What is “Normal?”

Normal…….oh that word. Normal, Darcy will never be a “Normal” child. If you say it enough it doesn’t even sound like a word………..NORMAL.

I guess normal does not fall into a baby having so many appointments. A baby having a syndrome.

I suppose normal means that your child will one day walk or talk, eat and drink, roll and crawl within the time frame that is generalised throughout this judgemental little world we live in. And if they do not, well they just are not normal.

Normal categorises………Normal puts people like Darcy into a category, one that requires much intervention, much medical assistance, much therapy. But please tell me how that is any different to a “Normal” child. I have met many of  normal child that also requires these services, some requiring all.

What truely makes Darcy not Normal, not fit into todays society is not the doctors appointments, not the medical issues, not the extra therapy but his intellectual development.

The amount of times that I have proudly introduced Darcy to people and when they go “oh he is so small, what age is he?, oh he is tiny” for me to respond  in detail his syndrome, as I am one person who is not ashamed of my baby, to hear “Im so sorry”

IM SO SORRY!

Why, why are you sorry and I always ask that. I cannot help myself. I want to know why, what makes this situation a sorry one? Is it because in your eyes he is not “normal”

I was told Darcy might of had Trisomy 18 at birth, I was told as Darcy was taken from me. I had finally met him that this is what they suspected.  If you google Trisomy 18 it will shock you, it is truely a “Im so sorry” kind of thing. The child is normally stillborn, if the child does survive birth the life expectancy is very short lived.  Now if that was the case I would gratefully accept “Im so sorry.” As he would never of been here today.

But it is not the case, I have a beautiful little boy, one that fills my heart with so much love, a boy that surprises everyday, a baby that cries and laughs. A baby that plays and throws tantrums. I have a baby, I have a normal baby. He is just a little slower, just a little delayed, he may not talk, he may not walk, but I will be his voice, I will be his legs. I will ensure he has everything and more that he ever needs. Darcy is the happiest little baby he is such a blessing.

His milestones are met with celebration EVERY TIME.

His life is rich with love EVERYDAY

His heart is full of laughter and delight, and he has made me the best version of myself.

He is my little blessing, he makes me a better person for just having him.

In his short little life so far we have had some bad news and good. But the good always outweighs the bad. Just the other day I was told that he may never talk, but thats ok I do not need to hear “I love you mummy” from his mouth, I hear it everyday already from him. His eyes say a thousand words.

I was also told that he may not walk either, and that his hips may need to be broken and reset when he is around one. But when that time comes we will deal with that. And I do believe he will walk one day. Maybe not in the “Normal” way or the “Normal” time frame, but in the Darcy Normal, the Darcy timeframe.

At that same appointment I also received great news, Darcy is medically well, his heart is “normal” his gut is “normal” like every other “normal” baby.

Every child is beautiful and unique, they all write their own books, and each one is beautifully written. My hope is that more people will pick up Darcy’s book in the future and see the beauty in not being “Normal”

Because NORMAL is just as it reads…..And my Darcy is normal in my eyes.

 

 

 

How time flies……

This guy, where do I start? I look back and just think WOW! The milestones he meets! WOW! The things I was told he may never achieve, he has! He has gone and shown me that if you never give up you will get what you set out to achieve!

I was told he would need a peg for feeding, well didnt we show them Darcy!

I was told he may not open his hands and grab things, ha not likely! He now sucks his thumb, he holds his bottles, he grabs his spoon when feeding he holds my fingers and he feeds himself rusks!

He no longer has any heart conditions, his SVT has resolved and he is no longer on medication, this is the biggest advantage going off this medication because now we finally have a “normal” sleep routine! Do you know how nice it is to have a baby that goes to bed at 8pm and gets to sleep now through the night! Not having to wake the poor baby because he has medication due at 10pm! That I tell you is bliss!!!!

Since Darcy has come off his medication I have a different baby, the medication I gave him was making him extremely drowsy. So when he had his assessment for how his progression was for his age he was falling behind! He was 6 months old meeting that of a 2 month old baby! Now he is nearly 8 months old and I would say he is meeting the milestones of at least a 5 going on to a 6 month old!!! What a huge difference!

I cannot express how proud I am of Darcy!

But along this journey this guy has not only surprised me but he has grounded me, he has made me such a better person for having him in my life. One thing I am most proud of having Darcy is I am not ashamed of him. I never find it hard taking him out, I don’t find the questions too rude or nasty as some others may find them. Yes I will admit there are some days when I have been out all day and after the 3rd or 4th person asking how old my ‘newbie” is, I get a bit “oh this fucking question again” but I do not let it show, some days I just say he is a dwarf and keep walking. Other days I will go right into what Darcy has and give the whole journey we have been on so far. But it just depends on the day.

