English and Portuguese updated posts

Friends who follow this story...the updated post in ENGLISH come after this Portuguese update...so scroll down ...it is all there!

Para meus amigos que falam português.
Vou fazer um breve resumo dos últimos posts sobre o Eli e os próximos terão uma versão em inglês e Português.
Este resumo vai ser meio longo só pra vocês acompanharem a história toda...por favor, tenham paciência pra ler.
As coisas começaram assim:
Os médicos sempre disseram que eu não podia ter filhos, então um dia eu estava me preparando para fazer um exame doloroso pra checar se minhas trompas estavam abertas para ver a possibilidade de iniciar um tratamento para ter filhos.
Uma semana antes do exame eu fui a um evento de oração em uma igreja antiga aqui na irlanda e uma de nossas amigas pediu para que pessoas que quisessem ser curadas fossem à frente para receber oração.
Eu lembro que eu falei que se Deus quisesse me curar e me dar filhos ele deveria trazer alguém para  orar por mim, pois eu não iria.
Primeiro eu tive a certeza que Deus me deu uma bronca e a segunda coisa que eu tive certeza era que eu não precisaria fazer o exame...
Na semana seguinte era meu aniversário de casamento e também meu aniversário e aniversário de meu marido (nós dois nascemos no dia 02 de agosto e nos casamos na mesma data.) e meu marido me levou para conhecer outras cidades na República da Irlanda. Um dos passeios que ele planejou era atravessar de barco para uma Ilha e explorar o local de bicicleta. Como eu passo muiiiiiito mal em barco o médico me receitou uma medicação na qual eu poderia tomar somente se eu tivesse certeza que não estava gravida.

Ruinas de uma igreja em nosso passeio de aniversário

Meu marido subindo a montanha com nossas bikes...não aguentei a pedalada.

Apesar de estar tomando precaução para não engravidar por causa do exame que eu faria em 3 dias, eu decidi fazer o teste mesmo assim, então, no dia do nossos aniversários e aniversário de casamento eu coloquei um teste de gravidez mijado num envelope e dei de presente para meu marido com o resultado positivo.

Tempestade de neve se formando no caminho de volta pra casa

Infelizmente nós perdemos o nosso primeiro bebê 9 semanas depois, mas em seguida eu engravidei novamente e depois de 6 semanas de muito enjoô eu curti minha gravidez saudável.
Nosso bebê levou 23 horas para nascer, num parto entediante na qual a dilatação de 4 cm demorou anos para ocorrer e no final acabamos com uma cesária de emergência porque  o bebê ficou preso e o coraçãozinho começou a desacelerar.

Amigos celebrando o nascimento do Eli

Primeira foto com a vovó Dirce

primeira foto...mamando.

Nosso Eli nasceu e logo passou para o colo do papai porque a mamãe estava tendo chiliques e febre alta...depois de ter passado horas tentando regular minha temperatura e pressão baixa eu tentei descansar, mas Eli passou a noite vomitando o muco que normalmente eles expelem depois do nascimento.
Depois de 23 horas de parto e uma noite toda tentando ajudar um bebê que não parava de vomitar eu estava extremamente cansada e preocupada. Eu já havia pedido ajuda para as enfermeiras diversas vezes e a única coisa que elas respondiam era que o bebê estava bem e eu estava ficando neurótica.

Nossa primeira foto em família.

Eu notei não só que o bebê não estava mamando, mas também não urinava, não fazia cocô e o peito estava elevado e esverdeado. Mais ou menos 9 da manhã eu recebi a visita de uma amiga enfermeira que trabalhava numa outra ala do hospital e mostrei uma fronha com o liquido esverdeado que o bebê estava vomitando. Esta amiga chamou a enfermeira responsável por aquela manhã e pediu que um pediatra viesse examinar o bebê.
O liquido que o bebê estava vomitando era o liquido da Biles  e depois de examina-lo e fazer um raio~x eles detectaram que o bebê tinha um bloqueio no intestino e que talvez necessitasse passar por uma operação.
O Eli teve que ser tranferido para o hospital infantil de Belfast onde havia uma área especializada neste problema e outros problemas digestivos, eu fui transferida para outra maternidade próxima, mas não no mesmo prédio.
O primeiro dia na nova maternidade foi difícil até o momento em que as enfermeiras me transferiram para um quarto aparte, assim meu contato com outros bebês não faria a situação mais difícil emocionalmente.
No segundo dia eu já havia esquecido o rosto do meu bebê e não me lembrava de seus traços ou do seu choro. Eu estava com um corte dolorido na barriga e não podia me movimentar muito, meus seios estavam explodindo tentando produzir leite, mas sem ninguém pra ajudar a começar a produção...ao mesmo tempo meu corpo começou a reagir a uma das medicações e eu ainda não havia percebido ...eu estava febril, com diarréia e uma bola enorme num dos meus seios.

