Cleft Lip – Part 2 Post Birth

Once we got home we had to get wee man no.2 weighed every week for 6wks and Jenny would call us every week to get an update…

He was able to use standard bottles when we got home which was good as I had ended up with about 10 (planned ahead for expressing knowing I had struggled with breastfeeding wee man no1)! At 5wks old we got our first smile from him, and what a smile it was! It was a huge wide grin and the picture we got remains one of my favourites of him.  At 6wks we visited the cleft clinic and met the whole team (about 20 different people!) including the surgeons, the cleft specialist nurses, speech therapists and dental team to name a few! One of the surgeons told us that he was not surprised that the cleft had not been detected at my scans as it was so minor compared to some.  We were told that wee man no2s operation would be in January sometime.  He got some pictures taken for his file.  He had to do a sleep study at home that night which involved taking a wee machine home that connected to him via a cable with a sticky sensor attached to his big toe.  About a week later Jenny rang to tell us to expect a letter telling us we would need to spend a night in Yorkhill to do a more in depth sleep study as the home one did not have great results.  We went in a couple of weeks later for this and the results (once he eventually slept) were absolutely fine!

 

We got periodic phone calls from the cleft specialist nurses to check on wee man no.2. A week before Christmas and Jenny called to say he had been pencilled in for his lip repair in the 3rd week of January and we would receive a letter with a confirmed date after New Year.  At this point I was still a nice calm mummy! A week or so after New Year and the letter arrived with the confirmed date of the 30th January 2013, we would be admitted on the 29th, operation on the 30th and all being well hone on the 31st.  Well after that I was a wreck whenever I thought about it! I knew he needed the operation but I just wanted him to stay as the baby I gave birth too, not to have to change him.  It was around this time that a Facebook group I had joined became a great comfort, talking to other parents who had been in the same situation and reminded me how lucky I was as my baby will have 2 first smiles for me to treasure.

 

The 3 weeks flew by and before I knew it the 4 of us were on our way to Yorkhill. Wee man no.2 (who was 17wks now) got weighed, they took his length, and the nurse admitting him took a couple of nose swabs to make sure there was no infection.  After that Mr Russell (one of the surgeons) came up to the ward and we signed all the paperwork, wee man no.2 got some more pictures taken for his file.  After that his chest was checked to make sure it was clear for the operation to go ahead. We were told we were first in the list at 9am and it would take a minimum of 2hrs 30 for the operation but could take longer plus he’d have time in recovery before we got him back.  After that the other half and wee man no.1 (who had been having a ball in the wards playroom) went home.  That night we just did not settle well in the hospital, having been used to the wee crib at home the hospital cot must have felt huge and I ended up setting the pram up and walked for miles round the ward.  He eventually settled around midnight and was up again shortly after 2am for his last feed.  After that he had to fast. However once again it was a 2hr walk round the ward to get him to settle! After a few hours sleep we were awake just after 7am.  By 8am they had come round and put cream on his hand to numb it for the canulla and by 8.30 the porter had come for us.  The nurse suggested a favourite teddy or such like to comfort him whilst waiting to be taken into theatre and so he’d have something afterwards.  I opted for his blanket as he liked to rub the label, I wrapped him up as I walked down with the porter and I remember talking so much rubbish to him (nerves had well and truly kicked in). We waited in a wee room with other patients also waiting to go into theatre and one by one we were called.

