On Friday night, my husband, baby and I were out. We had a baby sitter for the others. She was in her car seat that snaps into the stroller. The angle of it was just right to see the back of her throat when she cried. I noticed her uvula (I did not even know it was called a uvula. Sadly, I never bothered to know the name of this body part.) was split in two. I was upset. How could I not notice this before? I felt terrible.
Thankfully, I am a part of a support group dealing with craniofacial issues. I found out it was called a bifid uvula. I was able to google it to read more about it. Later, the lady who is the founder of this group replied she was concerned MK could have a submucous cleft palate and one of the symptoms could be nasal leaking. MK did have a few instances where milk leaked out of her nose. Poor baby! Oh, how she cried when the milk came out her nose. I freak out too, but I did not think it meant more. This leaking is only possible when a child has a cleft palate. If this is true; then this may mean more surgery for MK. We have to meet with her cleft team and find out more.
Showing posts with label Cleft. Show all posts
Showing posts with label Cleft. Show all posts
Monday, December 19, 2011
Friday, November 11, 2011
MK's Smile
It's hard for me to imagine undergoing what my baby, MK, has gone through with dealing with two surgeries at such a young age. I was expecting baby who constantly cried (I write while she is currently crying in frustration. She can't get to me in the walker. The rug is in the way.), but she surprises me by being the happiest baby I have had to date. She could be hungry and waiting for food, but still manages to smile. My friend told me she worked really hard to get that smile and she is not going to waste her beautiful mouth on frowning. It's no wonder Christ said for us to be like a little child.
Monday, September 12, 2011
Spoke to soon....
It's 1:34AM and my baby had been sleeping through the night up until her CL surgery. The past few days she was sleeping through the night and I made the mistake of bragging about it to my mom today. Then what happens?! She is up crying. I should have known better then to "tempt the fates" to coin the phase I really don't believe in (then why am I saying it....well, it 1:35AM and I'm tired). Is it really 'coin the phrase'? Or is it 'Con the phrase'.....sort of like a con-artist? Go back to sleep baby please.
Saturday, July 2, 2011
Back to Normal
Yes! My baby girl is back to normal. She is eating like herself. She is sleeping better and more. Today was a good day. I can not get over at how well children...well, babies...this baby, my baby, did so well after her surgery and the "setback". I am proud of her! She is such a strong child. I will never let her forget how strong she was as a baby. If she can handle what she went through in June; then she can handle ANYTHING life will throw at her in the future. It's just nice to have the CL repair surgery behind us.
Good job?
I asked my son if the doctor had done a good job. He said, "No." I asked him why and he replied, "I don't like how he fixed her. I want her to look like she did before." I guess he misses her old face too.
My 4-year-old daughter has a different opinion. She said, "The doctor fixed my baby sister and now she looks like me. (She contorts her face under her nose.) Her lip is like mine now."
Thursday, June 30, 2011
Nose Splints and No-No's
We took her to the hospital today to get her nose splints removed. They took her No-No's away. She had removed one last night and it was scary to think she might open her stitches. She had her fingers in her mouth. I was scared to tell anyone she did this last night. Then I go into the office and he takes them away. Ha ha ha! I was nervous to see them go. I thought she would need to wear them until the stitches were gone, but the doctor gave her the OK to not have them anymore. Yay! He is going to use them when he does volunteer surgeries. He said he was going to put her name on it. This is very sweet.
I'm very happy with her results. Actually, I should say....I'M VERY HAPPY WITH THE RESULTS!!!!! My children haven't said much about liking it, but I can tell they are happy. They just wanted to know if she was fixed and if she was going to bleed again when I went to pick them up at their cousin's house. It's been a strange month and I can't wait until July. We got lots of fun stuff for the Holiday. I can't wait for our first July 4th in our new home.
Oh! On the way to the hospital the craziest thing happened. A poor bird met his end. He flew into our windshield and thankfully did not break it. It hit the window very hard and left bird juice on it. It was really gross and sad. I hope it died quickly for its own sake. Good-bye June, I don't want to experience another month like you. Hello July! I feel like you are going to be a butterfly in the belly free month.
I'm very happy with her results. Actually, I should say....I'M VERY HAPPY WITH THE RESULTS!!!!! My children haven't said much about liking it, but I can tell they are happy. They just wanted to know if she was fixed and if she was going to bleed again when I went to pick them up at their cousin's house. It's been a strange month and I can't wait until July. We got lots of fun stuff for the Holiday. I can't wait for our first July 4th in our new home.
Oh! On the way to the hospital the craziest thing happened. A poor bird met his end. He flew into our windshield and thankfully did not break it. It hit the window very hard and left bird juice on it. It was really gross and sad. I hope it died quickly for its own sake. Good-bye June, I don't want to experience another month like you. Hello July! I feel like you are going to be a butterfly in the belly free month.
Tuesday, June 28, 2011
Lessons Learned From "The Setback"
Baby girl is doing much better today. I was patting her back to get her to belch and she bumped her mouth on me. She cried. I FREAKED OUT!! I began to pray that her stitches were OK. She appears to be fine. I am not chancing it. She is staying in bed and I am holding her with her back to my belly. She is OK with this position, but prefers to be held stomach to stomach.
If I had to do it again...the ER blood situation...I would make sure I would ask tons of questions. I would make sure my family watching the children had the phone number to the hospital to contact us. I would be sure to bring the charger to my husband's cell phone. I would be clear on what the baby can and cannot do and trust my instincts regardless of what anyone else says.