I guess the whole reason I decided to write this blog today was to validate the reason why I have chosen to change Darcy’s name. I needed to see in writing what I have done so far. The milestones ‘we” have achieved together, the appointments we have attended over the short 7 months that he has been here, the worries I have faced alone, the sleepless nights, the upset baby, the happy baby, the sick baby, the baby that stopped breathing all the time when he was younger, the bottle feeds, the cuddles, the smiles, me sitting alone on the couch thinking I cant do this anymore and not having someone to tell me its going to be all ok.

This all came to light just recently when my mum came up and stayed with me. Holy shit!!!! It really did all just hit home!

What I didn’t have to do every feed! Darcy’s crying, thats ok Kel mums picked him up and is settling him. Oh shit whats that you don’t have to eat at 9pm because mum is going to feed Darcy and put his PJs on. You want to go to the gym…….sure go for 2hrs we are fine here!!!! And I know thats not what every household is like but Ive never had that before, I could just pop down to the shops.

Now no thats not what broke me with changing Darcy’s name, its so much more than that, if I was to write it down it would be turned into a book. So I will just give you a snippet.

Every major appointment I had notified his father of it, he has never attended one! After these appointments he has NEVER!!!! and I mean never called or text to see if Darcy has been ok or his progress. This to me is absolutely disgusting behaviour you would expect from nobody who has a heart! especially when it is their own child! You would be there! Just to let you know he has his own business he always finds the time to take time off work for fishing and camping!

He will visit Darcy about every 3-4 weeks and stays for only around 1 hr, which includes a smoke break and brings his on/off again g/f! Also he tells everyone that we get along great! Yes we do because I am always accommodating to his needs, let him bring the g/f and never contact him nagging about his time he doesnt spend with Darcy! Really he has got it pretty good! No wonder he thinks we are ‘mates’! This is what I have to deal with! Not anymore my son will not be an afterthought or come second or third to a g/f or fishing and mates!

He has brought new motor bikes, boat accessories, away all the time fishing, supporting his new girlfriend who has no job and lives with him, but has never paid for a specialist appointment or brought Darcy anything, apart from a 17 dollar turtle from reef HQ when he went with a friend and their child!

This is me at my wits end with that situation!

I am a fair person but what I want when Darcy is older to know that his name is one of love and not of convenience!

I guess you ask how I changed it without his ok????? He didnt sign his birth certificate, he didnt think it was “IMPORTANT” best thing he never did!

So I now reintroduce………..

DACRY THOMAS GOW 

The best thing to come out of a bad situation.

MY LITTLE BUT MIGHTY EVERYTHING. 

 

When it all hits home.

When it all hits home……. when you finally see that your child is delayed. You finally realise that he has a syndrome. Not that you were not well aware of that the whole time, but you suddenly notice, you see from an outsider looking in……..not the mother that wants to believe that he isn’t that delayed, finally it all hits home.

Darcy is now 5 months and 2ish weeks old. So much has happened and I do apologise for not keeping up with the blogs. Honestly its not from not having anything to write about, it is more to do with the fact that its all been that little too much to write, its been a little too much for me to even try and process these days.

Darcy is amazing.

Darcy is such a beautiful soul, his eyes are so deep. He shows such a love by just looking at you. He has this old soul, he is not a child that wakes crying. Every morning he is smiling. Every night before he goes to sleep he is smiling. And that makes this whole situation so much easier to accept. Everyday that I put in 110% for Darcy he returns that with so much more. His little milestones that I hope he achieves, he has. The little problems that we face and I am unsure that he will meet, HE DOES!

Cornelia de Lange Syndrome who would of thought. Some times I think it  would of been better if any syndrome that he had, that he had more of a common one. One that the Speech therapists, dietitian, Physio, Occupational and all other specialists that deal with Darcy knew about. Our weeks are normally full of appointments. Ones that no other first, second, third or more parents have to deal with. One thing I am grateful for is I know no different, I am a first time mumma, and I am blessed that I know no different.

But thats when I started to, thats when I really noticed. I had a friend have a baby, a friend I totally adore and her son I am totally bestowed by. Thats when I really noticed his delays. He is only 8 weeks old now and Darcy would probably be at the same stage as him. The thing is Darcy is probably not meeting half of what his little best mate is. Sometimes I feel like I haven’t been doing enough, I feel like I am letting Darcy down. The questions that go through your head is am I doing enough for him?  Am I putting in enough physio a day? Tummy time, is it enough? Do I let him sleep too little or is it too much?

His head is flat on one side, but I try my fucking hardest to keep him off it. As I sit here typing this i am close to tears, oh who am I kidding I am in tears. The medication I give him daily…….is it helping or is it just another thing that one day will cause another problem.

I received a letter from the surgical specialist the other day, it said that they do not wish to bring down his testicle, it stated that because they are unsure of his life expectancy due to his ?cornelia de lange synderome diagnosis. That in 9 months if he is still around they will review Darcy and see if it is necessary as he may never have a mature use of it. Lets not take into account that Darcy may just live to be a teenager, yes he may not need them as he becomes older, but I am from a medical background and I know the complications that can arouse from a testy not being brought down. What a nice thing to receive in the mail.

