So tomorrow is our big day. When we found out about Lily's cleft on Jan. 26th, 2012 the surgery date could not come soon enough. Well now we are here. I am not going to lie, I have had a LOT of anxiety about this. And I keep thinking, be anxious about nothing, but in prayer and supplication give God the Glory (in my own wording, ha). In the last week I have really tried to make that my heart cry. It has been so hard to thank God for the cleft. Such a hard thing to do because I still don't know how this is Glorifying him. One of the ladies I work with was talking with me and we came to agree that not always do we know how this is Glorifying. Sometimes just words that people read can further the Kindom of God, so who knows, maybe you are reading this now and God will touch your heart and call you to be a true child of his. This journey has made me grow closer to God than I ever would have had this not happened. Had we had a little girl that required no medical intervention, I would have been going along just as I was before. Never really, TRUELY, relying on God. I have had to lean on him more in the last 8 months than I have my entire life. I know God put this in our path to strengthen our relationship with him. Again, while it hasn't been easy, everytime I give everything over to him I feel a sense of relief that only God himself can provide. It is a healing that surpasses all understanding. I have been reading over Bible verses provided to me by some very dear people. I will continue to meditate on those and will keep those for any future surgeries Lily has as well as to give her one day. What a special thing! I have had such a peace about surgery this morning and I give Glory to God for that! I know in my heart he will bless her and give her strenth for any obsticals she will have to overcome if she always trust's in the Lord. As a woman who has put her faith in my Lord, Jesus Christ, I know that things will not always be easy (obviously) but that he will carry me through anything life throws at me. This will include tomorrow as I hand over my baby girl to the surgeon. He will not only be with me for comfort but he will be holding my baby girl in his arms and giving her comfort. He will also be guiding the doctors and nurses caring for her in the OR and recovory. Please keep us and everyone that will be caring for Lily in your prayers tomorrow! We so much appreciate it.
If you wonder how I have this incredible faith let me tell you. First, I knew I had sined. Even a simple little white lie is a sin. We all are sinners. All have sinned and fallen short of the Glory of God (Rom 3:23). We maybe good people but think of it like this. If someone you loved dearly were killed by a drunk driver and they went before the judge and the judge said, "well you have done all other good things in your life and even though you messed up this once I will let you go", would you think that was a fair judge? No. You must pay the penalty for your wrong doing. Same with God, he has to be a fair judge, plain and simple. Second, I knew I had to confess with my mouth to God that I was a sinner. You have to do that because you have to admit to God and yourself that you are guilty. If you confess with your mouth the Lord Jesus and believe in your heart that God has raised Him from the dead, you will be saved (Rom 10:9). If you do this God will forgive you. It won't be an easy path in life but you will always have God on your side! For God so Loved the world that he gave his only begotten Son, that whoever believes in Him should not perish but have everlasting life. For God did not send His son into the world to condemn the world, but that the world through Him might be saved (John 3:16-17). If you have any questions please let me know. I share this because like I said, I don't know why God gave us this obsticle but though this I am going to seek how to give Him the Glory though it all! I love you friends, and again thank you for your continued prayers!
Kari
Tuesday, October 23, 2012
Thursday, September 13, 2012
Cleft Mommies are STRONG!
This blog post is a little rambled, sorry in advance!
I have had to pray a lot over the last few months! I am saying that because I have recently relized that I have formed a new tough skin for my daughter. Anyone who has a child that has something "different" about them I am sure feels the same way. People stare at your child and don't just ask a question. People whose kids say something tell their kids, shhh don't say anything. My daughter is a sweet human child! Please people, ASK! Working at a childrens hospital has taught me so much, but having a child with a "difference" has taught me so much more! It has taught me empathy like I have never known before.
It has been a tough few months because I have had to learn how to accept things. There were so many people I knew having babies. They were all "normal" babies. People would be doing simple things like nursing their babies and my heart would cry on the inside. I would be at church or other places with lots of new mommies with babies and people always would say how beautiful the other babies were and just say, oh sweet baby about my daughter. Again my heart would cry. I know how beautiful my daughter is, I wish others would see it too! I was sick of "explaining" my daughter to everyone I meet instead of just saying this is my daughter Lily.
