The road to our child. Part 5.

August 10, 2010 marked the beginning of the end of our journey, I was 37+1 weeks. Contractions started just as they did with my sons birth, middle of the morning, 15 minutes apart and out of nowhere that was the only similarity between my sons labour and Harpers. They were definitely there, but not intense enough for me to not go about my day. My In laws were in town, which was great timing on Harpers behalf. 

My son was born within 4 hours of feeling the first contraction and the contractions never became regular,  Harper's stayed at 15 minutes apart the entire day, So I just went about my day, hanging out with my son and being a family. I lost a large chunk of my mucous plug, that had never happened before and I was quite amazed at the size of it, I told my husband and he thought we should go to the hospital, I assured him that we still had time. I went to bed still contracting through the night. The next day the contractions were stronger, I had to concentrate on them at times to make it through they slowly become erratic, coming anywhere from  5 minutes to 10 minutes apart before settling back in at 15 minutes. 2 days  in and I was exhausted. 

Day 3 I decided to go to the hospital to have a chat with them, I was physically exhausted and the contractions were coming to a point where I was no longer able to talk through them. I consented to an internal, they confirmed I was in active labour at 5 and a bit cm dilated, the gave me the option of staying in hospital or going home. I chose to leave, knowing that these contractions were getting me somewhere gave me another boost of energy. We went out to dinner that night with my parents and my in-laws, both live quite a distance from us. It was wonderful to spend that time with everybody, we spent a lot of the 'down time' focusing on our son, we always remained open and honest about details of the pregnancy and what happens during birth with him. We went to bed refreshed and still pregnant.

Day 4 I ended up going back to the hospital, contractions were hitting hard and fast, to the point of having to squat on the ground in the car park to be able to get through them, we were close, they were now all over the place with no regularity but they were intense. I spent the next few hours in a birthing suit, bouncing on a pregnancy ball, which I was reluctant to do because they made the contractions a thousand times worse, the midwife assured me it would get the labour going, in the end I had to stop. I couldn't bounce and make it through the contractions. I ended up sitting on the ball, leaning my head onto the bed and just staring at the sheets to get though them. I consented to another internal, by this point the midwives were starting to worry about the intensity of the contractions and progression. I was only 6 cm dilated, I felt an extreme wave of let down, my body was working so hard, but I'm not doing it properly, this couldn't be further from the truth, my body was doing just fine, my body was doing great preparation. 

They decided they wanted to break my water and it may sound silly after the high intervention level so far, but I was not consenting to yet another. I was well aware of the trickle down effect that breaking my water would do, it was then I decided I had enough of all this intervention, I had new found energy. I hauled my heavily labouring pregnant self out of there, they gave me sleeping pills to try to get some rest and told me they would preferred if I stayed. I still cried on the way home, I made the right decision, but I was exhausted and ready.

I didn't take the pills, the intensity died down and I slept, I slept a sleep of exhaustion and peace. I woke up without a sign of labour, was all that a dream last night. We ended up going for a long drive to my husbands grandparents farm (over an hour away) tempting fate perhaps, we had a lovely family lunch and I sat rocking in the rocking chair most of the time to help my contractions, we hired some movies and went home to relax. It was now 6:10pm on August 15th 2010, 5 days after my first contraction. Halfway through the movie came a sudden onset of highly intense, very close contractions. As  I rocked on all fours on the floor in intense pain I told my husband I needed to go to the toilet, this happened through two more contractions until it clicked and he replied "No you don't, your having a baby!!". I was contracting hard & fast and was in a world of my own, it was a very comical scene as my husband tried to wrestle me to the car with me screaming "no, I don't want to move, don't move me, just leave me be!"

My MIL met us at the hospital and I was now simply staring as contractions hit, I would stare at the ceiling, or a spot on the floor, no yelling, no screaming, just pure concentration...and boy did it feel good! I guess that is why midwife on call did not believe I was very close to birthing, she put me in a monitoring room and took her sweet time to come have a chat to us, she finally had  look and announce "oh, your having a baby right now". I walked the 10 metres to a birthing room, my waters still intact and I had begun pushing as soon as I made it to the room, at this point I was actually comfortable laying on my back. The midwife offered me gas, I took it, I had 2 breathes of it and they took it back off me (apparently gas has a massive affect on me, and just those two hits made me exclaim that we were all in the matrix), so I started this naturally and I was finishing it naturally. I never felt the urge to push with my son, I simply did it because I was instructed to, with Harper I did. Two pushes and my child, my precious daughter who was not meant to even be here was laying on my chest, the time was 6:50pm, 40 minutes after my contractions picked back up again, 20 minutes after we arrived at the hospital. 

Harper Maree was earthside, the waiting game was over, or so we thought...