I know this may seem like a bit of a down blog, but its really not. Its a real blog, it is a snippet of what Darcy and I have had to face, the daily struggles of everyday life. The struggles that every parent has to face.

I may have a baby that has a syndrome, but at the end of the day I am just a mum. I am just like all you other mummas out there. I get up in the morning and just like all you amazing mummas I put my baby first. Just like you, you will put your crying hungry baby before your first morning wee.

And I will always be grateful I never thought I would be a mum.

A little feel good to end this washy blog.  Darcy has taken a real love for a snuggle toy, the other day I went to Kristas house with it, I had no idea where it came from this snuggle toy, but Darcy loves it. Krista went funny, said oh you are using it. I just went yeah, “like what you talking about girl.”

A year earlier I had a miscarriage, a year before I fell pregnant with Darcy I had fallen pregnant. Adam, Krista, Vye and I had gone shopping and they had brought quiet a few presents for my baby. They returned those presents, but right in the bottom was one they missed. They didn’t know if it was a good idea to give that present to Darcy.  The present that Darcy loves, was the present that was for his older brother or sister.

Everything in life happens for a reason

 

 

 

 

 

 

Cornelia de Lange Syndrome

Cornelia de Lange Syndrome (CdLS) is a very rare genetic disorder present from birth, but not always diagnosed at birth. It causes a range of physical, cognitive, and medical challenges and affects both sexes equally. The syndrome is named after Dutch pediatrician Cornelia Catharina de Lange, who described it.

It is often termed Bushy Syndrome and is also known as Amsterdam dwarfism. It is a genetic disorder that can lead to severe developmental anomalies. It affects the physical and intellectual development of a child. Exact incidence is unknown, but it is estimated at 1 in 10,000 to 30,000. Retrieved from Wikipedia. 

I am jumping forward, I will go back and explain more about Darcy’s stay in SCN but for now all I can think about lately is Cornelia de Lange Syndrome, CdLS. Bushy syndrome, my hairy little guy! Amsterdam dwarfism, my nearly 4 month old that is still in new born clothes and only weighs 4kgs and is 53cm in length. My one in 10,000 to 30,000 rare little baby boy.

Had you ever heard of this before Darcy came along? no, neither did I. Darcy had be born into the world and for 6 weeks no one, not even the specialists in the neonatal unit knew what they were looking at.

I remember one day walking into the hospital, confused already for all the tests wondering why are they looking, do they just want something wrong with him to explain why he was so delayed! And out the front was a severely retarded young man, he was wheel chair bound, he was all contorted and drooling making grunting sounds.

That was it! I was a mess, I walked into SCN beside myself. A college that I had the pleasure of working with was in charge that day, that day I got some answers, after 3 weeks I got some insight as to what I may be looking at. I cried to him, I told him what I had seen down stairs and I asked him “is that what we are looking at Mark? Is my child severely retarded, its the unknown Mark! I dont care if he is but I just want to know. Is my baby boy different? What is my life going to be like? I knew it was going to change when I had a baby, but this Mark, this I dont know!” And I cried, I sat there will all my dignity down finally and just cried.

His response, ” Kel, Yes he may very well be or he may not be, but no one can know the outcome. All you can do is keep loving him the way you are.”

A week later Darcy was discharged from SCN, 2 weeks later we had a Paedriatric appointment, honestly I walked out of SCN thinking nothing was wrong with Darcy, his cry was different and he was small but I honestly still just blamed that he must of been very premature, not a syndrome, just premmie.

I sat in the waiting room, I had Darcy in his pram next to me. Krista was with me but she had to go. In the waiting room was a range of children, they all had some form of special needs. Oh I thought what am I doing here, they think some thing is wrong with my Darcy. The longer I sat there I thought well he doesn’t look like these guys. Im out of the woods.

Darcy Thompson please, then Frisch looks at me and smiles, go in Kelly ill be in soon, ill have the Register look over him first, I wont be long.

It felt like forever, The Dr was with a medical student and they were going over Darcy, noting his slow reflexes, his muscle tone, his facial features that were not “normal” then I was given him back. Frisch then came into the room and sat across from me.

Kelly you look great considering. How are you coping? “Oh Frisch I m good, I am so happy he is finally home” That was my answer as he sat across from me while I held Darcy in my arms.

He looked at him intensely, he smiled at Darcy, he had compassion in his eyes. He analysed Darcy in the most warm way, he didn’t touch him, he just looked.

Cornelia de Lange, please Dr Josh look that up. I have never gotten out of my chair fast enough. I was standing behind the Dr reading what had come up on the computer.

Darcy ticked all the boxes!!!! Long eyelashes, low set ears, mono-brow, muscle tone, the mow-hawk, the upturned nose, the big philtrum, thin  down-turned lips, his fifth finger is curved, his toe is weird, his skin is mottled and he has a blue tinge around his eyes and mouth, small head and low birth weight. Now that was just what you could see. Medically he also ticks all the boxes, cardiac issues, undescended testes, reflux, high cleft palate,  slow development.

