Gaining weight and enjoying being home

Robbie's doing great. Since coming home, 2 weeks ago he's put on 500g (1lbs) and is looking great. I would even go as far as saying that he's looking a bit chunky :0). He's on demand breastfeeding and feeds every 3-4 hours per night. Initially, he was colicky and I was having problems settling him at night. It seems to have gotten better though and he is a lot more relaxed now. I stopped his rinitadine and domperidon for 2 days thinking that he didn't have reflux, same as Alina. However, it's quite obvious that he has silent reflux, so he's back on his meds now.
Last week I took him to hospital after his poos had turned greenish and he had 2 projectile vomits. I was scared that he had reherniated again and wanted to make sure we would spot it earlier than with Alina. However, his xray looks fine, which is great relief.
Alina loves her brother and is always keen to see him when he's awake- unfortunately, not that much at the moment :0). She's helped us change his nappy and likes to give him his medicines. It's going to be great once he gets more interactive.
We really enjoy having our little family together and even though it's only been 2 weeks, it seems that we've been home for much longer. We're looking forward to seeing Robbie grow and seeing Alina and Robbie getting up to mischief in our house :0).
Hugs from the Houchins

Home and thriving

After my last post we got transferred to our local hospital literally the next day. Robbie was doing so well that the only thing left was establishing full breastfeeding. We stayed at East Surrey for 5 days.I asked to be transferred to the paediatric ward as the neonatal didn't seem to know much about CDH 3 years ago when we were there with Alina. It didn't really make a difference, they were as bad. But on the bright side, they left me alone so I could fully concentrate on getting Robbie going. After 5 days we were discharged. What got us home was him putting on 10g!! Can you imagine, 10g! The moment we got home though, he put on 55 in 2 days and then an additional 85 2 days later. It's been a week and 2 days now and he's gained over 250g, more than half a pound, which is fabulous. He's content, feeds well, sleeps well and in general, just a chilled out little man. He's started to look like a baby now, with chubby cheeks and chubby legs. He's still on rinitadine and domperidon for reflux. I actually took him off it for 2 days but I suspect he has silent reflux as it seems he has heartburn and a bit of colic. Hopefully he'll grow out of it soon.
But overall, doing very well and Alina loves having him around. We are very lucky parents of 2 wonderful CDH children :0).

Hugs,

Ingrid, Alex, Alina & Robbie

Feeding

We've been in SCBU for 10 days now. We've even moved from SCBU2 to SCBU1 one night when there was a shortage of staff :-). Robbie is quite settled there, sleeps well and feeds well. He's gained quite a bit of weight, he weighs 2.320kg now. We've been breastfeeding on and off for 1 week. He's doing very well, has the occasional desat but comes back up on his own. I had another chat with Georgina from SALT( Speech and Language Therapy) and decided to try him on cup feeding- didn't work and then on the bottle. He did ok the first 2 feeds but then he desated down to 68, started coughing and vomiting. So they stopped the bottle feed for one night and tried it again the following night. This time it was worse, desated to 48 and needed facial oxygen. After this I decided that I will not torture him anymore. I thought the bottle will get us home quicker but at the end of the day, he is great at breastfeeding and we might as well continue with that. So starting from tomorrow I will stay at Ronald McDonald so I can breast feed him 5 times during the day. When he's ready I will room in with him. So hopefully, if all is ok, we can take him home sometime next week. Keeping fingers crossed.

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.

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