NAM (Nasoalveolar Molding) & Taping

The day after we got home from the hospital (Oct 26) we had an appointment to meet with Dr. Lacey. It was hard to have to get out of the house so soon after getting home but it was important to get treatment started. Dr. Lacey is the plastic surgeon who will be doing Wyatt's surgeries. At this first appointment he took a look at Wyatt's cleft and reviewed with us the process for repairing it. Wyatt's first surgery will be in January to close the lip and dental ridge. Dr. Lacey told us the cleft was wide, approximately 5 mm. The next time we see the doctor will be one month before surgery. In the meantime he referred us to an orthodontist at the University of Minnesota.

The orthodontist will help prepare Wyatt for surgery by aligning the cleft and getting it as close together as possible using a NAM (Nasoalveolar Molding) device and taping. We met with the orthodontist for the first time when Wyatt was a week and a half old (Nov 2). The orthodontist is amazing. We love her. Wyatt doesn't like her as much but he will when he gets older because she is going to help us prepare for the best possible results with his surgery. At his first appointment the doctor showed us how to tape Wyatt's lip and took impressions to make his NAM (Nasoalveolar Molding) device. We went back the following week (Nov 5) to get his NAM and will have weekly appointments to make adjustments until his surgery.

Here are some pictures of Wyatt getting molds done for his NAM.

  Here is a picture of the NAM.

Finally, here is  picture of Wyatt with his lip taped and his NAM in.

Wyatt wears the tape and the NAM 24/7. The orthodontist recommends changing/cleaning it after every feeding unless it doesn't get too dirty. I didn't like changing it at first because Wyatt doesn't like it and it is just plain gross! Imagine a plate that collects whatever is coming down from his nose and spit up... yuck. I almost gagged a couple of times. We are all getting used to it though. :) It is amazing also what a difference it makes in Wyatt's appearance when he is wearing the tape. We don't really notice the cleft anymore with or without the tape and mold. Sometimes it is hard for me to have that cute face covered up with all that tape and stuff!

Wyatt's Birth Story

Baby Lopez was due October 20th. This day came and went with no baby! Luckily, we wouldnt' have to wait too long. The morning of October 22nd I had my 40 week doctor appointment. Everything was great but the doctor said we needed to come up with a game plan for the end in case the baby didn't come on his own. The doctor didn't advise going past 42 weeks because of the potential risks involved for baby and mom. We were scheduled to be induced Saturday, October 27th but Wyatt had other plans.

The 22nd also happened to be our daughter's 5th birthday and I had taken the day off to celebrate with her. After my doctor appointment we had a family day planned. I look forward to her birthday because it is a more relaxed time for our immediate family to enjoy some time together. We had some special birthday surprises at home and then went to see a movie. Sometime that afternoon I started having contractions. I had been having Braxton Hicks contractions throughout the end of my pregnancy so I didn't pay much attention to them. 

That evening Bella had dance and then we had family over for pizza and ice cream cake. Great Grandpa was in Minnesota for hunting and had surprised us at Bella's dance class and then joined us for dinner and dessert. I continued to have contractions but didn't tell anyone. Everyone left  our house around 8:30 p.m. Once things settled down I noticed the contractions weren't going away and I started timing them. They were becoming more painful and more frequent. I told Mike that I was having contractions and this might be it. I was afraid they would go away but after waiting an hour or so we called Grandma Brenda to let her know what was happening in case she needed to come stay with Bella. She came back over around 11 p.m. and slept at our house in case we needed to leave in the middle of the night.

We decided we should all try to get some sleep. The contractions were getting closer and closer together and more painful. I quickly realized I wasn't going to get any sleep! At 1:30 the contractions were anywhere from 3 to 8 minutes apart. I called the doctor and he said to try to wait until the contractions were closer to 5 minutes apart or the pain became unbearable. At 4 a.m. the contractions were much closer together, averaging from 3 to 5 minutes apart. At 4:30 I couldn't take the pain anymore and told Mike it was time to go. I called the hospital to let them know we were on our way and we were out the door a little after 5 a.m.