I hope by telling my story other mother's will be able to ask the right questions and avoid being in this situation. Oh, and I would suggest getting the phone number for the on-call surgeons in case of emergency. I had to wait on hold for the operator to locate the correct people when the baby was bleeding. I don't want anyone to think that what happened to our daughter is normal and happens all the time. I know it is not. It was just one of those things. Sometimes things do not go as planned and just because it happened to us does not mean it is going to happen to your baby.
Today was a bit of a hard day with the baby. She was crying a lot and only wants me to be in the room. It's difficult to do when you have three other children to care for. I was laughing at the irony of life. My mother in a similar situation was running from her kitchen to her bedroom to see the baby. In the kitchen flipping a tortilla and running to talk to my brother after his surgery. I was doing the same except it was a pancake.
I can't wait for her lip and nose to be healed. She bumped it with her "no-nos" too and began to cry. It took me a while to calm down and get her to nurse. I am sure she could sense my tension. I am just going to have to adopt the attitude that my house might be a mess for a bit and it's OK. I want to give my children some attention. The other ones are suffering too. My poor children! This has not been easy for them.
My 4-year-old girl has been having more sleep issues than normal. I think it's been the change of routine. My other little girl has become more clingy and only wants to be around me. My son has become a bit grouchy and argumentative. We made sure to have Family Home Evening last night. My husband gave them a good quick lesson. Then they wanted to learn how to play Battleship. It was fun! It was boys vs. girls. The girls won and my son was not happy about it at all. He doesn't understand how bad it is to be a sore loser. He just wants to win. I don't blame him because I think life is all about winning....enduring to the end.
One lesson I wish to learn is how to make a robot. Then I could have my own personal Rosie the Robot Maid, but since I don't have her or the knowledge to build her I can choose to let this situation bring me down or choose to see the good in it. I choose the latter. It is nothing like a leisurely walk with the dog in the park, but more like being dragged by a Great Dane in the park. I still get to see the beauty of the park, but at a much faster pace. ha ha ha Oh!
If I had to do it again...the ER blood situation...I would make sure I would ask tons of questions. I would make sure my family watching the children had the phone number to the hospital to contact us. I would be sure to bring the charger to my husband's cell phone. I would be clear on what the baby can and cannot do and trust my instincts regardless of what anyone else says.
I hope by telling my story other mother's will be able to ask the right questions and avoid being in this situation. Oh, and I would suggest getting the phone number for the on-call surgeons in case of emergency. I had to wait on hold for the operator to locate the correct people when the baby was bleeding. I don't want anyone to think that what happened to our daughter is normal and happens all the time. I know it is not. It was just one of those things. Sometimes things do not go as planned and just because it happened to us does not mean it is going to happen to your baby.
Today was a bit of a hard day with the baby. She was crying a lot and only wants me to be in the room. It's difficult to do when you have three other children to care for. I was laughing at the irony of life. My mother in a similar situation was running from her kitchen to her bedroom to see the baby. In the kitchen flipping a tortilla and running to talk to my brother after his surgery. I was doing the same except it was a pancake.
I can't wait for her lip and nose to be healed. She bumped it with her "no-nos" too and began to cry. It took me a while to calm down and get her to nurse. I am sure she could sense my tension. I am just going to have to adopt the attitude that my house might be a mess for a bit and it's OK. I want to give my children some attention. The other ones are suffering too. My poor children! This has not been easy for them.
My 4-year-old girl has been having more sleep issues than normal. I think it's been the change of routine. My other little girl has become more clingy and only wants to be around me. My son has become a bit grouchy and argumentative. We made sure to have Family Home Evening last night. My husband gave them a good quick lesson. Then they wanted to learn how to play Battleship. It was fun! It was boys vs. girls. The girls won and my son was not happy about it at all. He doesn't understand how bad it is to be a sore loser. He just wants to win. I don't blame him because I think life is all about winning....enduring to the end.
One lesson I wish to learn is how to make a robot. Then I could have my own personal Rosie the Robot Maid, but since I don't have her or the knowledge to build her I can choose to let this situation bring me down or choose to see the good in it. I choose the latter. It is nothing like a leisurely walk with the dog in the park, but more like being dragged by a Great Dane in the park. I still get to see the beauty of the park, but at a much faster pace. ha ha ha Oh!
Monday, June 27, 2011
A Little Setback
I am glad to be home now. Yesterday was a nightmare for me, but not my husband. When I told him "Today was a nightmare" last night he laughed and said, "I can think of worse things that are nightmares. This is a little setback." So, this is what I am calling it now. "A little setback".
The surgeon told us to go to a local ER to keep us from driving the 2 1/2 hours to the Children's Hospital. I wanted to go there, but my husband said we should follow what the doctor suggested. In hindsight, I think we should have ignored the doctor and listened to my gut. It caused us to loose more time.
The local ER saw us right away, but we could not leave until we got the 'Transfer Order' taken care of....red tape. We lost an hour waiting for this paperwork. I asked if we could just go without it, but the answer was no. After asking again, they finally explained (you are going to see a trend of 'lack of information' in this post from medical staff and us) why. The reason was to keep us from driving 2 1/2 hours and then having to wait and be seen by ER staff all over again. I still think we should have been able to leave and have them take care of this via a fax and cell phone. My husband had to explain to me about the red tape created by the government. How doctors/hospitals need to 'cross the T's and dot I's' to avoid a lawsuit. I did not care about government rules because I had a bleeding baby and I just wanted her to be taken care of right away. Please note: She last ate at 2:30AM Sunday morning. I was told to not feed her in case they needed to operate and to keep the area from getting worse.
We drove the 2 1/2 hours there and found the road was blocked to get into the hospital...construction. We lost about 15 minutes here. We got in and the staff took a look at her. She was a mess. Her face was covered with blood by this point and had started to clot. The clot was almost the size of a dime and black. Her complexion was a greenish-yellow color. She did not look well at all. I'm embarrassed to admit it, but my fear took over and I began to wonder if the black clot was her skin dying. Silly, I know!
