Bath time!

When we arrived at KKH today, we had to register and get our temperature tested and put on a mask before we were allowed into NICU. These are the precaution procedures for detection of swine flu.

We were pretty late today, but we were in time to witness Reyes taking a sponge bath. hee. The attending nurse updated us he is now on 2 hourly feed of 18 ml. I hope he tolerates well. :)

He is now 1640g, so happy to see him grow. We watched how the nurse sponge him and I managed to see him without CPAP again. She started with sponging his head with balls of cotton wool soaked in sterile solution, followed by his face and body. He also had a change of diapers and clothes. We noticed that he had hernia for his belly button, its like a small swollen ball but the nurse said it is not of much concern since it is soft and they will normally leave it as it is unless the docs ordered for a surgery to remove it.

His face is chubby! I also had a chance to carry him while the nurse set up his bed for him but only for a while as he had to be place back on CPAP again. I think he would be able to come home soon once he weaned off CPAP. Took some pics as well. Check out his chubby cheeks!!

Feeds

Reyes now weighs 1575g, his feeding has been changed to hourly. Previously, he was on constant feeding at 9.5 ml/hr, now they are feeding him hourly with 7 ml and 14 ml. They will also stretch the timing to 2 to 3 hrs in time to come, this is to allow him to accomodate longer intervals between feeds as thats whats gonna happen when he is home.

He is still on tube feeding though. I had a go holding the syringe that was attached to his feeding tube and also carried him for a good 30 mins today.

Was told by the attending nurse that they will try removing his CPAP this coming friday and will try letting him on an hour of either oxygen cap or room air to see how well he can tolerate.

I was hoping he can be weaned off CPAP soon as that would means I can start latching him on to breastfeed him direct as the CPAP will not be in the way. Let's hope he grows and beef up a bit more so that it will not be too physically straining for him. :)

Yeah, another milestone reached!

Today's visit was a very pleasant one. Reyes upgraded to the open cot!!

Just when I was pondering when he could do that, I was pleasantly surprised that he weighs 1530g today already. When we were there, the attending nurses was about to change the bed for him and I was given a chance to carry him. I was so excited as I sat near the incubator waiting for the nurse to swaddle him and hand him to me. When he was finally handed over to me, I was so happy! This is the first time I could physically hold him in my arms since I delivered him, the feeling is great!

As I was carrying him, his eyes were wide opened staring at me and occasionally looking at daddy who was taking pics of him nearby. Cute! I realised his double eyelids like gone eh.. haha

I asked the nurse when will I be able to latch him on directly for breastfeeding and was told that he has to be off the CPAP to do that. They will be removing the CPAP on a trial and error basis starting Mon to see how well he can tolerate. Let's hope he gets off the CPAP soon. The nurse also mentioned that he would probably need to be moved to the Step Down Unit first before proceeding to Special Care.

I took some pics today, I'll let the pictures do the talking. :)

Open cot?

Reyes's next door neighbour has just "upgraded" to a open cot. I looked forward to Reyes moving on to that. We were told that the baby has to hit 1.5 kg before that can happen and when the baby is in an open cot, then they can be carried.

The attending nurse updated us that Reyes weighs 1450g now. Very soon he would hit 1.5 kg and I would be able to carry him. We were also told something interesting when we enquired if Reyes poo today. The attending nurse told us that he did twice and large quantity as well, and he makes noise everytime he poo so the nurses will change his diapers. haha, seemed like he is a baby that likes to be clean, not like his brother, Regan doesn't even care if his whole butt is smeared with poo. :)

Regan is now able to sleep in his own bed at home with the maid in the same room, which means I can rest more. I'm glad that I have one less issue to stress about. :)

Off the drip

When we visited Reyes yesterday, he was waiting for us wide awake! I was glad that he was off the drip and his EBM intake has been increased to 9.5 ml/hr.

He is still on the ventilatior machine though. But upon checking with the attending nurse (the nurses there is always different), we were told that it's just 21% oxygen which is normal air and the only reason why he is put on that is that this ventilator machine has an alarm that will go off when there's any leakage, meaning when active Reyes pulls on any of the cords. The previous apparatus was not able to sound an alarm when that happens and its actually safer to be on this machine. In fact, its the same as per before.

I was relieved to hear that as I thought it was some condition that requires for him to be on this new machine. Probably the previous attending nurse did not explain to us clearly I guessed.

His weight dropped a little though, now at 1419 g. Hopefully he puts on more and can breathe on his own without using CPAP. We are also making daily trips to see him, stroke him and hopefully that helps. :)

Was not able to upload any new pics or video of him as they are all taken with Hubby's phone and he hasn't the time to pass it on to me. Will upload when I get a chance.

