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She grasped Dan’s finger too. On the evening the Doctors told us she had really improved over the past 36 hours and was looking much better. Great news.


Day 11 - Wednesday 8th October 2008

They have started to reduce some of Sienna’s medication. She is now off both blood pressure medications. Yay! They have started to reduce her nitric oxide (from 20 to 10 today), which is a big thing as she can‘t come off the ventilator until she‘s off the nitric. Sienna‘s respirator rate was decreased aswell, so she is getting less support from the ventilator and using her lungs to breathe a lot more. They took out the catheter today and she did a wee and a poo! (Only a mother would get excited about that!) She is now on half the Midazolam (pain killer/sedative) so she should start to wake up a bit more, although she is still on quite a bit of Morphine. Doctors said she’s tolerated the changes really well but they wont make anymore until tomorrow.


Day 12 - Thursday 9th October 2008

Today they turned down the respirator again. She just wants to get out off this place. She responded really well and hasn’t dropped her stats at all. They turned the nitric oxide down again from 10 to 5, and the midazolam from 1 to .5 which she also coped with really well. Something else very exciting today… Sienna started her breast milk feeds. Only 3ml every two hours through the NGT but that is a great start. My litres of breast milk are finally going to go to use.


Day 13 - Friday 10th October 2008

Overnight they tried to take Sienna of the nitric oxide overnight but she didn’t respond well to it. They got her levels down to 2, but that was as low as she could tolerate. They will try it again in a few days. They turned the respirator down again. It is now almost as low as it can go, so Sienna is now ready to breathe on her own as soon as they can get her off the nitric. They increased her feeds to 5ml every 2 hours today. There wont be any other changes for a few days now. She was very alert today. Opened her eyes for over an hour today. I can’t wait to give her a little cuddle.


Day 14 - Saturday 11th October 2008

For the first time since Sienna has been in hospital the doctor said she was going to be ok. It is such a relief to know she is over the hurdle and improving steadily. We kept waiting for her to go backwards, have a crash but she never did. I am so proud of my little darling. They increased her feeds to 7ml every two hours. They need to get her up to 20ml per hour before they can get her off the lipids and other nutrient supplements. I asked today when they will taker her off the morphine and they said not until she is off the ventilator as it can be really uncomfortable.


Day 15 - Sunday 12th October 2008

Not much of a change today. She is remaining stable and increasing her feeds. She seems to be having more time awake which is lovely for us. Especially when she’s more alert and looking at us. She is so beautiful. Feeds increased from 8ml to 9ml every two hours, but she started to throw up so they dropped then back to 8ml for a while longer.


Day 16 - Monday 13th October 2008

Again, not a great deal of change today. They took Sienna off the morphine and put her Fentanyl. It is a similar drug, but is better over a long period. They also started her on baby panadol to help her when they wean her off the other medication. They reduced the nitric oxide from 10 to 5 and they are going to slowly reduce it down again. They have also started her on Zantac to try and help her reflux.
Day 17 - Tuesday 14th October 2008

We had some good news on the rounds today. The doctors are going to wean Sienna off the nitric tomorrow which would be a huge step. If that is successful it might be off the ventilator on Thursday. There are no promises of course, but the doctors have said she really improved over the past 24 hours.


Day 18 - Wednesday 15th October 2008

Today Sienna was successfully taken off the nitric oxide. She really is a clever little darling. They used the PICU protocol and gave her a stat dose of sildenafil (which is essentially Viagra) and turned the oxygen up to 80%. They slowly weaned the oxygen back down to air and she didn’t drop her stats. She will be taken off the ventilator tomorrow or Friday which is amazing. Can’t wait to see if she makes any little sounds. I am so looking forward to giving my baby a cuddle again. It has been nearly 3 weeks. I hate not being able to cuddle her when she cries her silent little cries. Won’t be long now.


Day 19 - Thursday 16th October 2008

Today unfortunately they didn’t take Sienna off the ventilator. They didn’t want to upset her after her big day coming off the nitric yesterday. Looks like tomorrow is the day. They weaned her fentynal and increased her TPN and feeds.


