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Helaina's Story - The First few weeks
As I opened the front door to leave for work this morning, I heard "bye dad" I turned to see my daughter in her pyjamas on the stairs behind me, a huge smile spread across her face.
After we married and bought our family home, like all married couples, we wanted to have a family. This proved more difficult than expected. It turned out we were part of the small percent of the population who had difficulty in conceiving.
We embarked on an 8-year journey leading up to that fateful ultrasound scan, a journey consisting of a merry go round of treatment, expectation followed by deep depression when luck had not gone our way.
Finally, success, the surprise and shock was overwhelming. We had gone from a couple trying for a baby to a couple with child. At long last the end of the medical treadmill.
16 weeks after the good news, my wife lying on the couch with the technician looking deeply at the screen, her joyful chatter stopped, silence. Moments passed, but time had stopped we looked at each other as the radiographer turned, her face no longer smiling as she said "I need to get the doctor" as she left the room. We just sat in stunned silence not knowing in fear of losing our precious child.
The doctor arrived, reassuring yet at the same time concerned as she silent looked at the monitor, with the only sound in the room being the click, click of the keyboard.
After the scan, we saw the pictures, hands and feet twisted, extra skin and something was wrong with the baby's heart. We asked the obvious question "what's wrong" only to be told that they did not know, before we left an amniocentesis was carried out and we left the hospital with the knowledge that the results would be in within the next 3 weeks.
The time passed slowly, and then the call came "everything is within normal limits" something we would hear many times over the next few years.
At 20 weeks a detailed 30-minute scan was done, things did not look good. Still the strange hand posture, things looked bad, so bad in fact, we sat down with a cup of NHS tea. You only get tea as an outpatient under 2 circumstances,
- When you donate blood, a great cup of tea and a biscuit
- When the news or a diagnosis is bad
About all I can remember of that time is the tea, and the words that we dreaded, "you should think about a late termination, because we don’t think the baby will survive birth"
We went home in a daze discussed with friends and family. With all our worries and fears even mentioning abortion caused a rift with at least one friend, a friend no more..
Our hearts breaking we decided that as we fought so hard to have this baby we were not giving up now.
Weeks passed, scans followed by scans gave no answers. We had each other and who knew what the future would bring.
At 38 week, one elective C-section later, the obstetrician lifted up our baby and said, "We were wrong" as the baby, screamed we had our perfect child.
We decided when we knew our daughter would have some sort of problem that we needed to find the perfect name, one that was unusual and interesting, just like she would be.
We both liked the names Helen and Elaina so my wife put the two together and we called her Helaina Lucy. I like to tell people that Lucy was because I am a big fan of Paddington bear, and well we could not call her Helaina Paddington, because we are not famous celebrities who call their kids all sorts of names, so we went with Lucy, Paddington’s great aunt instead.
My wife and I looked at each other over the operating table as the doctor handed this small fragile sticky bundle over to us; we had made this baby, this impossible miracle child. At that moment, all of the stress and worry of the past months melted away, as tears flowed to meet by the smiles on our faces.
We had had our first hugs and the doctor took her away to be checked and cleaned, and apart from the funny way, she held her hands everything appeared to be OK. The funny hand position also explained why she had looked so strange on the scans.
Shortly after leaving the Operating theater and returning to our room our baby was brought to us, now all shiny clean and beautiful, as I looked down at her I felt instant love. Sadly although all the tests the doctors did came back fine, things were not fine, and it soon became apparent that something was not quite right when it was time for her first feed. For some reason she had troubles sucking and drinking. The nurse came and told us not to worry, she must be holding her wrong, and baby will feed when she wanted to.
We did worry we had months of worrying so why stop now, and during that day despite trying and failing many times our daughter just could not feed. With words of encouragement from nurses, as well as words of mild rebuke for poor technique Helaina still did not feed.
Sadly, the attitude of some of the nursing staff led to blame and disappointment, we were lost and needed help yet were told, “You must be doing something wrong”.
During that first day we gave lots of hugs and hoped that the feeding problems was down to the stress of being born. I went home that night looking forward to the future.
The following day things changed. Helaina had not fed at all the previous day and had become dehydrated. She had been taken to the special care baby unit during the night. This gave my wife a little time to recover from the C-section without the extra worry of breast-feeding, and for the doctors time to figure out the feeding and sucking issues.