We called the surgeon when we got there and he told us he was 20 minutes away. Ugh! More waiting!!!!! He looked at her when he got there and he was such a nice man. He kept saying to the baby, "Look at you. Just look at you. You're a mess." He read my mind. She was a mess. Poor baby!
What seemed like hours to me, but in reality was about 15 minutes they brought out a wheel chair to take me and the baby to the OR. We got to the OR and I waited another 20 minutes or so for the anesthesia team to show up. By this point it was past noon. She was beginning to cry for food. I had to sing, rock and walk her to keep her from crying. I did not want the wound to open any more. They finally took her back at 1:40ish PM. Before they took her back they had to have everyone talk to me, fill out forms to consent to operate and such and to make sure we knew the risks.
I could relax some because I knew she would not dehydrate and would get fixed. We went to eat. After eating, I went to pump. While I was gone (30 minutes) they came out and told my husband they were done. Here is where the communication breakdown begins and does not end. I can look back now and think I should have asked this or said that. I think they do this all day that they forget "Oh, this is there first time with this experience. Let me explain all the details." They are good about doing it before the surgery, but maybe need a little work for the after part? Or maybe we needed to ask more questions? Not sure. What I do know that in this ER type situation I couldn't even think straight to ask questions I would have normally thought of? Maybe it was the same for them. He did say this has never happened to him before.
I went to a room to give them the milk to refrigerate. She told me they were done and the baby was already in her room....according to the computer system. Then we went up there, but she was not there. I knew they would want me to go and nurse her in the recovery room since they did this for her on Wednesday. I told the front desk nurse and she was either too busy or thought I was nuts and had me wait in the room. When two nurses brought her up they told me they were looking for me. They gave her a bottle. I was not happy and I guess my face showed it. I told them the front desk nurse told me to wait in the room.
We had to stay the night. They wanted to watch her. I don't know how anyone can rest in a hospital. As soon as I would feed her and put her to sleep they would wake her up. I got up at 5AM today and at 7ish the doctors came in and said they would let us go home. They needed to talk to the doctor first. We waited. More people came in and out to check vitals. It seemed they would come right when I would put her to sleep. She would wake up and then I would have to put her back to sleep. Finally, the surgeon came in and said we could go home. He would get the nurses to come and take off all of the tubes on the baby. It took another hour to get the ball rolling. The gal came in and took off some of the tubes, but left the security tag on her. She said I could take the rest of the stuff off of her and we could get ready to go. I asked another lady for scissors to cut off the tag. I wanted to go and wasn't really thinking they had to remove it. She said the police would come in if I took the tag off. I'm glad I asked. I was in a hurry to get home because my brother-in-law and his family had stayed an extra day from their visit. They had to drive back home and he missed work. I dislike hospitals and they gross me out; so, I just wanted to leave.
Another lady came in and took off the tag. They had told me when they did this we could go home. So, we started for the door. We got yelled at and our nurse said we could not leave until we got our paperwork and prescription. Why couldn't they explain things better? I just don't know. We were told we could go home at 7 AM and did not get out of there until after 12:00PM. I had not eaten anything either. The morning nurse did not order me a breakfast. I fell asleep and it was too late to get one. I got a meal since I nurse my baby, but I did not eat any real food until we got home. Glenn got me a muffin, banana and juice, but I was really hungry since I nursed all night each time they woke her up to check her vitals.
I'm just glad it is over and I hope I do not have to repeat this ordeal again. We go on Thursday to remove her plastic nose splints and the tape under her nose. I can't wait until she is healed. I just need more patience for waiting and I need to ask them for a print out of what is going to happen when and what are the procedures for leaving. Last Wednesday was easier and we got to leave fast.
The baby did great though. After they brought her in the room she was smiling, cooing and moving her arms and legs. She did not even show signs of being in pain. I gave her a bit of OTC pain meds, but I don't think she needs any more. She will just need the antibiotic. I don't need for her to get an infection. She has been through enough, I think. I hope she gets a break and starts healing quickly and properly without any more "setbacks".
The surgeon told us to go to a local ER to keep us from driving the 2 1/2 hours to the Children's Hospital. I wanted to go there, but my husband said we should follow what the doctor suggested. In hindsight, I think we should have ignored the doctor and listened to my gut. It caused us to loose more time.
The local ER saw us right away, but we could not leave until we got the 'Transfer Order' taken care of....red tape. We lost an hour waiting for this paperwork. I asked if we could just go without it, but the answer was no. After asking again, they finally explained (you are going to see a trend of 'lack of information' in this post from medical staff and us) why. The reason was to keep us from driving 2 1/2 hours and then having to wait and be seen by ER staff all over again. I still think we should have been able to leave and have them take care of this via a fax and cell phone. My husband had to explain to me about the red tape created by the government. How doctors/hospitals need to 'cross the T's and dot I's' to avoid a lawsuit. I did not care about government rules because I had a bleeding baby and I just wanted her to be taken care of right away. Please note: She last ate at 2:30AM Sunday morning. I was told to not feed her in case they needed to operate and to keep the area from getting worse.
We drove the 2 1/2 hours there and found the road was blocked to get into the hospital...construction. We lost about 15 minutes here. We got in and the staff took a look at her. She was a mess. Her face was covered with blood by this point and had started to clot. The clot was almost the size of a dime and black. Her complexion was a greenish-yellow color. She did not look well at all. I'm embarrassed to admit it, but my fear took over and I began to wonder if the black clot was her skin dying. Silly, I know!
