Saturday 5 March 2011

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.

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.  




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,

WE WERE ON OUR WAY HOME !!!!!!!!!!!!!!!!!!!!!!!!!!

2 comments:

  1. Beautiful story! You are such an amazing mum! Wishing you peace, love, and magic on your journey with your gorgeous little one.

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  2. omg wat an amazing story! she looks beautiful! i sympathise with you on your hearing loss and how difficult it is esp at the hospital, i have a profound hearing loss and wear a cochlear implant to help me. i also have 3 young girls and found it difficult at the hospital while in labour or havin check up by the doc who has a strong accent. congrats on ur lovely little girl!
    p.s its a beautiful name for a beatiful girl! x

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