Our First Check up

Thursday 4th October.
Today I woke up and felt like I'd been hit by a freight train. We think we've got to the point where we're emotionally exhausted. I've been going into the office and trying to put in a few hours each day since last week, although I just can't seem to get my head into 'work mode'. So today I phoned in sick! and I won't be in tomorrow either as we're taking Tyler to the paediatrician and then to the surgeon for a check up on the colostomy. I feel guilty about missing so much work and need to constantly remind myself that it's ok, we're going through a tough time.

This would be a good opportunity to mention how grateful I am to my dad (Lewis), my boet Andrew, my P.A. Linda and to Ann for covering for me while I've been 'out of action'. When I got back to the office after two weeks, all my work was completely up to date! Linda is a star, and no you can't poach her, sorry Delon.


Friday 5th Oct
Our first appointment today was with the paediatrician. Dr DuToit checked Tyler over and was very happy with his progress. The jaundice was looking good and so too was his muscle tone. Then we put him on the scale. Doh! 2.1 kgs. Tyler has lost 300 grams in one week. This is understandable as his little body was very puffy when we left the hospital last week, obviously fluid retention from all the drips.

So the doctor mentions something about him needing to pick up 150 grams a week and we'll have to weigh him again next week Friday. He also mumbled something to the effect of "....before we re-admit him....". I didn't hear that bit (selective hearing syndrome you know). Danni mentioned it in the car on the way to our next appointment and we both decided that she'll have to go into turbo feeding mode from now on. There's no way we want to go backwards.

Dr van Niekerk who performed the colostomy had a 2.5 second look at the stomer and said "it looks fine". He then spent a few minutes explaining the colostomy process to us.

When Tyler weighs between 3-4 kilograms, he will do the second operation which is basically a preparation for the 3rd op. We were initially under the impression that the bad piece of colon was removed during the colostomy. This was not the case. In the second operation, the bad piece is honed or bored out so that it can act as a sleeve when the colon is re-attached (3rd op.) The waiting period is between the 2nd and 3rd op is 6 weeks. Success rate on this procedure is 95%
We're insisting on 100%

The bit we don't like is that he "should have control over his bowel movements by the time he goes to school". Another thing I've read about is that once a colostomy is reversed, a really bad rash develops around the bum area which apparently takes months to clear up.

Oh my, we have no idea what lies ahead! maybe that's a good thing. and that is exactly how we're approaching this adventure:-

We are not going to immerse ourselves in Down Syndrome! The three of us will learn together as the challenges are placed before us. With God's help we are going to tackle each obstacle when we reach it.

Time to go home and wind up the Turbo charger.

Danni's brother James arrives from the UK tonight. He has been really anxcious to get here to "help" us out.

Fri 28th Sept - We're Going Home!

I'm up relatively early and start going through the checklist of items I need to take with to the hospital. Today's the day we get to take our 'little bundle of joy' home. Actually it's more like our little demanding bundle! (of joy!). Checklist: 1 x Baby car seat, 1x preemie head support because either he's too small for the seat or the seat is too big for him, depends which way you look at it. Having mentioned that, It's amusing how people look at Tyler and say "oh he's so tiny" when at the same time we look at other babies and think "they're so big!". So in goes the carefully selected baby grow (one of the few which almost fit him) with matching beanie, a receiving blanket and I'm off.

I just need to make a quick stop to get a card and chocolates for the Nurses but to my dissapointment the shops are still closed. I pace up and down with ants in my pants. up down, up down, one coffee take away from wimpy, up down, up down. Shops open and two minutes later I'm on my way.

I arrive at the hospital to find Danni still in her pajamas and casually having breakfast. I don't know why but I was just so keen to get going. While Danni faffed with her packing, I went to settle the lodging account and did a few trips to the car with flowers, teddy bears and other items.

We then head off to NNICU. I cannot explain what a good feeling we had removing all the sensors, tubes and attachments from Tyler's little body. He started to look like a human being again. We were going to bath him but didn't want to drag this process on for too long and so decided we would do it at home. One last look at his R 7000.00 / day accommodation,a quick weigh in (2.42 kg), a few good byes and we're off!

We drive home as if we had just bought a brand new Aston Martin (with extreme care). "Should I take Atterbury or go the back road past Glen Village, Love?".

Initially being home felt quite daunting. No monitors and no nurses, just the three of us trying to figure things out.

So, We're regular parents with a regular baby trying to get into some sort of a routine. Only difference for now is that there's a colostomy bag which needs to be attended to regularly and changed every second day. Other than that, it's parenting as usual (we think!)

Mon 24th - Thur 27th

Under Construction. I'm will catch up on this piece shortly.

Wed 12th - Sun 23rd Sep '07

Welcome to the World!

Our Precious little angel was born today! Tyler Hilton Coleman. Weighing 2.2kgs and measuring 44cm. After the dust had settled, the paediatrician come to talk to Danni and myself in the ward. He said that there were one or two things that he wanted a genetic specialist to have a look at to determine why Tyler's weight was consistently behind throughout the pregnancy. Little did we know at the time that our paediatrician was suspecting that our baby was Down's Syndrome (DS).

Thursday 13th
Danni spent today trying to breast feed (What a mission!) I'm convinced that there's nothing natural about breastfeeding! Dad spent the day being all awkward around the baby (as I'm sure most first time dad's are). No dirty nappies to change today, maybe that first nasty nappy will arrive during the night when I'm not there and won't have to change it!

Friday 14th
Today all of Danni's drips and pipes are removed and although she's in some pain and discomfort, she's at least more mobile. Up until now, baby has been spending most of his time in an incubator in the baby room and Danni has only seen him for a total of about 2.5 hours since he was born. We had decided that today was the day we were going to insist on having Tyler with us in the room so that we could try and get the breast feeding right and bond with him a little. After all we're supposed to go home tomorrow!

