Wow – time flies! Update on the world of Hart – and welcome to our baby girl, Alyssa!

I can’t believe how quickly time flies!  It has been over a year since I last sat down to blog, and so much has happened!

Hartology family

My beautiful family!

Around June last year, after months of trying to conceive and many miscarriages, I went in to hospital for a small “clean out” procedure in the hopes that this might assist our efforts. The operation was straight forward, and some nasties removed.  Within two months we were pregnant!  Overjoyed, yet weary that heart break was once again heading our way we took things very slowly, tried not to get too excited. I was on daily injections and tablets, fortnightly visits to my obstetrician and spent most days feeling like a pin cushion.  Eventually we hit the 12 week mark and we began to relax, but smooth sailing it was not.

During the nuchal fold scan that is done at 12 weeks we were told that our baby had a thick neck fold, which is an indicator of Downs Syndrome, and when the blood test came back, we were informed that we were high risk for a baby with Downs Syndrome. After an emotional discussion and considering all different aspects in our life, we decided to have amniocentesis and find out for sure. The wait for this appointment was agonising, and every night I was in tears – surely this baby that we had tried for so long to conceive would be healthy, surely the procedure would not cause a further miscarriage.

The day rolled around and I was a nervous wreck. The procedure itself was very uncomfortable, and we then had two whole days to wait for results. By Monday both DH and I were basket cases!  We finally got the call and were told that our baby was clear of all genetic disorders. Just as we begin to cheer we hear the …..”but”.  Given my diagnosis of Sjorgen’s and the thick neck fold, our baby was at high risk of congenital heart defects. Our bubble just deflated, but onwards we marched. We didn’t want Miss 7 and Miss 4 to pick up on any problems so we kept a smile on our face and positive dialogue about “jellybean”.

And just because I like to make life difficult, we made the move back to our hometown, Geelong! DH had to do just about everything on his own as I was not able to assist with much at all. Amazing man I have!

And so for the rest of the pregnancy I was having ultrasounds every 2 – 3 weeks to check the heart, and every time was told that jelly bean looked healthy, no signs of any problems. The pregnancy itself was difficult – I was in constant pain, but couldn’t stop as I had two other girls to tend to. At 28 weeks I was diagnosed with Gestational Diabetes (I had expected this as I had it with both girls previously), but within three days of this diagnosis I was once again injecting insulin.

chelsea_ (14 of 47)

So 4 weeks early, on May 28th 2013 Miss Alyssa joined our family weighing 3.04kg. It was an especially magical moment as I had really doubted whether we would get to the point that I would meet our little girl – I was overwhelmed, overjoyed and completely and utterly in love. They took her to weigh and measure, brought her to me for a cuddle and then went to take her again. I was horrified and didn’t want to let go. The nurses then informed me that they were concerned about Alyssa’s sugar levels, and that she was not maintaining her own body temperature and so would have to go to special care nursery.  I could not believe it. It felt like I had just been given the most magical gift and now they wanted to take her away. I made DH go with Alyssa, with strict instructions that he was not to let her out of his sight. What felt like hours later, DH and Alyssa returned and I finally got to hold and feed my beautiful baby. DH then had to inform me that Alyssa was only on a “visit” and she had to go back to SCN as she was still not maintaining her temp, and had unstable sugars.

Whilst in SCN, the nurses made the decision to give Alyssa a formula bottle to assist with her sugars, and to allow me to sleep. They did not discuss this with me, and when I found out I was furious. I asked if they had given the formula through a nasal gastric tube, as anything else could interfere with breastfeeding. They had not.  I struggled during my stay in hospital to get her to attach properly, and I felt like the nursing staff were not very attentive because it was my third child.  I believe it is a direct result of this that I then struggled for the next 8 weeks to establish breastfeeding. I was just about to give up when it all just came together. (I am proud to say I am now breastfeeding Alyssa through the day, and she has a formula bottle at night.)

After three nights in SCN, Alyssa was discharged and able to come and stay with me in my hospital room.  As part of the discharge process from SCN, the paediatrician came to check her out. During this check up he identified an abnormality with her heart. And so began the process of what would be numerous doctors visits, ECG, x-rays and more.  We have an appointment later this month with a Paediatric Cardiologist who will conduct an ultrasound and we should finally know what is wrong with my girls heart, and whether she will need surgery. As she is now 14 weeks old, it has been a very long journey.

At 8 weeks of age, just after breast feeding was established, Alyssa was also diagnosed with silent reflux. I had never heard of this, but was really concerned about Alyssa’s constant gagging, her excessive swallowing at times followed by a painful cry. She has been prescribed medication for this, and it has made a huge difference.

And so now we wait until the end of the month to know more. In the meantime, I have a beautiful girl who loves to smile, laugh and “talk” to anyone who will listen!  She adores her sisters, and will scream and scream to have her needs met (with absolutely no warning or build up!)

Alyssa

Miss 7 has had to start a new school to coincide with the move back down to Geelong, and to her absolute credit she has taken to this change like a fish to water. She has made fast friends with all the girls in her class, and still loves going to school each and every day. It has been a journey to get her settled in and feeling confident enough to have a go in class, but she has made it and I couldn’t be more proud of how she has adapted and approached this challenge. She has started playing netball, and much to our surprise, she is quite good!! Miss 7 has never been very co-ordinated or interested in sports, and so it was with shock I watched her take the Court for her first game and absolutely nail it! It has done wonders for her self esteem, and surprisingly has brought her even closer to her dad.

Miss 4 is still in love with Spiderman, has been reluctantly going to kinder, kicking her feet for 2.5 terms. She has just made two little friends at kinder, and for the last few weeks has been happy to go off to kinder – I hope it lasts! Unfortunately they will not be going to the same primary school as her, so I am a bit nervous about how she will go next year with school.

Phew – I’m puffed from writing this post! More to come soon!

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