His bloods needed to be resent for genetic conformation, Frisch looked at me. I broke down! My world fell apart in that room that day. I looked at Frisch and he said “oh Kelly, you had no idea did you?’ “Oh I am so so sorry,”  he hugged me as tears ran down my face. My baby, my little baby has a syndrome, cant I just have a normal baby! Im probably only going to have him and Im given a child that I have no idea how to look after?

I could barely walk out of that room, I hit the door trying to get out several times.  I put my sunnies on as the tears ran down my face and I prayed I didn’t run into anyone, I didn’t want to talk. I just wanted to disappear. So much went through my head, firstly once again I faced it on my own. I finally realized it will always be me facing all the bad news on my own. I am going to be the one to face all the medical challenges by myself, be spending hospital visits in the future alone with Darcy.

When I got home I went to my room, I cried, I didn’t leave my room for three days. I expressed for Darcy feed him via a bottle in a sideline position I was taught so he wouldn’t choke then Krista would come in and take Darcy from me.  She would burp him, comfort him and once he fell back asleep she brought him back to me. Adam also did the same, for three days I was in a dark space, I was trying to come to terms with it all. I didn’t reject Darcy, god I loved him with all my heart. I was grieving, like a mother who had lost her child I was morning for a baby that Darcy would never be, I was grieving.

Grief is awful, it has no time limit, I could of stayed in that state for a very long time believe me I easily could have but what good is that? Adam and Krista didn’t interfere, they just let me. They made sure Darcy was being looked after still, which he was. They knew deep down I hadn’t given up, they gave me time. Time was all I needed. They needed time too, it affects everyone.

The hardest thing was telling people, how do you explain something you dont know anything about yourself? I added myself to CdLS pages on facebook, I researched for days while I was in my room. I embraced it all. When I first started to see the other children on the site it all hit home, they all look similar. Darcy’s little CdLS brothers and sisters. A lady from Melbourne reached out to me Emma, she will forever be in my life, she has a beautiful little boy named Tommy who has CdLS. She took time to talk to me, she made it all ok.

When I first posted on Facebook about Darcy a weight lifted. My world didn’t seem so bad, it was going to be ok. Darcy is amazing, he has something about him. His eyes are deep and tell a million words. He draws people to him. The love I have for him is something I never thought I would have to give. And everyone fell in love with him.

The truth is I do not know what the future holds, I do not know if he will walk or talk, but I will put 150% into Darcy  to give him every opportunity that he will. Darcy may not have a long life but it will be one that is filled with love, laughter and great new experiences.

The amount of support that we have received has blown me away! Just today I had a stranger go out of her way, while I was putting Darcy in the car, and came up to us. She said she just had to meet him for some reason. I used to think that it was weird that strangers would come up to us, but now that happens at least once a week! People are drawn to this special little guy, he is here for a reason.

The last time I saw Frisch I said I was excited for Darcy, he said why would you be. Im excited for all the milestones he is going to meet, Im excited to prove that if you put your whole heart into something that miracles do happen!

I dont have a normal boy, but I have Darcy and thats more than I could ever ask for! I’ve waited a long time for him to come along, I never thought I would be a mummy! Syndrome or not he is human, he is a little person, he has a soul.

Thats when Frisch turned to me and said ” One thing I will tell you Kelly, if anything Darcy is extremely lucky that he has you as him mum. You are a great mother”

You know what Frisch, its hard not to be, he is so easy to love.

 

Breast is best…….Fed is best.

The ideal pre baby world was I was going to breast feed, I had planned to do so as long as I could. There would be no reason why I would not be able to. I knew enough professionals who if I needed would assist me if I had trouble. 

There was no reason why I would not be able to share that with my baby……………I wanted that bond! Little did I know that “that bond” nearly led me to a mental breakdown to post natal depression. 

When Darcy was born I had the first try in recovery to have him latch, he was a bit “sleepy” so he wasn’t too interested. Me I was too shocked to really care. I knew that he should of been more interested in the breast but he wasn’t, he was too small, my boobs too big. This was never going to work. Little did i know it was nothing to do with that.

When I had returned to the ward a colleague I worked with was my ward midwife. She pulled down my top and started to hand express. She did an amazing job and kicked off what was the beginning of me becoming an expressed milk cow.

Every 3 hours that night she attacked me. I did not have to do anything. I am so grateful that she did that. I had no energy to do it. She knew that and she had all the time in the world for me.

The thing is, just because your child is not beside you does not mean that you have it easy……. Its harder much harder.  You are so tired from the worry of your new born. Their medical condition, the fact that they are not beside you, but above all that you have to motivate yourself to express every 3 hours, every 3 hours to ensure your milk comes in all for a child who is not there beside you to demand it from you.

You lay there trying to hand express the 1-3mls into a syringe, you then buzz the midwives to take it to him, or if you have enough energy you take it there yourself at all hours of the night, but when you do that you end up sitting there in the darkness looking at your baby laying there. You end up crying, wondering if that pitiful little amount is worth all the energy and hard work you put in. And you know what it is!

