Goodbye 2010...

Corgan's oxygen is still on 21% and 0.5ml/hr. He now weighs 1.090kg. I did KMC twice this morning. We went back to visit Corgan as usual in the evening. Vanessa had him on the same low settings and he was still doing fine. I started KMC with him, but he needed to be suctioned as a whole lot of secretions blocked his nasal passages again. Dr Roos visited him and was happy....

I Wanna Hold Your Hand

Corgan had a good night last night. His oxygen was on 21% when we arrived and he was sleeping peacefully. A couple of the other babies left yesterday so the NICU is the quietest it has been since Corgan's birth. His oxygen flow was turned down to 0,5litres per minute. I did kmc for about 3 hours. When we came back to the hospital this evening Corgan enjoyed some awake time holding his daddy's hand.

Coffee?

Before we arrived at the hospital, Corgan had blood taken. Tests showed that Corgan does not need a blood transfusion yet. I did KMC for almost two hours this morning. Dr Roos changed Corgan's apnea medicine to caffeine. He had a new short-line drip inserted and he is on an antibiotic to ward off a possible infection that Dr Roos picked up. His oxygen flow is now only on 1. His oxygen is on 23%...

My Own

Corgan had a very good night and I did KMC with Corgan. Dr Roos was standing in for Dr Egner. Shanita was on duty. Corgan's new nose drops had arived - especially made at St Augustine's Hospital.... Corgan was breathing very well tonight. Corgan got to wear his own hat and booties today!

Two Months old!

When we arrived Corgan's oxygen was up to about 27% again...I did KMC with him soon after we arrived. After about 45 minutes Corgan's nose got blocked up and he desatted...Vanessa suctioned him well. He was x-rayed. His chest has improved - his lung have grown. Vanessa kept pitting saline in Corgan's nose to help clear the blockage. We bought a pack of the next size up Little Miracle nappies from Toys R Us...but they are still too big...This evening Corgan had improved. Gervais was happy with him.

Blocked Nostril?

Corgan finally passed a few stools during the night and slept well. He was resting well and breathing strong when we arrived. Doctor Egner increased his feed to 9ml/hr and dropped his oxygen to 22%. Corgan will no longer be having physiotherapy. Samera was on duty...I did KMC for about 2 hours. Corgan had a great start to the evening, full of energy - possibly the most energetic we have seen him so far. He then became very sad and distressed later - probably the saddest we have ever seen him. Samera helped Corgan suck his dummy properly for the first time and he really liked it. When Gervais took over for night duty I did KMC for a while, but Corgan became quite tired and started desaturating and Gervais turned his oxygen up a bit and then a bit more and then to 30%! He became even worse and so KMC was stopped. Corgan got even worse...he was looking very weak and unhappy...Gervais suctioned him a few times but then had to call Doctor Egner. Dr Egner ordered x-rays to be taken - it took 45 minutes and a few urgent phone calls and yet the x-ray machine still didn't arrive. Dr Egner arrived and immediately found that it was Corgan's nose that was blocked...possibly due to drying from the nasal prongs - he cracked through the dry build-up and Corgan was fine straight away again! Dr Egner turned the oxygen down to 21%! and cancelled the x-rays...he also discovered Corgan had a hernia...We were very, very relieved after a terribly distressing night...We left the hospital at about 23h20...

Corgan's First Christmas

Shane and I decided not to do gifts for each other for Christmas this year as neither of us were really in the mood for the "festive" season...I decided to get Shane his first gift from his son...Corgan gave his daddy the Neil Young - Le Noise album...apparently there are only very few copies in South Africa... Corgan was sleeping when we arrived at the hospital. I did KMC for about 2 hours and Corgan loved it. Sameera looked after him today. Corgan had a good afternoon...he even sucked his preemie dummy properly for the first time...Gervais turned his oxygen flow down to 1 and his oxygen down to 22% and he is coping well. I did KMC again for about an hour till we left at 10pm...

