well, we should have known that it won’t be long till I will need needles again. I am sick again. My CRP is very high, I am was given new antibiotics. Since from the beginning I am in the hospital my immune system is very weak. My veins are also more and more weaker due to the constant pricking. I slept almost all day long.

2011-07-06

I was very anxious today. I was crying and wriggling a lot. I didn’t calm down until my daddy came and started to hug me and to speak to me patiently. Dad often kisses my little hands while the song for children “Kiss the little frog’s hand” is being played. When I was very little I looked just like a little frog… ;). Today mum noticed that I smiled delicately. And at my every smile she smiles back even wider ;). Today I have no more flexible indwellings. All medicines are given through probe directly to my stomach. Let’s hope that new day will bring better prospects…

2011-07-05

Today for the first time aunt Annette and uncle Luke visited me. They were surprised that I am so big. My CRP is finally lowering, so I am taking one antibiotic less. I have a problems with inserting needles into my little veins because they are so fragile. Due to that the doctors decided to change gradually intravenous medicines to ones taken into mouth. I was a bit weaker than yesterday, my gasometry was worse. I didn’t slept long, but I listened to music, mainly to the songs from “The Phantom of the Opera”. I listened also to interesting stories told by my parents. I am so cunning that while my parents are hugging me I am sleeping, but as soon as they go out I wake up. Today I detained them more than half an hour.

2011-07-04 – A few words from parents

Yesterday was very special. We had our first wedding anniversary. Our little Mary must have known that because she was behaving very well. As if she wanted to give us a gift this way. She fell asleep when we wanted to go so it was easier to leave her. We could go by the sea and relax. At least for a while. To be fully happy we needed only our little daughter… Today Mary must have had beautiful dreams. A couple of times she smiled sweetly. It was for the first time that we saw such a sweet smile on her face… Unfortunately we couldn’t take a photo because we forgot to bring a camera. Nevertheless we hope that she will smile more often so that everyone will be able to see this amazing view ;).

2011-07-02

I have finished 5 months today!!! I am already sooooo biiiiiig and old… ;). My parents gave me a gift: beautiful pink radio, so I can listen to the music now. Today I listened to children songs and Bach :q. I was very peaceful in the morning but later my stomach ached and I cried a lot. When at 6 o’clock mum wanted to feed me she checked that I haven’t digested a dinner yet. Finally I ate milk and went asleep.