The hours of waking expressing each breast for 20 mins, putting it into a container, or syringe at the start, labeling it, transporting it and feeding it to your baby, its worth it. Its so worth it. Anything to benefit your baby is always worth it.

By the end of the week I was milking like a cow! It was pouring out of me, I felt on top of the world, Darcy was receiving no formula finally and on full EBM! It was one of those proud mumma moments. It made it all worth the tears, the doubt, the worry. Even if he wasn’t latching it, he was still receiving it. Even if it was down a tube!

At this time he was still being fed via a nasal gastric tube. No bottles and no breast. They suddenly one day suggested introducing the breast. I was over the moon! no more expressing when I was there, only at night when I was home (at this time I was still in hospital) The feeling of finally being able to feed your baby is something I cant describe.

I was scared!!! So scared, what a weird new thing, would he be getting enough. But my main concern was that I would not know what I was doing. The thing with breast feeding is its not easy, its not a walk in the park for some people. Add factors into it and it can become the most difficult thing you will ever do. And it seems all that more important because as a mother you want that bond, you want to be able to feed your own baby……well that’s what being a woman is all about isn’t it?

I had only just held Darcy for the first time a couple of days earlier, his heart was not as great still as it should be and i thought with the size of my kahooners he surely was going to suffocate. Well haha I think a couple of times he just nearly did!

I had a wonderful midwife come and she took charge!!!! Wow this was happening! I was nervous, scared out of my mind! He latched……….but what the F…….. the pain! His suck sucked!!!!!! It was woeful! It was a horrible experience, I didn’t feel the bond I felt pain.

But I kept trying. For two days I tried, then we went back to square one. I blamed myself, it was my nipples they were too big for his little mouth. How could this possibly work, I am doing something wrong, it couldn’t be his fault.

When he would feed he would fuss around, so the Lactation Consultant introduced a nipple shield, that went ok. But he would break his seal and then the shield would slip around, then his head would slip around……then i would end up with hickies all over my breasts. It was a circus!

When that continued the speech therapist was introduced. She saw no problem with his suck or his mouth. His suck wasn’t as strong as a ‘normal’ baby but it was good enough. I tried for 3 weeks to breast feed. I would try Darcy on the breast for 20 mins max then because he was such a slippery bugger would have to top him up via his tube, once i had done that i had to express. this all up would take nearly 2 hours just to do, also including settling and changing him and placing towels all around my huge breasts to get them in a good position for him, by the time that I had finished I would be staring again. I was doing double the work on top of the worry and being away at night. It all began to be too much.

I would sit there wrestling Darcy to the breast with tears running down my face, I was dreading the time that I would have to try and feed him, My nipples were so sore from his poor latch, my heart was breaking that I couldn’t do it, I always blamed myself for it, it took a long time for me to come to the realization that it wasn’t anyone’s fault, it was just what it was. It was just not meant to be.

I decided in my head to stop before I actually did, I was talking to Krista and broke down. That’s when she said fuck breast feeding Kel, you are a mess. Keep expressing you have enough on your plate. You are going to end up with post natal depression if you keep doing this to yourself. She was a breastfeeding mum but saw that it just wasn’t working, hearing a breastfeeding mum not judge me made it easier to accept too.

That day I went into SCN scared as hell, feeling guilty as hell. Really disappointed in myself that I couldn’t give my baby milk directly from the breast. But I was! I was doing my best! He was getting my milk! Just not the way you would normally do it, but he was still a breast fed baby, he was just an expressed breast fed baby for 7 weeks, who is now a formula fed baby.

I had a choice, my choice was do the best with what you can, because me being here for my child out weighs the mental breakdown I saw coming a mile away. That the nurse that last morning when I went in to try for the last time saw coming! She made me feel ok, she said stop! Kelly you have cried enough tears over this, you are doing a good job. You do not need post natal depression or a major breakdown let me go and get a bottle and we will give that a go. That day I felt guilt, but I also felt a huge weight had lifted. And Darcy, well he knew no different, all he knew was that he didn’t have to work so hard, that this bottle business is pretty dam easy! He nailed it in 20 mins and I for the first time got a nap between feeds.

As I was told by a Lactation Consultant:

“If breastfeeding was as easy as it looks, then we wouldn’t have Lactation Consultants”

 

 

They say you cant choose family..I disagree

Today a friend sent me a moving testimony. It was about being told by the Drs that they had concerns about the “looks” of their newborn child. He had a syndrome, he had Down Syndrome……..

I couldn’t watch it to the end, It brought back that first night for me all over again, how i was told, how i felt. But the biggest thing that ran through my head was thank god I had Krista!

The tears were running, streaming down my face and all i could  think was thank god she was there! What if she wasn’t. This video talked about how there were a whole team of Doctors, interns nurses all there to tell her and her husband about the findings of their newborn.

I was also told that there were concerns about Darcy, his size was too small on the scans, they were unsure of his birth if he may of had to be assisted with his breathing. For the week leading to his birth i was attending second daily appointment’s to see that he was doing ok, and that I was too. But the one person who was by my side the whole time was Krista.