Christmas Eve in the NICU

Candice let me do KMC the moment we arrived. I told Corgan that for my Christmas present I want him to weigh 1kg...We continued until Dr Egner arrived, 2 hours later. Corgan then had physiotherapy and then the opthalmologist arrived to conduct an eye test on Corgan to check for ROP - his eyes are perfect. He was then weighed and is now 1,035 kg!!! Almost double his birth weight. Corgan's tummy was distended when we arrived in the evening and he had not passed a stool all day. He desaturated quite a few times and Candice tried a couple methods of coercing Corgan's tummy to work to no avail by the time we had left. Shane had his first session of KMC with Corgan - we called it KFC. When we left he was sleeping peacefully and breathing well...

Fountain

Corgan was doing well this morning. We gave Nokuthula her Christmas gift from Corgan - a slab of chocolate and a handmade card. Doctor Egner came and turned the oxygen flow down to 1.5 again. Janet looked after Corgan today. I did Kangaroo Mother Care for almost 2 hours. This evening we gave Nhlanhlenhle her gift from Corgan. Corgan did a huge fountain like wee while Janet was changing his nappy and he wet all the linen. Candice looked after Corgan for the first time tonight.

8 Weeks Old!

Corgan is now 8 weeks old. He weighs 975g. He has been off the ventilator for a whole week. He had a really good day. Nokuthula let me hold him for a little while and he seemed to enjoy it. 

Free!

All Corgan's medication was changed to oral form today. His drip was completely removed in the evening...he seemed so happy and free, he just kept stretching and waving his arms around...

Short-lined

Doctor Egner was very happy with Corgan this morning. His feed has been increased to 8ml. The drip was stopped and shortlined. The antibiotic was stopped. Corgan had another brain scan today and Doctor Egner informed us in the evening that Corgan does indeed have a brain :) Guess that must be medical humour? Corgan's oxygen was brought down during the day from 26% to 23% and his SpO2 remained high. When we arrived Doctor Egner was here and he was still happy with everything. Corgan was lying with his head facing straight up - he usually lies with his head on its side. Nokuthula was on duty again tonight.

910g

Corgan had a good night. He was weighed and is 910g now...he is 20g less than a few days ago...Jean took over from Nokuthula again... Corgan desaturated and he had a brief episode of apnoea, otherwise he had a very good morning breathing very well. This evening Corgan was still doing well.

Wide Awake

Jean was looking after Corgan again when we arrived this morning. He did very well. When we got back to the Neonatal ICU it was full of doctors and nursing staff. There were new arrivals and a baby having a heart operation too. Corgan was still doing very well. Nokuthula took over from Jean. When we left Corgan was still wide awake, like last night. 

Fifth Blood Transfusion

Corgan was still fine and lying on his tummy...he was awake when we arrived. His feed had been increased to 7ml/hr. We heard his second brief cry. When we got back to the hospital this evening we saw Doctor Roos and he was happy with Corgan. Vanessa told us that Corgan desaturated at about 16h15 but after a suctioning he was fine. He was near the end of another blood transfusion (his fifth) when we arrived. He was wide awake and alert. Gervais took over. Corgan forgot to breathe a couple times but recovered well when I quickly touched him. For the first time he was very wide awake when we left.

930g!

Corgan had a very good night. Gervais was very happy. Corgan now weighs 930 grams. Silindile took over in the morning to our relief - I was not looking forward to the sister from yesterday again! His oxygen was down from 30% to about 25%. Silindile gave Corgan a wet cotton wool ball cleaning and she replaced all his probes. We saw his chest for the first time...it looks a bit bruised...When she removed his drip we heard his first loud cry which lasted just a breath and I got all teary eyed too - imagine waiting almost 2 months to hear your baby cry!! Doctor Roos came into the ward to say hello - he is taking over from Doctor Egner over the weekend. Then Doctor Egner came...he was very happy with Corgan's performance. He said his skin colour was looking good too. He changed the feed to 6ml/hr. On his way out of the hospital Doctor Egner saw Shane and told him that he was optimistic this time and hoped that Corgan would not pick up an infection this time round. When we went back to the hospital Silindile let me do some Kangaroo Mother Care with Corgan.