I have had thoughts of, Why God? Why can't I just have normalcy? Then I am reminded that this is my normalcy. This is what God knew we could handle. God gave us this beautiful little girl and he trusts that we will raise her to be a woman of virtue. A girl/woman who knows how beautiful she is inside and out. My prayer for her is that she seeks God as her number one! That she knows everything "normal". That she does dance and plays dress up like other little girls. I know she will and that is more than some parents can say, so for that I am ever so greatful! She is such an amazing girl and her personality so far is so very amazing. I know that God gave her this personality to overcome any difficulties she incurrs in life. She will have this tough skin too, I know it. This will make her the woman she will become.
Lily, when you read this someday I want you to know:
-Your Creator made you this way for a purpose God says you are Fearfully and Wonderfully made! And you are!
-Your family loves you unconditionally.
-You will meet people who don't understand things about you, but that happens to everyone for one reason or another. Your Mom was the "chubby kid" in school. Your Dad had some pretty thick glasses in school. Sometimes people say hurtful things but you will overcome it.
-Your brother has always been so proud to be your big brother! Everyone he meets he introduces you to them. He says this is my beautiful (yes he uses that word everytime!) sister Lily. She has a cleft lip. I am her big brother. It truely is the sweetest thing!
We Love our children and hope others see how beautiful they are too. I am sure that every parent feels this way and that is why my "empathy" has changed more than ever!
I have had to pray a lot over the last few months! I am saying that because I have recently relized that I have formed a new tough skin for my daughter. Anyone who has a child that has something "different" about them I am sure feels the same way. People stare at your child and don't just ask a question. People whose kids say something tell their kids, shhh don't say anything. My daughter is a sweet human child! Please people, ASK! Working at a childrens hospital has taught me so much, but having a child with a "difference" has taught me so much more! It has taught me empathy like I have never known before.
It has been a tough few months because I have had to learn how to accept things. There were so many people I knew having babies. They were all "normal" babies. People would be doing simple things like nursing their babies and my heart would cry on the inside. I would be at church or other places with lots of new mommies with babies and people always would say how beautiful the other babies were and just say, oh sweet baby about my daughter. Again my heart would cry. I know how beautiful my daughter is, I wish others would see it too! I was sick of "explaining" my daughter to everyone I meet instead of just saying this is my daughter Lily.
I have had thoughts of, Why God? Why can't I just have normalcy? Then I am reminded that this is my normalcy. This is what God knew we could handle. God gave us this beautiful little girl and he trusts that we will raise her to be a woman of virtue. A girl/woman who knows how beautiful she is inside and out. My prayer for her is that she seeks God as her number one! That she knows everything "normal". That she does dance and plays dress up like other little girls. I know she will and that is more than some parents can say, so for that I am ever so greatful! She is such an amazing girl and her personality so far is so very amazing. I know that God gave her this personality to overcome any difficulties she incurrs in life. She will have this tough skin too, I know it. This will make her the woman she will become.
Lily, when you read this someday I want you to know:
-Your Creator made you this way for a purpose God says you are Fearfully and Wonderfully made! And you are!
-Your family loves you unconditionally.
-You will meet people who don't understand things about you, but that happens to everyone for one reason or another. Your Mom was the "chubby kid" in school. Your Dad had some pretty thick glasses in school. Sometimes people say hurtful things but you will overcome it.
-Your brother has always been so proud to be your big brother! Everyone he meets he introduces you to them. He says this is my beautiful (yes he uses that word everytime!) sister Lily. She has a cleft lip. I am her big brother. It truely is the sweetest thing!
We Love our children and hope others see how beautiful they are too. I am sure that every parent feels this way and that is why my "empathy" has changed more than ever!
NAM Journey
I have had so many people ask about what the NAM is. Well I am going to tell everyone now.
What is Nasoalveolar Molding?
Nasoalveolar molding (NAM) is a non-surgical treatment for shaping the gums, lip and nostrils before cleft lip and palate surgery. The goal of NAM is to reduce the severity of the cleft before surgical repair by the plastic surgeon. Surgery is performed after the molding is finished, approximately three to six months after birth.
NAM is used mainly for children with large clefts or deformity of the nostrils. In the past, fixing a large cleft required multiple surgeries. The first procedure pulled the lip together, a second improved the position of the lip, another two would be for the nose, then another would close the palate, and so on. NAM allows the orthodontist and surgeon to improve a large cleft in the months before surgery. A smaller cleft can help the surgeon obtain improved shape of the nose and a thinner scar in only one surgery. A better result in the first surgery, means fewer surgeries later in childhood.
