This week has already seen Arrianna going back into Shrewsbury Hospital twice this week. Monday we visited for routine tests having blood and urine tests once again. As she now has a beautiful skin colour i thought when the results came through we would get an all clear. On Tuesday the whole family was excited, We had recently been given the most wonderful opportunity thanks to meeting a lovely lady Julie through twitter we had a family Photo shoot, It was the most amazing experience and we all loved it Kellyn especially and the photographs of him look stunning Julie really captured him at his best a very out standing handsome little lad who i am very proud of. I highly recommend her for all kinds photography work even pets take a look at her site she is also on facebook http://www.real-photography.co.uk/ . We all went to bed so happy after a wonderful time together.
Wednesday morning i got the call from the hospital, It was really hard for me to understand the Doctor talking to me on the other end but as she did i froze, Arrianna needed to return to Hospital the next morning for further tests the rest of the conversation i didn't really understand, so i spent the next 24 hours in a daze waiting for the next day. As Thursday came and we headed once again to the Hospital, We walked in and it was like visiting friends the nurses are getting to know Arrianna and myself well now. Each appointment i attend Arrianna and i always go alone so we get to talk the staff quite well. It did not take long today, Arrianna once again need to have blood and urine taken, Today i armed myself in my head with a list of questions. I was told Arrianna had problems with her Thyroid, Once again i am now awaiting for test result.
Follow our Day to Day lives as we bring up a baby with Downs Syndrome. Follow our highs and lows as we fight for our baby girl to be given a normal life. yOU CAN Read about our Adventures along the Way as we live life to the Max to Give Arrianna the Best Life Possible. WERE A FAMILY ON A MISSION.
Thursday, 31 March 2011
Sunday, 27 March 2011
Walford Lambing Day 2011
After going around the car boot sales this morning an achievement i was very proud of, we headed to Walford College, an agricultural college based just out side Shrewsbury, For me today was very exciting as i attended this college when i studied Motor Vehicle Service and Repair after leaving school, i also took welding and a few other courses here. These were fabulous times after having a horrible school life after being constantly bullied for being deaf and wearing hearing aids. Walford was the first time i made friends and enjoyed each day being there. Today it i boiled with pride walking around with my 3 fabulous Children. The college has seen many changes since i was there. The site where i did Quad riding and Tractor driving is now home to an animal centre housing pigs lamas goats and lots more animals. We are a family of animal lovers so it was great to go and see there lovely animals. next we went over to the farm and into the lambing pens there was lambs here just born Kellyn and Ceienna found them adorable at this point there were 2 beautiful blue eyes peering from under a blanket Arrianna was looking what the noise was she seemed amazed by these new born lambs too. last stop was the calves Ceienna's favourite animals has always been cows one calf actually came up to her she was so pleased it made her day. As it had been another early start my 3 babies were getting tired and hungry so we headed back to the car and made for home for chill time.
Ellesmere March 2011
An early start saw our family heading over to Ellesmere, The town is a small historic market town dating back to Anglo Saxon times. Now the mere is a popular tourist spot with a lovely walk along side the mere leading into a park. We went to see the ducks and walk today giving Arrianna so fresh air and letting Kellyn and Ceienna release some energy. Afterwards we took a drive to Lyneal the road is a single track so as we crawled along we got to see so much wild life it was amazing,
Arrianna 1 Month Old
Saturday saw Arrianna turn one month old and what a month it has been. She continues to do well maintaining regular feeding and is very alert and responsive.
Friday, 25 March 2011
Breast Feeding Advice
After successfully feeding to very greedy babies in the past while pregnant i never dreamed there would be any problems in the future i always loved breast feeding it was the one thing no one else could do for my baby only mummy would do. that wonderful feeling of closeness between mother and baby. Both Kellyn and Ceienna began feeding with in minutes of birth so after having Arrianna and her not being able to feed it was hard, as through out the pregnancy i had dreamed of that closeness once again. Due to Arrianna's condition she is unable to feed direct from me it is very hard work for her due to having weak jaw mussels and when she was born Arrianna did not know how to open her mouth this is one of the first things i taught her with no help or guidance just me sitting with her n our own through trial and error.