Third Extubation

Corgan was extubated this morning and had no issues the whole day. He was put straight onto nasal prongs this time... He was relaxed and spent most of the time sleeping. I did not like the nurse that looked after my baby today...she is very rough with him...and she is quite rude and arrogant towards me and other staff members...She weighed Corgan but never recorded the weight anywhere so no-one knew what he weighed! In the evening Shane's Dad and my mom had their second visits with Corgan...the rules are being bent for us because of how long we have been there so far and how far we still have to go... They couldn't believe how big he is now. He didn't open his eyes for his granddad but opened them for a few minutes when his granny was there...

Vaseline

Corgan was wide, wide awake this morning with Gervais looking after him... Doctor Egner was debating whether or not to extubate today and decided to wait till tomorrow depending on how well Corgan does today and tonight... Later I noticed Corgan's feeding tube was leaking and so it was changed by Shanita who was looking after him today... I also noticed that Corgan's drip needed to be changed and so that was changed too... The tape got taken off his knees...finally, its been there since one of the very first days... Corgan was oiled with vaseline... When Doctor Egner visited in the early evening he mentioned that Corgan would be extubated tommorrow depending on how well he does tonight...

Chubby!

Corgan had a good night...he was sleeping peacefully when we arrived...Dr Egner decided to wait a bit longer before extubating Corgan...the stomach x-rays showed no problems so the bloating is just from gas...the chest x-rays showed a little 'haziness' from the infection...Corgan is on antibiotics for it...his blood test showed his pH level was low...he may need a blood transfusion tomorrow...he is looking chubbier to us now...especially on his legs and tummy...he had a good day...

Full Tummy

This morning Doctor Egner did a blood gas test and concluded that Corgan's CO2 level was still too high for him to be extubated at present. Vanessa looked after Corgan today. He was very good today. When we got back to the hospital this evening, Vanessa had turned Corgan's feed down to 4ml/hr because she felt that his tummy was too full. Later Nokuthula turned it back up to 5ml because she thought his tummy now felt okay...

Panic!

Doctor Egner was at the hospital when we arrived...I feel panicked if his car is there when we get there... He left the ventilator on 15bpm (the lowest he recommends to avoid having a baby battle against the friction of the tube itself). He is probably going to extubate Corgan again tomorrow. Corgan was absolutely fine today. When we got back to the hospital in the evening, Corgan was sleeping peacefully and then we played with him for an hour or so while he was wide awake and then he fell asleep and was very calm again...

Its A Struggle...

Dr Egner turned the ventilator rate down to 15 bpm...Corgan's blood gas was good. Dr Egner was happy with Corgan...tonight Corgan was wide awake laying on his back...he later brought up some white stuff...he also seemed to be struggling to breathe like his ET tube needed to be cleared or something...and he was desaturating quite a bit...after physio therapy he seemed fine... Later on Nokuthula suctioned Corgan too. He breathed better and slept well after that...

6 Week Check Up

Corgan was his usual self this morning, sometimes sleeping peacefully, sometimes moving about energetically. He is 43 days old today...Doctor Egner changed his drip which was leaking to his other arm (to his left arm). We went across to Doctor Nagel's rooms because I had my 6 week check up - everything was fine... Dr Egner came to see Corgan again in the evening he turned the ventilator rate down to 20 bpm....

Fourth Blood Transfusion

Corgan's fourth blood transfusion was done in the early hours of this morning and finished at about 4am. When we arrived as usual at 6 he was looking a healthy pink again and was sleeping peacefully. Doctor Egner put the feed back up to 5ml per hour and the drip down to 1ml per hour. The ventilator was turned down to 25 bpm. Dr Egner joked with me that ventilators are expensive to rent at home...He said that the issues on Monday were probably due to a chest infection and anemia which tired Corgan out. In the evening Corgan was wide awake and energetic. He was vey excited when he first heard our voices, he kicked his legs about wildly and waved his arms. Doctor Egner was happy with everything.