When I found out I was pregnant she was the most excited, she already had plans for the new family addition. Pete and I were having dramas and I felt pretty alone, but Krista really stood up and made my pregnancy a positive thing.

She came to my 20 week scan with Vye in tow and Peter, like hell she was missing it, she made that pretty clear from the start she was going to be there no matter what………And when i was told I was having a girl, she saw the shock, straight after the scan she insisted that it was finally time i brought my new daughter some stuff.

She was there when I was first admitted to hospital for the week when they had concerns, she came to my birthing class, more excited than me about it. She would invite herself to any thing that was related to the baby. People did have their opinion on it. “Why are you so close to your sister-in-law?”  “Thats a bit weird isn’t?” But I will ask you this, would it be weird if your sister went to all of your appointments if you were a single  pregnant woman?…… no well as i said “They say you cant choose family….I disagree” and I thank the greater powers that she was chosen to be in my family.

My family are a cut above the rest, they are amazing.

The night that Darcy was taken from me Krista went with him, she went into SCN alone with the nurse, she was the first person that received the news about Darcy about their concerns, she had the love of her first nephew and not long after she met him was told of their concerns. There all by herself with Darcy.

Krista is a mother, she is  kind and caring, but she is also fierce and stands her ground. I am not too sure what went on in there and that is forever going to be with Krista, her special little bond with Darcy that no one can ever take from her. They will now forever be very special to each other because of that moment. I will never truly know how she felt, but when they went to send her back on her own to me without Darcy she wouldn’t allow it.

I still giggle about this to myself, I imagine it in my head of how she would of been. Krista is feisty and passionate when it comes to things that she cares about. I picture it in my head, she did tell me what she said it was along the lines of “no you will take him back and tell her why you are keeping him here!” Haha and she won!

My baby, Krista and the head of the neonatal care unit returned where the Dr sat and explained to me their concerns. I didn’t understand and I sat there when the Dr left with my baby, crying in Krista’s arms while she also cried with me.

Thats the thing with this kind of stuff, you see the parents and what they are going through with their child having a rough trot, but you dont see that the family, the aunties, uncles, grandparents and cousins. How they feel. Their worlds crush around them too.

Krista I know would of held Vye a little tighter that night, she cried for days, she looked like shit, my mum was like a zombie and for the first time she had nothing to say, my dad flew up up, Betty Darcys mama looked lost and broken,

and my brother he was just devastated…….he worried me the most.

Without these people in my life Im not too sure if I would be as strong, they give me reason to keep going.

I could never let them down, just like they didn’t let me down when I needed them the most.

This truly is the real meaning of FAMILY………..

 

 

He has a name…Darcy Allan Thompson…

I didn’t name Darcy…….. I just sat there at the pub and listened to names being thrown around…….yes the pub. I had approved leave from the hospital when Darcy had made his debut into NICU. I needed to get out, I needed to feel normal. Even if i was sitting there in my TED stockings, looking like death drinking my lemonade. I needed fresh air. 

Peter named Darcy, how he came up with the name I have no idea. To say the truth I was just sitting there devo that we couldn’t name him Indy. I had grown so fondly of that name. Its really weird buy I felt like she had died. I felt no connection to the little boy that laid in the hospital, although I was so drawn to him.

That day when we sat at the pub he was all I could think of, I felt guilty that he was there without me. Maybe its just the motherly instinct in you that makes you feel like that, Im not too sure. But I do know I didn’t care too much about any input for his name.

Adam, Krista, Pete and dad sat throwing around names. Mum was at home with Vye, she wasn’t too well and I think she was trying to deal with everything going on too. Her daughter and grandchild were both huge concerns of hers and she needed some alone time to get her head around it all.

I do remember that the name had to have meaning, they were saying that he needed to have a strong name as he was a little warrior. He was strong and a fighter. A strong name…………

He ended up with a girls name…oops…….I think it was so appropriate, he was meant to be a girl so a unisex name to me was just perfect!

Pete said he wanted David, David is a man that Pete and I both adore. He is Peters grandfather, he is a strong, caring and loving man. Then Peter said Darcy, he felt it was a modern version of David……….of course the name had to have meaning though, this was a special little boy, he was our little fighter, that is when we looked it up.

That is when I knew we had found his name.

DARCY

“Its more fun to be happy than sad is his credo”

“No one would doubt his word”

“When others lose their head, Darcy stays cool”

“Long term friendships come easy to Darcy”

“A fondness for the ocean will emerge”

“While no one can buy happiness, his hard work will pay off”

“He will cover you with his feathers, and under his wings you will find refuge”

That was us done, it was now real, he was now real. He had a identity, he was really a little boy, our little boy.

Darcy Allan Thompson, in respect for his late grandfather Allan who passed away, and Darcy as a modern name in respect to his still present great grandfather. I was proud to say his name. It had love in it, respect, it was strong not because of the names but where the names came from, the heart. Wasn’t he already so lucky.

