Our little miracle – and a cliff hanger! *finally finishing it!!*

** I know this is very very overdue and you all know what happened, but....I am going to finish it anyway!! **

I decided to do this journal – mainly because I wanted to have something to look back at one day and remember what I have been through and because we tend to forget how we really felt about things when things occurred. Also because there are many things in it which you can all relate to, and some which my reactions to even surprise myself. Maybe my strength will help someone in a similar position.

Brief intro – I am 25yo a law student in my 2nd year and my bf, Mike is 22. After a short unfulfilling marriage, with my ex husband, we met and fell instantly in love. We weren’t trying to conceive but he was unable to wear condoms, and I was allergic to most manufactured hormones. I had tried every form of contraception going, even a coil – but had no luck. My bf works as an engineer on a cruise liner and was sailing around east North America and Canada September 2007 when I joined him. I had never felt so broody in my life and after a few days we talked about the inevitable – that I would probably get pregnant. We both agreed that it wasn’t the best time and we would rather wait, but if it happened, it would be welcome. We even chose a name – Thomas. Unbeknown to ourselves, I was already 2 days pregnant and it was indeed a boy!

In the beginning!
Within two weeks my breasts were so sore that I could not sleep on my front anymore. I was getting cramps in my tummy worse than any period pain I had ever had, by week three I felt constantly nauseous and had completely lost my appetite. I became very worried about my health and thought that something must be very very wrong – I was so worried about the flight home.

At the end of week three, I flew home to the UK. I went to the doctor as soon as I could. She did every single test she could apart from a pregnancy test, as she said it was way too early for me to be showing pregnancy symptoms. By then the pains were unbearable!! That night at midnight I googled the symptoms and the words “ectopic pregnancy” occurred over and over again, so I did a HPT which could not have been more positive!! The little plus sign showed before I had even finished doing it! I think I went into a state of shock and fear, as I immediately put the test down, went into my bedroom, got into bed and rewound the dvd I was watching to the point it was at before I went to the bathroom. Eventually it clocked and at this point I phoned my parents (well after midnight) and told them the news. They were over the moon but eventually grasped the potential seriousness of the situation and took me hospital as fast as they could, really really scared I was ectopic, but at the same time chatting away excitedly about being grandparents.

Me and my sister sat in A&E for 7 hours waiting to be seen by a doctor. During this time, despite my fear, we were both so excited at me being pregnant – we talked about everything from baby names to where he would go to school! My parents weren’t allowed to stay but couldn’t hide their pleasure at possibly being grandparents!

Eventually the doctor saw me, and looking at my notes and before she even asked why I was there, started lecturing me on contraception! “So I take it you are sexually active, do you use condoms? Ever thought of going on the pill…” etc, all really sarcastic. I didn’t understand and said “does it matter? I am pregnant?!?!” She turned to me and replied “oh, so you know then…”. I cut her off with “of course I know, that is why I have been sat here for 7 hours!”, then it occurred to me, she was talking to me like she was my mother so I pointed out I was 24 years old and well informed about contraception, at which point she blushed, apologised profusely and said she had thought I was underage! If it wasn’t such a serious situation, I would have rolled on the floor laughing!

Next thing I knew a nurse was sticking drips in my arms so badly that I fainted from the pain (and I am good with needles!) and I was being loaded into an ambulance to be taken to a Maternity hospital where they scanned me over and over again and put me on strict bedrest.

After a few days of observation, consultants were unable to find my pregnancy on a scan despite my hormone levels being much higher than they should have been when pregnant. The doctors decided to operate to remove the pregnancy – convinced it was growing outside my womb. I was rushed into theatre as soon as a space was found. I was utterly disappointed and scared. I wanted the baby from the moment I found I was pregnant. I was so upset and was crying and screaming as they injected me with morphine and anaesthetic and I fell unconscious. They made two incisions, one just above my pubic bone and one that ran from my belly button down a few inches.

When I came round, a nurse said “It is all ok, they couldn’t find it, you’re still pregnant!” and shoved a photograph of my ovaries taken from inside me, in my face. It was so pink and disgusting looking that I had to close my eyes to stop myself being sick! A woman should never be able to see her own ovaries! But it seemed the pain had been caused by a cyst.

The next day I was able to talk to Mike in America who was desperately worried as he knew I was in hospital, but not what for. No one had wanted to break the news to him. I told him “it is ok, I will be fine, but I am pregnant!” The line went dead as the connection got cut off and I had no idea whether he had heard me or not! A few hours later he managed to get through again and he had heard, and was in a state of shock for a while, but was over the moon!

I was kept in for a few more days for monitoring whilst I healed and then released and told to return in a week.

A week later, at 5 weeks, there he was, just a blob on the untrasound. But a blob in the right place!

Whose idea was it to call it “morning” sickness???

Many weeks went past in a blink of an eye. The nausea very quickly turned to morning sickness which lasted the whole day, everyday. I couldn’t keep food down and could hardly leave the house, nevertheless I kept myself occupied with uni work and sleeping. I was so tired I slept for most of every night and day.

I had my dating scan with my twin sister. It was such an amazing moment seeing him there on the screen, moving around so much! He was standing on his head and waving to us like he knew we were watching. He was so small but looked perfect. I had chosen not to have the usual checks for downs syndrome and but all his measurements were fine and normal – apart from his legs being a little on the long side, like his dad! He was perfect – my little miracle! The MW was so friendly and shared our excitement.

Mike was due home at Christmas and I was so happy to be pregnant and couldn’t wait to see his reaction to my new figure and hug him for the first time since finding out we were going to be parents.

We spent Christmas together with his parents, him celebrating, me puking and suffering from an infection in my surgery wounds which was proving persistent, with me throwing up most antibiotics, and UTIs. I thought I was going to turn into a cranberry, I drank so much of the stuff! My bump grew very very quickly and was really apparent! People always commented that I looked like I was having twins or looked a lot more pregnant than I actually was. We couldn’t have been prouder.

At 19 weeks my bf went back to sea and my morning sickness was looking up. I was sick much less now and over the last few weeks had started going back to uni and getting back on track with missed work. My 20 week scan was due the following week, and the week after I was due to go and spend a month with Mike on his ship in Mexico. Baby was starting to confirm that the fluttering I had felt for weeks really were him moving around. He wiggled around so much! Unfortunately though, this amazing life changing feeling was to be kept to myself as Mike couldn’t feel him yet.

The bad news…

The week after Mike went back to sea, I went to the hospital for my anomaly scan with my mum. There was a terrible wait and we went in over 40 minutes late. The sonographer told me to lay down and put the gel on my tummy and started scanning without so much as a “hi, my name is..”. The only thing she said was “is it right you didn’t have your nuchal fold scan?”.

She turned the screen away and didn’t say another word and took what felt like forever. Meanwhile me and my mum chatted excitedly about the baby and my plans and whether it would be a boy or a girl. Eventually the sonographer turned the screen around and said “This is your baby…and we have found an anomaly on his spine……looks like spinal bifida. I will get someone to come and talk to you, if you would just take a seat in the waiting room”.

I felt totally shocked. I went numb inside. I knew most problems you could have but had never really looked into spinal bifida. We had decided that we didn’t want to know if the baby had downs because we knew there was nothing we could do, and we would not be able to terminate, unless the baby was unviable. I knew this was bad…very very bad. I held myself together still feeling numb and asked whether it was a boy or a girl. The sonographer put the scanner back on me and pointed to the screen – “that..” she said, “looks definitely like a boy!”.

