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.

Masks

Corgan finally did a poo during the night. We had to wear gowns and masks this morning, we were unsure why, all of a sudden we had to... Corgan fought with Doctor Egner when the doctor was taking his blood this morning - he kept pulling his arm away from Doctor Egner. Silindile held his one arm and I held his other shoulder. Doctor Egner didn't reduce his rate today because he wants to take it slow from here and there was something regarding his CO2 levels too. When we arrived at the hospital this evening, Corgan was very wide awake and active, but not beeping much except for his heart rate which was going high every now and then as a result of his activeness...We eventually found out that we had to wear the gowns and masks to prevent cross-infection because Corgan had a chest infection...

Third Blood Transfusion

Doctor Egner turned the ventilator bpm down to 25... the FiO2 was turned down to 22%. Doctor Egner said that Corgan is definitely stronger now...When we arrived at the hospital in the evening Corgan was having a blood transfusion. He was weighed today and he now weighs 555 grams. Corgan still hasn't pooed since being extubated.

Pale...

When we got to the hospital this morning,Corgan was pink and back to his active self...Dr Egner turned the ventilator down to 35bpm. He was happy with Corgan...when we got back to Corgan this evening the ventilator was on 30 bpm...the Fi02 has been on 24% mostly. Corgan became pale during the day. He will be getting another blood transfusion tomorrow.

First Extubation...

Corgan was fine this morning. Doctor Egner came at about 07h30 and extubated Corgan...he was wide awake...I could hear him breathing and hiccupping. He also sneezed twice. He didn't cry though. He had to wear an oxygen mask. He is now on CPAP...I got a chance to see his whole face when Silindile adjusted the mask. Silindile let me hold Corgan in my arms for the first time and she let me do some Kangaroo Care for about ten minutes. Shane also had a chance to hold him. It was the best time with Corgan so far. When we returned in the evening, Silindile met us at the door looking down...she told us that Corgan had been put back on the ventilator about an hour ago because he had become too exhausted trying to breathe on his own...It was very disappointing....Corgan seemed very tired and weak...he was very pale...when we saw him and he was in the deepest sleep we had seen him in yet... he woke up later with half the energy he usually has and seemed quite shaky. It was so sad to see him back on the ventilator...not only for us but he seems to really hate having the ET tube in his nose...The ventilator was set back up to 55bpm. Hardly a beep the entire time we were with him. Gervais was on duty. We had a good cry together while eating our supper in the car...I don't think either of us ate much...we saw Dot (the midwife) in the NICU and she gave us words of encouragement reminding us how strong Corgan has been so far and how strong he is for such a small baby boy. We love him so much. Doctor Egner came to speak to us and to tell us himself that Corgan had to be re-intubated as his lungs seem to be too immature at present. He turned the ventilator down to 45 bpm and said that he would wean Corgan off again and perhaps within the next 4 to 5 days he might try take Corgan off again. By the time we left Corgan was acting more like his old self and was starting to wiggle about and upset the machines....

Tube Obstructed

Doctor Egner was happy with everything and said he might take Corgan off the ventilator tomorrow. He turned the machine down to 26%. When we got back to the hospital in the evening, Corgan's machine was beeping every now and then with the "tube obstructed" message and his tube looked like it was too deep and it seemed to be annoying him. He was very unsettled...Shane and I were both feeling very frustrated and a little annoyed and angry...

Leak?

We took ten bags of home-expressed milk with us to the hospital because the bottles of EBM from the first few days there are running low now...Corgan beeped non stop today. We noticed that the ventilator displayed a very high leak percentage which was mostly above 90%. His tube seemed to have come out by about a centimetre. The machine kept saying "mv low" and then "apnoea" over and over again without the usual preceding message "tube obstructed", however the heart and pulse rate machine seemed quite allright. We had a feeling that this meant that the tube was leaking as it was too far out. The nurse on duty said everything was just fine when we asked about the leak message on the ventilator... Shane changed Corgan's nappy...Corgan made loud fart while Shane was busy...we had a good laugh... We stayed with Corgan until Doctor Roos came and he turned the ventilator down from 35 to 29 breaths per minute. He said Corgan was doing very well. When we got back to Corgan in the evening, he was still causing the machines to beep and we noticed that the tube was even further out than earlier. The same two messages beeping away, the leak percentage sky high still. We sat with Corgan and silenced the machine non-stop. Just before change over, I heard gasping sounds coming from Corgan! Shane heard them too. Soft squeaking sounds as he breathed! But we shouldn't hear anything from him while he is ventilated!!! Gervais was looking after another patient today but happened to be nearby and he popped into the ward to see what was happening. He was amazed when we told him we could hear Corgan making sounds and he immediately saw that the tube was further out than normal and took action to re-secure it with assistance from Corgan's nurse. We were very unhappy when we left tonight...