To feed Arrianna now she has to have expressed breast milk from a bottle with a big treat hole while enables me to drop the milk into her. Through our most recent stay in hospital i was introduced to a breast feeding nurse, a lovely and very helpful lady to showed me some new holds for Arrianna The dancer position http://today.msnbc.msn.com/id/5603843/ns/today-parenting/ unfortunately these have not worked for Arrianna so i continue to do my own thing giving Arrianna time to play with the breast this allows her to work out for herself how wide she now needs to open her mouth and that she has to maintain suction to help make she Arrianna does not get frustrated with herself i make it into a game and it becomes fun time where we sing and have cuddles and slowly she is getting better i hope that one day we shall be able to ditch the bottles.
My advice to other mums who are breast feeding or considering it is go for it the experience is beautiful. The day after having Kellyn my eldest i was back working in the garages with my boy i shall always remember breast feeding him on the left side while de-stickering a van for a customer with my right hand. Yes there were men around and i never bothered i just reminded them that they were breast fed once. Enjoy it.
To feed Arrianna now she has to have expressed breast milk from a bottle with a big treat hole while enables me to drop the milk into her. Through our most recent stay in hospital i was introduced to a breast feeding nurse, a lovely and very helpful lady to showed me some new holds for Arrianna The dancer position http://today.msnbc.msn.com/id/5603843/ns/today-parenting/ unfortunately these have not worked for Arrianna so i continue to do my own thing giving Arrianna time to play with the breast this allows her to work out for herself how wide she now needs to open her mouth and that she has to maintain suction to help make she Arrianna does not get frustrated with herself i make it into a game and it becomes fun time where we sing and have cuddles and slowly she is getting better i hope that one day we shall be able to ditch the bottles.
My advice to other mums who are breast feeding or considering it is go for it the experience is beautiful. The day after having Kellyn my eldest i was back working in the garages with my boy i shall always remember breast feeding him on the left side while de-stickering a van for a customer with my right hand. Yes there were men around and i never bothered i just reminded them that they were breast fed once. Enjoy it.
Thursday, 24 March 2011
Mad Day March 2011
Today has been a mad day some may even describe today as a roller-coaster day. This morning our Health Visitor called on us to weigh Arrianna once again She weighted 8lb today which is wonderful news as she is now over her birth weight. Even if there was a little drama as i stripped her off and held her to put her on the scales she wee'd and poo'd in my hand. Still giggling about it now.Next was a mad dash to Welshpool Hospital for her Second Hearing test. Unfortunately it came back as no response so she will now be referred to an Audiology clinic. After the tests we went to one of our local playgroups, It was lovely watching my eldest daughter playing so well with friends and for me chatting to other parents. At song time Arrianna woke up so i got her out of her car seat and took her to join the group she loved it laughing and smiling at me showing how much she enjoyed it. The leader then spent some time with Arrianna which was lovely its great to be part of a welcoming community who have excepted my special girl so well. After the school run we had to go to the doctors with Arrianna for another urine test. They fitted a urine bag to her and showed me how to fit and remove them for her. Afterwards it was great to be home mad day dashing around but all for my little girl. Today was also different as i had a little hand to hold through out Ceienna my eldest daughter came with me and Arrianna today, We managed to snatch some precious time together too which was lovely. fingers crossed now for a fab weekend.
Wednesday, 23 March 2011
Another Hospital Stay
Arrianna has recently spent another spell in hospital. She originally went in for a repeat urine sample but she was not feeding well and nothing coming out the other end, she also had not yet regained her birth weight. After a mad dash home to collect clothes and things we needed for our stay and pack things for Kellyn and Ceienna we then went back onto the children's ward where we were shown to our room. IT was a nice room this time with a TV and a nice view. Arrianna was then placed under observation, she had lots of checks every few hours day and night. We were given 2 days to get her feeding back to normal or she would need a Feeding tube fitted. she was currently only taking 30ml the doctors advised Arrianna needed to be having a minimum of 62ml per feed, she was also once again very yellow. The following day we started to sort everything out for her i was given a hospital breast pump once again so i was able to keep expressing milk for her. Arrianna once again was needing 3 hour feeds. Luckily her feeding picked up and once again she was feeding 100ml again and was then well on the mend. We were kept in 4 days to get her weight up make sure she was feeding well. While there we shared some wonderful moments. As her energy levels went back up she was once again very responsive and we shared a great time copying each other making faces and noises she also grabbed and kept hold of something for the first time this happened to be my locket which i now wear with pride. Also we managed to Breastfeed for 20 minutes continually this was a wonderful achievement. Now Arrianna is back home where she belongs making up the dream team with myself Kellyn her Big Brother and Ceienna her sister and Muzzy the dog.