I turned to my mum and said “I told you so!!” A boy was what I had wanted and so had my bf. The sonographer asked if I was ok and showed me out of the room, looking quite confused at my reaction. I was aware that I had shoved the information to the back on my mind and didn’t look at all concerned at what she had said. We took out the picture and sat in the waiting room which was thankfully now empty. After a minute or two I broke down uncontrollably. I had never felt so deflated and devastated in my whole life. I had no idea what this meant and I didn’t want to lose my little boy. I had never expected anything to be wrong. I had been feeling him move for weeks now and assumed everything was ok. I don’t think I had ever felt like that before in my life. It truly was the worst news I had ever received in my life and all I could do was cry.

I was taken to a side room and a midwife came to see me and after offering me some tissues, a drink and a hug, she calmly sat down and explained it to me.

At around 28 days, the neural tube fuses and the spine forms around it like a zip, from top to bottom. “Spinal Bifida” meaning cleft spine is when a gap forms in the spine causing the neural tube to be bare and nerves to poke through the spine and become damaged. The height of the anomaly usually determines which nerves these are. Damaged nerves can affect any part of the body – generally the higher the defect the more serious the damage. The area affected in my baby was lower spine which meant his legs, bowels, bladder and sexual function would be affected. There were also indications that he was developing an associated brain condition called hydrocephalus which is caused by fluid build up on the brain. This meant that the baby could have a lowered IQ, poor co-ordination and require life saving surgery to release the pressure on his brain, which could in turn lead to infections such as meningitis. He may require further brain surgery and surgery to his legs, bowels etc further on in life.

I listened to her whilst quietly sobbing, taking this all in. All I could think of was how Mike was going to take the news stuck on a ship with no friends and family. All I wanted was to hold him. I felt like the world was ending… but with my knowledge of the spine I managed to figure that it might not be as bad as she was saying and started asking questions, like likelihoods etc. The worst case being that he be paralysed from the waist down, to have shunts inserted into his brain, and suffer from brain damage. She was unable to give me more information and could not be specific. She was only experienced in dealing with spinal bifida in unborn babies and so had no knowledge of what happened when they were actually born, but arranged an appointment for a further scan and a consultant and surgeon to explain more to me the following week. But before she left she reminded me of my option to terminate the pregnancy.

This came as a huge shock to me as I had not even considered it. There was a chance that there could be very little wrong. I bore it in mind until my next appointment when I would know more, but I don’t think I could ever have done it.

I drove home switching from numb to shock and my mum called my sister who came round straight away. She works with human bones so knows quite a bit about spinal bifida and managed to reassure me that as the defect was right at the bottom of the spine, the problems could be minimal – such as weak ankles, needing support later in life. I tried to hold onto this and waited for what felt like the longest weekend of my life until my next appointment.

When a weekend can feel like a lifetime

Mike finally got in touch that evening. I broke down on the phone to him but he was brilliant. He asked so many questions but remained so optimistic. He shared my view that as long as there was a chance our baby could lead a normal healthy life, we had to give him that chance. There was then no question in our minds about terminating the baby. We were strong people who were physically capable of looking after a disabled son, should the worse happen. We accepted it would not be easy, but he was already our little miracle no matter what happened.

Now I had never been a religious person – but I believe in fate. You get what you are dealt and then you deal with the situation. What will be will be. There are too many ifs and buts in life to try and dictate your path. He could be fine. He might be run over by a bus before he is five. He might be born with a disease etc. I knew what we might have to face and for that I considered myself lucky I could prepare. My mum even said to me “You are gonna ask yourself “why me”? and I know what any religious man would say, and I would have to agree – “because someone has to, and you are strong enough to cope””.

During the next few days, I slipped in and out of shock and cried whenever anyone mentioned him, but I slowly pulled myself together and eventually felt I could deal with anything. I was already so in love with my baby that I would do anything for him, and if that meant go through hell and back and spend the rest of my life looking after a seriously disabled son, then that wasn’t too much to ask. I had heard that maternal instinct can make a mum to be protective of her unborn baby, but I never expected it to kick in so strongly!

Mike’s mother called to check that the scan had gone ok and to be honest, I didn’t want to tell her. I felt it was somehow my fault and also that I didn’t have enough information to tell her. I thought she might panic and worry about her own son, who was dealing with this thousands of miles away on his own. I told her that they were not sure about something they had seen and that I had to go back the following week. In fact, my bf told her that evening and she and the rest of his family googled spinal bifida and what they came across was truly terrifying! They panicked and called me and I got the impression they didn’t share our views on keeping the baby. But then, I had been given factual information from a doctor, and they were faced with the worst of the worst on the internet.

My family on the other hand, are very scientific people with a wide range of experiences with health and medical issues. Together we looked further into spinal bifida and were able to work out that it indeed could mean anything for my baby, but that the signs that had been seen were in the best possible part of the spine. We read that the operation on his brain may not be required, and even if it was, it was a simple procedure. They were very supportive, stating their own opinions and generally finding that we did agree. We learnt a lot about each other that weekend and they made me so much stronger with their faith in me.

1 in 10,000 babies

The scan and consultant’s appointment finally arrived. I was lead into a bigger room where the midwife who I had spoken to the following week introduced me to my consultant – a very friendly looking woman and her technician. I laid down on the bed and to my surprise the consultant did not pull the screen away. She scanned the baby for an hour, pointing out everything along the way – “this is his heart, his legs…he is such a wiggler!” etc. I watched him kick, punch, wave, suck his thumb. He looked adorable and I felt so proud and privileged for being able to watch him for an hour. I was much more in love than I thought possible.

After the scan, she gave me loads of pictures of him, which were all so cute! Then she explained what she had seen. She had not seen anymore than the previous scan, but this is was a little re-assuring. She had seen a cyst on his sacrum (lower spine) which looked quite small, but was definitely there. She was unable to tell what type of cyst this was - it may or may not contain nerves, which in turn could be damaged. There was no way of knowing this until he is born.

She also saw his head was very very small and “lemon” shaped. This is another sign of spinal bifida and the associated hydrocephalus. The ventricles in his brain where spinal fluid collects were slightly enlarged, but within the normal range – so it was too soon to see if he did indeed have hydrocephalus. Again I would have to wait until he was born.

She explained all the complications that can occur and all the problems that couldn’t be ruled out. She explained that the information she was giving was an “umbrella approach”, that she was telling me everything there was to know, but that most cases were never that severe. She referred me to a surgeon who would be able to give me more information.

The appointment with the surgeon was a few days away and me and my mum met him in Neonatal intensive care unit which was an experience in itself. I felt strong and ready to take on the world with an open mind, but nothing can prepare you for seeing all the babies in boxes with wires, crying on their own. I instantly knew I would be spending a lot of time here and struggled to control my tears.

The surgeon was very professional but also slightly fatherly, which put me back at ease. His approach was entirely different from that of the midwife, instead of covering his back as the consultant had by covering all the possibilities, he narrowed things down for me a little. Confirming that, although it was not 100%, in most cases where the defect was so low in the spine, if there was nerve damage, it may affect his ankles, which might be weak and possibly need support or surgery when he starts to grow taller as a teenager. He might, have weak knees, and there was a slight chance he might need a wheelchair. But he made me feel like the chances are, he might just have weak ankles.

He explained that I should expect bladder and bowel and possibly sexual dysfunction and how these are dealt with, some can be dealt with by medication. Some with catheters, etc and some minor surgery. But in nearly all cases, these issues were treatable, at worst.

The scariest part for me was the risk of hydrocephalus – the thought of brain surgery was frightening, but he didn’t feel it was something that I need be concerned about.

He then explained that Tommy would be born vaginally, as normal as possible, will then be wrapped in clean film (to seal any wound he may be born with) and I would be able to spend half an hour with him, before he be whisked away to NICU where he would be taken into surgery to have the gap in his spine repaired. He described the operation as a simple one he had performed many times before and said that Tommy would take up to ten days to heal. During this time, he would have his head monitored for signs of fluid build up, and have his bladder and bowel control tested and treated if need be.