The road to our child. Part 4.

After the CVS, the rest of the pregnancy was a waiting game.  We had regular structural scans to watch growth, the main focus still the heart, but also watching for any stunted growth. A major heart scan was done at around 30 weeks, when her tiny heart was big enough for an in depth analysis. The sonographer looked at her heart for over an hour, detailed views, watching blood flow etc. Harper had a perfect heart. We were on the right track, 10 weeks, give or take, and we would know for sure. For the first time in months we were optimistic.

At our weekly sit down with our doctor he told us there was a slight cause for concern with her structure, he asked for our heights, based on genetics our children would most likely be on the smaller side. She was small, not overly small so that in itself wasn't a big issue, the problem was she seemed out of proportion, the top half being longer than her bottom half.Yet another calling card for potential genetic problems. Now, to me, scans are not the most accurate thing in the world, I take everything they say via looking at the scans with a certain amount of leeway, however with the mountain of 'calling cards' she exhibited, along with the mounds of statistics thrown at us, it was yet another let down.

We were on the home straight, we had made it to 30 weeks, Harper was very active (just like her big brother) she provided me with morning sickness for the entire course of the pregnancy (just like her big brother). We allowed ourself to be hopeful at this point, all signs pointed to perfect and our hearts did too.  I was still considered a high risk pregnancy, but I was 'allowed' the option my using the hospital appointed team of midwives, as long as I was also seen to by our high risk doctor.

At a midwife appointment at 35weeks they felt uneasy about my fundal height, I was consistently measuring a minimum of 4 weeks behind but now I was measuring 28weeks. upon inspection (yet another ultrasound) Harper was nestled head down, engaged and happy. It was just, yet another variation of normal, for MY pregnancy. Harper was happy, unfortunately, I was not.

I found myself subconsciously distancing myself emotionally from Harper. I did, and still do feel like I was robbed of enjoying my pregnancy and enjoying my daughter being nurtured inside my body. I had a lot of 'woe is me' moments,  I was nothing but scared and that's okay.  I struggle remembering the feelings I had towards my daughter, its upsetting to admit I ever felt that way. I had ante-natal depression. I am not ashamed of that in the slightest. There were times where in private whilst pregnant I had stated that I didn't want her, I couldn't do this and I couldn't be strong for her, none of this is true, but it conveyed my feelings at the time and is NORMAL to feel this way. Whether you have a complication free pregnancy or a high risk pregnancy, whether it is your first pregnancy or you 5th, it is normal. We had a genetic counsellor and a family counsellor with us every step of the way and I am thankful.

Is still cry about it to this day, I cry for the lost time I can never get back, for not relishing the time I had connected with my daughter in our own private world. I cry for the thoughts I had about her, I cry for playing the blame game. Most of all I cry because I am blessed, I cry tears of happiness as I realise that none of that truly matters now. I have my daughter, others are not so lucky, this does not take away any meaning from my personal feelings, but its an aide to look towards the positive and not the negative, for those children lost, for those parents suffering.

If Harper has taught me anything, it is that I don't have to be strong, I have to be honest. I was never emotionally ready to meet her, but in the end, its not me who decides that anyway. On August 10, 2010, harper decided I was ready...

The road to our child. Part 3.

The decision was made, no matter what we would continue on with the pregnancy, we will let our child decide her future, not us. A lot of the laws around termination had just changed,  in the weeks leading up to the decision I spent a lot of time talking to a friend who had been put in a similar situation, her 1st child had an only one chamber heart, her child would never take her first breathe, the decision her family made was to 'terminate', this meant she would be induced and would hold her baby, name her and kiss her goodbye. (My friend has been blessed with two healthy beautiful children since, not a day goes by that I don't think of her heartbreak and how our stories could be so similar)

We had numerous conversations with our doctor, I wanted to know if this would be the case for us, if our child was 'not viable for life' and I decided I could not carry that weight on my shoulders, would I be allowed to birth her, would she be a person, would I be able to hold her, kiss her and tell her how sorry I am? His answer: plain and simple no. Our decision was set in stone.

Even though we were continuing no matter what, we did agree to a CVS, we wanted to be prepared, perhaps we were looking for any kind of positive news. There was no option to reverse our decision to keep our child if the result came back bad, the CVS was performed at 12 weeks gestation, the results take over 3 weeks to return and the 'cut off date' for termination given to us was 16 weeks, we made a blind decision to trust our baby.

A CVS can pick up numerous chromosomal problems, but not all that were associated with a Cystic Hygroma. The process is something I never want to got through again, the held down my baby so she couldn't move and knock the instrument that was scraping at her placenta, I was physically and emotionally bruised after it.

