Feeding

Feeding will be very different for every baby. Babies are unique to begin with now add the uncertainty of how you will feed them! Daunting I know.

Fortunately there are a lot of great options.
Babies with a only a cleft lip don't always need a special bottle, sometimes they can nurse or suck on a bottle just fine. The cleft palate makes it a little more tricky because they have one big air passage instead of a nasal passage and a mouth.

This makes it impossible for these babies to form suction and be able to breath at the same time.
Your baby will most likely see many different doctors, one of which will be a speech pathologist. In our area the speech pathologist is also the "feeding expert". She will show you haw to use these bottles and hopefully send you home with a couple! They even make visits to the hospital room after the baby is born to check on you to see how feeding is going.
In my experience A feeding tube was never mentioned but I have seen babies who do have them. I think it may be because Isaac did really well right off the bat. As I keep saying every baby will be different and every doctor will have different practices as well, but I believe they try to have the babies use the bottles. They are specially made for babies who can not form suction. They can be used with formula or with breast milk that has been pumped and stored.There are a few that I am aware of  and I am sure there are some out here that I have never seen. I would love to see them.  I tried the first two and Isaac switched back and forth a couple times. If you have heard of or seen one that I did not list here, let me know in the comments. Thanks!

#1- The Haeberman Bottle:
 This bottle has reservoir and a one way flow valve that allows you to squeeze the nipple and slowly squirt milk into the babies mouth. Learning how to use this bottle can be tricky at first. As you can imagine you can't just squirt it right in. You need to watch the baby and see when he is trying to swallow. You end up doing a steady pulse motion and watching out for when you need to  stop so that the baby can rest. It can be frustrating at first and a lot of the time the nurses in the hospital will have never seen anything like it before, and will not be very helpful. If you need help ask them if the have a speech pathologist on call. They may be able to help.

#2 The Pigeon:
 The Pigeon bottle is made in Japan and is typically used after the baby is older than two weeks. It has a faster flow that is a little to much for newborns. This bottle is similar in that it also has a one way flow valve in it. The difference is instead of having to squeeze the bottle for the baby, they are able to do it them selves with their tongue or gums. The top half of the nipple is pretty standard but the bottom half is extra soft so that baby can push on it with his tongue and express milk. The advantage of this one is when they get older and want to hold their own bottle, they can as opposed to the other two bottles (this is Isaacs current favorite). The disadvantage is the thin nipple can wear down quickly with everyday use, so if you try this one and you need to order more, order a few spares.

#3 The Enfamil Cleft Palate Nurser or Mead Johnson bottle:
 This is the bottle I never tried but I have heard of people having great success with it. Instead of a special nipple it is a special bottle. You squeeze the bottle similar to how you squeeze the nipple on the haeberman.


#4Medela Softcup advanced cup feeder:

It used to be that babies would be fed with little medicine cups or Dixie cups after surgery but now they have advanced the cup feeding a bit more. This bottle is the one my doctor gave us for post surgery use so that nothing was touching the surgery sight. But we met with another surgeon before he was born who said she does not use this one but simply lets the babies use the original haberman, and once again it was one very few nurses had even seen before. It is the hardest to get used to for mom and baby because it is not supposed to go in their mouth at all. I looked up videos on Youtube for help but it is all just a matter of you and your baby getting into the swing of it.
One thing that was sort of an ah-hah moment for me was if I pulled it away from his lips after each little pour he could use his lips to keep more formula in, there for spilling less.
Another note: After his second surgery he was six and a half months old and not about to let me hold his bottle for him. So this bottle worked really well for his first surgery but surgery number two had us trying droppers, syringes, and cups.


A dropper similar to this is what I ended up using. I had a little medicine cup on the table next to me and would refill when I needed to. Yes it is a little messier and spills are bound to happen, but no use crying over spilled milk right?! Not to say there was no crying in those ten days( by me and Isaac.) This one worked better than a normal syringe for us because you can hold a little bit more in the little bulb at the top and because it came out smoother than the pushing motion from the plunger on the syringe. And most importantly it was small enough that Isaac didn't really have the desire to hold it because it wasn't similar to his normal pigeon bottle. Don't actually put it in their mouth or let them suck on it. I just put it right at his lips and finally! Peaceful eating! after what seemed like forever, I finally had my boy eating some formula without screaming and crying in frustration.

If you have been trying for a while and cant seem to find something to work, and the frustration tears are welling up in your eyes, as hard as it may be, ask for help. Two brains are better than one and you never know, someone else may come up with a solution or be able to calm them down even if just for a little bit. Let your husband try and go take a shower. Babies can feel a frustrated and tense mom and you can feel like your going to melt down. It can be so hard to see your baby hurting after surgery and to feel so helpless. But it will be okay I remember thinking those ten days would never end, and here we are with a 32 pound 2 year old who you would never guess by looking at him that he once struggled to eat!