He reassured me so much and really narrowed down what I was to expect. He said that only one baby a year is born with spinal bifida in this hospital which I found utterly amazing! He then introduced me to the team of people who would look after Tommy when the time came. A list of upto 12 people! Physios, urologists, neurologists etc.

Finally, I mentioned I was due to fly to Los Angeles to spend a month with Mike in Mexico on board his ship and he recommended that I go still, to enable me to discuss everything with my bf and to help me get over the trauma I had been through, after all the stress I was going through was having an impact on little Tommy too! Never in my life had a needed a holiday and to see Mike so much!!

After informing my midwife of all the news, I was given a huge hug and letter enabling me to fly. I phoned Mike’s family and told them the news. Despite me trying my hardest to reassure them that there was a good chance that there would be no problems, or little problems and that most major problems could be dealt with, I still got the feeling that they didn’t entirely agree and were concerned for their son. However, Mike assured me it was just fear. I comforted his crying grandmother who had been the victim of a friend trying to offer her advice on her own experiences and set off for LA, to put it all behind me for the time being. There was absolutely nothing I could do until he was born. Until then I was determined to relax and do everything I could to protect and nurture the little one inside me – and that included eating loads! I had a lot of catching up to do!

Ariba Mexico!

I arrived in Los Angeles and boarded the ship the following day to receive the biggest warmest hug of my life from Mike. I almost cried I was so happy to see him! We had a wonderful month together, in between his dodgy working hours. I rested and ate like I was planning to run around the world. Mike would put his hand on my tummy and try to feel Tommy kicking whenever I started to feel him going mad in there. But he seemed to have a sedative effect whenever he touched my tummy – Tommy stopped! In fact, when I was trying to sleep at night and Tommy was keeping me awake, Mike would put his magic hands on my tummy and all three of us would go to sleep. It wasn’t until it was nearly time to leave when Mike eventually felt him kick and the look on his face was pure pride. I will never forget that moment:)

TMI warning!

After just a week of being on board ship with Mike, doing what couples do when they have been separated for weeks, Mike commented on how wet I was and when I checked I was absolutely soaked with what seemed like water all over my legs. I didn’t think much of it but later googled it. What I saw terrified me! It was entirely possible that we had broken my waters and I was at risk from infection and pre-term labour. I was around 20 weeks at the time and knew the baby stood no chance of survival if it was pre-term labour. I was off the coast of Mexico, headed back to Los Angeles and would be at sea for two days before I could see someone. There was a doctor on board, but I knew that if I told him, I would be such a large insurance risk to them that they would not let me back on again and I would have to go home having only spent a week with Mike and 3 weeks early. Stupidly, this was what worried me most. So I decided to rest up and see what happened.

Over the next week, I leaked a little constantly, but nothing serious – just dampness and it seemed to happen for 24 hours after I had sex, so I decided to lay off it for a bit and see if it stopped.

By week three, I had caught tonsillitis and had to go and see the ship’s doctor. I told him about the past few weeks and he was very concerned that I might go into pre-term labour. Again I was at sea for two days and unable to get off the ship, but when we did get to land, I was planned to leave. I was put on strict bed rest. I tried not to worry because there was nothing I could do and I enjoyed the last few days relaxing with Mike. Lots of hugs and snuggles whilst watching movies in bed.
It was an uneventful couple of days, thankfully and on my last day I got off the ship, said a tearful goodbye to Mike and headed to a motel in Los Angeles to get some sleep before my flight. I blubbed in the taxi the whole way. I managed to get a premium seat on the aeroplane and was able to lie back and sleep most of the way home. Eventually the plane landed and my parents picked me up and took me home. I felt awful and very sick due to tiredness, jet lag and tonsillitis and headed straight for bed as soon as I got home. I slept for what felt like days in my big empty lonely apartment, before I had an appointment with my midwife. I told her about the leaking and she told me to go to the labour ward at my local hospital asap, as she was worried about me getting an infection.

So off I went, with my sister in tow. We sat around and waited for 4 hours to be seen by a doctor who just did a very quick internal, took a swab and told me to go home and call back in a few days for the results. Typically, I hadn’t leaked that day, nor did I leak again after that, and the results were clear. It seemed me and Mike might have ruptured my waters which had healed up again on their own! PHEW!!!!

Little Tommy then did everything he could to put my mind at rest! He punched, kicked, wriggled, constantly and I couldn’t believe how strong he felt. I put my hand on my tummy and he pushed against it with his little foot. I often felt simultaneous kicks/punches in my hips and ribs, so he was either kickboxing or doing the splits! He did it day and night every day and seemed to have established a comfy position, upside down with his head down in my pelvis lying across my left side, kicking my right ribs and headbutting and punching my bladder.

It certainly was the most reassuring thing in the world to see his little feet trying to push their way out of my tummy and I couldn’t wait to hold his little feet in my hand and tickle them!

My next scan was at 29 weeks – on 17 April, where they would check his head growth and whether the fluid levels in his brain were getting better or worse. I was starting to feel tense and a little frightened, but everyone was around me, counting the days with me.

wow what a read, i have spoken to you on the message boards with regards to folic acid, my daughter was suspected to have spinal bifida that moment at a scan waiting for someone to come talk to you is like a life time. your are clearly an amazing person. i hope your parents and partner are so proud of you for handling this so well! i lost my daughter at 29 weeks shortly after spinal bifida was ruled out-she had a unexplained bleed on the brain- i had the same out look as you with regards termination i was happy to hold out and hope for the best.
its so good that your surgeon put your mind at rest.

good luck and im here for you if you need an ear :-)

x

Wow, what a journal.

You are indeed an amazingly positive woman. Your little one is lucky to have such a wonderful mother.

Good luck xx

i would like to say god bless and stay positive...

you truly are an inspiration to all, i have been moaning and feeling sorry for myself for reasons that dont even to compare to the trials and tribulations that you are or will be facing....I treasure this poem and send it with love...

hayley x

One night I dreamed I was walking along the beach with the Lord.
Many scenes from my life flashed across the sky.
In each scene I noticed footprints in the sand.
Sometimes there were two sets of footprints,
other times there were one set of footprints.

This bothered me because I noticed
that during the low periods of my life,
when I was suffering from
anguish, sorrow or defeat,
I could see only one set of footprints.

So I said to the Lord,
"You promised me Lord,
that if I followed you,
you would walk with me always.
But I have noticed that during
the most trying periods of my life
there have only been one
set of footprints in the sand.
Why, when I needed you most,
you have not been there for me?"

The Lord replied,
"The times when you have
seen only one set of footprints in the sand,
is when I carried you."
Mary Stevenson

Wow Emme, this is an amazing story! You sound like such a good, strong woman. Parts of your story almost had me crying myself! I wish you all the best and I will keep reading... :hugs:

wow! Thanks to you all! You had me in tears:) That is a beautiful poem.

It is so great to have your support. Fingers crossed from here onwards the story looks up:)

What an amazing story. I wish you all the best for the future. You're a strong woman and your son is going to get all the help he needs when he is born.

I hope everything works out as best as it possibly can

:hugs:

xx

Emma, I just wanted to say what an amazing strong woman you are. I wish you and your families all the best.

Thank you sparkle!

Thankyou for being such a strong woman and inspiration to us all. I hope all goes well for you. You really put things into perspective for the rest of us! We have said that we will have bubs tested for things, not to terminate if anything comes up, but to ensure we have maximum length of time to adjust to things and gain strength. You have just reassured me that we are doing the right thing. Lots of :hugs: for the future - we will be following you all the way!! x x

You should feel proud that you can come on here and share your pregnancy with us, thank you. You are a very strong person and it sounds as though you are taking everything day by day as it comes and are extremely well informed of what's to come. I am sure by this that you will cope well when the time comes. I look forward to continue reading. xxx

Thank you! Let's hope there is nothing to write! I have my scan on Thursday and I am so nervous and excited at the same time! Thank you all for your support - it is helping me so much!