We called the surgeon when we got there and he told us he was 20 minutes away. Ugh! More waiting!!!!! He looked at her when he got there and he was such a nice man. He kept saying to the baby, "Look at you. Just look at you. You're a mess." He read my mind. She was a mess. Poor baby!
What seemed like hours to me, but in reality was about 15 minutes they brought out a wheel chair to take me and the baby to the OR. We got to the OR and I waited another 20 minutes or so for the anesthesia team to show up. By this point it was past noon. She was beginning to cry for food. I had to sing, rock and walk her to keep her from crying. I did not want the wound to open any more. They finally took her back at 1:40ish PM. Before they took her back they had to have everyone talk to me, fill out forms to consent to operate and such and to make sure we knew the risks.
I could relax some because I knew she would not dehydrate and would get fixed. We went to eat. After eating, I went to pump. While I was gone (30 minutes) they came out and told my husband they were done. Here is where the communication breakdown begins and does not end. I can look back now and think I should have asked this or said that. I think they do this all day that they forget "Oh, this is there first time with this experience. Let me explain all the details." They are good about doing it before the surgery, but maybe need a little work for the after part? Or maybe we needed to ask more questions? Not sure. What I do know that in this ER type situation I couldn't even think straight to ask questions I would have normally thought of? Maybe it was the same for them. He did say this has never happened to him before.
I went to a room to give them the milk to refrigerate. She told me they were done and the baby was already in her room....according to the computer system. Then we went up there, but she was not there. I knew they would want me to go and nurse her in the recovery room since they did this for her on Wednesday. I told the front desk nurse and she was either too busy or thought I was nuts and had me wait in the room. When two nurses brought her up they told me they were looking for me. They gave her a bottle. I was not happy and I guess my face showed it. I told them the front desk nurse told me to wait in the room.
We had to stay the night. They wanted to watch her. I don't know how anyone can rest in a hospital. As soon as I would feed her and put her to sleep they would wake her up. I got up at 5AM today and at 7ish the doctors came in and said they would let us go home. They needed to talk to the doctor first. We waited. More people came in and out to check vitals. It seemed they would come right when I would put her to sleep. She would wake up and then I would have to put her back to sleep. Finally, the surgeon came in and said we could go home. He would get the nurses to come and take off all of the tubes on the baby. It took another hour to get the ball rolling. The gal came in and took off some of the tubes, but left the security tag on her. She said I could take the rest of the stuff off of her and we could get ready to go. I asked another lady for scissors to cut off the tag. I wanted to go and wasn't really thinking they had to remove it. She said the police would come in if I took the tag off. I'm glad I asked. I was in a hurry to get home because my brother-in-law and his family had stayed an extra day from their visit. They had to drive back home and he missed work. I dislike hospitals and they gross me out; so, I just wanted to leave.
Another lady came in and took off the tag. They had told me when they did this we could go home. So, we started for the door. We got yelled at and our nurse said we could not leave until we got our paperwork and prescription. Why couldn't they explain things better? I just don't know. We were told we could go home at 7 AM and did not get out of there until after 12:00PM. I had not eaten anything either. The morning nurse did not order me a breakfast. I fell asleep and it was too late to get one. I got a meal since I nurse my baby, but I did not eat any real food until we got home. Glenn got me a muffin, banana and juice, but I was really hungry since I nursed all night each time they woke her up to check her vitals.
I'm just glad it is over and I hope I do not have to repeat this ordeal again. We go on Thursday to remove her plastic nose splints and the tape under her nose. I can't wait until she is healed. I just need more patience for waiting and I need to ask them for a print out of what is going to happen when and what are the procedures for leaving. Last Wednesday was easier and we got to leave fast.
The baby did great though. After they brought her in the room she was smiling, cooing and moving her arms and legs. She did not even show signs of being in pain. I gave her a bit of OTC pain meds, but I don't think she needs any more. She will just need the antibiotic. I don't need for her to get an infection. She has been through enough, I think. I hope she gets a break and starts healing quickly and properly without any more "setbacks".
Sunday, June 26, 2011
Blood
I'm currently on the phone with our hospital. It's 6 AM Sunday morning. My baby has been bleeding from her mouth since last night. It's very scary. She awoke from a nap yesterday late afternoon with blood. Then again that night and this morning she has more blood. Her face is looking pale too. She had blood all over her shoulders and bib. I left it on her last night since she barely
I'm still on hold. I tried to call yesterday, but the doctor's number was only good from Monday-Friday. Ugh! Why did I fail to not get this information? This was not even on the list of reasons to call, but she can't keep loosing this much blood. I'm STILL on hold.
OK. So, I talked to someone. They are contacting my doctor's people and they are going to call me. I hope soon because I am starting to worry. I can tell my husband is worried too and he NEVER worries. So, I think this is pretty bad. Got off the phone at 6:15 AM. I wonder how long it will take for them to call me. I hope it's within 10 minutes.
It appears one of her stitches came loose. It's back to the hospital we go. I hope our surgeon will come in and fix her. I don't want anyone else to touch her.
I'm still on hold. I tried to call yesterday, but the doctor's number was only good from Monday-Friday. Ugh! Why did I fail to not get this information? This was not even on the list of reasons to call, but she can't keep loosing this much blood. I'm STILL on hold.
OK. So, I talked to someone. They are contacting my doctor's people and they are going to call me. I hope soon because I am starting to worry. I can tell my husband is worried too and he NEVER worries. So, I think this is pretty bad. Got off the phone at 6:15 AM. I wonder how long it will take for them to call me. I hope it's within 10 minutes.
