A big week!

I can't believe a week ago today I was waiting anxiously to see if Ash would come home. It seems so long ago now and we are right into the swing of life with a little baby. Ashwin continued to be really unsettled and actually got worse and worse to the point we couldn't put him down at all day or night and he was crying a lot and seemed in pain. Finally Thursday night I rang the hospital only to be told 'oh yes, he was always very unsettled especially at night, we had to spend a lot of time holding him.' Part of me was angry they hadn't bothered to mention this to me when I was taking him home (when he was in hospital and I asked how his night was the most they'd say was that he'd been a little unsettled at one point). Also I was annoyed they hadn't looked into it further - I know babies can be unsettled, and some sleep less than others, but to the extent you can't put them down for most of the night when I had warned them about Taj's severe silent reflux and the strong family history of it means Ash was in unnecessary pain.

Friday morning I went first to the Early Childhood Health Nurse to have Ash weighed and he'd put on 60grams in 4 days which I was really happy with as he'd been drinking only from the breast the entire time, crying a lot and hardly sleeping. Then we went straight to a doctor and she could see immediately he was in pain and as we both watched him we could see him refluxing (a kind of burping action, grimacing, and a mouthing action like something had come into his mouth - silent reflux where the acid comes up and then is swallowed back down, different to reflux where they are bringing up a lot of milk). Knowing how important for Ashwin and his weight gains it was to get on top of this quickly she rang around and found a compounding chemist who had some Losec available for me and within an hour he had his first dose. A couple of hours later and he had his first sound sleep in days. He fed better with none of the squirming and whimpering the hospital had dismissed as wind. It takes 48hours for any consistent improvement and around 2 weeks for full impact.

He slept well last night, waking twice for a feed and only wouldn't settle after the 4.30am one. He's sound asleep now too so I've been able to get on top of the house work and get washing sorted. I'm so glad the doctor listened to me and got him onto Losec straight away instead of taking the 'wait and see' approach I went through with Taj. We are getting occasional smiles (I'm sure he's going to have dimples) and yesterday he rolled from his tummy to his back. I thought it must have been a fluke so put him back on his tummy (he wasn't impressed!) and he rolled straight to his back again. He'd be 39 weeks gestation today, or his actual age is 5 1/2 weeks.

He's home!

We've been so preoccupied with our little man that I forgot to update! I couldn't sleep Sunday night I was so nervous that he wouldn't make the weight needed that I ended up ringing at 3am Monday morning to find he'd made it over the line by 12grams, making him 2012grams. It didn't take long once we got there to get all his paperwork together and we finally walked out of there with our beautiful baby boy. It was such a strange moment to have him with us with no nurses or doctors to tell us what we could or couldn't do. He did well initially having a couple of sleeps and feeding well however spent most of his first night home awake, crying or feeding. It will take a couple of days for the feeding to be sorted and my supply to adjust (I have an oversupply) and then hopefully things settle down. Jai and Taj are smitten with him and loving that I don't have to go up to the hospital every day now. They want me to take him to their school and daycare to show him off but for the first week I'm getting help with school drop off and pickup while we settle in.

He will still need follow up eye tests, hip ultrasound and brain ultrasound. He's on Pentavite and an Iron supplement and will follow up with the paediatrician he was under at the hospital as well as having an Early Childhood Health nurse out to visit (same protocol as when you go home with a full term baby) and I'll go to the clinic to have him weighed weekly. I'll try to post photos tomorrow when hopefully I would have had a little more than 2 hours sleep!

Holding our breath

Ash didn't end up getting weighed Saturday night - they weighed him Saturday morning and he was only 1974gms. We spent the day figuring out some feeding issues and I'm confident he'll do better when he comes home now we have a plan. He'll be weighed again tonight so we have everything crossed and are holding our breath hoping desperately that he comes home tomorrow. That tiny last 26grams seems such a huge hurdle right now. It's very frustrating when in all regards he's healthy, feeding well and has been having good gains. The last couple of days the SCN was very busy with a couple of babies under lights for jaundice and 2 others being monitored. The bright lights from the UV lamps and the beeps from all the monitors and alarms going off just made me want to grab Ashwin and run. He's spent a whole month now in this environment and it's time for him to be home and breathe fresh air for the first time and hear the noises of normal family life instead of monitors and alarms.

Just a quick one...

A very quick update - we saw the doctor this morning and got a clean bill of health for the boys and I so I'm heading up to the hospital now to spend the day with Ash. Also with his weigh in last night he gained 58grams, so he's now 1962grams - so close! We're hoping to get them to weigh him again Saturday night (instead of waiting till Sunday) so that we can bring him home on Sunday. Home stretch!! Then the real fun begins of having a tiny baby at home feeding round the clock - I didn't set my alarm to wake up and express last night as my supply is still a good 200mls ahead of what he takes so I thought I would enjoy one last chance at a full nights sleep.

Confusing times!

All this week I've been staying away from the hospital it's been self-imposed, I chose not to risk exposing Ashwin to Hand, Foot and Mouth disease. The nurses knew how much I was missing him so the Nursing Unit Manager (NUM) said I could visit if I wear a gown and mask. Jai's last ulcer is just about healed up anyway so I was going to start visiting from tomorrow again anyway but was happy that I'd be able to spend some time with Ash tonight too. An hour or so later I got another call to say the Paediatric Registrar had been around and decided I'm not allowed to visit the nursery until the boys and I get clearance from a GP, and added to my notes "mother not allowed to visit" so now it was official, not even a quick peek at him when I drop off my milk, I was banned from the nursery. The nurses were upset for me and had strongly objected and supported me but been unable to change the doctors mind.