How does NAM work?
NAM is accomplished with an orthodontist. Your child will be fitted with a custom-made molding plate that looks like an orthodontic retainer. The device is attached with small orthodontic rubber bands that are taped to the baby’s face.
The molding plate causes no pain and after the first few days the plate usually doesn’t bother babies at all; it’s an accepted part of their face. The molding plate helps gently direct the growth of the gums. The baby wears the molding plate 24 hours per day, seven days a week, including during feeding. Parents change the tape and clean the molding plate daily as needed.
The orthodontist gently adjusts the shape of the molding plate every one to two weeks, sculpting the plastic. Each adjustment is very small, but it starts to guide the baby’s gums and nose as they are growing. Each appointment takes about 60 minutes. After the cleft is small enough, a post is attached to the molding plate and placed in the nostril. This post is then gently adjusted to lift up the nose and open the nostril.
By the time of surgery, the nose has been lifted and narrowed, the gap in the gums is smaller, and the lips are closer together. A smaller gap means less tension when the surgeon closes the cleft.
This information was taken from our Orthodontist, Dr. Dustin Burleson. Yes, Lily sees an Orthodontist already! LOL. We started the NAM process when she was 6 weeks old. We decided to do NAM for shapment of her nostrils and stretching of her nose to give her a point instead of a mushroom nose. This treatment is not for everyone! It is very expensive (treatment not covered by insurance) and we have weekly appointments with the orthodontist where he adjusts the NAM. Not to mention all the taping and constant cleaning. We feel like this is something we can do to help her have the very best outcome and so far our Orthodontist and Plastic Surgeon are VERY hapy with the results. And we still have 6 weeks left before surgery. I will attatch a few photos. Please ask any questions about our process. I love to try and answer questions!
You can see in the first two pictures what she looked like pre-NAM and in the last picture you can see how much more her nostrils have opened and the middle piece called the premaxilla is pushed a lot further back. We are pleased with the results so far and both the Plastic Surgeon and Orthodontist have said she has responded better than they have ever seen! Praise the Lord. This is something we have prayed for as well and I tell you what, God has answered EVERY one of my prayers for my daughter! Thank you LORD!
What is Nasoalveolar Molding?
Nasoalveolar molding (NAM) is a non-surgical treatment for shaping the gums, lip and nostrils before cleft lip and palate surgery. The goal of NAM is to reduce the severity of the cleft before surgical repair by the plastic surgeon. Surgery is performed after the molding is finished, approximately three to six months after birth.
NAM is used mainly for children with large clefts or deformity of the nostrils. In the past, fixing a large cleft required multiple surgeries. The first procedure pulled the lip together, a second improved the position of the lip, another two would be for the nose, then another would close the palate, and so on. NAM allows the orthodontist and surgeon to improve a large cleft in the months before surgery. A smaller cleft can help the surgeon obtain improved shape of the nose and a thinner scar in only one surgery. A better result in the first surgery, means fewer surgeries later in childhood.
How does NAM work?
NAM is accomplished with an orthodontist. Your child will be fitted with a custom-made molding plate that looks like an orthodontic retainer. The device is attached with small orthodontic rubber bands that are taped to the baby’s face.
The molding plate causes no pain and after the first few days the plate usually doesn’t bother babies at all; it’s an accepted part of their face. The molding plate helps gently direct the growth of the gums. The baby wears the molding plate 24 hours per day, seven days a week, including during feeding. Parents change the tape and clean the molding plate daily as needed.
The orthodontist gently adjusts the shape of the molding plate every one to two weeks, sculpting the plastic. Each adjustment is very small, but it starts to guide the baby’s gums and nose as they are growing. Each appointment takes about 60 minutes. After the cleft is small enough, a post is attached to the molding plate and placed in the nostril. This post is then gently adjusted to lift up the nose and open the nostril.
By the time of surgery, the nose has been lifted and narrowed, the gap in the gums is smaller, and the lips are closer together. A smaller gap means less tension when the surgeon closes the cleft.