Tuesday, 22 March 2011
Thank You
I just would like to say a HUGE thank you for all the Facebook Messages, Twitter Messages and Text and everyone who contacted us to wish Arrianna well while she was in Hospital recently means a lot.
Thank You All and Big Hugs from Me And Arrianna x
Sunday, 20 March 2011
Downs Syndrome awareness week 2011
Today is the start of Downs Syndrome awareness week and Today it World Downs Syndrome Awareness day. This cause is now very close to my hear We are only at the beginning of our challenge and so far Arrianna had fought all the way . Please today do your bit to make the world a better place for Arrianna to grow up in by doing your bit to raise awareness. Pass around links, Follow her facebook page and ask friend to do the same and visit the Down Syndrome web site links below.
FORGET DOWNS SYNDROME HERE’s TO UP SYNDROME
Dont forget never be afraid to ask me questions you wont offend me i love talking about my baby girl.
Tuesday, 15 March 2011
Hospital Visit :- Prolonged Jaundice Screening
This week saw Arrianna back in Shrewsbury Hospital on the Children's Ward this week, due to her condition we were once again but into a side room. She was stripped off ready for the tests to begin. Now Arrianna is over 2 weeks old there is growing concerns over her Jaundice, After two weeks babies are expected to be recovering from jaundice and also they are expected to have regained their birth weight, unfortunately Arrianna's jaundice levels are rising and also her weight is slow.
We arrived at the hospital at 2pm, when the doctor was available the doctor and a nurse came to take Arrianna's blood they placed a needle in bot arms and legs looking for a vein, they were unable to find one so Arrianna was moved to the treatment room., I wrapped her in hospital blankets and carried her down the corridor into a dull room decorated for children with medical instruments all over the room. I Placed my baby on the bed in the middle of the room and i was given a chair, due to lack to staff i had to help hold Arrianna down all this time i had to watch out for Arrianna having a wee as they staff needed a urine sample, Once again the doctor placed needles into Arrianna's arms her right arm was first once again she did not bleed very much and she had to have a needle placed into her other arm drop by drop i watched the little blood which did come out be placed into the tube. This experience was like torture to me the whole thing last for half and hour all this time she was crying as hard as she could, i wanted to scream at the doctor to stop but i knew she need to have this done, all i could do is hold her hand and talk to her. Unfortunately i also missed her weeing too. I was unable to communicate with the doctor and nurse as i was unable to hear them all i could hear was my beautiful baby girl screaming for help, once the treatment had finished i picked her up in my arms and gave her the biggest cuddle as she felt me near her again she stopped crying it was the greatest feeling knowing that the baby in my arms needed me and no one else would do.
We were then sent back to our room, the nurse came in and cleaned up Arrianna's bum again and we once agian waited for a Urine sample. it was now 3: 30pm, i watched the clock tick round as i waited and waited for her to wee. I felt to sorry for her once again she was blood stained and naked in a hospital bed. She was holding tight to my hand as she lay in front of me i could see how scared she was looking deep into her eyes of what else was going to happen to her. I gave her her dummy and helped her to suck once again and talked to her to comfort her and she eventually fell a sleep. It was a very lonely few hours with Doctors coming in and out asking me lots of questions about feeding, Nappies and her dried skin also i was asked lots of questions about the pregnancy and Downs Syndrome.
Eventually at 6:00pm a little fountain broke i was so excited i hit the call bell for the nurse who ran down with the sample. eventually we were discharged once again. We will have to do this all again in 2 weeks time now. We have to work hard at bringing the Jaundice levels down this means i have to feed Arrianna with out fail every 3 hours Day and night When possible i need to place her in sin light and constantly monitor her. So watch this space as our fight with Jaundice Continues.