Calm

Corgan was calm when we arrived at the hospital. Doctor Egner decreased the ventilator to 35bpm. He said that Corgan is doing quite a bit of breathing on his own. He was also happy with the blood gas. Dr Roos will be looking after Corgan for the rest of the weekend...The nurse wanted to weigh him but didn't get a chance to...we helped Nokuthula change Corgan's linen...

Belly Button

Corgan was calm today. Doctor Egner was happy with everything. He turned the ventilator down to 40bpm. Corgan's umbilical cord had come off today and Silindile gave the little piece to us...it looks like a little piece of dry snot... We had another chance to hold Corgan. Nokuthula explained the process of removing secretions...we hate watching them suction Corgan...

Hold You

Doctor Egner didn't turn the ventilator down at all today because Corgan's chest was noisy. He had more x-rays done as well... They had to redo the x-ray because they forgot to remove the gell packs from under Corgan before x-raying him. The tube needed to be pulled out a bit again as well. Corgan was noticeably calmer again after the tube had been adjusted. Silindile put Corgan into my hands for a bit...so I had her first chance to hold my little baby...he was so calm and relaxed...it felt like I was just holding a blanket or a towel....I kissed his forehead over and over...I was so happy...Then Shane was given his first chance too. We were both so happy afterwards.

I Heart You

The ventilator 'fset' was turned down from 50 to 45bpm this morning. A cardiologist came to check Corgan's heart for any PDA issues, he said Corgan is too small for the hospital equipment to be accurate, he wants to see Corgan at his rooms at St. Augustine's at some point... Corgan kept wiggling his head from side to side often during the day causing the machine to beep quite a bit. My friend, Margaux, visited me at home in the aftenoon at home. She gave us an Angel Care monitor unit and a car seat. We are so grateful!! Gervais was giving Corgan a clean when we arrived this evening. Corgan was beeping quite a lot again...

Good Looking

Corgan's right eye was glued shut with sleepies when we go to the hospital...he was good...Dr Egner was happy with everything again this morning...when we saw Dr Egner this evening he told us that Corgan is quite healthy and has nice skin for a premature baby...Dr Egner has become friendlier towards us - think that means we can breathe now? Corgan coped well with the decreased ventilation...

Peaceful

Corgan was peaceful this morning. Doctor Egner was happy with everything today. His ventilator was turned down to 22% today and then in the evening it was on about 26% / 27% again...

Second Blood Transfusion

Doctor Egner was in the NICU when we arrived this morning...he confirmed the second blood transfusion will go ahead later today...I mentioned to him that I was going to do KMC today...he told the nurse he does not advise it as it is still too early and Corgan is not ready...I was very dissapointed...but he knows what is best... Corgan was relaxed this morning. Corgan's blood transfusion was almost finished when we got back to the hospital this evening. His colour was looking good again. His blood type is B Negative. Shane changed his nappy twice tonight. The first time was after Corgan had done a huge wee. The second was after a normal poo.

New Vent

Corgan was quiet this morning. Silindile changed his ventilator as is required on a weekly basis. Doctor Egner came after Shane had left to start lessons at home and he mentioned that Corgan will need another blood transfusion because his bone marrow is too "immature" to produce enough new blood - and him taking blood everyday does not help...this evening Silindile asked me if I was interested in doing Kangaroo Care with Corgan tomorrow morning! Doctor Egner came while we were there tonight and he said Corgan will definitely need another transfusion tomorrow.