meu marido tentando me fazer rir

minha primeira visita ao bebê...ele conseguiu me fazer rir

recebendo um carinho do papai

Mais tarde, naquele dia, meu esposo trouxe uma cadeira de rodas e me levou para visitar meu filho no hospital infantil. Eu mal coloquei o pé na ala e entre as 6 incubadoras eu consegui identificar meu filhote em segundos. Ele estava agitado e com tubos conectados no nariz e no pênis para ajuda-lo a urinar. Ele havia feito uma biopsia no intestino na qual estavamos esperando o resultado e não comia a dois dias, só tinha um soro para mante-lo hidratado. Duas vezes por dia as enfermeiras faziam uma lavagem no intestino inserindo um tubo no reto e aplicando uma solução com uma seringa.

Um bebezinho muito doente antes de ser operado.

Eu pude segurar o bebê por alguns minutos e não foi uma tarefa fácil contando o número de coisas que estavam conectadas a ele e pra ajudar na dificuldade eu cheirava a leite e depois de dois dias sem comer o bichinho estava com fome. O cirurgião escolhido para cuidar do caso dele é um excelente médico chamado  Isaac Philips. Ele veio nos ver naquela tarde e  nos disse que o bebê foi diagnosticado com uma doença congenita chamada MEGACOLON CONGENITO. Isso significa que parte do intestino do Eli havia nascido sem os nervos que sentem e indicam a presença de fezes no intestino, então as fezes ficam paradas sem a possibilidade de serem expelidas caudando infecção e deixando a criança muito doente. Se não tratada logo alguns casos podem ser fatais. Aqui na Irlanda nós viemos a saber que é raro um bebê de apenas 2 dias ser diagnosticado com esta doença, pois muitos casos são tratados como uma constipação crônica e são detectados quando a criança já está muito doente e é mais velha.
A solução para este diagnóstico veio no dia seguinte.
Aos 3 dias de vida nosso pequeno Eli teria que ser operado.
Os médicos trariam uma parte do intestino que ficaria exposto na barriguinha, aqui eles chamam de STOMA, as fezes seriam coletadas em uma bolsinha de colostomia e teriamos que esvazia-la quando necessário e trocar a cada 3 dias. Mais tarde, com 4 ou 5 meses, ele passaria por uma segunda operação e a parte doente do intestino seria colocada de lado, a parte saudável seria extendida até o reto e conectada novamente, assim ele poderia usar o bumbum normalmente.

Eli recebendo um chameguinho da vovó

Os três mosqueteiros cansados e esperando nosso Eli sair do centro cirurgico.

Enquanto eu estava no quarto da maternidade meu marido levou o nosso primeiro filhinho para o centro cirúrgico. A enfermeira que o pegou no colo disse para meu marido: " Você quer dizer ADEUS para seu filho?"
Acho que ela não havia notado quão difíceis estas palavras soam para um pai cansado e que esta levando um bebê de 3 anos para uma cirurgia. Meu marido saiu do centro cirúrgico e correu para um jardim reservado do hospital e chorou...ele diz que foi a primeira vez que lhe ocorreu a possibilidade de não ver o Eli vivo novamente, afinal ele só tinha 3 dias de vida e qualquer coisa poderia dar errado.
Então ficamos na maternidade, meu esposo, minha mãe e eu...esperando que o nosso menininho retornasse.

A longer account of our journey!

So...here we are to continue our journey.

The first night at the new maternity wasn't very though. I was so tired that slept like a rock. I was just woken up by a doctor trying to get a blood sample while I was sleeping  but she had to  ask how to spell the name ELI which I found amazing she couldn't do it by herself.

At 5am a multitude of baby cries woke me up and later a nurse ask me if I was ready to have my breakfast. I said I was sooooo ready and waited for it patiently...two hours later no breakfast was served and I got up from bed and struggling to walk to the nurse station but determined to have something to eat I asked for my breakfast...

Then I found that breakfast wasn't served on the bale, but in another room which mothers should walk to if they want to eat. The problem is that nobody told me that and I missed the breakfast time. As a good Brazilian I decided to let them know how upsetting it is for a mother who didn't have proper food the previous day because of the hosptal change and is tired, sore and weak to not have the appropriate information about the maternity routines...besides to be watched by a group of mothers nursing their babies with inquisitive eyes about "where is her baby?" wasn't nice too...so not having the breakfast that morning caused a big impact on me. It just made me to have a deep dislike for the place...once I tried the food I realised I wasn't missing much.

