GIAANS DIARY

I joined this site in late August 2007. Now, we are 8 months down the line ... through the last 8 months ive been through things i never thought or imagined would happen. Our twins were delivered extremely premature. Our daughter Mia passed away inutero during the second trimester due to severe HLHS and our son Giaan completely stopped growing at around 26 weeks gestation, soon after i delivered them both. He has now been living in NICU for 5 months.

Ive moved all of our updates to the 'blogs area' to free up some space on my profile page. Please feel free to read my blogs and get in touch, id love to be able to offer support to other women going through similar circumstances, or chat with mami's with preemie babies with IUGR, BPD/CLD and heart defects.

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THE COMING HOME ISSUE (written in mid March)

(people keep asking so i thought id write up to avoid repeating myself)

'Normal' preemies are expected to come home from hosp on their due date, however here they are allowed to come home when they reach 37 weeks gestation. They have to be able to feed, breathe and keep their temp up without assistance - this is usually achieved around 35 weeks, depending on the gestation at birth. Because Giaan had IUGR that added a few weeks extra hospital time. For a long time i held onto these expectations. However having a preemie is extremely unpredictable. Due to infection and RDS Giaan has needed extended time on the ventilator and as a result he developed BPD/CLD. This chronic lung disease means he has very bad scarring on his lungs. The sad thing about CLD is that it is caused and worsened by mechanical ventilation, however due to the damage on his lungs he needed the vent to keep him alive. As you can see it is catch 22, and a very difficult cycle to break out of. It took me a long time to appreciate the severity of Giaans multiple heart defects, im thankful to say he has a wonderful cardio team and he's made it through several surgeries. When i first came home from hospital i could never have imagined we would go through all of this!

In Feb Giaan spent time on a heart/lung bypass machine, this took the blood out of his body and the machine worked his blood externally as an artifical heart & lungs. This was the scariest time of my life, the issue for us hasnt been about coming home, its been whether he would be alive over the next 24/48hours. During this time the consultants told me his lungs were too scarred for him to survive. Then 3 weeks ago they said he was getting strong enough to have a tube placed through his tummy and throat to keep him functioning enough to get home. I held off on those surgeries, and all of a sudden he is doing really well all by himself! He really is a miracle! Its such a rollercoaster, going from waiting to say our goodbyes - to wondering when we will be home! Im too scared to estimate when he could come home, but if he keeps going like this i think he could come home on oxygen and a heart monitor within 2-3 weeks! Im scared to dream of this, but i have faith in my soljah :)

http://justgiving.com/preciouspreemies

Just Giving.com is a charitable site. It allows you to anonomously and safely donate money. Once you donate the money it sends is STRAIGHT on to the charity, and in NO way benefits anyone else, but 100% to the charity. I have set this page up in memory of our babies who went to heaven too soon. The charity (Bliss) works to prevent premature birth and problems in pregnancy. The work that Bliss do has let Giaan live, without them i would not have had the information, support or even my son here with us today.

Many of you read my story and send messages of support, but could you please find it in your heart to TRULY help, people just like Giaan and I. There are thousands of parents praying by their babies incubator or even attending their preemies funeral RIGHT NOW. Please can you think about them, and about how blessed you are to be having a healthy pregnancy or how blessed you are to have your own children. Im asking all of you if you can donate £2!! (its the minimum the charity accepts). Thats like $3 i think. It will make no difference at all to you, but it will help to save another families baby, their hopes, their future and their family. Thank you!!! Giaan & I x x

(Bliss is like the UK 'version' of March of Dimes, through this site it means US mommies can help to support us too!

MAY UPDATES

Firstly, i cannot believe it is May already! I hope everyone is enjoying the summer coming out to play with their babies and having lots of fun times and making beautiful memories . . .

MAY 5^th: Saw the consultant today, talked through things and proceeded with Giaan’s surgery. Spent the night in the hospital.

MAY 8^th: Giaan’s had the op and I got to spend 2 nights in the hospital with him. So, its official, Giaan is no longer allowed any oral feeds L. The doctors decided that the chronic bronchitis/swollen inflamed bronchioles was due to reflux (he tried 2 meds, neither of which worked particularly well or helped enough) and aspirations. Because G has limited healthy lung tissue its really important that the non scarred tissue is kept healthy. So he will now receive all of his feeds directly through and into his tummy. This has been a real struggle for me, I’ve been desperately avoiding him having anymore surgery. During his heart ops I was so afraid of losing him, and afterwards they really took a toll on Giaan (and us). Even the heart catheterisations set him back for days/weeks and it took him a while to get strong again.

Part of me is feeling like this is a step back for us, that we aren’t making progress or going anywhere towards getting ‘better’ and/or healthy. However, I am trusting the docs experience on this and praying that this is the right thing for Giaan. I do understand that this will give his lungs a good break to heal, and that is incredibly important for both lung function and to prevent any more pressure on his poorly heart. I'm scared of what the future holds now, I’ve heard many stories of toddlers and even young kids that refuse to eat after becoming so used to gastric feeding. Gigi was developing an oral aversion with the bottle and nurses, so this may push him even further from being able to eat ‘normally’. I've heard the worst things about feeding programmes etc, and I'm praying to God that we never have to battle through any of that. I think it hurts the most because despite his dislike/fear of other things, he was a really efficient and keen breast feeder. It was a soothing and comforting experience for us both and I'm devastated and incredibly emotional that we have lost that. I'm working hard on convincing myself that this is only a temporary thing which will let him heal. I'm still crying like a baby every time I think about it. I guess this whole thing has made me realise how precious breastfeeding is (especially with a preemie, when you are able to do little else to bond and comfort your baby), I persevered through physical and emotional pain, through 5 months of pumping. This has been quite a blow, talk about getting kicked when you are down. But I need to continue to take things one day at a time and enjoy being there for my prince. I need to stay positive that this is a helpful thing that will help Giaan to feel better. This was one of our last options in helping Giaan to get well enough to make it to his next procedure at 16lbs and then come home. Please pray that this will go well and help us enough to get home soon.