Sunday, 13 March 2011
First Walk in the Sunshine
TOday was a beautiful spring day, Clear blue skys and just warm enough to enjoy the day. After a morning in Shrewsbury going around Car Boot Sales and visiting family we headed home after diner, The family put on our Wellington Boots and headed to the playing field We are very lucky to live in a beautiful part of the world on the Shropshire/ Welsh Border. so we headed up the the playing field with Muzzy our dog. The field was lined with Dafodills and solundines. Fabulous time we all enjoyed.
Saturday, 12 March 2011
Arrianna's 2 Weeks old today
Today Arrianna is 2 weeks old, What a couple of weeks it has been this week we have had our first visit from the health visitor, Arrianna's Hearing Test which unfortunately she did not pass. as well as the routine Midwife visits. She has been weighed twice this week and her weight is coming back up to her birth weight well. She does still have jaundice which will be investigated next week. Lots more going on next week so be sure to keep visiting for the latest up dates.
Friday, 11 March 2011
Informing School
Monday afternoon saw me and Arrianna holding a meeting with Kellyn and Ceienna's Head-teacher, The aim of this was to get as much support for the two older children as possible i gave all the teachers a chance to ask me any questions they felt they needed to know and also to discuss the future. By taking these steps now i was insuring Kellyn and Ceienna's time at school was as unaffected as possible and that all my children get the support that they will need when ever and where ever they need it.
The teachers were wonderful and very positive so the future is looking good, Kellyn and Ceienna also received glowing reports from their head as well as the class teachers, We are very lucky to have chanced on such a wonderful school who are so willing to work with the home as well.
The teachers were wonderful and very positive so the future is looking good, Kellyn and Ceienna also received glowing reports from their head as well as the class teachers, We are very lucky to have chanced on such a wonderful school who are so willing to work with the home as well.
What does having Downs Mean to us ??????????
Arrianna is now 13 days old really is like any other baby. However, She is still having to be fed expressed bottled milk due to her having a problem opening her mouth, in time this may get better. We have lots of professionals visiting the house all doing different jobs which will aid Arrianna in the future and also help with support for the family. As yet we don't know how Arrianna's condition will effect her, but she has alot of support from myself and her Brother and Sister who will all help her achieve everything possible.
Wednesday, 9 March 2011
Mad Dash
After staying up till 4am after dropping Kellyn into school it was mad dash into town to pick up a new Breast Pump, Having to children before i never dreamed that my third child would have any problems feeding what so ever, Breast Feeding my children had always been something special to me and to loose this hurt badly. Arrianna has a problem opening her mouth and latching on to the breast which is why she needed bottles this enables me to use my hand to help her to open her mouth.
I would like to thank everyone who helped to try to sort out a breast pump for us coming home out of Hospital.
Monday, 7 March 2011
Arrianna Is Now Official
After Dropping off Kellyn and Ceienna at school today i headed off into town to register her birth. The assistant informed me that you needed and appointment but there was a space an hour later so i took it and headed off to the library, i asked for some books for children on Downs Syndrome and the Library Assistant asked me why i wanted them so i explained that i had just had Arrianna and wanted to use the books with my other children. She them informed me she too had a son with Downs Syndrome, I had met my first Downs Mummy we had a good chat and it was wonderful to hear about everything her son had achieved. She was very helpful. I burnt some time in town doing a few little jobs which i needed to get round too and then it was back to the register office.
Arrianna and i didnt have to wait long for the clark, She took us into the same room where i registers Ceienna when she was born, as i walked through the door and was hit with a brick of emotion, i sat in the chair and with in a few seconds it seemed i run through the happiness which was in the room when Ceienna was born lots of smiles Jokes and pride over our daughter. Now i was in the same room registering the birth of my second daughter alone, how things change.
After all the official stuff was over the clark gave me advice over Arrianna's Downs Syndrome and getting the help and support for the future. I had just enough time to dash back to the car and pick up my wonderful baby.
Sunday, 6 March 2011
Were on our way Home.