Roller coaster ride

I was at the hospital visiting Reyes yesterday with my mum. He was at 1392g and keeps struggling to open his eyes as he seemed so tired. Looking at him progressing well makes me really really happy.

Today when me and hubby was there to see him, we were surprised to see him on a drip and he was having a respiratory ventilator and his EBM feeds was reduced to 4.5 ml/hr. We were told by the attending nurse that he wasn't coping very well with breathing thus they reduced his feeds so that his stomach is less bloated so it doesn't compress the lungs since he is still pretty small in size. The ventilator was there to help him breathe better but being on it is a step backward from his progress.

Now I can fully comprehend what other mummies of preemies meant by a roller coaster ride. Just when I thought things are looking good, it took a backward turn. Hubby reminded me that the social worker ever mentioned that it could be 2-step forward progress one day but 1-step backward the next day.

The only comforting thing is he put on a bit today, standing at 1430g. Perhaps growing bigger will also help him to cope better physically.

Anyhow, I just hope that he can be well enough to be home soon.

Good News!

Reyes's PDA has closed!! The medication worked!

He had the scan done yesterday and we were totally relieved when the attending nurse told us that his PDA has closed. Yippee! No need for surgery, well, at least for now.

I checked with the Doc on the possibility of the PDA re-opening again and was told that as long as he is not full term (38 weeks), the possibility is there. Reyes is currently 32+ weeks so he would be monitored on a daily basis to ensure that all is fine.

He also did a cranial scan and an eye scan yesterday and the results were all satisfactory.

Whew! We were so glad. Finally, things are looking much better, his weighs 1375 g as of yesterday. Even Hubby commented that, its such a relieve that he doesnt have to go through the surgery. Praise the Lord!

Thank you everyone who kept him in your prayers or have been praying for him. I can't thank you guys enough but I really appreciate it. Sincerely thanking you.

Weight gain

Hasn't had the time to update these few days. Reyes now weighs 1360g as of yesterday, a tremendous increase in weight from 1286g 3 days ago. His EBM intake has been increased to 8.5 ml/hr. This is the only comforting thing for now. I was hoping he would hit 1400g today.

We were anticipating a call from NICU the whole of yesterday to inform us of the echo scan results on the PDA but no one called. When we were there then we realised that the scan wasn't done, it is likely to be done today though. But according to the attending nurse, through the stethoscope, the doc could still hear murmurs.

I was a little dishearten upon hearing this as it would means that a surgery is inevitable. But as I told my hubby, perhaps God needs a little more time and maybe we'll hear better news on the scan results today. Haha, I know this sounds a little lame but we need every little bit of comfort now.

I'm kind of prepared for it anyway, so I'm just waiting...

Verdict

OK.. the diuretic didn't work, the retained fluid in his heart is still there, it wasn't drained at all.

The doctor we spoke to was Dr Chua, she updated us that they will be giving him the medication that will try to close up the duct, that's the same one he was given when he was 2 days old. The dosage for that will be a total of 3 doses, once every 12 hrs. Generally, this medication doesn't work 100% for infants more than 14-15 days old but its worth a try since he responded positively to it before and we would prefer to leave surgery to the last resort. There would be another scan on Friday and that would be one to determine if he needs to be operated on.

Reyes's weight was 1286g yesterday. When I stroke him, he struggled to open his sleepy eyes. I stood by his incubator for a good 30 mins, but I feel kind of helpless. I know I can count on the doctors and nurses to take good care of him but my hands are tied as there's really nothing I can do to help.

But I have full faith in God that all will be well. We are praying.

I fear...

Just got a call from NICU earlier, they wanted me to be there at 5 pm later as the Doc needs to speak to me. I hope they are gonna give me good news but I fear the worse.

It could be the scan results that came back on his PDA that needs to be discussed, I'm not sure. Perhaps they wanna administer the other dose of medication to him or perhaps he needs a surgery or perhaps...

I dare not think much.. I can only pray and have faith in God. Have faith in Him to watch over my boy, to make sure that everything will be fine.

Reyes has dimples!!!

Yesterday was the 7th day of the administration of the diuretic to Reyes, he will be doing a scan today to see if the retained fluid in his heart gets drained off.

His weight is 1268g, dropped slightly but he is still active generally.

I noticed that his tummy is a little bloated, checked with the attending nurse and was told that his tummy is indeed bloated but he is passing motion regularly so there's nothing to be worried about. They call it the CPAP-tummy, as air could be taken into the tummy to make it appear big but if its soft, she mentioned that's not an issue.

I hope the scan today will reflect some good results.