Hang in there! Some day it will be a distant memory.

Even More Hindsight

I started writing this blog in 2013 after a brutal 10 days post surgery. I was trying to get my extremely independent 6 month old son to eat out of anything without screaming and crying because he wanted to hold his own bottle. I started it thinking that if I could help one mom get one more minute of sleep by helping to either calm her fears or maybe even her baby it would be worth my time spent.
 A year and a half later I have an amazing, happy, stubborn, and even more independent two year old, as well as a whole new perspective on life.

When Isaac was in the hospital for his palate surgery (6 months) I didn't know it yet but I was pregnant with his little brother Conor Gabriel.
Conor was born 2 weeks early by c-section when I went into labor to find he was breech. Besides the surprise c-section everything went perfect. Conor was and is perfect. We took him home to meet his brothers (JJ and Isaac) and his dog Apollo and tried the best we could to act as if we were sane with three baby boys under the age of Three! (My oldest son and Isaac are 11 months apart.) When he was three and half weeks old he got sick. Doctors said it was simply a stomach bug. Long story short Conor was discharged from the hospital with a "stomach bug" the first time, and the second time we didn't take him home. He was diagnosed with Nectrotizing Enterocolitis. "Nec" (for Short) is a disease, most commonly seen in premature infants, where the walls of the intestines begin to die. Before we knew the severity of the disease and knew we would be there indefinitely depending on how he responded to treatment, My husband and I recall saying to one another "why cant it just be a cleft lip or palate, easy stuff!"

 His doctors did everything they could to help his little body fight this awful disease, but by the time Conor went in for surgery because it had broken through his intestine wall it was to late. His entire intestine had been affected by the Nec.
Conor Gabriel Stenberg died on June 2nd 2014

He is missed more than words can say, and loved even more than that. But Conor is our entire families reminder of how fragile life is, and what a blessing each day is to be with a family you love.
Looking at Isaac I see a strong willed boy who can do anything he wants in this world. Not all people have that ability. But There is a bigger plan for all of us, and if we can possibly not mess it up here on earth, then someday we might see God smiling on the work we have done and the trials we have faced. Then no disability, or birth defect, or setback will matter anymore. We can all have Happiness forever, like Conor.

I guess what I'm trying to say is Isaac is a blessing to us and so is Conor. And All of our sons are reminders to us that God will never give you anything that you can not handle.

The Basics

Here is a bullet list of the things that I wish I had found just on that first day of frantic internet searching.

• Cleft lips and/or palates are not open wounds.

• Most Children will have little to no sign that they ever had one by the age of two

• The biggest concern for these babies is getting them to eat. Typically they can not nurse or form suction on a normal bottle. It is possible with an Isolated cleft lip but not if a cleft palate is present as well.

• The statistics that you see on television commercials , such as the one stating that one in ten of these children will die, is taken from primarily third world countries or areas where they would not have access to many, (if any) resources or healthcare.

• You will hear different statistics everywhere, but the one I have heard the most often is that 1 in 600 babies will be born with some form of a cleft.

• The type of surgeon who will most likely make the repairs is called a plastic surgeon but will specialize in craniofacial procedures ( ideally pediatric craniofacial).

• Looking at pictures on the internet to try to find one that will show you what you can expect your baby to look like is not possible. Each type can range greatly in severity.

• Life is so fragile and a pregnancy so delicate, of all the things that can go wrong...a baby with a cleft lip and a palate is a blessing.

Isaac Gregory

   From the time we become pregnant, us mothers have a way of planning for everything. We want this stroller, these bottles and those pacifiers. Little do we know (more so with our first child), planning what babies will use, wear and eat, is pretty much impossible.

I planned on using the free fancy Similac bottles I had got along with formula for my older son,(JJ) for my second son Isaac.

We found out he was a boy at 14 weeks along in my pregnancy. At 28 weeks we found out he would be born with a bilateral cleft lip. A week later the hospital confirmed he had a cleft palate as well. I remember how it felt to find out that my little boy I had been envisioning would not be what I thought. The only knowledge I ever had of cleft lips or palates was the Operation Smile commercials I had seen on TV, and that my husband Joey had two cousins who had some form of a cleft.

We both new that it would be very hard to have our little boy go through multiple surgeries before even reaching the age of one. Between the two of us we had had some wisdom teeth pulled and a few stiches. To think of all that our son would have to go through was daunting.

Once we got home we did what I imagine many parents would do... we took to the internet. So here I am to create a compilation of information I wish I had found that day.

If I can answer one fathers question, or calm one mother's fears just a little bit it will be worth it.