This information was taken from our Orthodontist, Dr. Dustin Burleson. Yes, Lily sees an Orthodontist already! LOL. We started the NAM process when she was 6 weeks old. We decided to do NAM for shapment of her nostrils and stretching of her nose to give her a point instead of a mushroom nose. This treatment is not for everyone! It is very expensive (treatment not covered by insurance) and we have weekly appointments with the orthodontist where he adjusts the NAM. Not to mention all the taping and constant cleaning. We feel like this is something we can do to help her have the very best outcome and so far our Orthodontist and Plastic Surgeon are VERY hapy with the results. And we still have 6 weeks left before surgery. I will attatch a few photos. Please ask any questions about our process. I love to try and answer questions!
You can see in the first two pictures what she looked like pre-NAM and in the last picture you can see how much more her nostrils have opened and the middle piece called the premaxilla is pushed a lot further back. We are pleased with the results so far and both the Plastic Surgeon and Orthodontist have said she has responded better than they have ever seen! Praise the Lord. This is something we have prayed for as well and I tell you what, God has answered EVERY one of my prayers for my daughter! Thank you LORD!
Saturday, August 18, 2012
BIRTH-Day
May was the start of a busy month for us! The weekend before (April 27th) my work threw me and Lily an amazing baby shower! Thanks to my "two pals" for putting it together. Pink everything! So many wonderful things and SO many CUTE clothes! May 5th, I had a family baby shower! Again SO many cute things. My sister in law is SUPER AMAZING! I love you Terrica! I especially liked the videoed game (Lily ask your mom about that someday)! We were busy trying to piece together Lily's room, wash clothes, and just organize. I was overwhelmed by all the many things we recieved!
May 16th was a typical Wednesday morning. Woke up, ate breakfast. Jackson and I were haning around and were going to go to Chick Fil A that day for a date. My Mom called me after breakfast and told me that my Grandpa (dad's dad) had major stroke and that he was in ICU. She was not sure what the severity was at the time but didn't think it was going to be a great outcome. She had an interview at work that day and had to attend that but wondered if after that I would come and pick her up and drive her to the hospital. Of coarse I would. So, thankfully, Jackson and I still had our date that day (it was just a little short) and then went and picked up my Mom and drove to St. Lukes on the Plaza. Called Dave and he said he would meet us after he got off work. Grandpa was stable but not out of the woods. We were up at the hospital for about 2 hours and then left. We went home that evening and I made dinner. One of the food adversions I had was spagetti. I have no idea why! lol. So I made that for Dave and Jackson and I had Sloppy Joes. Anyways while I was cooking dinner I felt a sharp pain and I told Dave, I think she is trying to push through. Haha. Didn't really think anything of it. We got ourselves ready for bed and laid down. I was going to go into work the next day for a meeting a Manny's. I was SOOO very excited. Pregnant woman think about upcoming meals often, lol. We feel asleep and I was never uncomfortable that night. Fell right to sleep.
Well all the sudden I woke up at about 2:30am on 5/17/12. My pants and sheets were wet. I thought to myself, oh no! I am going to have to wake Dave up so I can chage the sheets, because I wet the bed. I was so embarassed! Stood up so I could go to the bathroom and all the sudden more trickled. At that moment I really didn't think it was pee. Got to the bathroom and KNEW it was not pee! "Dave!!! Get up, we have to go to the hospital". Dave in a half sleep, "What, why?". Well my water broke I think. He went and got Jackson up. Jackson was excited and confused. I think he saw this all going down differently in his head too. lol.
