During Charlotte & Marianne's life I kept a diary. This is my own personal thoughts that I wrote down during the 12 days my daughters lived in the Intensive Care Nursery. I started it so I would have a record of how much they were growing, developing and changing. Little did I know it would become a memory of their short and beautiful lives.
I hope by sharing this with you you can have a little glimpse into the amazing lives of my daughters, what I went through having 2 premature babies in the Intensive Care Nusery and the heart-wrenching decisions no parent should ever have to make.
DAY 0 - Sunday 9th November 2008
Charlotte Elizabeth was born at 1.42pm weighing 590gms and 28cm long. One minute later at 1.43pm Marianne Patricia was born weighing 575gms and 30.3cm long.
The girls Apgar scores are
Charlottes amniotic sack was infected so the doctor said he was glad he delivered the girls otherwise Charlotte would definitely not made it past the next day or so.
After a short time in recovery they wheeled me into the nursery to see the girls before going back to my room. They were in humidy cribs and they looked very small, but not as red as I expected.
Later in the evening after sleeping off the effects of the anaesthetic a midwife helped me to express the first few drops of colostrum that would be my girls first food when they were big enough. The midwife and I were both excited that I could get 2ml on the first try.
Had a visit & flowers from my mum & dad. I also got flowers from from Helen & David, David & Jo and Rosemary & Stuart
DAY 1 - Monday 10th November 2008
After trying expressing again and a having a shower we visited the nursery officially for the first time. The girls looked smaller than I remembered from the day before, but they were so beautiful. I am totally besotted with them already.
Both girls have been stable overnight.
They are perfectly formed little people. Their fingers are so long and they have really big feet, with a longer second toe. Chris and I wonder where in the family this is from, as neither of us have this trait.
The girls have not needed too much help. They are both on a ventilator but with only a little added oxygen. We have our camera and my dad has his, so we take lots of photos.
Rodney & Alicia came to visit and bought us 2 cute jumpsuits & a dressing gown from pumpkin patch.
DAY 2 - Tuesday 11th November 2008
I noticed to day that both girls have dark hair, but Marianne's seems a little fairer. Marianne is on a U shaped pillow with her leg splayed over it. She looks so comfortable and peaceful, plus she is sleeping just like her mum!
- is weeing a lot, so is in bigger nappies
- is wearing the tiniest nappies I've ever seen
Had a visit from Alexandra and Dave, they bought a beautiful flower arrangement & 2 little bears.
DAY 3 - Wednesday 12th November 2008
- red blood cell count down so is getting a transfusion
- back to little nappies
- who I now think of as the blissed out one, as she is just lying around looking really comfortable
Had lots of visitors this evening - Cherelle & Jason, Alan & Nicola and Jo. Everyone bought fowers plus Cherelle got us 2 crystal dummies & 2 cute bear decorations. Also got flowers from Rio Tinto & the Coffee Cart team plus Queeensland Ballet.
DAY 4 - Thursday 13th November 2008
My milk came in this morning and I collected 30mls
- heart stopped this morning at 5am. She was given CPR and a shot of adrenalin. She recovered quickly and there seems to be no bad effects and the doctors are happy with her.
- will be getting another transfusion today.
- nose is cute and a little wide like mums!
- has beautiful eyelashes
- has gone up to 1ml of milk every 2 hours
DAY 5 - Friday 14th November 2008
I expressed 45mls of milk this morning. Tried it with both pumps which is so much easier and takes less time.
Both girls had an uneventful night, which is how we like it. Their skin is starting to Keratinise so it is not as red and sticky
Both girls weight is right on target.
- I helped feed her today by holding the syringe of milk
- 1ml of milk every 2 hours
- weighs 540gm today
- stopping her blood pressure meds today so hopefully everyhting will stay stable
- red blood cell count down so is getting a transfusion
- is enjoying her feeds and is up to 2ml every 2 hours
- 530gm today
Got flowers and 2 teady bears from Ian and Felice, also another big arrangement, 2 bears and a whole heap of baby stuff from Sly & Lynne.
DAY 6 - Saturday 15th November 2008
Im going home today and I have to leave my two precious little girls here. It is so unfair that I don't get what everyone else has, when they get to leave with their baby when they go home.
We are going to have such a big party when the girls eventually get to come home next year.
Both girls have a little heart murmur where a big vein between their heart and lungs hasn't closed (this is very common in premmies). The doc will wait and see if it closes by itself, or they need to be given a drug to help, thankfully it is nothing that requires surgery.
- 1.5ml milk every 2 hours
- 3ml milk every 2 hours
- She looks like a little froggy, splayed out on her belly, but as she has no nappy on you can really see that they have no body fat yet. It is a little sad that she doesnt have a bottom yet like full term babies.