MAY 10TH: A weaning pack arrived in the mail for Giaan today. Well it had me in tears all day long! It had a bowl, spoons, various packets of food and lots of coupons. It just hit me soo hard that this where we should be at right now, but instead our lil man cannot eat at all. It really broke my heart and left me so emotional all day long. It was really rubbing it in my face, especially given that im having such a hard time adjusting and giving up with breastfeeding and everything, this was just the worst thing that could have landed on my front door (literally!). It was like some sick joke. Im still feeling pretty sensitive about it, but just keeping faith that this will not be for long, and that its just what is best for Giaan right now.

MAY 13TH; We are doing ok, things have been difficult with papi since his attempted murder. His car was attacked a few days ago and the dude was threatening to pull a knife, the whole thing just really freaked him out. We finally had a quick catch up in bed the other night and he told me what happened and why hes stressing. [bloody car lights are smashed and the door is broken :( ] The fact the car is brand new really pushed him on edge. As per usual he has been taking all his troubles out on me, no matter how hard i try or what i do.

Hes had he caring moments with me, i just wish they would last longer. Its nice hes been popping by randomly to check on me, but he is never there to comfort me when i really need it. For example; Today i was so upset. Ive been missing Giaan terribly all evening, im sick just now so i havent been able to spend much time with him. Im just so desperate to have him here beside me in bed, the pain of being apart from him is consuming me. Not being able to feed him im really missing the bonding and closeness, i just felt this desperate need and wish to be in hospital to feed him and i knew i couldnt.. it really hurts. Ontop of that im very anxious, exhausted, sick and sore, so this led to me having a minor panic attack. I wanted papi to come to me, hold me and look after me. But oh no, he couldnt be there for me, everything else was more important.

MAY 14TH; Its so hard for us both not having G home with us, he doesnt really understand all the medical stuff like i do, so he doesnt really get where we are at so much. Im usually so tired by the time im home that i dont have the strength to go through everything in a logical manner, im more just able to blurt some things out through my tears - and i know that makes things worse for us and pushes papi away. He's kind of on hold until G is home, in some aspects that's very much the way i used to be aswel... I used to say 'once Giaan is home we will go here or buy this or do that. However, i realised that we cant wait for home comming to do 'this' or 'that', we have to live as a family and enjoy our life in hospital NOW. I think in a way it was so hard because it felt almost like accepting defeat. I know CJ is scared of falling in love with Giaan only to lose him, i would give anything in the world to be able to take that doubt and pain away, to be able to ensure that G will come home and live a long and happy life. CJ has had enough loss in his life, and i cant bare the thought of not being able to protect him from losing our son. BUT, Giaan needs all the love and support that we can give him, and he needs it now - not in the future. Things change and we need to enjoy everything we do have, not what we want in the future.

(lil reminder of our site, www.justgiving.com/preciouspreemies)

MAY 15TH: Another teary evening for me, papi didnt come home tonight. Of course im paranoid hes cheating or that he just doesnt love us! In reality he is probably just to thoughtless to call and say he was staying at the inlaws before he actually went to sleep, leaving me waiting up all night like an idiot! Its 3.30am and im tired! Im so emotional these days and im struggling with everything. For a while i was doing ok and accepting (and expecting) Gigi to be in hosp for quite a while longer, however the last few days ive been getting so upset and frustrated with not being able to bring him home with me. I just want to have him in our home, to be alone to huggle him, just the two of us without all the monitors/nurses etc. Not much else to say really, just feeling hopeless, alone and down about everything. Ive got medical app for myself tomorrow, i cant even be bothered to go as im just so tired. It wouldve been nice of papi to offer to drive me and then spend the time with us in hosp, you know, to make things easier for me - of course he is to selfish to do that!! You wouldnt believe with the health problems i already have, he still doesnt care to help me so that i can be there for G :(

MAY 16TH: Ugh i hate DH sometimes, he didnt come home last night but is acting like he did nothing wrong! I really cant take his sht just now at all, im going through far too much already to have a loser hubby wasting my time and energy. I feel so bad :( He obviously thinks i am really stupid, but i know what his dirty cheating ass is up to, and it makes me SICK! Anyway, i left the hospital today to go to my own hosp appointment - and the b@strds cancelled without even telling me!! So i left my poor baby alone in hospital for NO reason at all, really i am so pissd off and tired today. Its times like this i wish i could just take Giaan from hospital and run away, just the two of us! Nice to dream eh!!

MAY 18TH: I soo need a massage right now, my shoulders are killing me from looking down at G all day lol. Hes got a high temp today, but dont know why :( He was pretty uncomfortable n not very happy, poor bunny, i dont know whats wrong with him :( Praying that it goes away and hes feeling better by morning, otherwise il have to go into hosp during the night as i cant stand him being ill and alone. Ugh this stress never ends does it?!