GOSH part two made my dreams come true!

Going to gosh again felt very bizarre. The first time Rosie arrived via ambulance and felt like she belonged to the hospital. This time she came with me and she felt like my baby.

We went in feeling like we packed for a 2 week holiday with the amount of things we brought, but most of that was Roslyn's gear. Suction machine, suction catheters, her medications. A whole small suitcase filled with the towels we roll up to keep her on her side. Out of the 4 or 5 bags we bought only one was filled with mummy and daddy's clothes!

Once there Roslyn was weighed and measured. At 13.5 weeks she is 65cm tall and weighed 6.285 kg... 75th centile for weight and 99th for height... She is a big girl and everybody mentions that when they see her!

She was measured for her new NPA size and as we guessed her current one was MUCH too small. She was measured to be 8.25cm and she had 7cm which they let us increase to 7.5cm after we made a fuss about her discomfort. It was satisfying to find out we know her well and the fuss we made the past few weeks wasn't for nothing, but also upsetting that she wasn't able to have her sleep study brought forward or for them to arrange x rays / measurement at our local hospital in the interim to ensure she is comfortable and that her nasal airway was doing it's job. Clearly, it wasn't for some time.

While they took out her NPA to remeasure it, they also took out her NG to inspect if they could switch nostrils and the tubes around to give each side a break. They saw her left nostril had a much smaller airway then the right, so the NPA would need to stay in the same side. Apparently, this is the case for about 50% of the kiddos with an NPA and doesn't cause any long term tissue damage etc so it wasn't a problem. The nice thing about this though is as both tubes were out my husband and I got to see our daughter's face in full for the first time (other than the few minutes she was held in front of me after birth). I cried. She is so beautiful <3

 

Before going to gosh we were clear in that we wanted Rosie tested without her NPA for the following reasons:

1. Roslyn never had gosh analyze her without an NPA - only Colchester hospital have done so and they are not set up to do sleep studies on children/babies. They only measure oxygen desaturations during sleep and that is it. Whereas gosh measures other parameters (shown below). Her first sleep study at gosh was fully with her measured NPA in and I wanted to know what she was like without with the extra measurements to see if/how much she is improving. 

2. Roslyn is a big girl and bigger than the average 3 month old. Therefore, her airway will be opened more than the average sized 3 month old. 

3. Roslyn has had it out in the day a few times and her breathing didn't sound obstructed even when she was napping. 

Once we got to gosh it kept being said that the plan was not to do a split study (with and without her NPA) as she was only 3 months and they didn't feel she could be ready they. They wanted to do the sleep study fully with when she had her new sized NPA in and next time in another 6-8 weeks they would do a follow up sleep study and do it split. A specialist nurse said the NPA usually doesn't come out until 6-8 months in PRS babies (contradicting the repository consultant who said it's usually 4-5 months...). So I felt a bit deflated. 

We kept saying to different people how we insisted they do it split and we were happy for them to reinsert the NPA during the part without if she showed obstruction signs. It was agreed in the end for the study to be split with and without an NPA but it really felt like they didn't want to.

At about 8/9ish Rosie was set up in bed and they put the sensors on and the night began! Sensors and wires everywhere but she slept like an angel the whole night. She was such a good girl. I must say - nappy changes were not fun with the wires everywhere!

 While Rosie slept all comfy me and my husband did not. We had one riser recliner that laid out to be a "bed" (a very uncomfy one!) and one plastic chair between us. We took turns on the "bed" but neither of us managed to sleep.

Rosie had her study with her NPA from 9pm until about 2 am. She then had it out from 2am until the study was over at 7am. Every minute without the NPA I felt on the edge of my seat expecting them coming to put it back in... but every minute passed and they didn't. 

After the study concluded - they left her without her NPA and because of that I started feeling really hopeful. Surely, if her breathing wasn't okay without it they wouldn't have unhooked her from the sensors after it finished and leave her without while we waited to hear the verdict form the consultants.

After a 4 hours wait the consultant came around and told us that Roslyn did a lot better than they had thought. They were surprised with how well she was breathing on her own without the NPA t 3 months. So well in fact, that she did not need her NPA anymore and they were happy to send us home without it... I was not expecting that. i had hoped for it. But I did not expect it. I felt like I was in a dream and couldn't believe it was true... my baby girl doesn't need her airway anymore. No more weekly changes. No more nasal saline drops. No more suction machine. Now I get to kiss her cheek everyday <3

She is half way to wireless. NPA out - next stop NG - we are coming for you!

Photo showing us on the way to gosh w/ NPA vs on the way back with a bare right cheek! The difference 24 hours makes