Getting a cuddle from daddy.

Before the operation...a very sick baby.

Thankfully Garreth was coming with my mother and they brought something for me and at the afternoon shift a lovely midwife (which unfortunately I forgot the name!) not just assured me that I was going to a side room so I could be taken from the site of other babies as she understood it would be very tough emotionally but also granted us the blessing of having my mother at all time with me in the room something is just possible for the partners.

Once capuccino and chocolate muffin was taken and I settled in my new side room with my faithful helper (my mother) with me the same nurse came to  check on me and encourage me.

Soon after Garreth was back from the children's hospital to give some updates about Eli.

He wasn't been fed with milk as his bowels needed to be empty and clean to do a biopsy, they were doing a wash out in his tummy to help him to relief himself and had a drip on at all times. Garreth said he had his moments which he was unsettled but most of time he was ok and the biopsy was going to be done that day...to help with my mother boredown he brought her a word surch in ENGLISH and believe me she was buzy enough trying to find one.

I had a few visitor that day but the order of the events are quite confusing in my memory.

My second son wearing Eliºs dungaree.

I remember my mother in law, Jenny and  Alison visiting. I think Wilma was still in Australia at that point and returning in a couple of days. I remember Nicky visiting and she brought music which was so helpful but maybe it wasn't that first day. Then Linda Gordon came with pijamas for me and they were such a great gift. She also brought a beautiful denin dungaree for Eli which he never wore as it was for a new born and unfortunately didn't fit at the time he could wear it. Then I dress up my second baby on it. Hazel came to see me with a bag full of delights to help me with the breastfeeding job and any other person who came I just apologise because I forgot. Nobody could go to see Eli at that stage. So Sad!

Then as I talked with my mother in law she asked me something about Eli's looks and I tried to remember that particular detail but I couldn't...I just couldn't remember Eli's face.

In fact that shocked me and deeply upset me. I just couldn't remember him. It gave me butterflyes the possibility of Eli dying at the other hospital and myself not having memory of his face. 

silly husband.

Cuddle from vovó Dirce.

That day my amazing husband came with a wheelchair and we crossed half of Belfast (joking!...but with my pain it feels like it.) to see Eli.

First visit to see Eli...sore laugh because of tthe silly husband.

I arrived in the ward and saw 6 incubators in two rows of three, placed opposite each other. All my concerns about not remembering my baby's face faded away as I look at one particular incubator where a baby was crying and in a matter of seconds I said: That one is him...what a relief. I knew my own son!

Mum and Garreth went away for some minutes and I had my first encounter with Eli's Doctor, Mr. Isaac Philips. He came to the bale and started talking about Eli.

What did he say?

I have no idea.

I was so tired that I couldn't understand a work he said. Quicly he realised that and ask:

Where is your husband?

Toilet - that was my only word. And he decided to wait for Garreth.

I spent as much time  I could with Eli but then it was time to leave and that separation wasn't very easy but at least I saw him, I recognise him and I went to bed that night picturing his face in my mind over and over again as to memorize his face.

I looked around the room and noticed there wasn't one single thing there that would show people that a baby was born...nothing celebrative...I missed a baloon...a simple heliun baloon to say : IT'S A BOY. 

It was a restless sleep...emotionaly sore, physicaly sore and spiritualy things wasn't getting easy either...and I seriously wanted a baloon!

Next morning was a important one.

Garreth came with photos of Eli taken by his mother so to avoid myself to forget him again. I found it very thoughtful from my mother in law and really appreciated the gesture. Later, Garreth came with important information:

Eli was diagnosed with hirschprung disease and had to go through an operation.

There was two options which we had to choose.

The first one was called something like KEY HOLE, which they make three little hole on his tummy for intrument and a camera. Then they would cut off the bad part of his bowel and re-connect to the rectum....there was a period tho which we had to flush his bowel three times a day at home, using a seringe and some other thing till a second and third operation could be done...I honestly can't remember much of the details.

 It was a new method and I think it was done just around 9 times...all successful.

The other option was to open a little hole on his tummy and pull part of his bowel out, something they call stoma. A colostomy bag would collect his waste and we had to empty it when needed and change the bag every three days. After 3 -4 months when Eli was stronger they would close the stoma, pull the bad part of the bowel aside and re-connect a good part to the rectum, so he could use his bottom.

 The operation would be done that day so we had just ...that morning to decide.