Wow, what a journal! That is an amazing story, and you are such a strong person to have such a positive outlook. Good luck with your scan on Thursday. Thanks for sharing this with us all.:hugs:

Wow, what an amazing story! You have such a fantastic attitude and sound so strong! All the best!

You are so positive, it's truly inspirational to read you. I look forward to following your journey and will have you in my thoughts. :)

Good luck with your scan on Thursday you will be in my thoughts :hugs:

You are going to be an amazing Mum. :hugs:

Good luck with the scan.


x

Stay strong,

You sound like you have lots of support from mike and your family, hope the next scan is ok and there is no further fluid.

I will def follow your story, i also have my scan on 17 my 20 weeks so fingers cross ey.

sarah..

I willkeep my fingers crossed for you! Are you going to find out the sex~?

just dropping by to say hello!

Good luck tomorrow Lollypop!

thank you girly im terrified if im honest but theres nothing i can do but wait :-)

*belly rub*

Aww i know how you feel. But you will be fine. There isnt much to see at 6 weeks. I saw mine at 5 weeks and he was just a blob. Most reassuring blob in the world tho!

Fingers crossed for you and try to relax.

yeah itll be the most fantastical blob :-D thanks hun

Good luck for your scan tommorow! YOu really are an inspiration :)

Just wanted to drop by and give you some :hug: I wish you all the luck in the world tomorrow with you scan.

Thanks girls - i really wish it was tommorrow tho! Maybe if i stay in bed it will come sooner!

For every up there is a down…

I went to see my midwife at 28 weeks and she confirmed that he is indeed lying where I thought he was - The midwife had told me earlier that he was lying with his head down my pelvis, his body up my left side (I could definitely feel his bottom!) and his feet were hammering away at my right ribs with his hands just above my right hip. She did the usual checks and everything was perfect. His heartbeat was very strong and very easy to find now he has established his comfy spot. My FH was spot on too and I was booked to go and get by GD tests and iron tests.

Leading up to the scan, I was so excited to see little Tommy again. Every night he kicked the hell out of me as I tried to sleep and again in the mornings as I tried to go back to sleep. I can feel his little feet pushing against my hand and even swear that I felt his hand - I could feel a handshaped lump where his hands were! It was so cute!

I also felt him hiccup for the first time and it was so adorable! Like a light tapping which was regular and went on for a few minutes. A sure sign that his lungs are getting ready for the outside world!

At the same time as all this bonding, I was starting to get so nervous about the scan. I knew they wouldn’t be able to see very much but I was so worried they will tell me something bad. I tried to concentrate on seeing Tommy again to get me through it. I wished so badly that Mike was here to hold my hand – he is so optimistic all the time.

I had an appointment with the doctor on the Wednesday the week before the scan to tell him that I had had a lump in my throat since I got pregnant. I saw a locum and he told me to go away and come back when it got worse. I pleaded with him and said it was worse and I was choking on it at night! He still told me to come back when it got worse!

Shocked and very irritated that something that had caused me to worry so much was just being brushed aside, I immediately booked an appointment to see my own doctor. I complained to him about the locum just dismissing me without even checking my throat, which he did straight away. He said – “looks like your thyroid” which reminded me that in December he did some thyroid tests as my morning sickness and tiredness were very bad and I was suffering from bad palpitations. He looked at the results and there it was! Hypothyroidism! I have had it all the way through my pregnancy and no one had bothered to check the results! In fact I had been complaining of symptoms of this disease for over 6 years and no doctor had ever put two and two together, despite it being rife in my family.

Hypothyroidism is the under production of a hormone which helps the baby’s brain to develop, amongst other things. It causes fatique, a general feeling of always being down and ill, palpitations and a slowing down of the metabolism – causing weight gain. Untreated Hypothyroidism increases the chance of miscarriage and pre-term labour dramatically and causes whole list of nasty nasty things.

Since my last scan showed my baby had spinal bifida and a severely undersized head – I was totally convinced he has an underdeveloped brain which may not be a result of spinal bifida at all. I instantly felt devastated and started to panic. Instead of waiting to see what will happen with the spinal bifida, I now had to wait and see if he will be mentally impaired as well – something I wasn’t so sure I could cope with.

I did of course look all this information up on the internet, which I know is probably more frightening than it actually is. The doctor gave me no information whatsoever and just told me to tell my consultant when I next saw them. So I phoned the day unit and asked them if I will be able to speak to someone on Thursday at my scan and they confirmed I could. Two days to go…

ow hun, this is all so wrong i hope you drag that doctor over hot coals by his man parts!!

the same as with every up theres a down where theres a down theres an up it might not seen like it but thinks will get better, maybe not right now or tomorrow or even the next day but they will get better.

and your still going to have a beautiful baby boy.

big hugs

I can't even imagine how you must feel... you're doing everything you can to be optimistic and now you're being let down by them not checking your results. Continue to be strong for your little one and know we're all here for you. And about info. on the internet, most of it is always soooo alarming but not always right. I find worse case scenarios are what we end up reading up on. I had to ban researching stuff during my pregnancy as I would worry myself sick! Keep in touch with BnB, but no research!!! ;) I'm keeping you in my thoughts.

how are you and tommy today?

Emma, I just wanted to say your story is inspiring. So sad and yet so full of hope and love.

I will think of you every day until your little one is born and you can know more about what you will face in the future.

Stay strong.

The scan…

The night before my scan Tommy was determined to try and put my mind at rest. He started kicking me in my ribs and stomach at 21:00, whilst I was trying to eat my rather late dinner. At first it was bearable, but after a few minutes the kicks made me cry out they were so painful and I had to stop eating before I was sick. He carried on kicking the same spot all night and I eventually ended up shouting at him and threatening to do stupid things like get on my hands and knees or stick something cold on him! I though he was going to be a little loveable monster!

I tried to go to sleep early as I had a very early start to get to the hospital but I tossed and turned all night and felt like I hadn’t slept at all. I dragged myself out of bed feeling like I had been beaten up and went to the hospital with my mum and twin sister.

In the foetal medicine suite, I laid down on the bed and my consultant started to scan me. Immediately she checked the heart beat and went straight to his head to check the fluid levels there. His head had grown and was on the scale now, whereas before it had been so small it was off the scale. Also, I detected no trace of the lemon head shape that there was before, which put me at ease. However she commented on the “dilated” state of the ventricles in his brain, indicating that hydrocephalus is definitely something which might rear its ugly head. This is what I am afraid of most – but there is still hope and we wont know until he has had his operation to fix his spine, whether surgery will be needed to drain this fluid.

She then scanned his bum looking for the lump she had found previously. This time the lump was much more clearer and you could see that it was covering a gap in the surface of his skin and was full of fluid. This means that there was a very high chance that there is nerve damage effecting his feet, legs, bladder, bowels and sexual organs – this just confirmed previous findings and did not tell us anything new but did extinguish a little bit of hope that maybe there will be nothing wrong at all.

Whilst scanning his feet, she was able to see that one of them is showing signs of rotation – which could be a warning sign for club foot – something spina bifida babies get a lot. Whilst this is another problem to add to the list – it is another treatable problem.

Unfortunately, little Tommy’s kicking the night before was obviously tenderising his new resting place as he was now lying over the sore spot with his bum on it – his bum being the bit the consultant wanted to scan the most. It was absolute agony her digging the scanner in and I started to feel a bit faint from the pain, then by the time she had moved onto his cute (huge!) feet which were by my stomach I was ready to pass out and be sick. At this point she decided to stop and I was unable to see his face or get any photographs – but I was very relieved she had stopped!