Little Sausage

Corgan was fine this morning...he had his old thin ventilation tube replaced with a new thicker tube. Doctor Egner said Corgan's chest infection was unchanged. He had another x-ray done. He had a new feeding tube put in too. We have been noticing that Corgan has put on weight as he now looks a bit like a sausage roll. Tonight we changed his nappy and helped Nokathula change his bedding by holding him and his tubes while she replaced the bedding. The machine is noticeably quieter and only beeped when he actually moved. His FiO2 was now set to about 30% rather than the 40% it has been on lately. All looking good. His left leg had swelled with the drip that was in it, but Nokuthula changed it to his other leg the moment she came on duty earlier on.

No Blood!

Corgan had further x-rays of his chest done. The ET tube hasn't moved much. His chest infection seems to be clearing. No blood was taken from him this morning for a change and for the first time since he was born...The nurse explained that over 4 hours of feeding, which totals 16ml, Corgan only doesn't digest 0.8ml which is very good. The nurse from yesterday and the other day was much friendly and talkative today...I hope she feels bad! I am now getting 200ml each time I express...This evening Corgan was quite relaxed, his machine beeping every now and then, going from a couple "Tube Obstructed" messages to the "Apnoeia" message. Gervais is on duty tonight...he mentioned that this was when Corgan forgets to breathe sometimes for about ten seconds or so, which is quite scary...its common for premature babies to do that...

Two Weeks Old

Corgan is two weeks old today. Shane took the day off work. Corgan was quite calm this morning. Doctor Egner came did a blood gas, he also said that he wanted another x-ray to be done tomorrow. The nurse that upset me is looking after Corgan again...She was friendlier today...A kind lady name Ashle contacted me - she wanted to give me a breast pump to have...we met this afternoon...very sweet, and very helpful! I now have a double breast pump...so that cuts my expressing time in half which means more sleep at night!!! Thank you Ashle!!

Marshmallow

Corgan has physiotherapy twice a day now; in the morning and in the evening. I changed his nappy in the morning and Shane had his first chance in the evening - facing Corgan's biggest poo yet. We also brought him a little MAM Preemie dummy to try this evening. He sucked it a little bit but let it drop out each time, his cheeks looked like they had marshmallows stuck in them when the dummy was in his mouth...He kept fighting his sleep but eventually at about 8pm he was very sleepy. During the night the line in his belly button was taken out...

First Nappy Change

After the change over this morning , I told one of the nurses about the constant alarming from the ventilator... She tried to convince me it was Corgan's movements but I told her I don't think so...she realised that the alarm parameters were set too low and she edited them and the alarms stopped beeping. Corgan had another chest x-ray. He had physiotherapy too. His nurse, Silindile, accidentally pulled out a little circular patch of his hair when she removed his eye shades when I asked her to take them off...I could see his mouth making crying motions...When we went to the hospital later he was having another physiotherapy session. Doctor Egner was there and he said that there was some muck on Corgan's chest and he will need another antibiotic. I changed his nappy for the first time.

First Blood Transfusion

We woke up a little later today at 7am. When we got to the hospital Corgan had a new beanie on and his shades. Doctor Egner arrived shortly afterwards to take some blood to do a blood gas (this happens every day) as well as blood to do a cross match for a blood transfusion. Corgan had just had a successful blood transfusion from 13h50 to 17h50. His skin colour had already improved to a healthy looking pink rather than the pale white anemic colour he had been the last couple days or so. His ventilator machine kept beeping every couple minutes despite the fact that he was sound asleep and his body very calm and still. We watched this continue for an hour or so and we mentioned it to the night nurse after the change over. We were told that it was beeping because of Corgan's movements, but we disagreed...it just seemed to beep no matter whether Corgan was moving or not!

Little Miracle

A nurse named Jean attended to Corgan today. He was very good, he emptied the water from the ventilator pipe and straightened the pipe going into Corgan's nose before we had a chance to ask him to do it. Corgan's shades were back on today and he was active and causing the machine to beep a lot as it lost its correct signal as the probes were shaken around with his movements. When I saw Doctor Egner he told my that they would bw giving Corgan a blood transfusion within the next 24 hours. Jean told me about little miracle nappies so I went and bought premature baby nappies for 0 to 1.2 kgs from Toys R Us...I didn't even know they existed until this morning. We went back to the hospital in the evening. Jean had moved the bandage that was close under Corgan's left eye so that it was now a more comfortable distance away, it was right by his eye this morning. Jean gave Corgan a good clean and he also put one of the new tiny nappies on Corgan and it was still a little bit big for him. After the change over the other male nurse, named Gervais, was on duty again. Corgan was quite restless and upset again tonight...