Garreth, my mother and I talked through it and decided to go for the colostomy bag option. Then Garreth left to let the doctors know our decision.

The team...photo taken by my father in law...yes, I rememer now. He came and visit!

Later that day Garreth returned looking a bit strange.

He said he took Eli to the area where children are admitted to the theater then a nurse said: " Do you want to say goodby to your son?".

Garreth said he left the place and found a area withing a garden close to the hospital and just broke in tears...to ask him to say goodby to Eli wasn't that natural and normal...he could never return...but we just waited and pray he would return.

 

Eli

photo taken the day I went to hospital

I have to say that God was very kind to me and brought my mother from Brazil to help me for two weeks before the birth and another 8 weeks after it.
I was 8 days over due and there was no sign of Eli getting any interest of leaving my body so they book me to a induction and at the hospital we found out it wasn't needed as I was 4cm dilated and in labor already.
The labour lasted 23 hours (which I slept 3 times thanks to the amazing Epidural) and end up in 20 minutes with an emergency C-section.

Eli's first photo - 2 hours of life

Eli's head got stuck and at that point the medication was droppping my blood pressure and Eli's heart bit was also dropping so they didn't try anything else: just let's go and cut the girl! They took him very quickly and someone put him beside me. He open his little eyes and look at me. I thought: " My baby is looking at me! He is  looking inside my eyes!" (Such things come to our minds at these times, the boy just open his eyes and happened that I was there...he could have looked at a sea horse and he couldn't tell the difference!)
I have little memory of the next few hours after labour because my tireness was so bad that I insisted with Garreth that Eli had 6 toes. I remember having a reaction to the pain killers and shaking  mad while my temperature was raised. I couldn't hold Eli for at least 1 hour and all I could do was to watch Garreth cuddling him in a corner. I was a bit jelous! I'm the one who carries him for 9 months and go through labour but I'm the last one to hold the child! So unfair!

First family photo

When I was ready to hold him I just couldn't control my sleep and had to ask Garreth to be around as I could drop him at any moment.
Finally we were alone and I could have a good look at my little boy. I have no idea what time I was taken to the ward but I think it was late enough because Garreth left me alone to rest quite soon.  I looked at him and thought he was very alike his uncle Connor, my husband's brother and laugh with the thought: " What people will think when they see you are alike your uncle and not your daddy?". I found amazing the fact he had the same birth mark as my husband on the back of his head and said - this time quite loud - no doubt you are Garreth's son. You have his stamp! (At that point I didn't know that uncle Connor and nana Sharon had the mark too! Just amazing!)
Hazel, a friend from church and midwife who worked at the maternity came around to help me breastfeed and I was delighted with the help. It was around 6pm when she came as far as I can remember and that was the last time Eli fed.
The next hours was quite difficult! I was so tired after the long hours of labour and Eli just didn't stop vomiting some dark liquid which the midwives said were perfect normal for a new born to do so. That was ok till I realise that the liquid became a kind of bright green and he was getting sick too often, not interested in feed and not passing any wet or durty nappy.

Nana Sharon

At some point that night I called the nurse and said I thought the baby wasn't well because of his constant green colored vomit, cry and lack of interest feeding. She said that I was tired and a bit paranoid  because it was my first baby so baby was ok.
I couldn't sleep that night either (after 23 hours labour...keep adding the hours awake!) and in the morning there was no change on Eli's state.
The nurse shift changed and I called another nurse in charge and shared my concern. She also said it was ok and there was nothing to be worry about. I showed her all the sick clothes and also how Eli's chest seemed raised (I remember thinking: Gosh! My son will have a chest like a bird!)
I was truly worried about him and totaly hopeless with the help of the nurses so I prayed and asked for help. 10 minutes later Hazel come around again to check on us and I shared the trouble. She also thought that it would be important to investigate his green sickness and ask the nurse in charge to come have a look and ask the doctors to come and see Eli. (By the way it was the same nurse I talked 3 times prior to that!)
In just 20 minutes a doctor came to see him and checked his tummy. He said Eli would need a X-ray to check if something was blocking his bowel as the green liquid he was throwing up was Bile, a fluid secreted by the liver and discharged into the duodenum.

Garreth was on his way to hospital with my mother and he was coming for the visting time to meet his mum, step father and dad.