I then mentioned that my doctor had said I was suffering from an underactive thyroid. She looked through my test results and said they were indeed low, but low within the normal range and nothing to worry about. She booked me in for another test in a few weeks to make sure.

So overall, the scan had not told me anything new of significance. There was no bad news as I had been expecting, but there was a little bit of a dashing to my hopes. I was however prepared for the worst so it did not come as a shock to me. I am still happy, excited and in love!

He was overall a small baby, his head, abdomen and weight (2.5lbs) were on the low average side. His legs however were already as long as a baby who is 40 weeks and definitely on the high average side! It looked like he was going to be a very long baby just like his dad! His expected birth weight at this stage was a very very relieving 6.7lbs! I can do that:)

I went home feeling excited to be pregnant again and put the worries to the back of my mind to be dealt with when the time comes. Me and my mum and sister analysed the report and cooed over the photographs of his feet, which really were adorable. Only four weeks until my next scan – when I will be 33 weeks pregnant. I don’t expect they will be able to see a lot at this stage, but at least I will get an insight into Tommy’s little world again!

gahh i used to hate being kicked in the same place for hours on end when theres bugger all you can do about it

although all these scans arnt giving you the best news in the world, at least they are telling you that most of the things that may be a problem are in fact treatable.

part of the reason the made more investigations about S.B in my daughter was club feet/extra long legs/ bow legs. it didnt make them any less cute:-)
im sorry the scan was such painfull experience for you!
6.7 sounds manageable! im pleased that tommys head is catching up a bit, it must be a big relief- a bit of a light at the end maybe...

i think your coping amazingly well, and that a mothers love holds no bounds tommy is going to be such a lucky little boy to have a mummy as nice as you :-)

Wow! What a ride this will have been. You are amazingly strong and I think of you often, sending positive vibes. :) I hope your next scan goes more smoothly and that you can get a nice picture of Tommy's face. ;)

You're such an incredibly strong woman. Tommy is lucky to have such an amazing mum! Good luck at your next scan.. I'll be thinking of you & your little boy.

This is an incredible story. You truly are an amazing woman. Good luck! xo

Wow! What an amazing journal and an amazing woman to go with it!!
You are certainly going to be one fantastic mummy!
Im sorry to read your pregnancy hasnt been an easy ride but you sound very strong and determine.
Take care, keeping my fingers crossed for you xx

Another bloody blow!!!

Over the next few weeks, I started packing to move out of my apartment and into mine and Mike’s first (rented) house. I found that I was unable to do very much at all, other than pack one box or two due to tiredness and soreness in my back. My friends and family were amazingly helpful and did most of the packing for me. Tommy seemed to have a huge growth spurt and started hiccupping up to three times a day! Every time he did it felt like a little hello and made me feel happy he was developing well. He was still kicking like a footballer, but the kicks were getting less and less and turning to wriggles, which I put down to lack of space.

The Saturday before the big move, I went to the labour ward for my diabetes test. I had to be there at 9:30 and the place was so quiet and peaceful. However, I had had to fast and I was literally starving!! I felt like I would eat anything I saw! The midwife took some blood and gave me the most disgusting breakfast of my life – literally sugar water. She also took blood for my thyroid and iron levels and checked my blood pressure, as it had been high the previous week. Again, it was high. I then had to wait two hours until she could do another blood test to see how my body reacted to the sugar. Thankfully there were two other ladies waiting so we chatted for a few hours and the time seemed to fly past.

After the two hours, the midwife took some more blood and did my blood pressure again. Again, it was high. So with three high readings in a row, she tested my urine for protein, which thankfully there wasn’t! She put it down to hypertension and told me to get it checked by my midwife once a week. I was free to go and enjoy what turned out to be the warmest day of spring so far.

The next few days past in a blur of packing and moving and come Monday I forgot all about calling the hospital for my results. Again, my family did all the hard work.

Tuesday, the diabetes midwife called me and gave me the bad news – I had failed the test quite badly in fact and needed to go into hospital and see her the next day. Fortunately I was with my dad who was diabetic and gave me an insight into what it meant and put my mind at rest.

Wednesday, I met the midwife and she explained everything to me. Normally, when you eat, your body produces insulin to keep your blood sugar levels within a healthy range. When pregnant – sometimes the hormones produced by the placenta stop this insulin from working – leaving you with high blood sugar.

This sugar is then passed on to the baby, who can regulate his insulin and control his own blood sugar levels, but as a consequence of all the insulin, which is a growth hormone, he will grow too much, particularly around the shoulders, making delivery hard. He will also be hypoglycaemic at birth due to the sudden cut off of blood sugar and be possibly jaundiced. There is also a chance he will have underdeveloped lungs.

Firstly, I wasn’t concerned about his growth, as he is a very small baby at the moment, but the hypoglycaemia is treated by a very quick feed straight after birth – something I would not be able to do as he will be taken into surgery. The midwife assured me that he will be put on a glucose drip instead. Steroid injections would be given to help his lungs.

For a week I was going to try and control my sugar levels by checking my levels regularly and avoiding fatty & sugary foods. This looked like no problem at all, as I already had a very good diet, excluding the odd burger and ice cream craving. After a week, if I had not managed to control my levels, I would be given insulin or a pill to control my levels.

Day one and everything seemed to be going fine. My levels were within a normal range and I felt that everything was going to be fine! If I could control it on my own, then my baby would be fine too. Unfortunately, after dinner, my levels went through the roof despite me having a good meal. I then started to go down hill emotionally for the first time since I heard he had SB.

I felt that I wasn’t going to be able to control it, that I would be put on insulin injections. I felt like such a failure. My doctor that day had been concerned about how I was coping with everything and I had assured her I was fine and strong. But she had somehow unlocked my emotions and her expectation that I couldn’t deal with everything made me suddenly feel that it was ok to be upset and expected.

Mike called that evening as he usually did and I just wanted to cry, apologise for not being able to have his healthy child. I felt like he should be disappointed in me and that it was all my fault. I felt like all the fight had just left me. I wished for a moment that there was someway I could just give up, as there was no chance Tom would be born ok. I saw my place as it was, still at the beginning of something really big and really hard, and expected to get a lot harder. At that moment all I had to do was wait and see and look after myself – but soon I would be pushing Tom into the world and watching him being whisked away without even a feed, not knowing how bad he will be or how he will cope with surgery and whether I would ever get to hold him. And even if it all worked out – it would be a long time before we would be a normal family, if we were ever going to be.

I lost all hope….I needed Mike back. I now felt so alone.

Thankfully, despite these feelings, I still had the strength to go on, to keep doing everything I could for Tom, but I really didn’t know how much more I could cope with.

big hugs hun, ill talk to you later :-)

Oh hun, things really aren't going smoothly are they?:hugs::hugs:

Less than a month till Mike comes home though. Try and focus on that, and hopefully you won't feel quite so down.:hugs::hugs:

hello
I just wanted to add to all the comments saying what a brave, strong and wonderful mum you are! I found reading your journal very moving and inspiring.
I'm so sorry that you all have to go through all these difficulties, life can be so cruel sometimes. But I I hold a great deal of hope that you, Tommy and your partner will come through all these challenges as smoothly and healthily and happily as possible. Sending lots of positive vibes your way.
x

awww hun sending big hugs :hugs::hugs:

You are doing incredibly well honey. :hug:

x

The last lonely bit!

Despite the blood sugar blip on my first day, I actually managed very well for the rest of the week and my blood sugar only went high one more time. I was eating so healthily and enjoying it, but the ice cream craving still didn’t go away, and only got worse! The less sugar in my diet the more I wanted it!

On the first Tuesday before I was due to go back in to see the diabetes midwife, I had to pop in and meet my new midwife, for an antenatal and also a bp check. Everything was great and she was so nice! FH was on target, the heartbeat was perfect and my bp had dropped! She told me how he was lying and I could just picture him in there. I left feeling really positive, and popped into the shop to buy a magnum on the way home – which didn’t seem to affect my blood sugar at all!

