August 2nd, 2018
What a busy day! My glucose screening (I passed!) and 24 week appointment with OB (positive discussion) in the morning and appointments with Fetal Medicine, Speech Pathology and Plastic Surgery in the afternoon. One thing that I felt I heard repeatedly throughout the day from these appointments was that while our road won't be easy, the hardest part is over. The initial news and shock of the diagnosis is often the hardest part for families and from there on out, the professional support system built within the Cleft Team will work their magic and be there for us every step of the way - how awesome is that?! Overall, it was a good day and I'm grateful for the professionals we met with and the amazing care they provide!
Appt. w/ Fetal Medicine:
I was extremely nervous going into this appointment. The last time I was there, well, you know. Both the perinatologist and sonographer made comments about the observable shock I was in at the last appointment, perhaps it was even worse than my recollection?
Baby Boy Nelson was not about having his picture taken, making it very difficult to get a good face shot. There were a couple photos that were able to showcase the cleft lip and palate (confirmed cleft palate) and while I asked several times for answers on the severity of the cleft, they are very skilled at not providing direct answers to these questions. Like I've read over and over again on websites and blogs of other parents, the severity of the cleft is really unknown until birth. This unknown is extremely difficult to accept, especially when my patience tolerance is naturally low.
The good news to this appointment was that the perinatologist was very confident that the cleft is an isolated occurance with no other physical or developmental concerns presenting themselves - HALLELUJUA, answers to my prayers! He was measuring and weighing the the 86% so I'm sure Derek is already hoping for a future heavyweight wrestling champion :) We will return in 8 weeks for another appointment.
Speech Pathology:
The speech pathologist was wonderful, extremely informative on feeding options and styles for our baby and provided assurance that we won't leave the hospital without feeling comfortable and competent in getting proper nutrition to our little one. I had some questions prepared for the speech pathologist and she gave better than expected answers to them - prayers answered again!
Appt. with Plastic Surgery:
The plastic surgeon was one of my most anticipated appointments of the day as all of the cosmetic and most of the functional aspects of the cleft diagnosis and repair lie with them. It is very important that I trust the plastic surgeon both as a person and as a professional in his field, so this consultation appointment had a lot riding on it and I came armed and ready with questions!
What a busy day! My glucose screening (I passed!) and 24 week appointment with OB (positive discussion) in the morning and appointments with Fetal Medicine, Speech Pathology and Plastic Surgery in the afternoon. One thing that I felt I heard repeatedly throughout the day from these appointments was that while our road won't be easy, the hardest part is over. The initial news and shock of the diagnosis is often the hardest part for families and from there on out, the professional support system built within the Cleft Team will work their magic and be there for us every step of the way - how awesome is that?! Overall, it was a good day and I'm grateful for the professionals we met with and the amazing care they provide!
Appt. w/ Fetal Medicine:
I was extremely nervous going into this appointment. The last time I was there, well, you know. Both the perinatologist and sonographer made comments about the observable shock I was in at the last appointment, perhaps it was even worse than my recollection?
Baby Boy Nelson was not about having his picture taken, making it very difficult to get a good face shot. There were a couple photos that were able to showcase the cleft lip and palate (confirmed cleft palate) and while I asked several times for answers on the severity of the cleft, they are very skilled at not providing direct answers to these questions. Like I've read over and over again on websites and blogs of other parents, the severity of the cleft is really unknown until birth. This unknown is extremely difficult to accept, especially when my patience tolerance is naturally low.
The good news to this appointment was that the perinatologist was very confident that the cleft is an isolated occurance with no other physical or developmental concerns presenting themselves - HALLELUJUA, answers to my prayers! He was measuring and weighing the the 86% so I'm sure Derek is already hoping for a future heavyweight wrestling champion :) We will return in 8 weeks for another appointment.
Speech Pathology:
The speech pathologist was wonderful, extremely informative on feeding options and styles for our baby and provided assurance that we won't leave the hospital without feeling comfortable and competent in getting proper nutrition to our little one. I had some questions prepared for the speech pathologist and she gave better than expected answers to them - prayers answered again!
- How will we feed our baby? There are 3 bottle/nipple types that were provided as options. They will assist us in figuring out which one best suits the little guy through trial and error once he is born. The advise us not making any purchases of bottles/nipples until we are discharged from the hospital, but assured us that while the costs are more expensive than most normal bottles, were talking $30 tops for the 'Cadillac' of bottles for babies with cleft. The biggest stressors were that 'gravity is our friend' in regards to feeding the baby, so will need to keep him upright when feeding and that extra breaks to burp will be necessary due to them swallowing more air during feeds. One concern I had in exploring the internet was the length of time it required feed a baby with a cleft, but the speech pathologist assured us that once we found the right bottle and technique, feeding our baby would not take any longer than any other newborn - Can I get an AMEN?! AMEN!!!