Positive news came, the CVS results came back perfect, they also came back with the news we were carrying a girl. Good old  Doctor 'bad news' was quick to remind us that the results only knocked  few possibilities out of contention and that now she is clear of Trisomy 12, 18 and 21, the possibility that she has a    major physical deformity has jumped to 'almost certain'. Meaning there is something wrong with her brain or heart that most likely makes her not viable for life. We agreed to routine structural scans, they wanted to focus mainly on the heart. They told us not to get our hopes up, that the Hygroma is not showing any signs of shrinking, in fact it was growing with her, when in most cases Hygroma's shrink as the baby grows.

On the way home from the positive news I felt like we should be celebrating a win, but all we were doing is hearing the doctors telling us that something is not right and that our daughter still only has a 1 in 100,000 chance of being born healthy. The odds they gave didn't change when the CVS came back, it added stress, it added even more what-ifs.  A song came on the radio, we listened, we cried. My husband and I looked at each other, I cannot believe I've uttered these words, we said "I would like this song at her funeral". It was a dark time, we couldn't focus on the positive, how could we, everyone was telling us not to, everyone was preparing us for loss. I cry remember planning the 'if' she didn't make it, why couldn't we just focus on that IF it did happen and enjoy having her grow as a part of me, as a part of our family. I cannot listen to that song any more, its an instant trigger, my husband on the other hand loves it, he says it reminds him that we beat the odds and we have a daughter, I wish I had his positive spirit, it only reminds me of the pain and how I feel like I was robbed of enjoying my beautiful pregnancy.

We now know our child is a precious baby girl, we name her right away. She is our child, with a name, she is a person, she is Harper Maree...

The road to our child. Part 2.

Yes, Termination.

I remember it clearly, my son was playing with a red balloon, laughing as he bumped it against my head. My husband, whom during the discussion with the doctor had somewhat drifted away to the corner of the office, was visibly holding back tears. The doctor had called our child Abnormal. I, at the time, didn't really fully comprehend why she would suggest termination. I wasn't well researched on any of the syndromes she had stated, nor was I aware that the following months would be full of scare tactics, percentages and numbers.

Upon exiting the office you had to walk through the waiting room to exit the building, I felt like everybody knew, we must of looked so solemn, it felt like people where staring at us whispering "She's carrying a abnormal child", I thought maybe they were all trying to guess what sort of news we had gotten. When I look back at it now, I don't even know why I considered what everyone else was thinking, perhaps a sort of reflection on what I was thinking, perhaps a way of coping with all the feelings of uncertainty.

We left with referrals to the hospital for a Genetic councillor, a sonographer and a team of midwives. My husband rang his mum from the car, we only made it 2km down the road before we had to pull over. When my mother in law answered the phone, my husband let go, he cried, she couldn't understand him, so she just sat on the other end of the phone and cried with him, not knowing why. That night my Mother in law was on our doorstep. I cannot thank her enough. She lives 13hours away, when she hung up the phone she left work and boarded a plane directly, she didn't even bring clothes with her she bought a new wardrobe and toiletries upon landing, bless her.

We met up with the lead sonogrpaher at the hospital, my father in law offered to fly us to our capital city for the best medical care we could receive, turns out our hospital already had the best in that field. The doctor was very 'say it how it is' and after all the time I spent with him I still can't work out if I liked him for that or not.

We were given another full run down of why my pregnancy was now classed as High Risk. We were finally given options, none of them seemed to hold much hope at this point in time.

Termination was again at the top of the list. Next was to have a CVS (Chorionic Villus Sampling) or Amniocentesis, still after these two options were laid in front of us it was followed by..then make the decision to terminate or not. The doctors were pushing for a CVS, they can be done sooner than amnio's. I wish I could say that the thought of termination never crossed our minds, but I'd be lying. We went home and stewed on it for a couple of weeks, what our lives would be like if we had a physically or mentally (or both) disabled child, we have another child to care for. Were we emotionally strong enough to carry a child knowing that any moment that precious life will no longer have a heartbeat, could we go through with this pregnancy knowing that there is a very high chance I will be birthing a child that never takes a breath, or if the child was born alive their estimated life span may be a mere 7 hours.

We talked, we cried, we begged, we pleaded, we came to a decision.

The road to our child. Part 1.

This is going to be a long story so I'll just separate it into a few parts to make it easier to read.

I have a daughter, she is 8months old, she is smart and beautiful, she is our own miracle. 

We found out we were expecting another child the day after my husband and I married. Between dealing with the wedding arrangements and our 1st child, an amazing 14 month old boy (at the time), we really had no idea of dates and how far along we were. So we went to our GP for a confirmation, they checked HCG levels and sent us for a dating scan.  Everything was looking great our beautiful child had a strong heartbeat and the ultrasound estimated we were about 6 weeks along  with an EDD of Early September.