The next day, I had my appointment with the diabetes midwife and my pregnancy brain started kicking in! I got to the hospital 30 minutes early, but then drove around the car park for 20 minutes before giving up and deciding to park in the hospital nearby, as there was not a single space free! When I got to the other hospital, there was a massive queue just to get in the car park – after I made it in, there were no spaces, but I managed to pinch one off of someone who was leaving and legged it over to the hospital I had my appointment in. Just as I got there, I realised I had forgotten my purse and would not be able to get out the car park! I reached for my phone, and I had forgotten that too! I managed to find 20p in my purse so ran to the phone box – but the minimum it would take was 40p!

So, late for my appointment I was totally panicking about how I would get out the car park! After, I made it to the front of another massive queue at the reception, I was lead into a clinic and then saw the midwife who was very very satisfied that I had been able to control my blood sugar levels by diet alone, and confirmed I would not need medication (no icky insulin injections!!) and could be discharged to look after myself! This also meant that Tommy should be fine too – none of the side effects of diabetes should affect him! They also took my bp and it was even lower than the day before!

So… ecstatic, I walked over to the other hospital and used the telecom on the pay machine to beg my way out of the carpark, whilst a queue of people formed behind me. I was soooo embarrassed! The intercom told me to go to the carpark exit and push the intercom there. So I did, and some idiot behind me starting honking his horn at me and shouting abuse so I couldn’t hear a thing the lady was saying! There was a free exit next to me, so I had no idea what his problem was. He carried on screaming and yelling and eventually the barrier came up and I got out. I was so upset by this man’s behaviour that it almost spoiled my good mood…almost that was until I hit a queue of traffic at some roadworks…then my mood sunk. What a stinky day! I just wanted some lunch and it was already 16:00! Still it was a lovely sunny day.

Thursday morning and there is an email waiting from me from Mike – it said “I have a surprise for you”, so I eagerly wrote back knowing he may still be online and he wrote back “I will be home two weeks early! A week on Sunday!!!” I am soooooooooooooooooooooooooooooo over the moon! And start thinking of all the things I need to do before he gets home! He is finally going to see his new home, and me! Looking like a huge whale!! I started counting the days, hours seconds untill I go to meet him at the airport!

Friday, my sister had arranged a BBQ and baby shower for me at my new house so I spent the day preparing for that, and had a wonderful time. So many presents! All cute and tiny baby clothes! Everything goes off without a hitch and the weather even holds out!

The following Tuesday, 5 days until Mike comes home, I went for my bp check and my midwife confirmed it was back to normal! Again I am on such a high – two days until my scan, which I was feeling positive about – I couldn’t wait to see his face again! In the meantime his kicks are ever stronger and we can now play the poking game, where he kicks and I try and poke his feet! He then keeps poking and wriggling!! I can also feel his head was still down, as he hiccupped up to four times a day! The Braxton hicks also really started kicking in! It all made me so excited that things could happen very soon!

The big day of the 33 week scan arrived and I met my sister at the hospital feeling fairly positive. My consultant, and specialist midwife greeted me and started the scanning. She pointed out the heartbeat, the cyst etc. He looked so tightly packed in there that I found it hard to make anything out. As I was so sick last time and wasn’t able to see his face, I asked to see it this time, and it was so beautiful! He had such chubby cheeks just like me! I felt so in love! His nose was so cute and I swore I could even make out his eyelashes. The sonographer then asked if she could test out the 4d software at which I was over the moon! I got to see so much more and she even printed the pictures off – which I have attached below.

On the more important side, the scan revealed the ventricles in his head had not gotten worse and still only showed mild hydrocephalus which could still disappear on its own. His head had grown the normal amount but was still very very small, but they showed no concern. His legs had continued to grow far quicker than the rest of him and he had put on a bit of chub, weighing 4.5lbs, an almost average size baby! Expected to be 7.7lbs at birth.

This time, both his feet seemed to be showing signs of mild talipes – which meant he would probably require surgery at 9 months.

Overall, I left cooing over my new photos and feeling really positive again! As soon as I got home, Mike phoned and I passed on the news – I couldn’t believe I would be seeing him in only 3 days!

Wow great pics :hugs:

Glad everything going well. Great pics.

I'm so happy for you! You deserve great days like these. And your little Tommy does have really cute chubby cheeks! I wish you more and more happy sunny days! :)

Great pics hun xx

That's really put a smile on my face! Great news at the hospital, great news about your blood sugar, great news that Mike is coming home early, and amazing scan pictures!!!:happydance:

Thanks for updating us, and enjoy the reunion!:hugs:

Great pics Em!

Aww beautiful pics!! xo

Awww!!! He's so cute :D

lovely piccies hun!!

Lovely photos hun :) Just read your journal today and you've had me in tears. You're so brave and little Tommy is very lucky to have you.

And not long til Daddy is home either! I bet you're so excited!

:):)

xxx

just wanted to thank you for listening to my rant today:hugs: you are such a strong person and your little one is so lucky to have a mummy like you. i really wish you well with everything and have no doubt you will all get through it just fine xxx:hug:
would also like to add my youngest little boy had talipes in his right foot, it looked really bad when he was born, but with lots of excersise and stroking its perfectly fine now and you could never tell the difference

Wow what a journey you are going through.

I really admire you, you are so incredibly strong and Tommy is truely lucky to have such wonderful parents.

Hope things are going well for you

xxx

I have just read through your journey and wow, what a roller coaster it has been. I hope things have settled down and you, Mike & Tommy are all doing well xx

Mike is home and everything is great:D

On the way to the airport to meet Mike, Tom must have felt my excitement as he kicked the whole way! I had spent hours getting ready so I would look good when he saw me for the first time in two months! Walking round the terminal completely lost, I walked into him looking for me! I gave him the largest hug and kiss ever and was overwhelmed with love and shock at seeing him again! The first thing he did after the hug was push me away, look at my tummy and say “OMG! You are huge!!” Then hug me again with such pride on his face! It felt absolutely amazing to see him again and know he was going to be home until September. That night we hugged each other to sleep, but not before Mike felt Tom kick his hand really hard. I will never forget that look on his face. Pure pride! With him by my side I could cope with anything.

Mike spent the next few days settling in to his new home and getting used to having a heavily pregnant grumpy girlfriend about the house. The first thing he did was the garden, whilst I washed and prepared baby clothes. We immediately started the parentcraft classes together, bought everything we needed for the big day and packed our maternity bag(s) for our 10 day hospital stay.

Time flew by so quickly and before we knew it we were at week 36 and I started to lose my plug! Then reality hit that little Tom could be here any day!! The BH started to get intense and painful, and every few days got more and more painful, but never really regular. Then one evening, after watering the garden, I was washing my hands at the sink and did a really sudden sneeze and “gush”! I lost about a mug full of water onto the kitchen floor! Mike came running in whilst on the phone “oh no! Did your waters go? I heard it from the living room!!!” I honestly didn’t know what had happened! I went upstairs and emptied by bladder (which wasn’t empty already) and had a shower, before sitting down and thinking that it really could have been my waters! I was only 36+3 days so knew there would be a real risk to Tom if I didn’t get it checked out.

I didn’t have any contractions, just BH, but I did have an awful backache in my left side which had been there for about 48 hours, which felt muscular and deep. So I rang the labour ward and they asked me to come in asap. As Tom had SB, they didn’t want to risk anything. My parents came and took me to the labour ward and we got there at around midnight.