It appears one of her stitches came loose. It's back to the hospital we go. I hope our surgeon will come in and fix her. I don't want anyone else to touch her.
Saturday, June 25, 2011
3 Days After Surgery
I took the gauze off her face yesterday. It was there to catch the dripping blood. She has tape strips under her nose. I am not allowed to wet it or take it off. This is self-removing strip. It will come out when she the stitched area has healed.
I know this is going to sound awful, but I miss her old face. It was not too bad for me to see her when she had the gauze on it. As soon as I took it off, I saw this new nose and mouth. It was nice and the doctor did an amazing job, but it's awful at the same time. I hope this does not sound terrible of me to say that, but I really miss her face. It's as if someone took my baby away. I hope this is normal and I am not the only one who has felt this way after cleft lip and nose repair surgery.
Yesterday in the late afternoon, I had to feed her with a syringe. I think she was hurting and could not nurse. Later, I had to hold her head in place for a bit to get her to try to eat. She did eat some. Today, she did a good job. I hope her normal appetite comes back. I am worried it will make my milk supply dwindle. However, fenugreek is an amazing herb! It does bring back the supply of milk. I had to pump last night. She slept through the night too. I woke up at 6 am a bit freaked out. I thought she had died or something. She did not make a sound. Ugh! Paranoia is not a very nice thing when you are a mother.
She is doing amazing though. I did not give her any more pain meds after yesterday afternoon. She does not seem to need it. The only thing she is taking now is her antibiotic. That stuff (to me) smells like cat pee. It's terrible. I was getting ready to tell my husband how we need to get rid of the cat for peeing in the room. I must have dropped some on the baby because I smelled cat pee near her. Poor cat! Getting blamed for something he did not do. I was laughing when I realized it was the medicine.
I am surprised at how much harder it has been on me then on my baby. I had heard this is how it is for some families and it is true in our case. With this baby it has been just a roller coaster of bitter anticipation....."The ultra sound came back and showed your baby has a cleft." ...."We are not sure about the palate."...."This was my worst labor of all my children."...."Her surgery has been set for June 22."...."She will need a bone graft at around 6 or 7."...."If her septum is still deviated we will need to fix this at age 14 or 15."
Through all of this my baby has been an amazing child. Such a mellow, peaceful, tranquil baby are some of the descriptions I have heard said of her. She is worth every bit of the ride this roller coaster has taken me. I love her dearly and would not change anything of my experience with her in all the world. My family is very blessed to have her here with us and she has taught me much so far and I am ready to learn any other lesson she has to teach me.
I know this is going to sound awful, but I miss her old face. It was not too bad for me to see her when she had the gauze on it. As soon as I took it off, I saw this new nose and mouth. It was nice and the doctor did an amazing job, but it's awful at the same time. I hope this does not sound terrible of me to say that, but I really miss her face. It's as if someone took my baby away. I hope this is normal and I am not the only one who has felt this way after cleft lip and nose repair surgery.
Yesterday in the late afternoon, I had to feed her with a syringe. I think she was hurting and could not nurse. Later, I had to hold her head in place for a bit to get her to try to eat. She did eat some. Today, she did a good job. I hope her normal appetite comes back. I am worried it will make my milk supply dwindle. However, fenugreek is an amazing herb! It does bring back the supply of milk. I had to pump last night. She slept through the night too. I woke up at 6 am a bit freaked out. I thought she had died or something. She did not make a sound. Ugh! Paranoia is not a very nice thing when you are a mother.
She is doing amazing though. I did not give her any more pain meds after yesterday afternoon. She does not seem to need it. The only thing she is taking now is her antibiotic. That stuff (to me) smells like cat pee. It's terrible. I was getting ready to tell my husband how we need to get rid of the cat for peeing in the room. I must have dropped some on the baby because I smelled cat pee near her. Poor cat! Getting blamed for something he did not do. I was laughing when I realized it was the medicine.
I am surprised at how much harder it has been on me then on my baby. I had heard this is how it is for some families and it is true in our case. With this baby it has been just a roller coaster of bitter anticipation....."The ultra sound came back and showed your baby has a cleft." ...."We are not sure about the palate."...."This was my worst labor of all my children."...."Her surgery has been set for June 22."...."She will need a bone graft at around 6 or 7."...."If her septum is still deviated we will need to fix this at age 14 or 15."
Through all of this my baby has been an amazing child. Such a mellow, peaceful, tranquil baby are some of the descriptions I have heard said of her. She is worth every bit of the ride this roller coaster has taken me. I love her dearly and would not change anything of my experience with her in all the world. My family is very blessed to have her here with us and she has taught me much so far and I am ready to learn any other lesson she has to teach me.
Thursday, June 23, 2011
The Day After The Procedure
Last night was not too bad. She slept well on our bed before I moved her into our "cradle". I got up in the middle of the night to nurse her. I did not sleep until 2AM. I had family come in from out of state to stay the night. I was excited to meet my nephew's new wife. She is great! I told them they were MFEO...if you can remember the letter sent to Meg Ryan in Sleepless in Seattle. Yes, I stole that line.
I was happy I remembered I could not put her into bed with me at night to nurse her. I sat in my chair with my boppy. I feel asleep sitting there. Don't worry it is really safe. The boppy and the chair hold the baby in place. I think I only dozed off for a bit. Then I put her in bed and went to lay down in mine. It felt amazing to sleep in my bed. I got up when the hubby was getting ready for work and the other little ones were up. I am very tired, but glad my baby seems to be content in her "cradle".
I am putting her in my room and thankful for the baby monitor to keep her from the children. I am worried they might touch her. They saw her today. My oldest girl said, "Oooohhhh, How sad. Why did they do it like that? How sad. How sad." My son said, "She has blood on her. It will become and owie (scab) then go away and she will be better." The toddler has no idea what just happened, but she has been clinging today. Maybe she missed me yesterday?