DAY 7 - Sunday 16th November 2008
The girls are a week old today and I spent my first night at home without them. We only rang the hospital 4 times, which I think is pretty good!
- She has a blanket covering her today so she looks like a real baby - normally they just have a nappy on
- has developed an infection so they are taking blood for a full culture to treat the bug properly
- will be stopping feeds till her infection is under control
DAY 8 - Monday 17th November 2008
Im very worried about Marianne today - She seems very unsettled. I know she is fighting off this bug, so her little body is having to work so hard. They know they are giving her the correct antibiotis for this type of bug, I just hope it is enough to help her fight it off. I just dont want my dear little girl to suffer.
I am very sad today as everytime I look at Charlotte she seems so content, yet Marianne is kicking around and dosen't seem to be settling. Lucy is saying it is a gram negative bacteria (whatever that is) which can affect her bowel plus cause menengitis. The treatment for all this is the anibiotics she is on, but they will be doing a lumbar puncture on her in a few days to check if it has caused meningitus as she will need to stay on the drugs for a longer period of time.
Marianne is so little, I really hope she can fight this off.
- 3ml milk every 2 hours
- I helped to wash her and change her nappy today. It is funny because I know how to change a nappy but it is different when your baby is so small and has all these lines poking out fromt them, plus doing it sideways through the holes of the isolet.
- her platelets are down so she will be getting a transfusion of them later today
- is getting another IV line - this one in her wrist
later in the day...
Today Marianne is very sick. This really cannot be happening, I want to take 2 beautiful healthy babies home with me in a few months.
I have not slept much and feel like a bit of a robot as eating, showering etc feel like silly little insignificant things that have no meaning. All I want to do is sit next to my girls and be with them.
Oh I can't wait till I can hold them tight in my arms and give them such a big cuddle!
DAY 9 - Tuesday 18th November 2008
Im not sure if Marianne is getting better. I hope she is fighting it off - I just can't cope with the idea of them dying. It just isn't an option.
Her blood results are starting to look better but not as well as they would like. Hopefully over today things will start to improve. Please, please let everything be ok.
I am so scared.
I found out today that both girls blood group is O+ like me.
DAY 10 - Wednesday 19th November 2008
Marianne is still not doing well. She had a scan of her brain and there is a section on her left side that is affected by this stupid bug. They are not sure if it is just a cyst, an infected area or whether a little part of her brain is dead. It is a bit that affects motor skills.
Charlotte also has an infection, so she has been started on the same antibiotics. Both girls need more blood and platelets.
Im not sure how much longer I can cope with this - but boy will I keep fighting for them. They are so small and fragile so Chris and I will be fighting for them, cause we can.
I got to help change Charlottes nappy today, and will also do Mariannes for the second time.
Im not ready to say goodbye yet, I haven't had enough time with them. This afternoon the doctors will be talking with us regarding Marainne's future. Lucy says that even if she pulls through she will probably have problems dues to her brain scan.
I don't want them to suffer, or have any issues, but Id rather have them alive and have a chance because we don't know what the problems might be, or how severe. Having a chance is better than giving up - Im not ready to give up on her just yet.
Charlotte is also very sick, this evening her stats are going down, and the signs are looking like she has the same infection as Marianne. I just hope they can fight this off and make it through.
DAY 11 - Thursday 20th November 2008
Both my girls are very sick. I think the best thing for Charlotte is for me to give her a really big cuddle and let her not have to endure this horrible horrible world. She has been trying so hard to open her eyes lately but now I just want her to keep them closed so she doesn't have to see how ugly this place is. I just want her to know about being loved by her parents, and only have nice memories of being with her sister inside me.
Today at 12.40pm my little angel Charlotte passed away in my arms. Both Chris and I were holding her, kissed her and told her how much we loved her. She looks so peaceful and beautiful.
I got to wash her and dressed her in a little purple jacket my mum had bought. We took her foot prints and got lots of photos. I wrapped her in a blanket made from material from my nanny and another from my mum.
DAY 12 - Friday 21st November 2008
Marianne is very very sick. She is fighting so hard but Im not sure she has much fight left in her. I asked both the girls to let me know if they were happy to still fight - by grabbing onto my little finger with their tiny hands. Marianne has stopped.
I am so scared that I will not be bringing either of my girls home. I don't understand why this is happening to us.
Today at 12.45pm our little miss Marianne became an angel and is togther forever with her sister in our hearts. She was such a fighter and hung around for nearly 45 minutes after the tubes were all disconected.
Our girls were born 1 minute apart and died 1 day apart.
We got lots of photos and even got Charlotte back for a while so we could have some family photos of the four of us. It was really nice being able to have them together, I got to wrap them up together and they will stay together forever.
later in the day...
I really dont know what to do now. I have to organise a funeral for my daughters. Plus we haven't even registered their births yet. How do we deal with this...Getting Their Wings