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 alt
hough 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.
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!
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!
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.
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.
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.)
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.
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