We get to the maternity unit at about 3:30am. They get me set up, IV started. Monitors going, and then they checked me. Yep, my membranes broke. The doctor (Dr. Morgan, not my doctor but another in the group) told me that I was not having contractions so we were going to just hang out for right now. Not in a hurry to get her seems she was only 35 weeks. He told me that when the membranes break it naturally speeds up the development of the lungs so if we can hang out for about 24 hours that would be great. So Dave calls all the grandparents around 4:45 and says we are at the hospital and I am in labor but we are hanging out right now. Comes back in at about 5:15 and around 5:30 the nurse comes in and says I am having contractions. They are making Lily have heart decels. So we flip to the sides, try O2 and nothing is stopping them. They did not want to give me meds to stop them as I was already 35 weeks. Far enough to let things happen. So it was a repeat c-section (I was really hoping to TRY vbac). And it was considered emergent because of the heart decels. They were taking me back by 6:15am. My Dad and Sister in law met me in the room minutes before they took me back to the OR. I was so happy to have my Dad pray with us before we went back. He prayed with me before I walked down the isle, prayed with me before Jackson came and now prayed with me before Lily came! My Dad is very special to me!!! We finished our prayer and they wisked me away. Jackson stayed with them and Dave was able to stay with me. We went in and when they started administering the anesthetics I got very sick to my stomach. Only lasted about 5 minutes but that is a terrible feeling when you can't move your body! Dave came in after they started and just talked with me through all of it. Dr. Morgan kept cracking jokes which was nice! They got to Lily and pulled her out, she was CRYING!!! Praise God! I was praying the whole time that things would be okay. Dave goes over to see her. Still screaming, Dave yells over "Her palate is intact!!!". I lose it. I am crying and proclaiming PRAISE GOD! We were told she had a 90% chance the palate would be involved as well. We were one of the 10%! Kiddos with cleft palates can have trouble eating, speech issues, hearing issues. They go through a lot of additional things! And I was told when I see her for the first time I would not even see the cleft, I would just see my baby. That was so true! She was beautiful and perfect! Anyways at this point I just want to shout it from the top of the building that she is here and good. They took her to the nursery to get her checked over. I went to recovery and then to my room. I got to see all my wonderful family. Soon after they came in and told us she was going to be going to the NICU because she required a little oxygen. They had her under an oxygen hood and that was not quite doing the trick. They could not do any type of nasal cannula because of the cleft so they had to intubate her. She was on the vent for 24 hours and pulled the tube herself! She was fiesty! They had to put little weights on her arms so she would not pull any other tubes. Hehe. She was in the NICU for 10 days and we grew to love her so much in that short time! She is perfect. God blessed us with two beautiful children!
May 16th was a typical Wednesday morning. Woke up, ate breakfast. Jackson and I were haning around and were going to go to Chick Fil A that day for a date. My Mom called me after breakfast and told me that my Grandpa (dad's dad) had major stroke and that he was in ICU. She was not sure what the severity was at the time but didn't think it was going to be a great outcome. She had an interview at work that day and had to attend that but wondered if after that I would come and pick her up and drive her to the hospital. Of coarse I would. So, thankfully, Jackson and I still had our date that day (it was just a little short) and then went and picked up my Mom and drove to St. Lukes on the Plaza. Called Dave and he said he would meet us after he got off work. Grandpa was stable but not out of the woods. We were up at the hospital for about 2 hours and then left. We went home that evening and I made dinner. One of the food adversions I had was spagetti. I have no idea why! lol. So I made that for Dave and Jackson and I had Sloppy Joes. Anyways while I was cooking dinner I felt a sharp pain and I told Dave, I think she is trying to push through. Haha. Didn't really think anything of it. We got ourselves ready for bed and laid down. I was going to go into work the next day for a meeting a Manny's. I was SOOO very excited. Pregnant woman think about upcoming meals often, lol. We feel asleep and I was never uncomfortable that night. Fell right to sleep.
Well all the sudden I woke up at about 2:30am on 5/17/12. My pants and sheets were wet. I thought to myself, oh no! I am going to have to wake Dave up so I can chage the sheets, because I wet the bed. I was so embarassed! Stood up so I could go to the bathroom and all the sudden more trickled. At that moment I really didn't think it was pee. Got to the bathroom and KNEW it was not pee! "Dave!!! Get up, we have to go to the hospital". Dave in a half sleep, "What, why?". Well my water broke I think. He went and got Jackson up. Jackson was excited and confused. I think he saw this all going down differently in his head too. lol.
Friday, July 13, 2012
It takes Faith
I want to start by saying that when Dave and I decided to try for a second child I prayed and asked God to please bless me with a little girl. Then we found out we were expecting and I prayed and prayed and prayed for a little girl. I knew this was going to be my last pregnancy, so I was so wanting a little girl. God knew what was on my heart. So when I found out we were having a girl I knew that it was God's work!
When we were told about the cleft, like I said before, I was devestated! I knew God would not give us more than we could handle but why did he allow this? I cried and cried. I remember sitting on my floor, bible open, reading Gods word. Then just crying and asking God why, why us? It was the hardest thing I have ever delt with. I love my husband dearly but trying to talk to a man about your feelings is hard. I didn't know what to say to him. How did he feel about this? Niether of us really talked about it for a week or so. I had my Mom to talk to which was nice. She has gone through this with my brother so surely she will know what I am feeling. But my brothers cleft was a birthday surprise so she went through her pregnancy "happy". Was I going to be able to enjoy the rest of my pregnancy? Should I tell others about the cleft now or wait until Lily is born? Should I have a baby shower still? So many questions. I prayed every day, fervently, about the questions.