Granda Robert

Everybody arrived and all the buzz about a new baby was going on. I'm not sure how Garreth was at that moment but he was just trying to back me with the visitors as I still had no sleep and had my mind at the fact that Eli was going to have a x-ray. That was enough to bother me. My baby shouldn't have a x-ray after 20 hours of life!
In the middle of the visit from the grandparents Eli was taken to do the x-ray. The grand parents didn't stay for long and left before the doctor return to talk to us.
The doctor said there was something blocking Eli's bowel which needed to be investigated so they were transferring the baby to The Children Royal Hospital in Belfast (we were at Craigavon) as they had an excelent ward and doctors prepared to take any action needed. Then he said: "He might need an operation."
That sentence worked as an echo in my head. It was just there and I couldn't digest it!
The nurse came to take Eli and prepare him to the ambulance. Another nurse came to ask if we were ok. Garreth said something about we been objective and strong for the baby and at that point it was something I felt too then Garreth left after some more talk with the staff about trying to transfer me to the Maternity at the Royal so I would be closer to Eli.

First photo with a very tired mother

It was quite quiet at the ward and for the first time I felt how sore my operation was. I felt desappointed by the Creator who created my son so I sat on the bed and cry. I don't know if the expression " I cryed bitterly !" works in English but it describes the kind of cry that comes deep from your soul and make it ache! That was my cry! I said to God: "I shouldn't be here. It shouldn't be me!" I got some song my sister sent me about finding peace in the Prince of peace and play it at the mobile phone over and over again trying to find it for what I knew who God was in my life but it was such a struggle!

Daddy helping to settle baby

I could hear Eli's cry from the nurse station. My first reaction was to get up and follow the cry. I found him with the doctor and a nurse trying to put a drip on him. I really want to take him from them, hug and say: "That's ok. It was a misunderstanding. You are ok now." Another nurse saw me and aske me to go back to my bed as I just had an operation and had no sleep. Soon they came to say Eli was ready to go and I could go to see him. He was inside an incubator with so many marks on his hands and feet of the attempt to get a drip. It was so painful to look.
Garreth and mum came back and on the way to the hospital we could see Eli's ambulance driving through the motorway. It was raining and I couldn't take my eyes from it. Now and again we lost it and then found it again among the cars. I thought:
"It is wrong to take a baby way from his mother like this. I should be inside that ambulance with my baby. I should be there with him."
I know that praticalities might not allow a mother to be transfered with babies to other hospitals but I have to say it is a painful separation  to baby and to the mother. The feeling of impotence and failure in keep your baby safe and well is horrible. I think it should be handled in a different way at least for the mother's sake.
We arrived at the royal quite late. Eli was taken to the children's hospital and I was in the other building at the maternity ward with lots of babies...
but no baby to hold!

Friends celebrating Eli's birth

With great power come great responsibility!

I think every one will agree that having children is an amazing previlege and a state of power in wich parents are given a little human , with their own personality, but a whole character to be developed. This put parents in a place of power over that human  but also brings a great responsability that must to be exercised with deep love.
Our adventure stated almost 3 years ago, in 2008,  when my husband took me to a trip to Ireland. Over there we intended to go to a Island by boat and spend the day cycling around. As I'm a "motion sick person" I had to take a medication 24 hours before the boat trip but the doctor made me promise to test for a pregnancy first as the medication can't be taken by pregnant woman.
24 hours before the trip meant it was our birth and anniversary (we share the same birthday and got married on the same date!). So I woke up a bit sick that morning but went to "wet the stick" and test the pregnancy, husband left to get breackfast and a bunch of beautiful fairly traded roses. And the news that would change our lives forever were revealed!
I was pregnant with Eli after having a first miscarriage (subject to another post) a few months before.
Eli was the amazing reason why I was sick. Eli was the amazing reason why I couldn't go to our boat trip. And he was also the reason why my husband got for that birthday and anniversary a wet stick with urine inside of an envelope (The reaction when he open his birthday card was: "yuck, you pii on it!" and I said: "YES"! as it was totally fine!)
Why am I telling all this stuff which seem so normal?
That day we went cycling up (or trying to) a montain and we were incredibly happy.
We didn't know our baby was a boy, we didn't know I was just 6 weeks pregnant and the next 6 weeks after that I was going to be sooooo sick and specialy we didn't know that our baby would be born very ill with a condition called Hirschprung's disease (In Portuguese it is named Megacolon Congenito.).
That is the story I want to share.
It is about how a baby wich was less than 3 days old became our hero and how it has been to raise a very brave boy with a congenital illness and our journey caring and loving a little hero.
Here some photos of that great trip:

A lost castle on our way to Killarny

The Irish sky on during our trip back to Dungannon

Myself and Eli (6 weeks) coming down the montain

Garreth going up the mountain with the two bikes - I wasn't fit for that cycling up!

Garreth taking a photo on the Cliff's of Moha