‘Normal’? We’re not ready for ‘normal?’

Ask me anything – well mostly anything- about cardiac surgeries, especially those on babies with HRHS (Hypoplastic Right Heart Syndrome) and I can probably answer you! If I had studied this hard for Biology in high school I might’ve done better.

But ask me about ‘normal’ babies – I wouldn’t have clue! Ask Mike – he wouldn’t have a clue either! We are clueless. If I could’ve taken a picture of our faces after our appointments last week they would look in shock! Not because the heart condition has changed (it’s still the same) or the bones look different (they are still small), but because we’ve now been told that the basically, the first 6-8 weeks will ‘look’ normal. Oh, except for the part where little Baby Love starts to show signs of congestive heart failure. Obviously that’s not normal. But we know what to look for and it’s a gradual thing so apparently that isn’t that scary!

We had appointments on Tuesday last week, growth scan, fetal echo (last one!) and OB (yes, apparently he says I do have gestational diabetes *insert grumpy face here) and things are moving along. They predict that she is about 2.1kgs right now and continuing to grow at her own pace. All good news. We sort of left the hospital in shock!

I also finished work on Friday and had a great day with my gorgeous class. I was extremely overwhelmed by their generosity and the lovely cards and gifts. Now I get to sit at home and rest and nap! And WAIT!

About 4 or 5 weeks to go depending on when she wants to enter the world! No more induction or planned caesar, just hopefully a ‘normal’ birth.

Mike and I can’t wait to meet her.

I don’t run marathons!

I’m not a marathon runner. Neither is Mike. Those of you who know us well know we don’t do this! I can’t think of anything worse! Running for hours to just cross a finish line? Training for months on end? Eating the right foods? Nope. No Thanks. Not interested. But kudos to those who do! Impressive work!

I’ve decided pregnancy is a marathon…and I’m allergic to it! Regardless of the problems we are facing I do not find the miracle of life fun! But it’s not long to go now.

But a marathon conjures up images in my head of endurance. We all need endurance in life at some point. Endurance brings up for me the idea of running of race and the idea that at times it will not be easy.

It makes me think of Paul’s writing in the Bible when speaks about ‘running the good race’… ‘keeping your eye on the prize’. This is where we are at. Endurance. And we’re on the home stretch for the first part of the journey. Keeping our eyes on the prize…meeting our little girl!

We had a growth scan yesterday at the Mater Hospital yesterday. I took mum because Mike was at work. I told her we are like little ‘celebrities’ there at times, there always seems to be someone new who wants to see ‘our special case’! I’m sure that’s not the case but that’s what it feels like.

So I’ve mentioned before that there are concerns about her growth. She is small. In the lowest 5th percentile especially for the long bones – arms and legs. This can sometimes be a marker for other chromosomal/genetic disorders but we have yet to see anything that points us in that direction. The doctors say as long as she tracks on at her own pace and doesn’t plateau in growth things will just continue to progress. Yesterday the scan showed that she continues to grow at her own little pace. And the doctor yesterday said he felt that she didn’t show the signs or markers anymore for dwarfism (which is one of the words that had been ‘thrown around’). Which was very good news.

Her belly is now measuring quite big, this can be a sign for gestational diabetes. So I’m being monitored for that. But I sort of made a joke that it’s a good thing – babies born with the mother having gestational diabetes tend to be bigger! Which means she might be small but a healthier weight!

The current estimated weight is 1.7kg! Tiny! If she continues at this pace we can expect and hope that she might weigh at birth around 2.5kg or even a little more, if we are being optimistic!

In two weeks time we have the ‘BIG’ meeting where decisions and plans will be made. Including a rough idea of when she will enter the world. At the moment my obstetrician thinks it will be around 39 weeks, the last week in November. They are talking induction, but we will see about that one!

So it’s really only about 7 weeks to go…or maybe less! Not long now!

 

I finished the ‘ARK’…

When we first were told about the heart condition the doctors gave us lots of information. It was a lot to take in. They offered an Amniocentisis but I refused. Mike says that every time I left the room they discussed termination with him too. I think they knew this was not an option for me so never brought it up.

There was no way I would ever terminate this little life, though I will admit I thought about it a lot and wouldn’t judge anyone who took this route. I found it hard to wrestle with the question of fighting for life and putting our baby through lots of surgeries, or making a decision that would prevent this. I mean what was the difference? On one hand we will be handing our daughter over to expert surgeons more than once in her life and she would have to suffer and fight, or we would hand my body/her life over to doctors to end her suffering now.

In the end, my heart won out. As I knew it would. The Bible says that God knew us before we were even conceived… all the days planned out for us. I know for sure that no matter what God is ultimately in control so instead of handing over her life to ‘men’ I handed her life over to God. He will ultimately decide what will happen to our little girl.

So I built the Ark….at least this is what I’m calling it and I did finish it a few days ago. And no, I’m not talking about a giant wooden boat with two of every animal. I thought about how Noah heard God and built a boat when people around him thought he was crazy. Noah had never even seen rain! He had no idea what to expect, but he prepared a place for his family and the animals and was obedient to God. 

So I built the Ark…. her bedroom. Mike and I planned a place for her as most expectant parents do. For several weeks we didn’t do anything in fear of what it would feel like if we lost her. And many people mentioned terminations and not going forward. I think they thought we were crazy to prepare her room and to prepare to bring her home. But we did.

We bought a cot, change table and some other things…. put it together and turned our spare room into her room. And now I’ve finished it! I even washed the clothes and put them away (we had been leaving on the tags and keeping receipts). Finally, there is a place for her to come home to. 

So now it’s just a waiting game. Another 8 weeks (maybe less – who knows?) and we will get to meet our little girl and hopefully bring her home!

31 Weeks now…

So it’s been about 11 weeks since the initial diagnosis. Baby Love is growing, but doctors have concerns about her small arms and small legs. Some pretty scary words have been thrown around but we’re hoping that it’s just because we are both small ourselves!

She moves around a lot and is growing at her own pace, although she still falls into the 5th percentile (the lowest) for size. I have another growth scan coming up in a week, so hopefully she is continuing to track along at a steady rate – this is all the doctors are concerned about.

So you may ask what the future looks like for a bub with this rare heart condition (I read a statistic recently that says this condition happens in about 1 in 100 000 live births). Whilst the anatomy of her heart remains the same, she won’t require immediate surgery after birth! This is great news. Doctors say we may be able to take her home until she is about 6-8 weeks old. At this point she may show signs of congestive heart failure! (They say this so casually but good grief!!!) It is then they assess and she will undergo her first open heart surgery – this will be done on a beating heart! Amazing. It’s called Pulmonary Banding and basically means that a band is put around the pulmonary artery to decrease the blood flow to the lungs. It has to be done just right.

After that…. she will undergo what is called the Fontan procedure. This involves more open heart surgeries (I think done on bypass) in the next few years of life.

It’s going to be a hard road for all of us…especially her! But we remain positive and put our faith in a God who works miracles, in whatever shape or form that comes in. We hope and pray everyday that in about 8 weeks we get to meet our baby girl on the ‘outside’ world and get to hold her and see her take her first breaths.