The word you can go were like music as it was getting late the hospital gave me my tea one last insult to my digestive system, lol ( Pictured below my last Hospital Meal )
Afterward i had to learn to get to grips of the new Breast Pump it was very vintage compared with the one i had used in hospital but soon did it and expressed a further 300ml of fresh Breast milk for my baby girl .
the next job was to get on the computer and get reserching i had to find my own breast pump bottles and more for Arrianna i shopped around online looking for the best prices first stop ebay nothing there was a decent price of i hit the high streets Mothercare, Argos, Toys r us, boots i had to compare everything as this was a huge wedge out of my weekly budget. Eventually i settled on Argos and ordered the items ready for the next day.
I then felt like i was diving into treacle as i typed those words into the search banner, DOWNS SYNDROME ASSOCIATION it seemed to take ages and i was just flicking through pages nothing really sinking in web site after web site i looked through nothing satisfyingly my curiosity, looking at the clock it was 4 am just enough time to get some sleep before Kellyn woke up. I pick Arrianna up in my arms and my heart stopped as we made the magical journey up the stairs and i layed her down in her moses basket which had sat by my bed waiting for her for so long now. it was a wonderful feeling.
Just getting myself comfortable i heard Kellyns door open he came in and got in my bed wide awake i knew this could only mean one thing from my son, He wanted to talk, i was right question after question came from him it was like he knew i had not told him everything about his sister, i could not keep it in any more and i heard myself say " Arrianna is Special she isn't like you or me, She will need us to help her lots and to teach her things" Kellyn looked into my eyes and smiled " We can do that Mummy" then off he toddled down stairs. My son knows me far to well.
Saturday, 5 March 2011
Welcome to the World
Arrianna Maria
Born 26th February 2011. at 10.23 pm (40 minutes after arriving at the hospital ).
Weight 7lb 11oz .
Much loved and adored sister to Kellyn and Ceienna.
The Early Days.
The Labour
As i arrived at the hospital i was strapped to a monitor and it was clear that my baby was getting tired from the labour. Luckily she was born less than 40 minutes after arriving at the hospital. I was given to believe that due to her heart being slow she needed to be seen by " The Baby Doctor " and i was left with her in my arms. as she lay there and i looked at her i could see, my baby had Downs Syndrome, but i did not say anything cause i just didn't care, she was beautiful and as she lay on my chest and our hearts were parallel to each other we were exchanging mother and baby bonds.
The Midwife soon brought in the doctor who took her off me and examined her. From his face i could tell there was something wrong but he smiles reassuringly and said she was fine then he and the midwife left the room.
By this time i was bleeding heavily and was not able to be moved onto the word, while lying on the bed the midwife had returned and was desperately trying to encourage my baby to latch onto my breast, but she could not open her mouth wide enough to take in my nipple and tired very easily and dropped into a deep sleep each time she tried. Eventually my bleeding stabilised and i was able to go for a shower and be moved onto the word.
Day 1- Sunday 27th February 2011
It was now 5:30 and every half hour the midwives on duty were check up to see if i had managed to get Arrianna to latch on to my nipple. As morning broke i was still unable to take my eyes of my wonderful baby, deep down i knew what was wrong but inside i just did not let it bother me. Breakfast was given to me at my bed side as i was still trying to get Arrianna to feed. The morning wore on and there was no change. We were visited by various doctors all doing the same thing. Being deaf i could not understand the questions as most of the doctors were Foreign and i struggle to understand accents. I was alone and there was something going on and no one was telling me something i knew was very important.
I picked my phone up and texted my mum and Arrianna's Dad to come into the hospital for the first time fear hit me how would the both react. Visiting time was soon over and i was left alone with Arrianna once more, once again we had many professionals visiting us and i was told that Arrianna and i was being moved from the ward into a side room, that hit me worse i knew then it was serious.
Arrianna and i were moved later that afternoon and through the evening i prepared myself for what lay ahead, by this time Arrianna still had not had a proper feed she was surviving on me squirting milk form my breast into her mouth this was not enough for her the amount of energy trying to feed for 2 minutes was taking her was to much and Arrianna was getting tired very quickly.