Day 20 - Friday 17th October 2008

Today was an exciting day and a huge step. Sienna was taken off the ventilator. I got to see her beautiful little mouth without a tube down her throat. She let out a little squeaky cry. It sounded like she had a really sore throat the poor little darling. They put Sienna on CPAP, with prongs up both nose holes which she hated. She cried most of the day, and they eventually put a single tube down her nose which she tolerated much better. I was going to get a cuddle today, but she was a little stressed out because of the CPAP so I will have to wait until tomorrow. She settled later that night as she got used to the CPAP. The CPAP is set at 11. She is also off the midazalam today, but put her on chloral to reduce discomfort from the CPAP. It was awful to hear her crying all day, but nice to finally hear her make noises.


Day 21 - Saturday 18th October 2008

They increased her feeds and turned down the CPAP. But, the biggest news today… I got to have my first cuddle in three weeks. She just snuggled up in my arms and looked so peaceful. She fell asleep just lying there, I never wanted to let her go. I felt like a real mummy again. I am so grateful that I got to have a cuddle when Sienna was born as it would have been so hard to get through all this time without holding her.


Day 22 - Sunday 19th October 2008

Today they halved the dose of prostin, and the doctors plan to remove it tomorrow if Sienna’s saturation levels stay close. The CPAP was turned down from 8 to 7 and feeds were increased to 15ml per hour. They removed the liquid fats, and reduced her Chloral dose to twice daily. Everyday we seem to be getting closer and closer to going home which is fantastic. Sienna is such a strong little girl. I really am so proud of her.

Day 23 - Monday 20th October 2008

Today Sienna’s feeds were increased to 17ml per hour and her fentynal dose was halved. The prostin was turned off without any problems indicting that her pulmonary hypertension has disappeared. This is an absolutely fantastic result. CPAP stayed on 7 today.


Day 24 - Tuesday 21st October 2008

Today the CPAP was turned down to 6 where it will stay for 48 hours. If everything is fine after that she will be fully extubated. I really can wait to see her little face free of tubes and tape. Feeds were increased to 20ml per hour by midnight.


Day 25 - Wednesday 22nd October 2008

No real change today. They change to feels to 40ml every two hours. CPAP is still on 6. No change to the Fentynal. Maybe it will be off tomorrow. We are expecting the CPAP will come off on Friday… can’t wait!!!


Day 26 - Thursday 23rd October 2008

The doctors surprised us and said that they will take Sienna off the CPAP today. Such exciting news as we were expecting it to happen tomorrow. They said she’s doing great so there is no reason she needs to stay on it. Sienna coped with no problems off CPAP. They monitored her fairly closely for a few hours but there were no drops in her stats at all. My little girl just has to learn to feed and we can go home. Easier said then done though. Another first for Sienna today. She had her first bath. She wasn’t too sure about it and had a little cry, but still it was a great milestone. They put Sienna in a big girl cot in preparation for a move out of the ICU and into a special care nursery. Very exciting. Now I can pick her up whenever I like. If she is sad I can give her a cuddle...


Day 27 - Friday 24th October 2008

Out of the ICU today!! We moved next door to room 2. One step closer to the door and one step closer to home. Also, I got to try Sienna at breastfeeding. She’d been sucking the dummy since she’d been on CPAP so we were hopeful she’d take to the breast. She did have a little suck for a few moments… It was just wonderful. She got tired very quickly though and got a bit distressed. We’ll have to build up her feed times. She was weighed today, and they will keep a close eye on her weight gain now to make sure she’s gaining weight with breast feeds. What a great day!


Day 28 - Saturday 25th October 2008

Now that Sienna is in the special care nursery we can look after her mostly ourselves. Change her nappies, give her a wash. We really just want to get home now. Have been living at the hospital now for a month. Living off canteen and pub food. The end is in sight. Hopefully we can get Sienna home without needing the NG tube. We are still trying the breastfeeding. She doesn’t have much stamina and falls asleep on the breast most times. She is still having most her food through the NG tube, but I try her on the breast a couple of times through the day. We also tried her on a bottle today and she had about 20ml so that’s a good start. At least she still has the desire to suck.