Bleak...

Corgan looked pale and weak this morning. After Shane went to work Corgan had an episode where his pulse went below 100 which prompted a suctioning from Vanessa who looked after Corgan for her first time today. Doctor Egner put Corgan's feed to 4ml, he changed the drip back to Sodium Chloride and he did a blood gas. Corgan will probably need another blood transfusion. He kept 1 mg of Animophiline every 6 hours in the drip. I held Corgan's hand all morning. I feel so upset by Corgan's state...he looked unwell and unhappy...In the evening, Corgan was doing a lot better and was sleeping a lot of the time...

Back On The Ventilator!

Dr Egner has happy with Corgan this morning...no changes were made...I did kmc for a little while but had to stop because Corgan started desaturating a bit and had an episode of apnea...he desatutated a lot during the day...it was discovered that Corgan has a chest infection...he is on antibiotics... the nurse suctioned Corgan and his nose bled during it... Later, Corgan desaturated the most we had ever seen before change over...he went completely blue...he seemed to have settled when we went back in after change over...Gervais took over from the day nurse and then Corgan had an extended episode of apnea from which he didnt recover... All Corgan's readings dropped to zero...when I saw the monitor that reads his heart rate dropping and oxygen in his blood reading get to 10 (its usually near 100) I just got up and walked out...it was as though I saw the life draining out of him...it felt as though it was draining out of me too...my heart sank...my stomach knotted...Shane stayed behind for as long as he could before the staff told him to leave...We didn't know what to expect at this point...we could see the nurses rushing around frantically with different equipment...I thought that was it...I thought tonight was the night we have been dreading...Then Doctor Egner rushed in past us...Corgan was resussitated... and he was stablised again... Doctor Egner gave Corgan something to stimulate his heart... He also put him on Sabax Neonatalyte with Glucose (Viaflex)... Corgan was much weakened by now and Doctor Egner suggested that Corgan might need to be returned to the ventilator tonight...he waited around for about half an hour to see what Corgan was going to do but he was okay...After he left Corgan battled on for another 20 minutes or so before Doctor Egner had to be called back to re-intubate Corgan... It was a very distressing evening, the most so far... Corgan was fine back on the ventilator and slept peacefully... his feed was stopped for the rest of the night too...he left the hospital very late...

775 grams

Corgan was doing very well this morning, sleeping on his stomach comfortably... The nurse had weighed him earlier and he is now 775 grams. She increased his feed to 6ml. He slept well most of the time we were there. This evening, Corgan was relaxed on his tummy when we arrived. I was allowed to do Kangaroo Care for about 20 minutes before changeover time. He sounded like he had a cold and seemed weak...we told the day nurse...After change over we pointed out to the night nurse as well that Corgan was breathing funny but he didnt do anything...we then told another night nurse as well, she told Corgan's nurse that he needed to be suctioned...but the nurse just listened to Corgan's chest... Corgan was destaturating a lot and alarms were going off often but he had an okay night...

760g

Corgan was sleeping comfortably on his tummy this morning and hardly woke up...Doctor Egner was very happy with Corgan and said that he must be weighed today and then every couple of days from now on... He weighed 760 grams! I had a chance to hold him again..Corgan was still doing fine in the evening with Gervais on duty...He is able to control his own breathing a lot better now than the last few days...

Complex

Corgan was fine this morning. When Doctor Egner came he increased the aminophiline to 1 mg to help with the apnea episodes. Doctor Egner says Corgan seems to have a light complexion as his skin is very pale, but all tests reveal no abnormalities. Nhlanhlenhle was on duty today...Corgan really seems to enjoy lying on his tummy as this results in him relaxing well and not having as many apnea episodes - he had a few this morning, but only one this afternoon....

