Saturday, February 26, 2011


Today is a year since Summer died aged 9 1/2 months old, and to mark this I have attached some photos and a couple of videos of her to remind everyone how beautiful and special she was.....

Summer was born at 25 weeks

She loved kangaroo care

She loved being held

She didnt like being messed with !!

Summy made it off the vent and did well till RSV struck her and Skye

Summer and Skye

Summer battled and won against terrible odds

Thanksgiving 2009

Our daily chat

Summer comes home!!!

A sleeping beauty. She died unexpectedly a few hours later....

Here are some video shorts of Summy 'in action' I had so many pictures and videos it was hard to choose

                         She loved her pacifier. After she was trached she had it in day and night.

                                  She loved to get out and look around at what was going on !

                             But most of all she loved lollipops and sweeties syrup!!

Friday, February 25, 2011


So things have been very quiet which I'm not complaining about!!! Erin came to visit the babies and as usual they had a great time and she took some fantastic photos of the babies which I will share - I think she will now be the babies' official photographer!!

Today we had the pulmonology appointment and Henley's weight was a great big 28lb 7oz but I was disappointed that Skye was only 23lb 1oz, same as last month. This is the first month she has been eating by mouth and she did not put on any weight!! Usually every 3 months GI increase her pediasure amount but the last visit they told me to keep it the same which I thought was strange. As she has eaten food by mouth and not increased her weight, I will increase it myself at least till her next weight check. here are a few photos of the babies after some cake!!

Saturday, February 19, 2011

Lots of babies !!

This week we were visited by my friend April and her triplets again and this time I took some photos!!! We took the babies to the park in my subdivision and then we stayed at home, gave them baths etc and as always they had lots of fun!! This week we have 2 more visits from nurses we met along our NICU and home care journey and that keep in touch - the babies always love the attention and of course I love to hear how big they look!! Friday is also pulmonology day so I will be able to report on their weights !!!

Till then here are our latest photos!!

This is typical Henley, Skye doesnt stand a chance poor baby

Henley helps to clean the floor!!!

Thursday, February 10, 2011

Photos and Videos !!!

Finally, as promised are some photos and video updates on the babies!!!!

 No doctors visits since the trach visit last week, so we are all quiet now until the pulmonologist at the end of the month. We only have 2 synagis appointments left... the end of an era!!! I guess they will still want to see Skye on a regular basis as she still has a daily breathing treatment, but its progress !

Skye has not been a superstar on the feeding front, and she hates being spoon fed. She will however eat if you give her food, walk away and ignore her (if she's hungry). She will eat beans (like chili beans) fries, rice balls, BBQ chips and chicken. She will also drink pediasure only if it is squirted into her mouth. We are still waiting for the ST consult, maybe they will have some more ideas???

Here are the latest pics

Playing in the garden with daddy

cute updo

Action man

big hair !!

Playing with the curtains

Henley's first (unsuccessful) baseball lesson (he just wants to RUN RUN RUN)

The acrobat

Thursday, February 3, 2011


So now you are all over the shock of preschool, I can update you on today's visit to the school. Its a Montessori school where they actually teach the kids, and there are a maximum of 6 kids in each class. Henley went in this morning for an hour to meet his classmates and so we could find out more.

They were very good about the whole germ issue and they do disinfect everything each night, and of course class sizes are small (Henley will make 5 in the class). They also told me if there was anything else I wanted them to do they would try to accommodate my requests, so I couldnt really ask for more.

Henley LOVED it. He ran around, jumped on all the toys (they have playmats, roundabouts, lots of stuff) and interacted with the others. He did take a toy off another boy, but the teacher took it back and told him the other boy was still playing with it, and Henley was like 'ok' and went and played with something else. I also like that they have a toddler playground outside with some really great fun but safe equipment and each morning they play outside for an hour before it gets too hot. They they have a snack, then they do 'schoolwork' till 11.30. That is Henley's finish time and he would go twice a week.

The upshot of all of this is that we will enroll him and he can start in April (end of RSV season). When it was time to leave he didnt want to go and I had to carry him out as he refused to walk so I know he will be fine......

Ok, next post will include photos I PROMISE!!!!

Wednesday, February 2, 2011

Trach Doctor

Continuing with our theme of Dr appointments, today we had Skye's 3 month visit to the ENT Doctor, which is never a big deal, he just checks she's doing good and has a quick look down the trach. Everything looked fine as usual so he will see her again early May and we can then schedule another bronchoscopy with (again) a view to removing the trach if all looks ok. He reminded us that she looked really tight last time but he's hoping the dilation he did to her trachea at the time will have helped widen it.... we will see. When she cries, I can still hear a kind of 'stridor' noise when she inhales which was how this all started so who knows....

Tomorrow (you will all be shocked) we are taking Henley to see a pre-school!!! He is seriously bored at home and he just needs play more/run around etc to release some of his crazy energy so although I have a lot of reservations about this, I've started to investigate our options. The babies have had their flu shots, are still getting synagis and I would wait another month to enroll him so that the worst of the cold/flu season will be done with. The hours are only 3 hours a day twice a week, but I think it will be enough for him!!!

....Feeding Update........... Since my last post, things went downhill for a few days and Skye decided she didnt like the whole eating deal anymore. The last 2 days I have done something new and so far so good. I let her mess around and play eat in the mornings (which is what she usually does) i.e she puts food in her own mouth  and lets it fall out or chews it then spits it out, but in the afternoon I skip her 3pm tube feed then I feed her by mouth at 6pm. So far she has been genuinely hungry by then so she has been eating. I also spoon feed her easy foods like mash/mashed sweet potatoes not letting her pick up and mess with the food. She has also been drinking pediasure if I squirt it into her mouth and she seems to like it. Afterwards I feed her half of her scheduled tube feed and then throughout the evening and till I go to bed, I just keep putting another 60mls through her tube (I only feed using a syringe, never a pump) untill she has meade up the feeds I witheld earlier in the day, so she's not losing any calories. its a work in progress....