Our GP called and asked to see us again, my HCG levels were not consistent with the dating scan, they were more than tripled the expected level for only 6 weeks gestation. (1,080 - 56,500 mIU/ml is the average normal HCG level, mine were 0ver 200,000)  We were told numerous reasons, the baby could of stopped growing (and I was actually much further along) or I was in fact carrying multiples that the original scan somehow missed. We were sent for another scan, by this time we were around  7 weeks. The ultrasound went great, our childs heartbeat was still strong, growth was considered normal for the estimated gestation of  7 weeks and there was definitely only one inhabitant in there. We, to this day, do not have a confirmed reason as to why my HCG levels were not consistent our GP had skimmed over the fact that the pregnancy may have started as a multiple gestation but one (or more) may not have 'progressed'. While the high HCG levels were not a cause for concern, they were the beginning of our long journey.

After the 2nd ultrasound we had two weeks of pregnancy bliss, before our world came crashing down following a phone call from our doctor asking us to immediately come back in re: our latest ultrasound. My husband left work to come to the appointment, after all who gets a call back from their doctor if it isn't horrible news. With our son on my lap and my husband standing beside me we got told our child has a cystic hygroma.  Which is basically a lymphatic malformation, our child had a sack of fluid running from the top of her head to the base of her spine. Our GP went on to to spout all the facts and figures.

• It can occur in as much as 1% of foetuses between 9 and 16 weeks of pregnancy. (Our daughters was found at 7 weeks)
• If a cystic Hyrgoma resolves itself by week 20, the outcome for good is around 54-80%. 
• If not resolved the potential of a good outcome is dropped to 2-9% (our daughters did not resolve until somewhere between 29-32 weeks gestation)
• It is associated with Turners Syndrome, chromosomal abnormalities such as Trisomy 13, 18 and 21 (Patau, Edward and Down Syndrome) and Noonan Syndrome.
• Fetal Hydrops occurs 22-76% with all cystic Hygroma's and is almost always associated with miscarriage or fetal death. 

Our Doctor looked us in the eye and told us "We highly recommend you terminate this pregnancy"

Mason

Mason,
29 months old, 2.5 years of pure joy, you are an amazing person. You are beautiful inside and out. You talk with such enthusiam, your words hold so much meaning to me. Just recently you've started to really get into using your imagination, oh the place yous go and the things you see, its magnificant listening to you as you tell wild stories and adventures. You are active you love to run and jump (especially jump!!).

You've been very interested in Daddy's job and you eagerly watch, we didn't realise just how much untill you began to do stretches in the living room, demonstrating perfectly executed stretches and yoga postions. We've never taught you this, you are so eager to do as Daddy does that you taught yourself by watching. When we asked you what you were doing, you told us that you were stretching and that "You need to stretch before you do Parkour, because Parkour is allllllll about safety". Your daddy (and mummy) were bursting with pride.

Please remember that enthusiasm for life and learning, you have such amazement in your eyes and as a mother I dream that the sparkle never dims, you beam so bright. You are very funny, you tell jokes and just incase daddy or I don't get it you follow up with "just joking you", a sense of humour is important.. fun is funny and there is lots of fun to be had.You are loving. Your baby sister looks at you like there is no one else in the world and you are such a wonderful big brother to her. When people are upset you are the first to offer comfort, such a great feat for someone so small, you truly feel for others, what a great young man you are.

I love you.

I love you all day.

Every day.

For Always.

Love all Day.
K

Show them who you want them to be, don't tell them.

I am but one person in the sea of thousands of millions. But to two people I am THE one person. I am mum.

My toddler has a new game where he sings everything that pops into his head and with joy I find that usually the song is about me.

"Oh mummy, oh mummy, buzz lightyear and my mummy,"

Okay, so Buzz Lightyear is up there with the best of us, but I am proud to be lumped into the same toddler catergory as him. It's also a reminder that I (and his father) am the main person in his life, I am what he thinks about,  he is watching my every move, using my actions as a learning tool to develop life skills.

As parents we do shape our childrens lives, our actions do determine our childs growth. But, I feel I am merely supporting them in their life journey, not choosing their journey for them. Therefore it is even more important to remember your child is watching you, learning from & thinking about you everyday. Alot of people complain 'my child doesn't listen to me', this may be so but your child is definitly watching you. Actions speak louder than words anyway, so save your breath, talking is only 1/3 of the puzzle. If I don't expect it of myself I don't expect it of my child, my thoughts, personality & feelings do not hold any more weight then those of my child.

Want your child to be someone great...then show them what someone great looks like. Want your child to be kind and loving...then show them what someone kind and loving looks like.

And while doing so.
Love all day.
K.