During the evening visiting time was quite it was hard to believe this precious little baby hard a problem. I continued trying to get Arrianna to feed long into the night and at 11pm the Midwifes changed over and the new on duty Midwife came to introduce herself, she noticed Arrianna was going yellow, With in an hour she had completely turned yellow and had not woken up, The midwife brought in a colleague and Arrianna was tested for Jaundice, The midwife then explained to me what Jaundice meant to a Downs Syndrome baby, now feeding was vital, i insisted i wasnt a expressing machine and a bottle NOW. She was back with everything i needed within 5 minutes. I was able to express milk very easily and quickly got fluids into Arrianna. With in an hour the blood results were back Arrianna's Jaundice level was dangerously high and if we didnt act fast it could result in liver damage and as we didnt know what damage the Downs had caused we need to help her. by 1am our room had been moved around Arrianna had taken 30ml of milk and they had brought in an incubator, once again my baby was taken from me and place in the incubator and the intensive phototherapy had begun. From then Arrianna had to be fed every 3 hours with out fails and i had to monitor how much she had taken and when she wee'd or poo'd. From then on Every 6 hours Arrianna had to have blood taken to have her jaundice levels checked.
Arrianna hated her incubator as she just wanted to be cuddled and i just wanted to cuddle her i stood my her holding her hand singing and talking to her to keep her calm and so she knew she was safe, i never left her side till morning broke.
Day 2 Monday 28th February
9am the doctors returned and once again Arrianna and i were took to the nursery. This time bloods were taken from both Arrianna's Hands and Feet she was very good especially as the blood was taken from her drop by drop not in a continuous flow. It took ages. This blood was being sent to Birmingham for screening for Downs Syndrome, It took for of them to hold her down it was terrible to sit in the chair watching i was not allowed to be with her through this, i took what i could by being in the room i wasn't leaving her again. She needed me. They explained the results would not be back until Wednesday, It was going to be a long week.
WE were taken back to our room were the intensive phototherapy took place and i worked hard to teach her to open her mouth and take a feed. My thoughts were starting to turn to home i was missing my other children badly by this time and being separated from them was nothing but torture. I wanted to go home and hold them but i could see we were going no where fast.
Day 3 Tuesday 1st March
By day 3 Arrianna and i had now establish a good feeding routine, even that she was taking a whole bottle which was 100ml of expressed breast milk. She was weighed and she had lost weight which had gone down to 7lb 5oz this is a good sign and perfectly normal. The results of the mornings bloods reached us at 11:30am it was good news the Jaundice levels had dropped dramatically thanks to the feeding route we had got going and she was now allowed out of the incubator. Due to Arrianna being over due she had terrible dry skin not helped by the incubator so next, i top and tailed her ( Washed her ) and rubbed baby oils into her skin she loved all the touch and found it very relaxing.
Later that evening it was a wonderful feeling holding her close to me once again she was wide wake and alert once more and loving having a cuddle.
Later that night Arrianna showed interest in the breast, she was able to latch on and maintain a good strong continual suck, this was magical all the work i had done with her teaching her to suck had finally paid off it was a wonderful moment.
Day 4 Wednesday 2nd March
2am Ariianna was wide awake watching me expressing milk for her, She didnt need anything though i carried out the usual checks with her nappy feed all she wanted was a cuddle. I had introduced a dummy to her as this will help her with sucking.
7am Arrianna woke up again needing a feed but this time she asked to be breast fed, a wonderful moment. She fed continually from both sides for half an hour i was just so happy it was a wonderful feeling.
After her feed arrianna had her check sand she was weighed again she had maintained her weight which was excellent news. After breakfast i gave her a good wash and treated her skin once more she was wide awake and looking through the window.
