Well it's been a very slow and rocky road as we are now entering day 47 of our precious little angel's life.
My apologies for not blogging on the progress, this is mainly because to me it felt as though there was little to no progress, and yet when I now look back over the last 47 days and especially the 3 weeks since his last surgery and my last blog post we have made HUGE progress.
Milestones and progress tracking:
On the 5 December, mom and dad were able to hold him for the first time, still on a pillow to protect his tender little body, but a very emotional time.
On 14 December - successful surgery to remove part of his bowel due to blockage caused by scar tissue adhesion.
16 December - taken off ventilator and onto oxygen
19 December - oxygen level reduced to 21% (almost the minimum). Not feeding yet due to large quantity of bile still being suctioned out from his stomach
23 December - first feed given via NG tube
25 December - mom and dad able to hold him again and feed increased to 15ml every 3 hours as he has passed his first stool since he started feeding after the op (hard to believe we get excited by such things ;-) )
27 December - bile seems to be decreasing and feeds increased to 35 ml every 3 hours. They suction his stomach prior to feeding to check for bile content, feed him via nasal tube, wait about an hour and then suction again. Taken off oxygen this morning, now breathing on his own - his collapsed lung has also re-inflated :-)
28 December - Feed increased to 45ml. Feeds being alternated, 2 tube feeds, 1 bottle.
29 December - moved from ICU to High-care. Mom and dad are now able to change his nappy, dress him and pick him up whenever they want to. Making wonderful progress, he now looks like a healthy baby :-)
1 Jan - feeds changed to alternate 1 bottle, 1 tube, increasing volume daily
4 Jan - feeds now at 75 ml, 2 bottle, 1 by tube - hoping that his sucking will strengthen enough to begin breastfeeding. Had all his inoculations today in preparation for discharge sometime soon.

I can't believe that it's been almost 2 weeks since my last post and very little has changed.
Matthew's condition since his second operation has remained stable. He was taken off the ventilator on the 5 December and onto oxygen. All his medication had also been removed and we have just been trying to wait patiently for the bile in his stomach to clear so that he can begin feeding.
My son and daughter-in-law are sitting with what feels like gallons of breast milk, expressed and labelled in their freezer waiting for the hospital to ask for it.
On Monday, 8 December they detected some fluid build up in his smaller left lung. Blood tests showed signs of a possible infection and he was put onto a 10-day course of antibiotics and is having physiotherapy daily.
On Thursday, x-rays were done to investigate the possible cause of the ongoing bile which is being sucked from his stomach into a little bottle next to him. The pediatrician and Professor suspect a blockage of sort and are planning to operate sometime this weekend.
At lunchtime today, the nurses began prepping him for surgery and we rushed through to be at the hospital...... for nothing. They were unable to find an anesthetist at such short notice and surgery has now been postponed until tomorrow, Sunday, morning. Surgery will be to investigate and clear the suspected blockage.
The doctor also seems a bit concerned that his left lung has still not re-inflated - I'm not sure what the plan is about this, we will just wait to hear.

Today was another milestone reached in our precious little Matthew's life.
The Prof pushed all of his intestines into his abdomen, removed the bag and stitched him closed.
The operation seemed relatively uneventful compared to last week's major surgery and the Prof and anesthetist came out looking pretty happy.
The Professor is a man of few words, he just walked out of the NICU unit (where they performed the operation due to the fact that it is too risky to move Matthew) gave my son a nod and walked on. The anesthetist stopped to give us and the Paediatrician a brief update, saying it looked fine and all seemed to fit and that was it.
Latest update from the hospital this evening is that he is stable but very swollen. They are leaving all his meds at their current level until the swelling goes down.
They have increased his oxygen on the ventilator too to help minimise him straining to breathe.


They have, however, removed his catheter which makes this granny VERY happy - poor little mite.