The Genetic Paediatrician arrived late afternoon to have a look at baby. I was out at the cafeteria getting something to eat. She spent around 5 minutes checking Tyler over and then asked Danni where I was because she needed to talk with us. Just after I got back to the room, the doctor entered with one of the senior nurses and they drew the curtain around the bed. This did not look good! She blurted out that she was 100% convinced that we had a DS baby. She then slapped a book on the bed opened to a page full of photos of DS children (how tactful!). You can imagine the shock. Before we got the news, we had planned to take a few pictures, including the classic 'baby in dad's hand' pic and email them to everyone. We didn't feel like doing that anymore and really battled to accept that our child wasn't normal like everyone else's. After all he looked perfectly normal! So the grieving sets in and we take it in turns to let out the emotions.

Breastfeeding still not happening!

I'm invited to spend the night there which we were very grateful for. I ended up Staying with Danni for 3 nights which was great. I really wasn't keen to leave her alone to stew and work herself into a state. Truth be told, I needed her support just as much.

PM: Feeding is not happening! He's not swallowing and there appears to be some black gunk in his mouth. The amniotic fluid which he swallowed during birth needs to be extracted from his stomach.

So it's off to Neonatal ICU. Darn!

Saturday and Sunday:

We spent these two days just sitting with him and Danni kept trying to breastfeed. His 'Billiruben' blood count was around 250 so they have to put him under the lights for phototherapy to get the jaundice under control.

Monday 17th:
There still haven't been any dirty nappies! so doctor orders an x-ray of his abdomen. Tyler's colon has blown up like a balloon. To help calm our nerves, I joked that all he needed was a big fart!

Doctors have diagnosed 'Hirschprung Disease' which means that part of his colon does not have any nerves to initiate bowel movements. We're being transferred to Kloof Hospital where top paediatric surgeon Dr van Niekerk will do a colostomy. Ambulance arrives and Mom and baby drive off with Dad in tow. At 4:30 I'm signing piles of authorisations and indemnity forms while the hospitals 'case manager' gets all the authorisation numbers from the medical aid.

At 17h00 we're whisked off to theatre. We kiss him goodbye 'see you later bru' then turn around and exit the theatre just in time before we start wailing in the passage. By 19h50 we're starting to get a bit worried so go and sit outside the ICU unit just incase they forgot to call us. Two minutes later we're at his bedside and feeling very relieved that the operation went well (thank you for all the prayers). So for the next 3 - 4 months Tyler's sporting a plastic 'poo' bag on the side of his belly, after which he'll need another one or two ops to reverse the process (the affected part of the colon was removed).

Tuesday - still at Kloof NNICU - An uneventful day. Maybe because dad kept saying ' No more surprises bru, enough already!'.

Wednesday 19th
We're going home! To Pretoria East NNICU that is. We're quite excited about this. The sisters in PTA East NNICU are fantastic and we feel like we're part of the family. Tyler has also gained a real following here. The sisters are often arguing about which one of them is his girlfriend. There was a bit of a homecoming when we arrived back. Did I mention that the staff are awesome, so caring and compassionate.

Danni is lodging here again which is better as see needs to express every 3 hours then dart into the NNICU just in time for the next feed. We hardly sit still in this place. Between visiting baby, Friends and Family visiting us and me running back and forth between hospital and home.


Thursday 20th
Danni's mom arrived from C.T. today which is really great. Nothing like having your mommy around in a difficult time like this! Ask me, I know.

Before each feed (through a pipe which goes up his nose and into the stomach), a syringe is used to first extract the contents of the stomach. this way they can determine how much milk his system is absorbing. We learned this morning that absolutely nothing had been absorbed since they started feeding him 12 hours ago. On top of that, the paediatrician has ordered x-rays of the chest cavity!

What now, are we going backwards again? I thought I said no more surprises!

After chatting with one of the ICU sisters, we felt a lot more at ease. She said that it can take up to 10 days before his little system starts functioning normally again. (Slight relief).

This evening we found out that the chest x-rays show signs of pneumonia and a stronger antibiotic has been prescribed. Apparently we mustn't be too concerned about it at this stage.

Tyler is constantly receiving phototherapy to control the jaundice (billi ruben) count. At one stage it shot up to 330 which is not good. As far as I understand, they start considering a blood transfusion at 400.

The results of the blood tests came back today. They were positive. DS confirmed!

Our immediate concern is his health and for now the DS will have to take a back seat.

Friday 21st
Happy anniversary! the sms's were beeping. Oh yes, happy anniversary love! (We had both forgotten) even after Tess had reminded me yesterday. We've been a bit out of sorts lately. Probably starting to feel emotionally drained.

Today has been a good day! Tyler has started absorbing his food and seems to be a lot more awake and active.

Saturday 22nd
Today has been a good day. Tyler had his first bath since Sunday. I kind of insisted on this as his head is all salty and that's not lekker when I kiss him. Yes, dad steals kisses! He was splashing around in the bath like a little frog. He really loved it!

Yeehaa! Danni managed to get in a successful breast feed. This is good progress!

Jaundice count has dropped all the way down to 130, so no more phototherapy for now and we can pack his sunglasses away!

Sunday 23rd
Another good day. Looks like we may be on the road to recovery. No success with the breast feeding so far today but we'll get there, or at least Danni and Tyler will (not my dept.)

So that's our news so far. Thank you to all of you for your fantastic support and for all the prayers. We are staying positive and are going to embrace the challenge which lies ahead. It's going to be a long road, but this little guy is already bringing so much joy to all of us.

Please see archives on the left for access to the next post.