Noticed that Reyes has dimples! 帅! But that's really hard to capture on pictures. Perhaps when he is bigger ba.

He's growing..

Technically speaking, Reyes will be of 33 weeks this coming Wed. I remembered being told that his discharge would be possible when he is 35 weeks and at least 2 kg in size.

When I saw him on Wed, he was 1270g, on 7 ml/hr of EBM, hopefully when I see him today, he would be more than 1.3 kg. The diurectic that was given to him is a 7-day course, then they will do a scan on his PDA again. I doubt he can be discharge anytime soon.

Now I'm worried I can't spend enough time with him cos by the time he is home, I might have to be back at work. Perhaps I should exhaust the whole 4 mths of maternity leave. Let's see how it goes.

The reopened PDA

Didn't have time to update the blog past few days as Regan just went on to a new school and we are all trying to arrange timings and all to send and pick him up from school. He seemed to be enjoying it though with the interesting Montesorri syllabus. It seemed much easier to get him used to it in this new school. :)

Reyes is doing pretty well in KK, when I saw him on Mon, he was 1235g and is on EBM of 7 ml/hr. I hope he gets to 1.3kg soon!! There was a new doctor in, name is Dr Tan and she was explaining to us on his reopened PDA and what are the options & steps they are taking.

This duct is causing blood from the left heart to flow back to the lungs. If this amount is substantial, it causes breathing issues in infants. Infants will also have to work harder breathing and thus use up more energy as well.

We were told the PDA in Reyes has increased from 2.4mm to 2.6mm and he is having some fluid retained in the heart at this point and so they have started administering diurectic to dry him up a little, hopefull the retained fluid will be expelled out from the body and hopefully it might help to close up the PDA a little.

If this fails, they will be administering another course of medication to Reyes and keep on monitoring the situation. The last resort would be to go through a surgery which we are trying to avoid at all costs taking into consideration the risks involved.

He was all wide-eyes when we were there 2 days ago. I hope and pray that the surgery would not be necessary. Be strong, Reyes!

A milestone reached!

Surprisingly everytime we visit Reyes, he will try very hard to open his eyes when he hear us. I don't think he can see us clearly at this point in time but I would rather think he can. :)

He is 1.2kg as of today!! Yeah, finally he surpassed the 1.1kg mark. To me, this is a major milestone. He has been in NICU for almost 3 weeks and this is at least a little achievement.

But although now he is off all tubes, he is still on CPAP due to his PDA. His progress to Special Care Unit will be hindered by the fact that he still needs CPAP. I was hoping that his chest muscle will get stronger and his PDA condition will get better.

Afternoon Tea Session

We were invited by the NICU nurses to attend a afternoon tea session for all parents who have their babies in NICU to share with parents whom already been there done that.

We were honoured to have Doreen share with us her journey with Davien's 4 mth stay in NICU. Davien was so cute, he was born a 26 week-er at only abt 600g, he had all the problems and issues of an immature baby but his mummy persisted and took very very good care of him and now he is as normal as any other kids. I admire Doreen's persistence and courage and love for her son.

She shared with us how important it is to not give up and how hard it was for her to pick up the phone when the hospital called in the middle of the night, she actually dreaded those phonecalls and wanted to throw her phone into the toilet bowl. I can understand how she must have felt at that point in time. But Davien has been such a strong boy and he is doing his mummy proud. Although he is going for another ops in 2 weeks time, his mummy is confident that Davien will be ok.

I thought about it, Reyes did not have that much problems compared to Davien. Is he considered lucky? It suddenly occur to me that every single preemies there in NICU are fighters, fighting for their survival.

When I reached into the incubator yesterday to touch Reyes and talked to him, he opened his eyes almost immediately. His weight as of yesterday is 1185g, finally reached his birth weight. He looks pretty good too. I'm praying that his PDA will close soon so he dun have to go surgery for that. Praying...

Summarised update

Spoke with the doctor on duty when I was there visiting Reyes last evening.

I was glad to see that he is off the glucose drip and on "Full Feed" now. His intake of EBM is 6.5 ml/hr. There's a little bruise on his hand as a result from the needle of the infusion, I hope that recovers soon.

As confirmed by the doctor on duty last evening, Reyes' PDA reopened but as the earlier doc commented, they are not going to administer any medication to him as it might not be effective since he is more than 14-15 days old and also due to the side effects of the drugs. So, they are going to keep the CPAP on him until he is ready, maybe till he is about 1.3 kg.

The cranial ultrascan results from 30 Mar 09 came back to indicate a cyst of 3mm, which is negligible according to the Doc.

So now all we can do is to wait patiently for Reyes to grow bigger. Reyes, you have to jia you oh! Mummy will be here for ya!