Take It Off...

Corgan was very active this morning. I asked Doctor Egner when Corgan's shades can be taken off...said anytime and he took them off right away. Corgan's eyes were open! Corgan had another chest x-ray (his third so far). The nurse looking after Corgan today really upset me...Corgan kept desatting and his alarms were going off from time to time and she rudely told me to stop touching and talking to "her baby" because I was distressing him and causing him to desat. Not a wise choice of words...the last thing a new, first time mother in this situation especially wants to or needs to hear...I was so upset that I left the hospital early this morning...I didn't even say goodbye to Corgan or any of the staff, I was so heart sore, I was crying when I left and cried the whole way home...I was miserable the rest if the day...Shane wanted to complain to management but I was too afraid - We leave our baby in this persons hands...you never know what could happen...Corgan's feed went up to 4ml per hour. I have started storing my EBM (Expressed Breast Milk) at home because yesterday Silindile looked after Corgan and told me that I had 28 bottles of milk in their freezer...When we both went to the hospital, after Shane returned from work, Corgan was still very active. A physiotherapist came to attend to Corgan. After the changeover of nurses, Corgan's eye shades were put back on, but not for long.

The End Of TPN

Corgan was very active today. His feed was increased to 3ml per hour continuous feeds. His TPN was stopped completely - he is now only getting my milk...Doctor Egner asked if I have been touching Corgan and encouraged me to continue...its difficult though because some nurses are happy to let us touch our baby while ours tell us not to touch him...Dr Egner said Corgan was looking "happy" today judging by his blood gas test. We both had a chance to touch Corgan tonight. He was quite active.

One Week Old

Corgan is one week old today. He was quite active this morning. While Shane was at work I got a chance to touch Corgan for about whole hour...his feed was increased to 2ml per hour - continuous feed. The nurses say we have to take one day at a time...Tonight we were both able to touch Corgan.

Kisses xxx

Corgan was lying peacefully this morning. His beanie was off when we got there. The cling wrap over him was taken off later. I expressed 115ml this morning. Corgan's skin colour was looking better. He made far reaching wees, even onto his own chest and he pooed once - his poo looks like gecko poo...he is lying on a newborn nappy...we call it his cave. Doctor Egner told me that he had visited Corgan last night and raised the ventilator bpm rate a bit. Doctor Egner tested his blood gas and found that his sodium chloride levels were good so that drip is being removed, but his sugar level is a bit high. I read a few pages of the Johnson's Mother and Baby Book to Corgan so that he could hear my voice for a while. When we went back to see Corgan tonight I stole a few opportunities to touch Corgan's feet, hands, arm and leg..he is so soft...Doctor Egner came tonight as well and said that the Jaundice seems to have gone. He adjusted the ventilator again. He took Corgan's "shades" off and we could see his frowning closed eyes. It looked as though he was trying to open them slightly. The nurse looking after him let us give him his first kisses...He was very active tonight.

Just The Two Of Us...

Corgan was resting peacefully when we arrived this morning. Shane went to work. It was much more intimidating being there by myself...I expressed 95ml...Doctor Roos came in and said that Corgan's looking good and is doing better than most preterm babies. He asked how I was doing, I just broke into tears and had a good cry on his tummy when he comforted me. Doctor Egner arrived later and did a thorough examination of Corgan. He said his jaundice levels have dropped. Corgan was going for an ultrasound brain scan later. I went home and prepared supper...I packed it into picnic containers to take with us... After Shane got home from work we went back to the hospital. Corgan was still peacefully resting. Doctor Egner was there and told us he was not happy with Corgan's skin colour which had hot returned to its former pinkish red but to a browner colour. He is going to give Corgan an antibiotic. He also told us that the brain scan revealed that Corgan's brain looks good and healthy and they did not detect any bleeds. There was a new continuous feeding machine that was feeding breast milk into Corgan at a rate of 1ml per hour (continuous). I expressed 100ml per expression. I sneaked in some touching of Corgan's feet when no nurses were around...I wanted to touch my baby! I couldn't wait to hold him...or even kiss him...we ate our supper in the car while the nursing staff did their change over...