KMC

Corgan is still doing fine with the nasal prongs...his feed has been increased to 5ml per hour - continuous feeds...my EBM will now be fortified with FM 85 to increase Corgan's calorie intake...he will also now be getting extra vitamins as well (Vi-daylin drops, D drops and Ferro drops)...I started kangaroo care today...Corgan was relaxed during it...he stuck his tongue on my chest twice and made sucking noises... Corgan had a few episodes of apnea while we were there this evening...he would stop breathing for a few moments - just long enough to give us a fright and then he's be fine again...Nokuthula is concerned about how pale he looks...

Nasal Prongs

Nokuthula said Corgan had a good night... Dr Egner said that if Corgan carried on like he is now he could go onto nasal prongs in the afternoon. When we got back at 17h00, Corgan was on nasal prongs... We could see his whole face....I decided to become a breast milk donor because my freezer is overflowing with bags of frozen milk for Corgan...I had to have an HIV test for the breast milk donations...it was very similar to a home pregnancy test...it was negative...Corgan had an episode of apnea when he was alone with Shane who got such a fright...Shane ran to call the nurses who were in the PICU, which is right next door to NICU...when I came back for the HIV testing everything was normal again...Corgan was weighed, he is now 630g...

Second Extubation

Corgan was doing well still when we arrived at the hospital. Doctor Egner extubated Corgan this morning just before 9 o'clock. He was on CPAP again...Shane came down from Kloof to see Corgan...He was very active and doing well. When we got back to the hospital in the evening the nurse said Corgan had been doing very well. He looked very calm and seemed to be having a good sleep. Not long afterwards he awoke and became quite restless. At times he waved his legs about frantically and then he started battling...he went pale, bluish a few times...the nurse had to help him breathe a few times and he desaturated...the physiotherapists arrived and went to wait in the parents lounge...The nurse felt that Corgan needed to be suctioned and that this should help, Corgan seems to hate being suctioned...Earlier in the day the nurse had replaced his Resp sensor in the hope that his reading on the monitor would be more accurate, but they still seemed off - often the machine diaplayed an Apnoea message when he was actually breathing. We sat outside anxiously. Corgan was back to his usual self when we went back into his ward....

Quivering

Corgan's calves looked noticeably bigger today.Nokuthula measured the circumference of his head and it was 25cm. Doctor Egner turned the bpm down to 16 and tomorrow he will try take Corgan off the ventilator again. In the evening Corgan was quite relaxed at first, but the ventilator was showing about 200bpm which we attributed to some water collecting in his breathing tube. Shane drained the collecting water from the tube into the container when the nurse wasn't looking and the bpm on the ventilator returned to how it normally is...that is something that irritates us quite a bit...it happens often and gets left...the pipe quivers which then causes his whole body to quiver...He was fne for the rest of the time were there...

A4

Corgan was wide awake when we got to the hospital. Doctor Egner came and turned the ventilator down to 20 bpm and he was impressed with Corgan's breathing. We took a photo of Corgan along side an A4 page, we will use the proportions from the photo to create a 'life size' picture of him. When we got back to the hospital in the evening, Silindile showed us a photo she took of Corgan pulling on the ventilator tube with her Nokia 5800.

One Month Old!!

Corgan's is now one month old!!! His feed was stopped this morning because the nurse thought he wasn't pooing as much as before and that his stomach was full of feed. When Doctor Egner arrived Corgan had prepared a huge stinky poo for him....So his feed was continued. Corgan's CO2 was still high so the ventilator was not decreased further. My baby shower was today, a good distraction...there was a good turnout of people and lots and lots of presents. Shane took photos with our camera. In the evening Corgan was very wide awake. He had somehow managed to get his green Resp/ECG cable attached to his arm instead of his side and his feed tube was disconnected. Doctor Egner came and said Corgan is doing well with his breathing.