She is taking it better than I thought. The "no-nos" on her arms are not bothering her. Her bandage is not too bad and her nose splints are not keeping her from eating OK. She has to take breaths here and there, but she is eating better. I hope my milk supply does not dwindle.
I'm breathing a huge sigh of relief that I made it through yesterday. I made sure before we came home we said a prayer of thanksgiving in the car. Then again after we read our scriptures as a family before we went to bed. I said the prayer and the kids wanted to know why I was crying. I told them it was because I was happy. Yes, I am very happy with the results and how amazing my little trooper has handled everything. I am amazed at myself too. My husband? Nothing phases him. He always handles hard times very well.
Now to get back to the daily duties. My house is a wreck and I have more family coming to stay tonight. I'll have to go over my posts from yesterday and even this one to edit them. I had quickly posted them in the moment.
I was happy I remembered I could not put her into bed with me at night to nurse her. I sat in my chair with my boppy. I feel asleep sitting there. Don't worry it is really safe. The boppy and the chair hold the baby in place. I think I only dozed off for a bit. Then I put her in bed and went to lay down in mine. It felt amazing to sleep in my bed. I got up when the hubby was getting ready for work and the other little ones were up. I am very tired, but glad my baby seems to be content in her "cradle".
I am putting her in my room and thankful for the baby monitor to keep her from the children. I am worried they might touch her. They saw her today. My oldest girl said, "Oooohhhh, How sad. Why did they do it like that? How sad. How sad." My son said, "She has blood on her. It will become and owie (scab) then go away and she will be better." The toddler has no idea what just happened, but she has been clinging today. Maybe she missed me yesterday?
She is taking it better than I thought. The "no-nos" on her arms are not bothering her. Her bandage is not too bad and her nose splints are not keeping her from eating OK. She has to take breaths here and there, but she is eating better. I hope my milk supply does not dwindle.
I'm breathing a huge sigh of relief that I made it through yesterday. I made sure before we came home we said a prayer of thanksgiving in the car. Then again after we read our scriptures as a family before we went to bed. I said the prayer and the kids wanted to know why I was crying. I told them it was because I was happy. Yes, I am very happy with the results and how amazing my little trooper has handled everything. I am amazed at myself too. My husband? Nothing phases him. He always handles hard times very well.
Now to get back to the daily duties. My house is a wreck and I have more family coming to stay tonight. I'll have to go over my posts from yesterday and even this one to edit them. I had quickly posted them in the moment.
Wednesday, June 22, 2011
Picture and At Last!
Oh! I forgot to mention this one. After we ate breakfast, the doctor's nurse called us to tell us it was 1/2 done and it was going well. Very nice! Very nice indeed. I really like this team!
Later, after pumping I came back to the waiting room and watched my husband play wordscraper on facebook. I was only there for a bit when the surgeon came out with his camera. He was done. Her face looks amazing! He did such a good job. He said everyone was commenting at how beautiful this little baby, our baby was.
I saw her little face in the camera. She looks just like our 19-month-old daughter! She always favored her, but now she looks just like her. He told us to wait (ugh!) in the room and someone would come to take us back to see her.
Wait, wait, wait....chatting on facebook with my friend's little girl. Hubby goes off to get a pop and then after some minutes pass, I was told "Mommy, you can go see your baby now." Without thinking I shut my computer and jumped up to go see my baby girl.
She had a huge cloth over her part of her nose and upper lip. It was bloody. My poor baby! Her nose looks swollen. I got to nurse some. At last I held her in my arms again. My little baby was being a trooper. She rested and nursed a little bit. They did not have to give her blood and she was on some good medications. Hubby couldn't come in and we had to wait until they moved us to the 'temp' room. I can't remember the name of it. But it's only for 24-hour stays in the hospitals.
While I was in the other room, I think it's called the 'recovery room'..I think I got the names backwards, but the first room...there was a little girl who was crying and crying. She wanted her mommy and kept asking for her. It broke my heart. I wanted to tell them to please just get her mommy.
I could never work in a children's hospital. I would lose my money on tissues from all the crying I would do with them. :(
Later, after pumping I came back to the waiting room and watched my husband play wordscraper on facebook. I was only there for a bit when the surgeon came out with his camera. He was done. Her face looks amazing! He did such a good job. He said everyone was commenting at how beautiful this little baby, our baby was.
I saw her little face in the camera. She looks just like our 19-month-old daughter! She always favored her, but now she looks just like her. He told us to wait (ugh!) in the room and someone would come to take us back to see her.
Wait, wait, wait....chatting on facebook with my friend's little girl. Hubby goes off to get a pop and then after some minutes pass, I was told "Mommy, you can go see your baby now." Without thinking I shut my computer and jumped up to go see my baby girl.
She had a huge cloth over her part of her nose and upper lip. It was bloody. My poor baby! Her nose looks swollen. I got to nurse some. At last I held her in my arms again. My little baby was being a trooper. She rested and nursed a little bit. They did not have to give her blood and she was on some good medications. Hubby couldn't come in and we had to wait until they moved us to the 'temp' room. I can't remember the name of it. But it's only for 24-hour stays in the hospitals.
While I was in the other room, I think it's called the 'recovery room'..I think I got the names backwards, but the first room...there was a little girl who was crying and crying. She wanted her mommy and kept asking for her. It broke my heart. I wanted to tell them to please just get her mommy.