We arrived at the hospital at 5:30 a.m. and were put in an observation room. When the nurse checked me at 5:40 a.m. I was 4 cm dilated and 80% effaced. Wyatt was definitely on his way. They got us all checked in and moved us to labor and delivery. At 6:40 a.m. I got an epidural. It was only working on one side so they gave me an extra boost of pain medication which fixed the problem. I didn't feel a thing after that! (Not even the delivery. They even had to tell me when to push. It was great.) At 7:05 a.m. the nurse checked me and I was 5 cm and 90% effaced. The next time they checked at 9:05 a.m. I was 9 to 9.5 cm and 100% effaced. There was just a little ways to go now. At 9:37 a.m. I was 10 cm and 100%. I didn't have the urge to push so we waited a few minutes. At 9:46 a.m. we decided to try pushing. After 1 hour of pushing Wyatt was born October 23rd at 10:46 a.m. Dr. Buss delivered him. He came into the world with his hand by his face. It was funny to see everyone's faces (Mike's, the doctor's, the nurses...), from my perspective, when they saw that little hand by his face on his way out. He was 8 lbs 7 oz and 21 in long. He is beautiful with a full head of dark hair and big cheeks. He has a complete unilateral cleft lip and palate but it didn't matter one bit. Our perfect little man was finally here.

Once Wyatt was here daddy called Bella to let her know her baby brother was born. She was so excited. (When she woke up to find Grandma at her house that morning and found out her brother was on the way she actually cried because she was so happy.) Grandma and Grandpa Lopez brought her up to the hospital to meet him. She came into the delivery room first. It was love at first sight. She then went to get Grandma and Grandpa who were waiting in the hall to introduce them to Wyatt. She is so proud of her little brother. We are all so proud of him and love him so much.

 

 

Preparing for our first hurdle: Feeding

The first hurdle we will face with the cleft is feeding. We know the baby has a cleft lip and probably palate. If it is just the lip there is still a chance he could nurse. If the palate is involved like the doctor suspects this would be a lot more difficult because the baby isn't able to get suction. It was described to us like trying to drink through a straw with a hole in it.

I was able to nurse Bella and it was very hard for me to adjust to the idea this probably won't work with the new baby. I am sad to miss out on this part of the bonding experience. The nutritional benefits of breast milk are also really important to me. The reality is that some of this is out of my control. I am going to have to be open and flexible to make sure I am doing what is best for the baby and myself. The plan is to pump so the baby can still benefit from the nutritional value of breast milk. This is going to be hard work and time consuming! If it works out, it will be worth it.

The bonding part should take care of itself because there will be plenty of love and cuddling going on and it won't just be from Mommy. :)

So now it is time to invest in a really nice pump. Luckily, insurance will pay for the majority of the cost but did I mention the really expensive bottles that insurance doesn't help with? The recommended bottle is made by Madela and is called the Haberman. They are $25 each!!! There are other less expensive options of course. Our cleft team coordinator has said she will come to the hospital when the baby is born to help us get off to as normal a start as possible with feeding. She said we will try some cheaper bottles first and just see what works. Here is what the Haberman looks like:

Haberman Bottle

It has a one way valve and a long nipple that will allow us to squeeze the milk into the baby's mouth. 

Also, because the palate wouldn't be fixed until the baby is a year old we could be looking at a lot of milk and food out the nose! Get ready to hear about these adventures in the future...

Waiting

Waiting. Not much else we can do at this point. We are waiting to meet and welcome the newest member of our family and waiting to see and find out about the extent of the cleft. I haven't posted in a while mostly because there isn't much we can do right now. Also, the past couple of months have been an emotional roller coaster and I just needed a little break. I feel like I have spent a lot of time just processing everything.

Finding out about the cleft had put somewhat of a damper on the pregnancy. We waited so long for this baby (even losing one along the way) and I was really looking forward to enjoying the whole experience. I looked forward to the joy and anticipation that comes with a "normal" pregnancy. I feel like I was robbed! Don't get me wrong, Bella is the most amazing thing that has ever happened to us, but she wasn't exactly planned (...or planned to arrive quite so early in our marriage ...or when I was in the middle of graduate school) and I was so scared and felt so unready to be a parent during my pregnancy with her. Of course this all went away the moment she was born. With this baby I feel I understand better the joy and love that take over and that somehow everything works out. I am excited to multiply the light Bella has brought into our lives by two.

I think it is obvious from that last statement that I am finally getting back to a place where I can be excited for the new little person joining our family again. It is not like that ever really went away but all our fears, concerns and preparations for a baby with a cleft had overshadowed everything else for a while. I even had a little bit of anxiety in the baby section at Target the other day. There are still so many unknowns and it gets hard when I think about the little things that will be "different" like the Twins pacifiers and sippy cups I had purchased early in the pregnancy as Christmas gifts for our little guy. Will he even be able to use them?

Many of my fears and concerns have gotten better over time. I have come to realize the cleft is just a part of who our baby is and just like any other parent with a newborn you have to get to know them and figure out what works best for them and all their little nuances. I do still worry a little about how others will respond to him and how I will in turn respond to them. What do you say to the person standing behind you in line at Target staring (yes, this is my favorite store) or a child's innocent questioning. No matter what challenges are ahead I hope we can handle them with strength and a sense of humor.