At 2:30 pm the on duty midwife came into our room the test results had arrived back from Birmingham and the specialist doctors and paediatrics where coming to see me. It was the longest Half and hour ever, Then bang on 3pm 3 doctors and a midwife came into our room and shut the door. They confirmed it, Arrianna had Downs Syndrome this part was fine next was the worse part, How had the condition effected her, the doctor who was foreign so understanding him took all my concentration and energy to understand went all around the houses to explain this firstly explaining about how Downs Syndrome effects the Guts and then he explained how it effected the heart, this was the worst fear for me i felt like my own heart had stopped beating, that moments thought my baby girl would have to under go heart surgery. We had to go for a heart scan and it had to be soon they were sending us that afternoon. The good news was once we knew what damage she had to her heart we could go home. 4 pm we were sent for the scanning machine was free, The Midwifes found Arrianna a pram as she was unable to go in her cot and its against policy to carry her. Waiting in Children's out patients seemed to take for ever as no one had any idea where the doctor had gone, when he did arrive he called us into the scanning room and began frantically fingering through the notes he didn't seem to know what he was looking for, Once again there was a nurse ready to pin Arrianna to the bed this was to much to bare again so i insisted on being by her side instead, by now we had developed a good bond and i held her hand and talked to her she lay on the bed very peacefully and allowed the doctor to scan her heart, this was done in total silence the only sound in the room was me whispering to my daughter keeping her calm. The doctor finished and told me Arrianna has a small hole in her heart but he did not know at this point if it would need treatment and i would need to come back in 5 months but he did think it was nothing to worry about and her heart was normal, this was good for me and i felt so relived. Back to the word where the good news waited for us,
As i arrived at the hospital i was strapped to a monitor and it was clear that my baby was getting tired from the labour. Luckily she was born less than 40 minutes after arriving at the hospital. I was given to believe that due to her heart being slow she needed to be seen by " The Baby Doctor " and i was left with her in my arms. as she lay there and i looked at her i could see, my baby had Downs Syndrome, but i did not say anything cause i just didn't care, she was beautiful and as she lay on my chest and our hearts were parallel to each other we were exchanging mother and baby bonds.
The Midwife soon brought in the doctor who took her off me and examined her. From his face i could tell there was something wrong but he smiles reassuringly and said she was fine then he and the midwife left the room.
By this time i was bleeding heavily and was not able to be moved onto the word, while lying on the bed the midwife had returned and was desperately trying to encourage my baby to latch onto my breast, but she could not open her mouth wide enough to take in my nipple and tired very easily and dropped into a deep sleep each time she tried. Eventually my bleeding stabilised and i was able to go for a shower and be moved onto the word.
Day 1- Sunday 27th February 2011
It was now 5:30 and every half hour the midwives on duty were check up to see if i had managed to get Arrianna to latch on to my nipple. As morning broke i was still unable to take my eyes of my wonderful baby, deep down i knew what was wrong but inside i just did not let it bother me. Breakfast was given to me at my bed side as i was still trying to get Arrianna to feed. The morning wore on and there was no change. We were visited by various doctors all doing the same thing. Being deaf i could not understand the questions as most of the doctors were Foreign and i struggle to understand accents. I was alone and there was something going on and no one was telling me something i knew was very important.
As lunch arrived on the ward the midwives insisted that i left Arrianna and ate my lunch in the dinning area, it was such a hard thing to do but i could see i had no choice, gulping down dinner i returned to my bay to find two doctors examining my baby with out my consent, I insisted on being told what was wrong. The doctors put Arrianna in the crib and took her and me into the nursery along with various other professionals, all in all there were 5 of them and 1 of me. The one doctor picked up Arrianna and i held my arms out to take her but the doctor insisted that she was going to hold her, the nervous flooded inside me. i sat on my hands and prepared myself for the worse. The Consultant held out notes on his knee and avoided my eyes. No one would speak so it had to be me. I asked them to tell me. The consultant then broke the news Arrianna was suspected to have Downs Syndrome. i had to giggle and i told them i already knew you could hear the ice break in the room, the professionals stood easy and the doctor who was holding Arrianna asked me why i had not said anything, i replied jokingly its not my job, it was nice for the tension to leave the room. Next question was how badly was Arrianna effected because to me she is perfect no different to any other baby, the next blow was she had a heart condition. The next steps were explained and we were taken back to the Ward.
I picked my phone up and texted my mum and Arrianna's Dad to come into the hospital for the first time fear hit me how would the both react. Visiting time was soon over and i was left alone with Arrianna once more, once again we had many professionals visiting us and i was told that Arrianna and i was being moved from the ward into a side room, that hit me worse i knew then it was serious.