I went back on a high to NICU and that night returned back to the maternity ward a happy mum, he had a name and I got some well deserved sleep, finally. The next day Pete and I told the nurse on duty his name, she wrote it on his card in his crib, it was official and we were then to be told that he was not going to be sent to Brisbane and be transferred back to SCN. It was one of the days you felt on a high. It was a window of hope, its funny how your emotions can just change. The roller coaster seemed to be nearing the end. Well that was how it felt.

From that day everything didn’t seem as bad.

The next day when I went in to see my Darcy he had already received his first nickname, to the Nurses and Drs in NICU/SCN were to call him this his entire stay, this nickname I believe will stay with him for his life time.

Mr Darcy……Mr Darcy The Romantic.

The nurses fell in love, now isn’t his name just perfect!

I think so too.

 

 

Darcy gets upgraded to NICU

My no named little baby………

He just laid there, with his little arms always so tight and his hands in fists. I dont know if he was in pain, I dont know if he was fighting a little battle inside his own little body, but I do know that I was the saddest I had ever been. Ive been depressed before but this was something else. 

The day before this photo my father arrived, i was so excited for him to arrive. He wasn’t suppose to come until April, but someone had called him to come. Mum had called him and she told him the news that we had been told.

My father called the hospital, which I only just recently found out, asking about the situation. He asked the nurses who were looking after me if he should come up, their response was “if I was you I would.” They couldn’t say anything else over the phone, and still to this day I am forever grateful that they did.

We went into SCN for my father to meet his first grandson, I was so proud. I was proud that I had finally had a baby, I was also sad that he was in there but he survived the night or maybe it was even two nights by then, so for me he was out of the woods. Its funny how the mind works when you receive shitty news! I was told he may not make 2-24hrs or something and I took that and rolled with it! I thought he was normal, nothing wrong with him.

I told everyone that the dates were wrong, that he was much earlier than 37 weeks, he must of been around 33 or 34 weeks, that his size was normal for that term, amd that was why, he was just slower than other babies. He was covered in Vernix when he was born and that in my head was a for sure indicator that he was not a term baby! Im not a stupid woman by any means, but I was now a new mum trying to make any reason in my head as to why he had such problems, that he just wasn’t ready, not that he may have some sort of retardation! That he may just die. That he was so flat!

Dad was standing in scn with me and so was my beautiful friend and I think Betty too. I don’t remember too much of the small details of this but I will never forget when he went into Supraventricular tachycardia (SVT). It was bound to happen, sooner or later it was. The irony of it was earlier that day he had an ECHO done of his heart, he was found  to have two holes in his heart, I was told he had no other concerns with his heart and in 6 months he would redo another ECHO as they normally close on their own.

My baby’s monitors went off their head! They were flashing red, the noise of the monitors were that of shit is hitting the fan! Nurses came in and took Darcy from my friends arms, and next thing i knew the NICU resus team was at his bedside calling for something cold so they could shock him back into a normal rhythm, I just stood there. I knew when his heart rate stayed around the high 200s that something was not right. I also knew that the cold pack should work and it didn’t, we were then asked to leave or we did just leave and they would let us know when they had stabilized him.

That night Darcy gave the nurses a run for their money! He apparently went into SVT several times over night! I was told how many but I cant remember now. he also had to be assisted with oxygen! The next day Ghan came and had a talk to us, he said he didn’t like Darcy, he had too much hair. He was a breath of fresh air! Then he got serious, we were told that we may of had to go to Brisbane asap if they were unable to treat the SVT. He said he had not come across this condition and had asked for  Dr Gooi a Specialist Paediatric Cardiologist at Lady Cilento Children’s Hospital in Brisbane for his input.

Brisbane!!!! You had to be kidding! WTF he was suppose to be getting better, it was already hard enough, I thought NICU that was it, I didnt think there was any worse! That was as backwards as it could get!

How does this happen, It is suppose to be the other way! NICU then SCN then home! Not Birth, back to me on the ward to SCN then NICU!!! Now Brisbane! Thats when my world once again fell apart! What was going on with my baby! Why didn’t I understand, why was my baby who to me looked like a normal little baby be going through all of this stuff.

His hands were both black and so were the soles of his feet, they couldn’t get a line into him. Those bruises lasted  a couple of weeks. My poor little guy, I asked everyday why him.

while he was in there we were not allowed to pick Darcy up, he wasn’t stable for a few days, people came and met him while he was in NICU, none of them able to hold my baby, we could touch him but that was all, I think he had his first bath by the nurse, I did not ask, but the thick white crust that  had covered his head  when i went in one day was gone.

He was put onto heart medication and after a couple of days he was stable and transferred back to SCN.

I was mentally back to square one, I was too scared to touch my baby………. Again!

I did not want to be the cause of him having to go to Brisbane.

What kind of mum was if I was the cause of him going backwards. God I felt useless.