Another couple of hours later and one of the nurses I get on very well with called back to say when the NUM found out what had happened she went above the Paediatricians head to a consultant and they supported her plan of allowing me to visit if I wear a gown, mask and gloves. There was no indication though of when I'd be able to visit without these measures and feed him again.

So as things stand now I'll visit him tonight with the gown etc, and I made an appointment for Jai, Taj and I at the gp tomorrow to get clearance so that I'll be able to feed him again. I also want the clearance put in Ashwin's file to cover the NUM that went out of her way to advocate for me. It all seems very strange that I have all these other people deciding whether I can see, touch or feed my own baby and makes me even more eager to get him home. Just 96gms to go!

Still in quarantine

I was getting excited about finally seeing Ashwin again tomorrow - Taj's ulcers have finally healed and Jai's blisters are practically gone - when Jai mentioned his mouth was sore...at first I thought there was just one but when I looked carefully with a torch found at least 6 ulcers all around his mouth. This means probably another 2 days quarantine. I asked the nurses if when I bring up milk for Ash I wear a mask and don't touch him or anything or anyone I can just have a look at him. With the weight he's gaining he must have changed so much, and maybe just one look will help me wait out the next couple of days. They said they'll bring him over to the door for me so I can have a quick look, they don't want me coming in the nursery. It's going to be so hard to not reach out and touch him.

Another good gain

I rang the hospital this morning and they said at his weigh in last night Ashwin had put on 110gms, bringing him to 1860gms - just 140gms till he can come home! The nurses were lovely and told me I'd made the right decision to not see Ash while the other boys are still contagious and that if I hadn't come to that decision on my own they would have been suggesting it to me anyway.

Kids still sick

I went in to see Ashwin yesterday morning and again late last night, then this morning too, wearing a mask each time. It was strange not being able to kiss his little head. He's been moved to 4 hourly or demand feeding (meaning he's fed every four hours unless he demands a feed sooner, which is almost always!). This is basically the last step he needed to reach with feeding to be allowed home, so it's just a matter of reaching the right weight. The nurses keep talking about how he's ready to be home now too which is encouraging.

Poor Taj has been in a lot of pain with the ulcers on his tongue, and then tonight Jai came down with a fever. We're hoping Jai doesn't have such a hard time with ulcers as Taj has been having as he is older and usually has a very good immune system. It has made us think very carefully though about the risk to Ash. This seems to be highly contagious as no one Taj has had any kind of sustained contact with (eg cousins, day care etc) has it, so he must have caught it elsewhere with limited contact. As careful as I've been with washing my hands, showering and changing my clothes before visiting and wearing a mask we're worried by just how contagious this is and just how small Ash is and have made the difficult decision that although the hospital would allow me to visit it's just not worth the risk. I spoke to the nurse in the nursery and she agreed that I was making the best decision for Ash and said just to concenrate on looking after my older boys and they would take good care of Ashwin for us. I will miss him so much, the little noises he makes and his intense little eyes that take everything in. These are the hardest times as a parent, doing what's best for your children even when it breaks your heart. When Jai and Taj are nolonger contagious I'll see him again.

I've been getting crazy nesting urges so have made the most of the time at home getting everything ready for his homecoming. Aside from that we are so grateful for the support of family and friends both on an emotional and practical level, it really has made a big difference and helped so much to get through this. We only hope that one day we are able to repay the kindness that has been shown to us. So many people have also sent cards and well wishes it is wonderful to know so many people are thinking of our baby boy.

Sick kids

Ash is doing well with feeding - he still hasn't had a tube feed since I last posted, all suck feeds. Tuesday night weigh in he gained 96gms which was great. He's been having breastfeeds during the time I'm there and bottles over night and only had a gain of 20gms when weighed last night so not sure if it's because he's getting less when breastfeeding, or that only his bottle feeds are fortified with extra calories so less bottle feeds means less gains, or maybe it's just normal - he can't have huge gains every time!

As for the title of this post - "sick kids" - Taj has Hand Foot and Mouth Disease. He has really sore ulcers in his mouth and some blisters on his hands. I have mild cold symptoms and was concerned I may have a mild version of it and shouldn't visit Ash so have been busy today going to the doctor and waiting to hear from the infection control team at the hospital. The doctor thinks I may actually have mastitis but in case it's the beginning of something else should wear a mask for the next couple of days when visiting. The hospital infection control team said not to visit if I have and symptoms of hand, foot and mouth disease. The problem is my cold symptoms could be symptoms of it, though the doctor think probably not. So I'm not sure what to do...I'm thinking of staying away today just to see if anything develops. As much as I desperately want to be with him, I have to do what's best for Ash or it's just selfish seeing him for my own needs but putting him in danger. It's going to be a very hard couple of days as even if I'm clear to visit we now have Taj home for the next several days so I'll go early morning and then again after dinner. Raja dropped off my milk for him and couldn't even get a picture for me as they were taking Ashwin off for a routine follow up head scan.

Hopefully I'll be able to come back with better news in a couple of days.

Feeding well

Ashwin was doing so well with feeding overnight they gave him all suck feeds and then he breastfed really well throughout the day. It'll be interesting when they weigh him tonight to see how he goes as he's drinking a lot but the energy used for all the suck feeds could balance that out. Apparently the doctor's are really happy with him. Now he's off all his monitors I'm really enjoying taking him into the parent lounge to feed and settle or sometimes just have Ash sleeping on my chest. I've always got the place to myself and the lounge is really comfortable and there's a tv too so it feels more homely. Also the staff leave me to my own devices in there so sometimes it's just Ash and I for a couple of hours and I can almost forget we're in a hospital and he feels more like my baby. He's starting to fill out a little too and look not so tiny.