I could never work in a children's hospital. I would lose my money on tissues from all the crying I would do with them. :(
Anesthesiologist
When the anesthesiologist came to take her away...wait...let me back up. We were waiting for what seemed like hours, but probably just minutes in the waiting room. They finally came and cleared it out of all the families in there. I thought it was funny. Then all of these families (ours included) entered another area.
There we met with each person of the team: Operating Nurse, anesthesiologists, and surgeon. They got her vital signs and had me put on this over sized t-shirt on her. It was weird and hard to button. My husband came to the rescue and figured it out. Questions, questions and more of the same questions...allergies, medications, etc, etc, etc... They were amazing and sweet people. This hospital is wonderful! I am happy with our team.
I kept wondering when I was going to have to say good-bye. They were about to take her away and I felt my heart stop. Then they realized the surgeon had not seen us. I got to hold her some more. It was nice. They asked the surgeon if they could take her away and away she went.
The feeling was indeed awful and scary. I was totally trusting this medical team with my baby. I failed to mention they go over all the "what ifs" and it was, I must admit, a little scary to think of....blindness due to a stroke, etc...and possibly death, but the chances of this are very minimal. Well, duh! It is surgery right? There are risks in surgery. It's a risk I am having to take for my baby girl to have her cleft closed.
So, away she went with the anesthesiologist, my little baby girl. She was off to get a new face. My heart stopped and it took everything inside of me to keep from crying. The nurses kept looking at me. I must of looked weird or something. I guess maybe my face was contorted by trying to hold back my tears.
Be strong! Trust in God. This was what I was trying and succeeding in doing. It's really easy to do once you set your mind to do it. I was surprised at myself. We left and went to eat some breakfast. We walked around the hospital and ended up in the little garden. I took a picture of an amazing spider web. I did not get the entire web or spider. The web was amazing. My picture left much to be desired. Camera issues!!
I convinced my hubby to go back into the waiting room upstairs as I NEEDED to pump. I was in desperate need to do it. I feel asleep while pumping.
There we met with each person of the team: Operating Nurse, anesthesiologists, and surgeon. They got her vital signs and had me put on this over sized t-shirt on her. It was weird and hard to button. My husband came to the rescue and figured it out. Questions, questions and more of the same questions...allergies, medications, etc, etc, etc... They were amazing and sweet people. This hospital is wonderful! I am happy with our team.
I kept wondering when I was going to have to say good-bye. They were about to take her away and I felt my heart stop. Then they realized the surgeon had not seen us. I got to hold her some more. It was nice. They asked the surgeon if they could take her away and away she went.
The feeling was indeed awful and scary. I was totally trusting this medical team with my baby. I failed to mention they go over all the "what ifs" and it was, I must admit, a little scary to think of....blindness due to a stroke, etc...and possibly death, but the chances of this are very minimal. Well, duh! It is surgery right? There are risks in surgery. It's a risk I am having to take for my baby girl to have her cleft closed.
So, away she went with the anesthesiologist, my little baby girl. She was off to get a new face. My heart stopped and it took everything inside of me to keep from crying. The nurses kept looking at me. I must of looked weird or something. I guess maybe my face was contorted by trying to hold back my tears.
Be strong! Trust in God. This was what I was trying and succeeding in doing. It's really easy to do once you set your mind to do it. I was surprised at myself. We left and went to eat some breakfast. We walked around the hospital and ended up in the little garden. I took a picture of an amazing spider web. I did not get the entire web or spider. The web was amazing. My picture left much to be desired. Camera issues!!
I convinced my hubby to go back into the waiting room upstairs as I NEEDED to pump. I was in desperate need to do it. I feel asleep while pumping.
Waiting....
We made it to the hospital. I feel asleep and gave my husband bad directions, but we still got to the hospital early. We are outside the children's waiting area and no one is here yet. We got a phone number to call and there is no answer. I am not sure what to expect next, but I am grateful she is still sleeping soundly. I was afraid she was going to wake up when we had to unzip her clothes to take out her little leg. They needed to put a hospital information band on her.
I guess from now on it's just wait....wait...and wait...something I am not good at. I guess my patience muscle is in need of a workout? Ugh!
I guess from now on it's just wait....wait...and wait...something I am not good at. I guess my patience muscle is in need of a workout? Ugh!
On Our Way...
So, I did not sleep last night. Today is her big day. I have a little bit of butterflies, but I am actually very excited to see her new little smile. I feel really good right now and I hope we have a safe drive.
I gave her a bath last night and again this morning with that "special" soap they gave me. The worst part so far was waking her up to give her a bath. She was sleeping so soundly and now I am worried she will cry the entire trip up there wanting to eat. I have pedalight (spelling?) to feed her until the cut off time. I hope she will take a bottle. I have my pump, medicine feeders/droppers, etc... just in case she won't drink from a bottle.
So, we are off to Neverland as Peter Pan told Wendy and the gang as they flew away.
I gave her a bath last night and again this morning with that "special" soap they gave me. The worst part so far was waking her up to give her a bath. She was sleeping so soundly and now I am worried she will cry the entire trip up there wanting to eat. I have pedalight (spelling?) to feed her until the cut off time. I hope she will take a bottle. I have my pump, medicine feeders/droppers, etc... just in case she won't drink from a bottle.
So, we are off to Neverland as Peter Pan told Wendy and the gang as they flew away.
Tuesday, June 21, 2011
To Do
In preparation for tomorrow, I have to make sure I pack my pump to use while she is in surgery. I am going to bring a bottle just in case she can't nurse, but nursing is a priority! The list goes on and on of what to do and what I need to bring. A must is my laptop to blog and maybe watch a movie from. Oh, and I can't forget my journal.