The other thing I was thinking about was will she have a cleft palate? A cleft lip, for a lack of better words, is "cosmetic" but a cleft palate was so much more of a big deal. Feeding issues, speech issues, more surgery, so many other complications. We had to meet monthly with a High Risk Fetal Health Doctor to do sonograms. I asked him every time we saw her, can you tell if her palate is involved? Every time he said the same thing. It looks like it could be, but what is the difference? She will have to have surgery regaurdless. Again, terrible bedside manner. Remember Mr. Doctor you are talking to a very emotional pregnant woman! And, it does matter. But if you can't tell just say that, don't tell me it doesn't matter. We chose after seeing him for 3 months we were not going to go back. Nothing was changing with her so we thought it was pointless to pay him to tell us every month that he still detected a bilateral cleft lip.
Onto my first day of work, after finding out about the cleft. It was a Friday. I was still in shock and devestated. I had two coworkers that stood out that day and TRUELY took time for me. Hugged me and let me just cry. I can't tell you enough how much that impacted me. It is amazing how God puts certian people in your life at the right time. They both made me have a change of heart that day. I knew I would be alright. I knew that Dave and I could take this challenge on. From that day forward I started to do some research. I came across a cleft board of Moms all over the world. Moms that have shared their stories of their little ones clefts. I read so many stories. I felt as if God lead me to that site to start healing my broken heart. I started feeling more confident about things and started sharing about Lily's cleft more. While I was starting to open up to people more, I was getting more okay with things.
Comments that made me cringe:
-At least it is just cosmetic.
-That can be fixed. (Just so you know, my daughter is not broken)
-She will look perfect after surgery. (I think she is perfect now!)
-There are far worse things that could be wrong. (Yes granted there is, however this still stinks!)
I did hear a lot of these comments and still do. It is hard to hear sometimes, even though people are just trying to be nice. Comments I loved (and still love) hearing were ones like she will be (is) beautiful! She will be (is) so loved! She will be (is) perfect and God has a plan for her! That one stood out to me! You are right, she has been ordained by God to come into this world. She will have a plan for her life. That is when I decided that as soon as she was old enough her and I were going to start going on Mission trips together. What a wonderful way to show her how lucky she is. So many other kids in the world are suffering far worse that what she will have to deal with. What a plan. Now I am really okay with things because God has completely shown me that she is here for a purpose, HIS! How could I not be okay with this?! Thank you God for showing me though this time! I could not have done it without him.
When we were told about the cleft, like I said before, I was devestated! I knew God would not give us more than we could handle but why did he allow this? I cried and cried. I remember sitting on my floor, bible open, reading Gods word. Then just crying and asking God why, why us? It was the hardest thing I have ever delt with. I love my husband dearly but trying to talk to a man about your feelings is hard. I didn't know what to say to him. How did he feel about this? Niether of us really talked about it for a week or so. I had my Mom to talk to which was nice. She has gone through this with my brother so surely she will know what I am feeling. But my brothers cleft was a birthday surprise so she went through her pregnancy "happy". Was I going to be able to enjoy the rest of my pregnancy? Should I tell others about the cleft now or wait until Lily is born? Should I have a baby shower still? So many questions. I prayed every day, fervently, about the questions.
The other thing I was thinking about was will she have a cleft palate? A cleft lip, for a lack of better words, is "cosmetic" but a cleft palate was so much more of a big deal. Feeding issues, speech issues, more surgery, so many other complications. We had to meet monthly with a High Risk Fetal Health Doctor to do sonograms. I asked him every time we saw her, can you tell if her palate is involved? Every time he said the same thing. It looks like it could be, but what is the difference? She will have to have surgery regaurdless. Again, terrible bedside manner. Remember Mr. Doctor you are talking to a very emotional pregnant woman! And, it does matter. But if you can't tell just say that, don't tell me it doesn't matter. We chose after seeing him for 3 months we were not going to go back. Nothing was changing with her so we thought it was pointless to pay him to tell us every month that he still detected a bilateral cleft lip.