Day 29 - Sunday 26th October 2008

Just focusing on the feeding today. Trying to get Sienna to feed for longer and I feel that she’s making progress. I don’t think we’ve got the attachment quite right, or maybe I’m just getting used to it… The surgeons popped around to check up on Sienna. Said something interesting. It was mentioned that Sienna had done really well, with no real backwards steps which is often expected with CDH. He said however the only moment was when she got the infection after the op. I did not know about that! Obviously staff did not want to worry us. I remember her being on Antibiotics, but I thought that was just a precaution post op. Apparently the ‘presumed septis’ cleared up without too much trouble. Thank Goodness!!!


Day 30 - Monday 27th October 2008

More of the same. Sienna is doing really well, having a couple of breastfeeds a day. She’s still getting topped up with the NG tube as she doesn’t feed for that long. Now I feel like up is up to me to get us out of here, so there is a bit of pressure to get the breastfeeding right. I’m a bit stressed that it still hurts a little. I’m not sure if it is the attachment or whether it is me getting used to this. Lactation consultant is in again on Wednesday so I’ll make sure she helps.


Day 31 - Tuesday 28th October 2008

Today Sienna is going to be breastfed for all of her day feeds, and only fed with the NG tube at night. They’ll check for weight gains to know whether she’s getting enough milk. I think the feeding is going ok. Fingers crossed.


Day 32 - Wednesday 29th October 2008

We continued with the breastfeeding all day. The doctors have told us we could take Sienna for a trip in the pram, so we took her down the cafeteria for a coffee… Almost felt like we were free of the place, to be able to take Sienna away from the doctors and nurses and the hospital room.


Day 33 - Thursday 30th October 2008

Sienna was weighed today and has put on weight over the past to days with me breastfeeding during the day so the NG tube was removed today and I will give her all her feeds over 24 hours. It is lovely to see Sienna’s beautiful little face without any tubes. She’ll have another weigh in tomorrow morning and see how she’s gone. If it all goes well we may be off to medi-hotel! Fingers crossed.


Day 34 - Friday 31st October 2008

So tired today. I sat with Sienna until her 2am feed, then got a call at 6am and then 9am for those feeds so not much sleep. Great news though… Sienna has put on 62 grams overnight so we are moving out of her room and up to the medi-hotel today. I‘m so relieved that she is feeding well enough. The medi-hotel is a room up on the 5th floor of the hotel where we stay, and have Sienna with us. It is also goodbye to the Ronald McDonald house. As great as it is to have that facility so close, I will be glad to see the end of that little shoebox room, and Dan will be glad to not have to sleep on the floor! We can stay at medi-hotel as long as we think we need to, and if Sienna continues to put on weight we can go home in a few days.





Day 35 - Saturday 1st November 2008

Great news, another weight gain last night. Mum ended up staying with us last night so it was good to have that support. We might be able to go home tomorrow if everything is ok tomorrow. I can’t wait. The breastfeeding is going ok, but still getting some pain. Dan’s cousin Megan (who is a lactation consultant) thinks Sienna has tongue tie, which can cause nipple soreness. Other then that Sienna is attaching well, so if I continue to feel pain I’ll have to get it checked out. It isn’t bad enough to cause speech problems or anything, only issues with breast feeding.


Day 36 - Sunday 2nd November 2008

Today Sienna didn’t put on weight, she actually lost 4 grams but the Doctor has said that that is ok, and that we can go home. I can’t believe this experience is over and we can finally be a real family at home. Will almost be strange to leave all the staff. The nurses especially are amazing. Martina (her first nurse) was back from holidays today. She couldn’t believe her progress. Everyone has said how amazing Sienna has done. I’m so proud of my little one. So happy to be able to take her home.