Thursday, 15 March 2012

Our trip to Special Care-SCBU

Monday, March 12th: Robbie is still doing well and breathing air. Yesterday the doctors decided to put him on breast milk fortifier or bmf to help him gain weight. Because of his lungs they cannot increase the amount of milk he receives but he needs to be bigger to help with his breathing. So it's a catch 22. Hopefully in a few days we should see an improvement. 
We've tried bottle feeding for the first time- it didn't go so well. Poor Robbie, when I put the bottle in he was like : " now what"; the he started sucking and had a major desaturation because he had stopped breathing. The main problem with cdh babies is being able to coordinate swallowing/sucking and breathing. Well, we couldn't; we needed some oxygen and it took us a good 6 hours to recover. The speech & language therapist will be back tomorrow and we'll see if we can try again. In the meantime, the dummy which Robbie wasn't so fussed about has become his best friend :0).
Tuesday, March 13th: The doctors have decided to give Robbie a break re feeding. They will continue to feed him through his ng tube and probably start him on 2 hourly feeds but no more bottle for a while. Yesterday was a big setback for him. I took him out for a cuddle and he desaturated so he's back on oxygen. He's basically exhausted. On the plus side, he has gained 50g overnight and now weighs 1.960. Now Alina's fallen ill again so have to rush home early.
Wednesday, March 14th: On 2 hourly feeds- not sure how that's going to go.
Thursday, March 15th: 2 hourly feeds going well though it's not enough. He weighs only 2kg, his birth weight and he's over 1 month old. The plan is to bulk him up, he's going to go from 1/2 fortifier in his milk to full fortifier and i also need to provide my hindmilk. It's a hard one because they cannot increase his milk quantity because he will use up too much energy to digest it and he's already using too much energy breathing. Hopefully this new plan should help because i can tell you for a fact, my little boy is desperate for more food.




Thursday evening: Alex just called, we've been transferred to SCBU!! One more step closer to home.

Saturday, 10 March 2012

This morning Robbie's cpap was taken off to see how he can cope. The nurse left him in the incubator with 33% oxygen which she reduced to 23% by the time I got there, an hour later. It was great to give him a cuddle without the tube though at one point we had to put the oxygen mask on. His stats overall when I held him were not brilliant, in the low 90s and when he started desaturating to the 80s I put him back in as I  didn't want him to get tired. He was back to 98-100% straight away and within an hour the oxygen in his incubator was reduced to 21%, which is air. We are so thrilled with his progress. Just like Alina, he continues to amaze us. The talk is that he'll be put in an open cot soon and hopefully we'll be moved to the next room, hdu, or even special care. Home is surely in sight now, though we still need to tacle feeding. Robbie is one month old today, which makes it even more special. 
 
    Lots of hugs, the Houchins