The labour ward was the most surreal thing. I was put into a birthing room, with a cot and all the equipment needed to deliver. I couldn’t believe I was there. I didn’t feel ready at all!! The MWs put me on a monitor to monitor the baby and a few hours later a doctor did a speculum and took some swabs. The conclusion was that my waters hadn’t broken, but that I had a kidney infection which had caused my bladder to fail. They gave me some antibiotics and did a trace on Tom’s heart rate and my contractions for an hour before giving me the choice to go home or stay the night. At 3 am I decided I would go home and rest, as I was convinced it had all been a huge bladder failure. I was more than a little embarrassed and wanted to curl up in my bed!

A few mornings later I woke up to seriously strong cramps and thought that it might be the beginning of things, but after an hour they stopped leaving me feeling very very sore and with a dramatically lower bump! My guess was that he had dropped. Luckily, that day we had a MW appointment and she confirmed he had indeed dropped and fully engaged! I was so excited!!

Week 37 and we had our last scan (and Mike’s first scan). I really hoped that Mike would be able to see Tom’s face, but unfortunately, as he was fully engaged, it was impossible. Within a few minutes of lying on my back I felt very very ill and faint and had to stop the scan. My consultant decided she had seen all she needed to and after I recovered, led me to another room where they normally tell me the results.

Instead of giving me any news, she said it had been too hard to see anything, and that she wanted to see me in her antenatal clinic in two weeks, and with that she left the report and was gone. I could see the report didn’t really say anything and I was left feeling quite disappointed. It did however show that his little growth spurt had slowed down now I was controlling my GD and he was now between the average and small average line! Which was great! The specialist NICU midwife then came into the room to go through all the SB issues with Mike, as he had not been at any of the other meetings I had had.

After answering all his questions, I was left feeling more nervous than before. She hadn’t seen our notes so knew nothing of the specifics of our case and mentioned something no one had ever mentioned to me before, and that was when he is born, he will be assessed to see if surgery is viable! This had never been told to me to be an “if”! I put it down to the fact she knew nothing of our specific case and the surgeon hadn’t mentioned it before as he thought it was unlikely. It still niggled in the back of my mind.

She then took us on a tour of NICU and PICU where he would have surgery and be for 10 days after birth. She showed us the exact process and all the equipment which would be used at the birth and afterwards. As soon as he is born, he will be carried over the otherside of the room to a special examination table where he will be assessed and wrapped, before being bought back to me for a cuddle. He would then be taken away to NICU until surgery.

It was all so overwhelming and frightening. I had to tell myself to deal with it one stage at a time to avoid getting upset. No one could answer any of my questions about natural delivery of placenta, drugs, breastfeeding etc, because no one would know until he was born.

Overall though, I felt more prepared and Mike felt much more confident about what to expect.

The next few weeks were a blur of BH, getting steadily worse and more preparations. Anxiety was really starting to kick in and I found myself not frightened of the labour, by very anxious for it to be over so I could finally put my mind at rest about Tom’s SB, and also extremely frightened that things might not be ok. I found myself regularly bursting into tears of fear.

At 38+5 weeks, we had our appointment with the consultant, which I presumed was to discuss our birthing options.

10 days to go!! Almost single digits now hun :happydance:

Nearly there!

xxx

Woo you're on single digits! Hope you're feeling good today x

Argh nearly there how exiting :)

Wow!!! 7 days to go eh Emma? I've loved reading your journal, and really look forward to your updates.

I just can't wait to log on here and read your birth story too! :hugs::hugs:

Wow!!! 7 days to go eh Emma? I've loved reading your journal, and really look forward to your updates.

I just can't wait to log on here and read your birth story too! :hugs::hugs:

Thanks! I really can't wait to be able to write it!! I am so ready now! I am in a perminant state of moaning and aching more than i ever thought possible!!

Not long to go! Hope you're feeling ok :) I hardly have any time to see how any of you girls are doing any more, but I do keep checking back that you and your LO are ok!

xxx

Sooooo..... due date? Any sign yet?????????

Just a quick updat, as i am staying in hospital to breastfeed and only have 10 minutes left!!

Tom was born on 4th July at 04:14am after being induced on 2nd July. During the labour his cord was round his neck and he had managed to get into an akward position. After his heart rate almost dissapeared one too many times, he was removed by forceps after just three pushes!!

He instantly cried which was a huge relief, and was examined to be found to have exactly what was expected - a cyst on his back which was 3cm by 2cm and leaking spinal fluid which was patched up in surgery within 12 hours and still looks good!

he had talipies which seem to be correcting themselves. he also has no bladder control and retains his urine so needs a catheter. We are not sure about his bowels and head yet. he had some scans yesturday but they have not given us the results yet - but to me it looks like he will be required to have surgery to insert shunts into his head within the next day or two.

Apart from that he is moving, wriggling, crying and breastfeeding just like any other baby and we are such proud parents!! he is absolutely georgous and I am so in love.

I will write a proper journal entry in the next few days when i get a chance!!

Thanks everyone for your well wishes!

congrats! he sounds like a proper little fighter, hope everything goes well, re; tests etc. Will be thinking of you all.

hey emma so great to hear from u.

im so pleased little tommy is doing so well and i bet he is gorgeous like his mummy.

take care rest up and feed ur little bobby monster

thinking of u XXXXXXX :hugs:

Oh my god :D so glad to hear everything is going well Em!

Keep us updated, speak to you soonn xxxx

congratulations on little tommy
glad everything is going well :hug:

well done and loads and loads of love to you three

h x

Congratulations. I'm glad he's doing so well. Good luck with everything!!

Good luck with the tests and everything :) Hope everything goes well for you all

xxx

Congratulations!! :D

So glad to hear everything's going well for you...hope the test results are good x

Aww hunnie, he sounds like such a little fighter, good luck with everything xXx

congratulations:)
you are a amazing mom:hugs:

congrats :)

Congratulations :hugs:

Congratulations on the birth of little Tom hun.:hugs::hugs: So pleased for you, you've got a fighter there.:happydance::hugs:

Keep us updated when you have more time, and I can't wait to see a picture.:hug:

I have only tonight come across this journal and I have read every single word from start to finish. Your story is nothing short of incredible and in my humble opinion a 'best seller'.

May I wish you both heartfelt congratulations on the birth of your wonderful son Tom.

Welcome to the world Tom. Your journey will no doubt be a challenging one, but you have two wonderful parents worth being in the world for.

A family at last. :hugs:

Congrats glad to hear he's going well :)

Congratulations :hugs: youve got a wee fighter there, good luck with everything x

i just got a text shes coming home!! with tom! happy happy dance

:happydance::happydance::happydance:

Oh that's brilliant news. :happydance: is right.

Thanks for the update Molly. :kiss:


:flower: :flower: :flower:
:flower: :flower:
:flower:
welcome home baby Tom

Awww congrats!!! :hugs:

Great news, so glad everything has gone well xx

What an amazing story:cloud9:

Good luck with your baby son, I really hope everything goes well and go enjoy him :)

xxx

The next few weeks were hard. Fear set in. I started to feel like I didn’t want to give birth to Tom as he wouldn’t be safe in the outside world, as if I could protect him from what was to happen. At my next antenatal appointment my blood pressure has started to creep up due to stress. But I remained excited all the same. I felt sure that I wasn’t going to make it to my next appointment at 39+6 – Tom was ready and so was I!

But, by the next appointment, Tom was very much still hanging in there! I had had enough by this point. I was in agony, I was so uncomfortable. I had tried every single remedy to bring on labour. Stress was eating away at me and I couldn’t cope with the anxiety any longer! Knowing that a whole new world was going to open up and swallow me was slow torture and I could not wait another two week until they induced me if I went overdue. I almost pleaded with the doctor to induce me. My BP was sky high, so they tested again in 30 minutes, and it was even higher!