 

When the wee man’s name was called I just wanted to run.  Instead I got up followed the nurse into the room where he would be given his anaesthetic.  At this point I was given the option of staying for it to be administered or I could go and let them do it.  For me it was no question I was staying.  I had the option of putting him on the bed and holding his hand or sitting on a stool with him on my knee and then giving him a kiss and moving him on to the bed.  I chose to hold him.  The anaesthetic was administered through the canulla, I gave him a quick kiss and cuddle, laid him on the bed with his blanket and I left the room.  The porter was waiting to point me in the right direction back out, he took one look at me and said down the corridor, first left you’ll find a toilet.  I didn’t even make it down the corridor before the tears started! I got my phone out, found a quiet corner and phoned the other half, he was just getting wee man no.1 settled with Granny before getting the train through to Glasgow.  I managed to say that was him in theatre before I just started sobbing uncontrollably.  After about 10mins I calmed down enough to go and get some breakfast.  Other half phoned back to say he was on the train and then mum phoned to check I was okay (other half mentioned the sobbing phone call).  By 10.45 the other half found me pacing the floor of the playroom and we went and sat at the side of the empty cot.  At 11.45 the nurse came over and said she was going to get wee man no.2 from recovery and we could go with her.  We got downstairs and we sat in a wee room while she went and got him. She came back with him wrapped in his blanket, hooked up to a fluids drips.  Once we got back on the ward I got him in my arms.  He looked so different with a complete lip, he was bruised and swollen and grumpy and had stitched and glue where they had done the repair but my baby was back in my arms and he was still my gorgeous wee man! He also surprised everyone by gulping down 6oz of milk when he was usually only taking 4oz! Poor boy must have been starving! He seemed to be struggling with pain a bit and the nurse on the ward told us the he couldn’t be in pain as he’d had a painkiller injection in surgery, and then paracetamol in recovery and ibuprofen just after getting back to the ward. There was a prescription for codeine written in case he needed it but the nurse was adamant he shouldn’t need it.  2 of the cleft specialist nurses came to check on him, took one look and got him the codeine.  Within 10mins he was a different baby! The surgeons who did his surgery came to see him and asked if we were happy with the result.  We couldn’t have been more happy! Come teatime the other half had to head home to get wee man no.1.  Wee man no.2 once again was not loving the cot so I set up the pram and shoogled him back and forwards (I couldn’t walk with him as he was still had his fluids going in and he was attached to a monitor by his big toe).

 

After 12hrs he was done with his fluids so the canulla came out.  By 2am I was nearly falling down I was so tired and hungry, the wee man was not settling at all.  A lovely nursing assistant came over, told me to go and eat and then have a lie down.  She walked around the ward with him and his monitor for an hour and brought him back sound asleep.  We managed 4hrs before it was time to get up.  We were told the surgeons would be up to see us at some point to decided if we could get home.  Before that though the other half and wee man no.1 came to the hospital.  He gave his wee brother a cuddle, made sure he was okay and off he went to play! By tea time the surgeon came up and said as long as we were happy we could go home.  The nurses arranged to get his meds ready to go home and we phoned my dad who was picking us up.

 

That night the wee man would only settle in his pram so he spent 2nights in it again at the end of my bed and would happily stay in it all day! I managed to move him into his wee chair swing and then got him sleeping in his crib again at night.  Jenny came out to visit him around a week post op and she removed the glue that was on his lip.  What a difference! We had to start cleaning the stitches with sterile water and then had cream to rub in for a week.  Once the stitches were out we started massaging the scars 3 times a day with e45.  This became part of our daily routine and we did it that much he does it himself now with lip balm! 9wks after his lip repair we went back to Yorkhill for a check up and they were so happy they said he wouldn’t be back to the clinic until he is 3! He goes the the Glasgow Dental Hospital for a check up every 6mths and sees our regular dentist every 6mths.

 

He is your typical 2 and a half year old now, we already have the appointment through for his 3yr check in October.  He has the best pout of anyone I know and he is still my gorgeous boy! Handing him over that day was the hardest thing I have ever done and as much as I didn’t want him changed (and will never forget how he looked for those first 17 weeks of his life) I can’t imagine him any other way now.  Oh and wee man no.1 is 5 and a half now and if he look at pictures of his brother with his cleft lip he says that him with his funny lip!

 

For more information on cleft lip and palate please visit Clapa (cleft lip and palate association) at http://www.clapa.com/