- What is the hospital's policy on the NICU? Will our baby automatically go to the NICU due to the cleft and feeding obstacles? Any baby born before 35 weeks will be referred to the NICU, whereas any baby born after 35 weeks should remain in the newborn nursery unless complications present themselves. Many of you know that we spent 61 days in the NICU with the twins and while we are SO GRATEFUL for the NICU staff and their life-saving skills, we would really like to avoid a return visit with this guy. I am praying HARD for a full-term pregnancy!!! It was good to know that he wouldn't be directly referred to NICU simply because of the cleft.
- What does follow-up care look like? She mentioned a referral to a local speech therapist, as well as involvement with the AEA's Early ACCESS program where we would have in-home support and therapy for the first three years.
Appt. with Plastic Surgery:
The plastic surgeon was one of my most anticipated appointments of the day as all of the cosmetic and most of the functional aspects of the cleft diagnosis and repair lie with them. It is very important that I trust the plastic surgeon both as a person and as a professional in his field, so this consultation appointment had a lot riding on it and I came armed and ready with questions!
- What is your experience with cleft lip and palate repair? Do you have before and after photos to share? Our doctor stressed the importance of practice in cleft repair being the best indicator for successful operations. While he typically only has one cleft repair a month in Sioux Falls, he had more frequent experience when he lived and worked on the east coast and assisted with Operation Smile efforts for several years. He does have before and after photos available for our viewing and said he would email a slideshow to us, TBD.
- When would be our first visit/consultation with you be after delivery? Our doctor said he would be notified of the birth and would come visit us while we were still in the Birth Center to do his evaluation and consultation.
- What pre-surgical techniques do you recommend and why? If the cleft is small, our doctor did not advise any sort of pre-surgical methods. If the cleft is larger, he prefers the taping method versus the NAM or Latham (two more intensive pre-surgical techniques). He claims that research is not proving that either of those two methods are delivering the results that would make the efforts of the devices worth it and that taping can provide results at a lesser invasive level.
- What would this pre-surgical technique require in terms of appointments leading up to lip surgery? He would see us once every 3-4 weeks.
- What is your advised timeline for surgeries?
Pre-surgical Taping (if necessary): 0-4 months
Cleft lip surgery: 4-6 months
Cleft palate surgery: 12 months
Alveolar bone graphing operation (if necessary): 8-9 years old
Rhinoplasty or any cosmetic plastic surgery repair (if necessary): Adolescence
- When do you advise putting in ear tubes? Our doctor said that he places those more often during the cleft palate surgery at 12 months, but uses an ENT's recommendation and will place them during the cleft lip surgery at 4-6 months if that is advised by the ENT.
- Due to the Cleft Team overseeing the care of the child to 18 years of age, it would be my preference to have the same care team members participating from birth to 18. What is your professional plan? Our doctor quoted us at 10 years before retirement, not planning to leave to go anywhere else. He assured us that when the time comes, he would not leave without ensuring we were referred to someone he was confident in their abilities.
PROS
- Convenience. This is the closest distance/quickest drive time in comparison to the other hospitals in quest.
- Our doctor's pre-surgical method does not require weekly trips for appointments.
CONS
- While he once had a lot more frequent experience with cleft surgeries, he has far fewer opportunities to 'practice' them the last couple of years. Could he perhaps be out of practice or not be up to speed in new/updated methods and procedure techniques?
- In my personal research, there seems to be a large professional community and parent support for the NAM pre-surgical technique versus the taping method of my doctor. The NAM is far more intensive and requires a huge commitment by parents, but the results indicate its worth the efforts. He claims that studies aren't showing this, how can I decipher what is factual?
- His comfort in use of rhinoplasty and other cosmetic repair in adolescence was of course something that I would think be an option for any child with a cleft, but I was a bit more concerned that the lack of use of a NAM device may lead to higher incidences of needing these corrections in adolescence. The surgery in the adolescent years would not be the end of the world, but it would be my preference to avoid this through pre-surgical techniques in the early years.
Overall, I was pleased with our appointment with the plastic surgeon. He was friendly, sounded competent and appeared confident in tackling whatever severity of cleft deformity our child will have. We have a consultation appointment with Mayo Hospital in September so will compare and contrast our visits to determine which care team we will select for our child. Until then, I will thoroughly enjoy every kick and movement the baby makes, I will pray religiously for the best possible outcome for our child and our family and we will anxiously await meeting our little bundle of joy <3. Thank you for tagging along with us on this journey!