New Mom (soft cleft palate baby) - New to Forums

[HollyBee]

Seasons Greetings! I hope everyone is doing well. I was pleased to find SMILES! Wow, what a great thing this is when often we are isolated from others who are going through the same thing. Just working with our public health nurse I've found that I've researched this more than she know already!!!

We are proud parents of a little boy born Nov 1st, 2006, Graeme John, 8 lbs 11 oz 21" long. It was a traumatic delivery for him, he was face up and the suction was used which left him with a nasty bruise on his head, the to add insult to injury he was also meconium, so suctioned right away and whisked off to NICU, the meconium gave him a little pneumo-thorax which cleared with oxygen only in less than 2 days but the suction bruise hurt him and he was having trouble eating, so gradually by mouth and by IV they got him up to full feeds by the time he was 5 days old (2 oz) and we got to go home! During this time his soft cleft palate was found, we were told within an hour of his birth and it was a total surprise to us. Text book pregnancy, great ultrasounds, totally unexpected. After it sunk it we never looked back that this would be a "problem" , it sure does make you find your strength though when some family members were a little more freaked/concerned. Graeme is doing awesome! He's feeding well on expressed breast milk (we're using the Mead Johnson bottles with NUK nipples, not crazy about this system but it works) Graeme is now 11 lbs 8 oz 23 1/4" at 7 weeks and he's rolling over like crazy! We went to the Cleft Clinic in Saskatoon Saskatchewan at the Royal University Hospital where he was born on Dec 20th and were seen by everyone (plastics / speech / genetics/ pediatrics ) we had previously seen the plastic surgeon at 2 weeks of age and were advised that Graeme's repair will be at 6 months. I'm happy for that.

Anyways, have a great holiday, I've learned a lot from you all already just reading on the boards. Take Care

Holly, John and Graeme

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[Daddy's butterfly]

Congratulations! My daughter, Gabriella was also born with a soft cleft palate. Total surprise, we found out about 20 minutes after her birth. She did well on the Mead Johnson bottles too. Your story sounds very similar to mine. What's the surgery date? Stay Strong!
Happy Holidays!
Kristina

[Mum from down under]

Welcome to the group What a rough arrival into the world for Graeme. wishing you & your family all the best. This site has been a god send to me & my family very helpful. Good luck & keep us posted

[HollyBee]

Thanks for the replies.... What have you been doing with feeding with the Mead Johnson bottles, any suggestions anyone? It's looking like I will have to quit pumping in the near future as I'm not getting near the milk that I had been and then switching to formula, my concern is that you can't sterilize the Mead bottles. At this time all I do is wash everything with very hot soap and water, rinse and air dry.... I'm just nervous about switching over to formula, he's had some before it's not the issue of him taking it but just the sterilizing concerns. He will be over 2 months old by the time he's onto formula.

Graeme's surgery will likely be in May (at 6 months) unless they tell us different at his next appointment with the plastic surgeon at 4 months old.

Christmas went well, can't complain. Graeme's skin is so bad right now and so we were to the doctor today to see what we can do. It's just dry scalp/cradle cap/eczema and I'm to use some Nizoral and a prescription that they gave for the eczema spots, so hopefully that works. He just looks so scruffy right now. Our climate doesn't help skin like this either. They weighed him too today and he's 11 lbs 14oz at 8 weeks old today, so he's still gaining well, the eating isn't too big of a problem I guess.

Thanks!
Holly

[Heide]

Hi Holly, congratulations on you little one. sounds like he is doing wonderful with the weight gain. We also used the mead johnson bottles for our little one and still do even though she is almost a year and mainly eating jar baby food. Throughout I have just washed the bottles in hot soapy water and allowed them to air dry. I have not had any problems using this procedure and am surprised how the "disposable" bottles have held up. I also breast pumped for our daughter until she was eating baby food, it was not easy. My recommendation if you want to keep doing it is to dedicate a few days to pumping almost every 2-3 hours to increase your production. Also a nice Medela pump helps. Our insurance covered the cost of pump rental (a nicer one than I could buy) given our daughter's cleft situation lip and palate situation. I am not sure want your health care is like but it may be work looking into. Finally, don't feel guilty if you go to formula, I have a number of friends who used formula from the "get go" and they have good kids too :) all the best for the new year. Heide