Arrianna and i were moved later that afternoon and through the evening i prepared myself for what lay ahead, by this time Arrianna still had not had a proper feed she was surviving on me squirting milk form my breast into her mouth this was not enough for her the amount of energy trying to feed for 2 minutes was taking her was to much and Arrianna was getting tired very quickly.
During the evening visiting time was quite it was hard to believe this precious little baby hard a problem. I continued trying to get Arrianna to feed long into the night and at 11pm the Midwifes changed over and the new on duty Midwife came to introduce herself, she noticed Arrianna was going yellow, With in an hour she had completely turned yellow and had not woken up, The midwife brought in a colleague and Arrianna was tested for Jaundice, The midwife then explained to me what Jaundice meant to a Downs Syndrome baby, now feeding was vital, i insisted i wasnt a expressing machine and a bottle NOW. She was back with everything i needed within 5 minutes. I was able to express milk very easily and quickly got fluids into Arrianna. With in an hour the blood results were back Arrianna's Jaundice level was dangerously high and if we didnt act fast it could result in liver damage and as we didnt know what damage the Downs had caused we need to help her. by 1am our room had been moved around Arrianna had taken 30ml of milk and they had brought in an incubator, once again my baby was taken from me and place in the incubator and the intensive phototherapy had begun. From then Arrianna had to be fed every 3 hours with out fails and i had to monitor how much she had taken and when she wee'd or poo'd. From then on Every 6 hours Arrianna had to have blood taken to have her jaundice levels checked.
Arrianna hated her incubator as she just wanted to be cuddled and i just wanted to cuddle her i stood my her holding her hand singing and talking to her to keep her calm and so she knew she was safe, i never left her side till morning broke.
9am the doctors returned and once again Arrianna and i were took to the nursery. This time bloods were taken from both Arrianna's Hands and Feet she was very good especially as the blood was taken from her drop by drop not in a continuous flow. It took ages. This blood was being sent to Birmingham for screening for Downs Syndrome, It took for of them to hold her down it was terrible to sit in the chair watching i was not allowed to be with her through this, i took what i could by being in the room i wasn't leaving her again. She needed me. They explained the results would not be back until Wednesday, It was going to be a long week.
WE were taken back to our room were the intensive phototherapy took place and i worked hard to teach her to open her mouth and take a feed. My thoughts were starting to turn to home i was missing my other children badly by this time and being separated from them was nothing but torture. I wanted to go home and hold them but i could see we were going no where fast.
Day 3 Tuesday 1st March
By day 3 Arrianna and i had now establish a good feeding routine, even that she was taking a whole bottle which was 100ml of expressed breast milk. She was weighed and she had lost weight which had gone down to 7lb 5oz this is a good sign and perfectly normal. The results of the mornings bloods reached us at 11:30am it was good news the Jaundice levels had dropped dramatically thanks to the feeding route we had got going and she was now allowed out of the incubator. Due to Arrianna being over due she had terrible dry skin not helped by the incubator so next, i top and tailed her ( Washed her ) and rubbed baby oils into her skin she loved all the touch and found it very relaxing.
Later that evening it was a wonderful feeling holding her close to me once again she was wide wake and alert once more and loving having a cuddle.
Later that night Arrianna showed interest in the breast, she was able to latch on and maintain a good strong continual suck, this was magical all the work i had done with her teaching her to suck had finally paid off it was a wonderful moment.
Day 4 Wednesday 2nd March
2am Ariianna was wide awake watching me expressing milk for her, She didnt need anything though i carried out the usual checks with her nappy feed all she wanted was a cuddle. I had introduced a dummy to her as this will help her with sucking.
7am Arrianna woke up again needing a feed but this time she asked to be breast fed, a wonderful moment. She fed continually from both sides for half an hour i was just so happy it was a wonderful feeling.
After her feed arrianna had her check sand she was weighed again she had maintained her weight which was excellent news. After breakfast i gave her a good wash and treated her skin once more she was wide awake and looking through the window.
WE WERE ON OUR WAY HOME !!!!!!!!!!!!!!!!!!!!!!!!!!
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