After consultation with my consultant they decided that enough was enough and they would induce me the following day and admit me overnight for the stress. Neonatal thankfully had a free slot for him and the surgeon was free. I had a sweep and was already 1cm dilated! As if he was going to come out that easily!!!
I rushed home to get my things feeling excited and a zillion times relieved. Just knowing I didn’t have to wait much longer lifted the stress off of me. I rang my parents and off we went to hospital. Upon arrival my blood pressure had returned completely back to normal.

That night I tried to get some rest but, unfortunately my roomie on the ward snored horrendously and kept me up all night!
In the morning, first thing after some toast, I went to the induction suite and was examined – I was still 1 cm dilated so was given a pesery and left to progress on my own. I laid in the labour induction suit with Mike and My mum and we played monopoly!! I was so excited and seemed to have put all my worries to the back on my mind. We needed to be strong now and nothing I could do would help Tom now, but being calm would help him a lot! I couldn’t wait to meet him!

Unfortunately, by 15:00 I had not made any progress at all, so was given another pesery told to go back to my ward for the night. During the night I started getting contractions and my waters leaked a little with each one. The pain kept me up again – so I had about three hours sleep.

The next morning I went back down the induction suite to find I was now 1-2cm dilated!! I was soooo frustrated! However, she was able to pop my waters which got things going. I immediately started getting very very strong contractions and put on my TENs – which I must say was fantastic all the way up to advanced stage labour. I definitely recommend them! I felt like I could deal with any amount of pain for a minute knowing it would subside for a few more! By now my emotions had switched off. I was overtired and had a serious job to do. I was also getting a little scared of the task ahead. It all felt so surreal!

By 15:00 I was put on the drip and warned that most woman at this point had an epidural – but I was determined to hold out and started on the gas and air – which was horrendous! It made me feel so out of control and sick, but after a while I got used to it and it did seem to help – by making me feel like I was a million miles away from the pain.

At 19:00, I had another internal to find I was only 4cm dilated. I was advised that we would probably be there until the early hours of the morning – at which point I cracked and asked for advice on an epidural – there was no way I could go on that long. Whilst not really with it due to the gas, the next thing I know, the epidural is being inserted (which was pretty horrible itself) and after 10 minutes I was pain free – but still able to feel everything, including my contractions, but they were now manageable. I tried my hardest to sleep at this point. I had no energy after not sleeping for two nights. I drifted in and out as people came in and out the room. I had never been so tired in my life. I slept for a few minutes, I awoke to be poked around or spoken to, then fell back to sleep. Everything blurred, I was too tired to care anymore. I just wanted to be left alone. I felt like I had tubes coming out of everywhere and everything had suddenly become serious. I closed my eyes and shut the world out.

Baby’s heart rate started dropping to 50 with my contractions, and doctors started coming in. They thought that he was reacting to the drip, so they kept switching it off and on – which seemed to help. However, I wasn’t making any progress on my own – the doctors decided to do a blood test on the baby to see if he was distressed, and told me I would have an emergency c-section if he was. They then discovered I was 10cm dilated so told me to wait half an hour and then start pushing. I slept again until I was woken up and told to push. I pushed with all my might for about 10 minutes – which was very hard as I couldn’t feel my contractions any more. Again, baby’s heart rate almost disappeared entirely – so the doctors did another blood test and decided discovered the cord wrapped around his neck twice. Before I knew it, I was surrounded by 15 people, some for the baby and some for me in case things went wrong. Baby was removed by forceps in three pushes with a rather nasty episiotomy and whisked to a corner of the room with the intensive care team. He cried and I knew he was fine. I was so tired I could hardly keep my eyes open to try and see him. But somehow, and I don’t know how, I managed to stay conscious enough to try and sneak a peak of my little man. Mike was amazing the whole time. After what seemed like a few minutes, baby was wrapped in clean film and a blanket and bought over to me. I was able to give him a kiss before he went to intensive care.

Tom was born at 04:14 am on 4 July weighing 3.3kg (7lbs 4oz). He was so beautiful and very long!

My little man’s first few days of life

I write this as a considerable amount of time has flown by! I don’t know where it went but motherhood seems to have eaten it all up! So here lacks considerable detail.

After the doctors had piled out of my room, I was left feeling like I had nothing left inside me. I was cleaned up and immediately fell asleep until 7. We had been told that we would be able to go and see Tom in a few hours and I was unable to sleep any more due to anxiety. I waited in bed for three hours to be unpinned from the machines and put into a wheelchair.

As I was wheeled through NICU, right to the end of the corridor and into the colourful ward, I was greeted by a pleasant and motherly nurse who showed me to tom. He was lying there in his incubator on his side covered in wires, tubes of every kind. He was awake but not moving very much. My heart skipped – I cried. I was overwhelmed by love. This was the moment other mothers gets to see their child and hug it to her breast. I just wanted to hold him, but I felt so afraid. He looked so perfect. He had an amazing amount of hair! Long and thick! I wanted to run my hands through it, to kiss it and smell his sweet baby scent.

The nurse told us that everything had been fine and he was just being monitored and asked if we would like to hold him. He was unplugged and wrapped in a blanket and handed to me. Words can’t explain what I felt. His eyes were huge and looked at me and around the room. The first thing that struck me was how much he looked like his father! I wanted to hold him forever and never let him go, but the nurse suggested I pass him to Mike.

Mike held him with such pride. I could see the tears in his eyes I knew he was fighting. I was so happy at that moment. We were a family at last.

He was perfect. His foot was a little squashed, but not too bad. I could see his back and the lesion was about 3cm long with a 1cm hole into leaking spinal fluid. It didn’t look as bad as I was expecting, but somehow I couldn’t bring myself to look at it. His nose was also completely squashed to one side which looked so cute! I noticed very soon hoe he wiggled a lot and moved his legs like a pro.

We placed him back in his incubator as the nurse informed us his operation would be after lunch and we would be able to go and see him over at PICU immediately afterwards when he would be bought back to this hospital. She also gave me the above picture which was taken a few hours after birth.

Slowly, we left NICU and I was taken to a postnatal ward with mothers and their babies. After an hour or so the ward was cleared for me out of respect and me and Mike fell asleep until we were woken by a nurse informing us Tom was about to go for surgery.

We rushed back down to NICU where we held him again. I was numb at this point. I didn’t know how to feel. I think fright had taken over. It was such a simple procedure. Very soon the paediatric intensive care ambulance arrived with its special pod for Tom. He was dressed in woollen sterile clothes and wrapped in blankets before being placed in the pod. We walked with him to the ambulance, giving him a final soothing touch as he was loaded on. I went inside but Mike stood as the ambulance left crying. I think that single moment was one of the hardest. I felt stripped, wiped out. Like I had nothing left. My baby was gone into the hands of a stranger who was going to save his life. My tiny little man was going to be cut, poked and pulled around and I just wanted to protect him.

We sat in our empty ward for what felt like eternity before we got the call that Tom was out of surgery and fine. Mike and my father rushed over to PICU to see him whilst me and my mother waited.

When they arrived back words cannot describe the sight I saw!! He had been placed on his front with a nappy that was far too small to do up he had bought his legs up like a frog and was lying on his cheek with his naked bum in the air. His face was squashed as far up and as far forward as it could go! He was sound asleep. I was relieved and couldn’t help but laugh. My man was safe and fine! I stayed with him for as long as I could stay awake.

Mike had to leave for the night and I slept for England. As soon as the sun was up Mike was back and we were by Tom’s side. He had recovered very very well and I was able to hold him again. I cuddled him to my chest where he nuzzled.

Toms first day

Emmea he is gorgeous! Sounds like you had a tough few days after baby Tom arrived. So pleased to hear he is doing well now, he is a little fighter with a strong, loving mummy who thinks the world of him. I wish you all well hun and hope you have a fab time in Hawaii xXx

emma he's beautiful, your a fab mummy, he's gorgeous :hugs:

ive only just caught up with this, well done for finishing it at long last!

it is not finished yet! lol