Surgery to move the intestines out of the diaphragm and into the abdominal cavity was scheduled for sometime after 5pm on Monday 14/11/2014.
Fortunately my husband and I went home from work slightly early to sort out all the farm animals on our small holding before going to the hospital for the BIG wait.
At about 9pm Prof Beale began what was about a two hour operation, not without it's complications.
The intestines (it seems like only the intestines had moved into the diaphragm, not any other organs too) were removed from the diaphragm and inserted into the abdomen. Unfortunately, Matthew's little abdomen was too small for the intestines and he was unable to breath with the intestines in. Intestines were quickly removed, Matthew was resuscitated and the intestines placed in an external bag.
Due to the fact that the hernia was quite small the doctors were concerned that the intestine might be damaged due to lack of blood flow to it, and the bag became quite useful in permitting the doctors to monitor his intestines for the next few days.
Thereafter began another waiting game.
Tuesday lunchtime brought another stressful time when the doctors once again battled to stabilise Matthew's blood pressure and his blood oxygen levels. Moved him back onto the oscillator.
On the Thursday morning (27/11) he had another bad turn with his heart rate racing up to over 200. They were once again able to stabilise him and later that morning moved him off the oscillator and onto a normal ventilator. It appears that his intestines are fine, have now turned pink and are slowly being naturally absorbed into his body. The only concern now is a continual build up of air outside of his lungs, a chest tube has been inserted to remove this.
The doctors are now slowly pushing his intestines back into his abdomen and hoping to be able to close up his cut tomorrow (1/12/2014).
Still concerned about a build up of air outside of the lungs which is being released via a tube in his chest.
Praying that he will soon be able to be moved off of the ventillator and onto oxygen so that his mommy and daddy can hold him for the first time.

Attachment 1932

After being airlifted from Benoni to Johannesburg Matthew was stabilised and grandparents were permitted to see him briefly.
My first viewing of a very special little boy.
All I could think of when looking at him was how can a little baby who looks so perfect on the outside be so broken on the inside.
The paediatrician looking after him explained what they were going to be doing and shared two of Professor Beale's (the paediatric surgeon who would be operating on him) success stories on babies with CDH.
She did however warn us that there were going to be good days and bad days and all we could do was wait.
He was moved back onto an oscillator (from the paramedic's ventilator) immediately after being admitted to the Parklane and they were able to stabilise him and he had a good first night in ICU.
On Saturday 22/11 at around lunchtime he became very unstable with his blood pressure going sky high and then dropping very low for a while. Checking my phone messages during that time, I have a message from my son, when I asked how Matthew was doing that just says 'very unstable'.
Medication was once again increased and he remained stable through the night and all of Sunday too.
After two stable days, surgery was scheduled for Monday 24/11 sometime after 5pm.

Our precious little grandson, Matthew Marx was born on Thursday, 20/11/2014 at 5:30pm by c-section. The first indication that we had that there was anything wrong with him, was when my son came running up the stairs from the theatre to the waiting room to say that he was battling to breath and had been taken to ICU.
From thereon began our hours of stressing, waiting and praying.
I assumed that it was nothing critical and was in for a BIG surprise when the paediatrician and gynea came into my daughter-in-laws room much later that evening with his xrays to show and explain to us that he had a diaphragmatic hernia which would need to be repaired surgically.
The doctors said that surgery was critical and would have to be performed by a specialist paediatric surgeon and they recommended several from Sandton/Sunninghill (about 40kms from where we were in Benoni).
Friday morning brought about new challenges as Matthew's body began to bloat up from air around his lungs and a decision was made at lunchtime to arrange to have him airlifted to the Parklane Clinic (30kms away). This had its own challenges as by the time the helicopter and paramedic doctor arrived the weather was closing in with a typical highveld afternoon thunderstorm, making it too risky for the chopper to fly.
Eventually the storm closed in on itself and instead of an ambulance trip in Friday afternoon peak-hour traffic, Matthew was safely transported by helicopter from Lakeview Clinic in Benoni to the Parklane Clinic in Johannesburg thanks to a wonderful ER24 paramedic doctor.