Onto my first day of work, after finding out about the cleft. It was a Friday. I was still in shock and devestated. I had two coworkers that stood out that day and TRUELY took time for me. Hugged me and let me just cry. I can't tell you enough how much that impacted me. It is amazing how God puts certian people in your life at the right time. They both made me have a change of heart that day. I knew I would be alright. I knew that Dave and I could take this challenge on. From that day forward I started to do some research. I came across a cleft board of Moms all over the world. Moms that have shared their stories of their little ones clefts. I read so many stories. I felt as if God lead me to that site to start healing my broken heart. I started feeling more confident about things and started sharing about Lily's cleft more. While I was starting to open up to people more, I was getting more okay with things.
Comments that made me cringe:
-At least it is just cosmetic.
-That can be fixed. (Just so you know, my daughter is not broken)
-She will look perfect after surgery. (I think she is perfect now!)
-There are far worse things that could be wrong. (Yes granted there is, however this still stinks!)
I did hear a lot of these comments and still do. It is hard to hear sometimes, even though people are just trying to be nice. Comments I loved (and still love) hearing were ones like she will be (is) beautiful! She will be (is) so loved! She will be (is) perfect and God has a plan for her! That one stood out to me! You are right, she has been ordained by God to come into this world. She will have a plan for her life. That is when I decided that as soon as she was old enough her and I were going to start going on Mission trips together. What a wonderful way to show her how lucky she is. So many other kids in the world are suffering far worse that what she will have to deal with. What a plan. Now I am really okay with things because God has completely shown me that she is here for a purpose, HIS! How could I not be okay with this?! Thank you God for showing me though this time! I could not have done it without him.
Monday, July 2, 2012
I wanted to start a blog. Something that I could share with Lily someday. Something that will help family and friends know what we are doing, and the journey Lily will go through with her cleft lip.
We went in to have an ultrasound on Jan. 26, 2012. This was our 20 week anatomy scan that would tell us if we were about to give Jackson a baby brother or sister! I was so excited and nervous all at the same time. I was up the whole night before. I think I thought there was going to be something "wrong". It was so strange. The whole pregnancy I was sure I was having a little girl, but about an hour before our scan I was convinced we were having a boy. I was googling boy names because I was so sure. So we go in for our scan. Jackson was with us. I wanted the ultrasound tech to tell him what we were having and then him to tell us. We video taped him telling us. We are having a baby sister. I was so very excited! A little girl to go shopping with. A little girl to go get our nails done together with. A little girl to watch her get dressed up to go to prom. A little girl to one day watch marry the man of her (and her Mom and Dad's) dreams. A little girl to watch someday become a Mommy too. I was "tickled pink"! As the tech was doing my scan I noticed she was really looking at the face for a long time. With our family history of clefts I was very worried. We got in the car after we were done and I looked at Dave and said, "she looked at the face for a long time". He just said, "I know". We were both worried. I waited through the weekend and on Monday called my OB's office. They went through the entire report of the scan. The last thing was "other concerns" and the nurse said they suspect a cleft palate. My stomach dropped. I was so scared. They told me I needed to go in to a perinatologist and have a level 2 scan done. I made my appointment and had to wait a week for it. That was a crazy hard week. So many things go through your head. But then came the day. Feb. 1, 2012. We went to see the Perinatologist. I was so nervous! We had to take Jack with us because he had gotten sick earlier in the day. We went in. The Dr. was very impersonable. Not what an expecting momma needs for sure. He was going over all the major organs. Both hemisphers of the brain look good. Four chambers of heart look good. Two kidneys look good, lungs look good. Bladder intact. Stomach looks good. Cord blood vessels look good. Then he hovers over the face. And he is looking...........and looking...... and looking. He says, "yep, she has a bilateral cleft lip". I said WHAT? I was expecting to hear she has a cleft palate, I never expected anything with a lip. And he was just so non shulant about it. I looked over at Dave and he just grabbed my hand. I just started to cry. They gave us the number to Children's Mercy Cleft Team (which I know very well seems I work in the same clinic, ha) and sent us on our way. I have never felt so sick in my life. All of those things that I had hoped and dreamed for with a little girl, would they come true? Would she grow up being made fun of? Would anyone ever ask her to prom? Would anyone want to marry her and have children with her? I knew that my faith was going to have to pull me through.
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