My husband is lining a cousin to come and stay with our kids all day. I wanted to take them with us, but with our current vehicle situation it is not an option. We had been driving two trucks to accommodate our family. It's probably for the best since they are too little and will be bored out of their minds. I have to bath the baby tonight with this special soap and in the morning before we head out.
My nerves are fine, but my cold is still here. It's not as bad as before, but the worry has left me drained. I'm not worried anymore. I'm just impatient now. I still have stuff to clean around the house. I'm dragging my feet, but I don't plan on sleeping tonight since I have to stop nursing her at 3AM. I am afraid if I fall asleep I might nurse her on accident after this time and then they won't do the surgery. OH NO! I am not going through waiting another month for this date. I want this to be over and done with; so, I can see her new little face. I'm not very patient and this has been like a roller coaster. I like roller coasters, but this one is a ride I don't want to visit anytime soon. ha ha ha
My husband is lining a cousin to come and stay with our kids all day. I wanted to take them with us, but with our current vehicle situation it is not an option. We had been driving two trucks to accommodate our family. It's probably for the best since they are too little and will be bored out of their minds. I have to bath the baby tonight with this special soap and in the morning before we head out.
My nerves are fine, but my cold is still here. It's not as bad as before, but the worry has left me drained. I'm not worried anymore. I'm just impatient now. I still have stuff to clean around the house. I'm dragging my feet, but I don't plan on sleeping tonight since I have to stop nursing her at 3AM. I am afraid if I fall asleep I might nurse her on accident after this time and then they won't do the surgery. OH NO! I am not going through waiting another month for this date. I want this to be over and done with; so, I can see her new little face. I'm not very patient and this has been like a roller coaster. I like roller coasters, but this one is a ride I don't want to visit anytime soon. ha ha ha
The Day Before The Procedure
I woke up with my little one in my arms. She was all smiles when she finally woke up. I love her little face. Today is my last day with her face. By this time tomorrow the surgeon will be creating a new smile for her. How different will she look? I'm glad I've memorized her eyes and will know her eyes anywhere. Will fixing a nose and lip really alter her looks to make her look like another baby?
My house was clean last week, but then I caught a cold. I think it was from stress or maybe my children gave it to me. I got a priesthood blessing from my husband last night to help me with the surgery and get rid of my cold. I know I have lots to do since I have family coming up this weekend starting tomorrow night. Today I am wishing I had a maid and a nanny. I would spend the entire day devoted to my 3-month-old. Then again, I am glad I don't have those because they probably would wonder how a family could turn a home upside down like this in a few days. So, I will have to enjoy her in intervals when she is awake.
Now it's time to muster up the motivation to clean. My body is still tired from the cold or maybe because I couldn't sleep last night, but thankful my headache is finally gone. I better get moving because we need to have FHE tonight since we did not have it last night.
My house was clean last week, but then I caught a cold. I think it was from stress or maybe my children gave it to me. I got a priesthood blessing from my husband last night to help me with the surgery and get rid of my cold. I know I have lots to do since I have family coming up this weekend starting tomorrow night. Today I am wishing I had a maid and a nanny. I would spend the entire day devoted to my 3-month-old. Then again, I am glad I don't have those because they probably would wonder how a family could turn a home upside down like this in a few days. So, I will have to enjoy her in intervals when she is awake.
Now it's time to muster up the motivation to clean. My body is still tired from the cold or maybe because I couldn't sleep last night, but thankful my headache is finally gone. I better get moving because we need to have FHE tonight since we did not have it last night.
Monday, June 20, 2011
Emotional Day
I'm trying to function today. I had a feeling I needed to take the kids to take pictures this morning at a studio. I wanted to do it last week, but it did not pan out. This will be the baby's first time out for "real" pictures...I guess the ones I have been taking are fake? ha ha ha
I'm trying to keep it together and my son start to get upset because he wants to move back to Arizona. I try to get him to explain why and all he says is that it has sidewalks. I am wondering if it was because he spoke to his grandpa yesterday or I spoke to my niece/their cousin that use to live with us. I really don't know.
I can't get him into the bath now. Ugh! It's going to be a long day and I hope I can keep from crying in front of the children. I am trusting in Heavenly Father, but sometimes I hope this feeling is not a prompting.
I'm trying to keep it together and my son start to get upset because he wants to move back to Arizona. I try to get him to explain why and all he says is that it has sidewalks. I am wondering if it was because he spoke to his grandpa yesterday or I spoke to my niece/their cousin that use to live with us. I really don't know.
I can't get him into the bath now. Ugh! It's going to be a long day and I hope I can keep from crying in front of the children. I am trusting in Heavenly Father, but sometimes I hope this feeling is not a prompting.
Friday, June 17, 2011
5 days....
Feeling more butterflies in my stomach with each passing day to her surgery. I only have 5 days to go. I'm trying not to think about it too much. I am trying to enjoy her little face the way it is now and imagine what she will look like when she is done. I'm trying not to think of the dangers of being in a hospital and how they freak me out. I'm trying to ignore my worry of..."Will she be in pain for a long time?"
I like butterflies, but not as decor in my house, on my clothes (daughter's clothes OK) and especially when they have lodged themselves into my belly for days. I heard this somewhere I don't know where---but I think my tummy butterflies have butterflies in their tummies.
On the upside, my house has never been cleaner, but I still have more to do. How is it that you can sweep the floor and five minutes later see you need to sweep again?
I like butterflies, but not as decor in my house, on my clothes (daughter's clothes OK) and especially when they have lodged themselves into my belly for days. I heard this somewhere I don't know where---but I think my tummy butterflies have butterflies in their tummies.
On the upside, my house has never been cleaner, but I still have more to do. How is it that you can sweep the floor and five minutes later see you need to sweep again?
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