 

 

Meeting Darcy

The entries that I will be writing may not flow, I am writing them from the heart so I may go back and forth with events during the month that Darcy was in Hospital. I write as I remember them, and I will try and keep flow from post to post but I am sure you will still understand where each post is going. 

This photo, wow I do not remember taking it! But thanks to my iPhone I know the date and time. It was the 7th February at 2202hrs. Darcy was born at 1455 so it was around 7 hours post arrival to the world.

My first real meeting with Darcy since I had him. I say this because i did have time with him, I was in recovery and they tried to put him to my breast, but I dont really remember it. I think it was the shock, the rush of the delivery, just the whole lot! Its funny how the mind blocks out things that are traumatic at the time.

To be honest I hate this photo. This photo brought it home for me many days later when I happened to be scrolling through my iPhone and came across it. I still look at it today and think my god he looked dead!

Why do I still have it? Because I look back on it and I see how far this amazing little human has come in such a short amount of time of being here, and it brings me back down to earth. It makes me realise how hard he fought to be here in my life and because of that I can never let him down.

His eyes were so puffy that he couldn’t open them, His skin was so mottled and pale that he didn’t look real, and he had a tube in which I never even thought they would put in, even though you are a nurse and have seen a plenty of babies with tubes inserted I never for one moment thought my baby would end up with one.

The reasons I thought this was because firstly I was expecting a heffa of a child! At least a 8 pounder! Not a measly 5 pound 14 under sized tacker!

And secondly I was suppose to of been going through birth center, a natural birth where 6 hours after having the child you go home! Well didn’t Darcy have some change of plans for me!

Im not too sure who was around at the time I remember Krista was there and mum, of course Peter the father was too and his mum Betty , but I cant remember when everyone else came, noone was suppose to be coming, not yet anyway. My father was interstate, my brother was on a swing in the mines and the rest of my family were also interstate.

But I do know Adam came back early and my father was on his way.

Sitting here now reflecting and writing about this Im trying to think why I cried. Was it the shock of seeing him so lifeless in the crib, I honestly dont know. Was it the fact that I thought I was having a girl and there laid a boy, a boy who I had no name for, I cant answer that either.

Maybe it was the unknown of what I was to do with a child who to me looked so odd, that was so lifeless at the time, maybe it was because I felt he didn’t need me at the time, I wasn’t good enough to look after him because he was not well. And to tell you the truth I felt very disconnected with him at the time, I thought he was going to die and I began to disassociate myself with him.

The nurses in SCN spent over a week just sitting there with me while i was crying and never wanting to nurse him. They didn’t push me, they just listened, hugged and comforted me they took their time with me to ease into the fact that I could touch him and nothing would happen.

There were a few reasons why I was afraid to nurse him, but that is too long for this post I will discuss it in my next one.

He didn’t get his first bath for a week by me. I was happy not to do his cares and let the nurses, I just sat in the chair across from him and cried.

This I thought was going to be a long road for the both of us.

And from that day on he never wore yellow again!

Darcy arrives

Darcy arrives to the world. Its a BOY! Well that was the first shock! I was told I was having a little girl, believe me although I was shocked that was not the problem.

I thought I was having a boy when I found out I was pregnant. I went into my 20 week scan and was told I was having a girl, a bloody girl haha, a mini me god help me!! I was shocked and it took a little while to get my head around that!

I had a name, I had been calling my baby Indy Lorraine pretty much ever since I found out. So to have a boy well that was just not on! I had no clothes for a boy. But I was soon to find out that was the least of my worries.

That night in the maternity ward, post having a c-section I would be spending the night without my newborn and he would be without his mumma.

They had concerns from the ultrasounds I was having. Due to being unwell with pre-eclampsia, he was small, and I believe there were other concerns that they had seen in the scans that I was unaware of at the time.

I was being closely monitored, having second daily CTGs and at 37 weeks and 1 day Darcy was born.

He weighed in at 2670, his head circ was on the smaller side. That was one of the main concerns, but the neonatal specialist also had further concerns with some of Darcy’s facial features.

Darcy returned to the ward with me but he was soon asked to be reviewed. Krista was with me and she went with Darcyto special care nursery, he then came back after being accessed but it was only so I could see he was ok. The dr explained that they had concerns with a condition called Mirocephly and thought he had Trisomy 18.

He was then taken back to SCN and I was left in my room. I was sharing a room with a lady who had a 2 day old baby. Boy did I detest her that night, I couldn’t help it, she complained about her baby crying! What I would of given to of had my baby beside me crying. The small things I guess, she didn’t know I realise that now but at the time that doesn’t matter I was angry.

I did go and see him that night, 6 hours post surgery I asked the girls if I could go and see my baby, he had no name at this time that took a week to do, and i did. I got up cleaned myself and went and saw him.

Thats when I realised something wasn’t right. That night I cried. I spent most of the night down the hall, because of the other mother I didn’t want her complaining because I was crying too, catheter bag in hand, crying on the shoulders of the midwives that were on night duty that night.

I googled the conditions told to me, biggest mistake ever!

I thought he was going to die.