Since finding out about the cleft we have done our research, met with the cleft team, and become more knowledgeable about our insurance. So what now? Our first hurdle will be feeding so we will continue learning about feeding a baby with a cleft.

All recent doctor appointments have gone great. I am anxiously awaiting fall and all that comes with it including cooler weather, Bella's birthday, holidays, family gatherings and delicious food. Most of all I am anxious and excited for the arrival of our baby.

We're having a baby!

We are having a baby! The fears and frustrations come and go and sometimes it is hard not to let them overshadow what is most important --we have a beautiful little miracle on the way! A cute and cuddly little babe.

October 20th is getting closer.

Ultrasound #5

Today we had our 5th ultrasound. It was exciting to get another glimpse of our little boy. We were hoping for a 3D ultrasound because this option had been mentioned by someone on the cleft team but we just had a regular one today. The technician said the doctor wanted to see how the baby was growing. I guess you don't need 3D for that! I think they check the growth because of other issues that can be associated with clefts. From what we could see everything looked good. (You know, in our professional opinions.) We should get the results from the doctor in the next couple of days.

The baby made it hard to get a good view of his face. His little arms were in the way! They are such cute little arms. The tech estimated his weight at 3 lbs 4 oz. Kinda fun to think about. At the last 2 or 3 ultrasounds he was measuring to his due date but today he was measuring a few days ahead. We had the same tech who discovered the cleft and it was nice to be able to talk to her again. She confirmed our suspicions that she saw the cleft at the first ultrasound she had done. The doctor she called asked her why she had been looking at the face because that ultrasound was supposed to be a limited one just to get the images they wanted of the heart. She said she always looks at the face and I am really glad she does!

Baby arms:

Utlrasound Update:

We got the results of the ultrasound from the doctor and baby is on track for growth. Good news!

The Icky Stuff

After an email vent a friend suggested I share the icky stuff in my blog too. This is hard for me because I feel guilty enough having some of these thoughts let alone writing them down! Sticking to the facts is so much easier. I can see how the icky feelings are a part of our story too and how it may help others so as a way of easing into this the following is a combination of facts and feelings.

At 20 weeks we had the typical ultrasound you have around that time. The appointment went quick and everything was pretty normal. Bella, our 4 year old, was along and we were excited to get our first look at the baby and maybe even find out what we were having. A boy! We were thrilled! Bella demanded to know his name and we left the clinic calling friends and family with the fun news. The doctor followed up to let us know they weren't able to get a good picture of the four valves of his heart (this is common) so he advised us to go back in for another scan at 24 weeks.

At 24 weeks we had the follow-up scan. They don't tell you anything at the scan. The doctors review the images and then contact you with the results. Later that week the doctor called and left a message to let me know they had the results of the ultrasound. This wasn't a good sign because if all was well they would have just sent me a message electronically. Knowing this I was a little nervous to return the call. When I finally got a hold of the doctor she said the heart looked good but the scan indicated the baby may have a cleft lip. She assured me it was more common than people think and very fixable. Looking back, the tech that did the ultrasound did spend a lot of time on the baby's face but we thought she was just trying to get a good picture for us since we didn't get very good images at the first ultrasound. The doctor said we should have a level II ultrasound to get a better look. The news our baby may have a cleft lip came as a shock. You have this expectation that everything is going to be perfect and when you find out it isn't your whole reality shifts. I cried the first two days straight and just felt so sad. I wondered how this could happen, what I did wrong, etc.

At the level II ultrasound, when I was 25 weeks pregnant, we received the confirmation that our little boy does have a cleft lip and probably palate. At this point I had pretty much cried myself out and was just a little sad. After doing some initial research and reading about others who have been through this I felt a lot better. I tried to learn as much as I could about clefts and how others dealt with the same initial fears and concerns. It helped that we were keeping busy with research, doctor appointments, and making sure insurance would cover the doctor we wanted to use for his surgeries. I also started this blog and that kept me busy and gave me something to do. I felt so strong.

Now all we can do is wait. The reality of the situation is starting to wear on me and I am completely overwhelmed. I can't believe this is happening. Everything with Bella was just so perfect.  (It may be time to lay off the internet research!) I can't look at strangers (babies, children, adults) without trying to find other people with clefts. I look at every baby I see and wonder why my baby's lip didn't close. I am just plain mad. It doesn't seem fair that due to some fluke we have a whole other set of issues to deal with. I have fears about how people will respond to our baby at birth and throughout his life and am sad about all the surgeries he will have to go through.

Deep down I know everything will be fine but I have to acknowledge that there might be some bumps in the road.