The special care baby unit was scary all beeps and machines. The plan was to try a bottle feed for breakfast and see what happens. My wife picked Helaina up, and the nurse handed her a bottle of warm milk. Slowly very slowly, our daughter drank a little and 30 minutes later she had drunk a small amount of milk, only to throw up everywhere. How can someone so small make so much mess?
The first day in the Special care baby unit was a strange one. More like a dream than reality. We were lucky we could hug our daughter. Many parents could not because of the tubes.
The nurse’s came, sweet smiles of reassurance across their faces. Then the doctors, down to earth but with no answers to what the problem was. We just sat, hugged and watch her sleep in our arms.
Baby sick on its own is yucky but something every new parent will experience and be able to cope with. Helaina’s sick was something else, a mixture of milk and mucus. So sticky that I am sure it could have been used in some industrial process instead of glue. This went on for 4 days, lots and lots of baby sick. We became ever more stressed and worried. The worry made worse because all the tests came back “within normal limits”. Each night I would go home stinking of puke. It was home shower bed. While Cath had a harder time, she was still recovering from her C-section and was staying in hospital, and was slowly slipping into a state of post postnatal depression.
Because of all the vomiting they put an IV line in the back of Helaina’s hand. She was not happy, but at least she was getting some fluids.
On the 5 th day of her stay in hospital we arrived at special care to find that she had developed jaundice. Lying with her blindfold under the blue light she looked so small and vulnerable. The staff had also inserted a feeding tube via her mouth, not the best idea, because as soon as they gave her a feed, she threw up, milk, mucus and tube. Next step was a tube down her nose, again small amount of milk and back it came, this time the tube stayed in her nose, but came back out of her mouth.
As soon as she had recovered from her jaundice, an ultrasound scan was done on her head, just to see if there were any issues with her brain, such as a bleed. After the scan all was well, except her ventricles were slightly enlarged. But one again we were told that they “were within normal limits”.
Without any answers we did the best we could, lots of hugs and kisses and hoped things would improve. Something was not quite right, Helaina has very bendy fingers, and her ears were lower than they should be. She also had a very short neck. The geneticist came, and for the first time we could talk to somebody who listened and understood or worry’s and fears. Although there were no answers, at least somebody was taking the time to listen and find out what the problems were.
The next few days were the same, sit by Helaina’s cot and watch her sleep, lots of hugs and kisses and hope things would get better. Little did we know that rather than get better, they would get a lot worse.
Cath and I slowly got used to the hospital and its routine, a quiet breakfast, and then we went to the special care baby unit. Time passed slowly, with each day came more worry. Helaina was unable to suck very well, just 2floz of formula would take over an hour for her to drink, she was excused just trying to feed. The constant vomiting after feeds just added to the stress.
Over the next few days, we spent our time between feeds, cleaning up and waiting for more tests. Unfortunately and no answers were found.
Caring for someone in hospital is a lonely task. People, all of whom are busy with their own problems, surround you. Friends and family phone and visit, each one asking the same questions, questions that you are unable to answer. Which only makes the isolation worse. As Cath and I sat by our precious daughters bed we both felt a deep loneliness, what can you say to each other, what words can you share that would not sound hollow.
Helaina had been in special care for nine days, and apart from the feeding issues, everything else was going well. At night I went home to sleep in my own bed, Cath was in the hospital, she was still recovering from her C-section and had no escape from the hospital routine and worries that each day brought.
On the 10th day I over slept, and was late to the hospital, so late for breakfast. I met with Cath in her room and we went up to special care. This day was different, as we looked through the glass Helaina was surrounded by doctors and nurses, we knocked and banged on the door, and when the nurse finally came to see us she would not let us onto the ward, and she could not tell us what the problem was. Cath collapsed screaming and crying we thought our baby had passed away. For the next 20 minutes, we waited and hoped not knowing not daring to think what may have happened.
Finally, we were allowed in, and the amazing cardiologist explained that Helaina’s heart had gone crazy. When we arrived, they had been working on her for long time, her heart rate went to over 220 beats per minute, and they had had problems stabilising her. If she had been at home she would not have survived, fortunately for us she was in just the right place, with some fantastic nursing and medical staff to look after her.
She was given medication to help her heart, and over the next few days watched very closely to see if she would throw any more surprises. The heart problem however provided a small piece of the complex quest to find out what was wrong with her.
Cath slowly recovered over the next few days, but refused to leave the hospital until Helaina was well enough to come home. The next few weeks were uneventful and after 6 weeks both Cath and Helaina came home.