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.

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.

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!

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.

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.

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.

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!

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.

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

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.

Fast Forward

I wish I had super powers to fast forwarded myself into next week.

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.

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?

10 Days

In ten days, we will be at the hospital with our baby girl. On Monday, I register my oldest child, my son, for Kindergarten. It appears that June will be a month of belly butterflies for me.

Toys and Books

The best part about being a stay-at-home mother right now is getting to watch my children at play. I get to write about all the funny, cute, sweet and sometimes scary (see post about the police) things they say and do. I would be sad to think of someone else enjoying them all day (I shutter as I think my oldest will be leaving me for Kindergarten soon) and getting to hear and see all the things they do.

One of my favorite things to see is my three oldest pretend play. It's fun to see them talk for their toys, cars and stuffed animals. I hope they can always remember their childhood as a fun and happy time.

Another favorite thing to watch is my son reading to his sisters at night. A few weeks ago, I had moved his bed into his sister's room and I found him reading to his 2nd little sister (our 3rd child). I am blessed to have such wonderful children. I'm grateful for the time I can have with them. The icing on the cake is to see daddy at play with them too. I think my life can't get any better than this....well, maybe if I had a maid to clean then I would have more play time.

Family Drawing

My son told me he was going to draw a picture of our family. When he was done he came over to show it to me. He pointed out each member of our family. When he got to our recent addition, he said, "See I drew her with her face fixed." I wish he had the words to describe how he feels or thinks about what is going to happen to his sister in a few weeks. I guess I don't have the adequate vocabulary to describe how I feel either.

Pre-OP Appointment

On Thursday we had her pre-op appointment. I had been calling it her post-op. Opps! That is for after the surgery. I do not know what I was thinking?! We were gone ALL day! We had to leave the house at 6:30 AM. We dropped the children off at their great-aunt's house. Drove the two hour or so drive to the hospital for our first of three appointments.

We meet with the surgeon, his nurse, the anesthesiologist, her nurse, and the surgeon's research team. Our first appointment was at 9:30 and we finished at 5:30 PM. What a long day to be driving in a car without A/C!

Poor baby cried at having her schedule interrupted. It made me wonder though...did she sense she was in a place where she was going to feel pain in the future? Did her spirit sense what was going to happen to her there? She was not herself. She rarely cries and she was crying like she had just received a shot.

I can't imagine what my mom went through with my brother. Those days were not as advanced as they are now. Plus, I can hold my baby while they check her, but they would take my brother into another room away from his parents. Awful! The treatment required long hospital stays. I don't know or will ever know how hard it was for either of them: Dad, Mom or brother. I'm just grateful my little one will have it easier and I will too.

When we went to pick up our other children, my son asked if we had fixed his sister. He knows she is going to have surgery soon. I am trying to talk my husband into letting them come with us. I think they should be there when she has her surgery. I want them to remember it. I never knew what was happening to my brother when I was little. It was (to me it seemed) as if it was wrong to talk about it. I don't want my daughter to think or feel this way at all or any of the other children.

Now it's just the waiting game until surgery day. I'm trying to take as many photos and videos of her now. I'm afraid once she is done I won't remember the little face I fell in love with...the way she looked when she came to me. I'm sad to see her wide smile has it's days numbered. I probably sound crazy for thinking this about her smile. It must be done for her sake and for her future. Thank you Heavenly Father for allow science to advance to have babies born with craniofacial issues be corrected.

I've been reading the history of the cleft and other birth defects. I guess before these surgeries were an option they just let these babies die. How awful! I can't imagine my world without my brother, nephew, daughter or any other child born with a cleft. It's beyond description at how horrible it is to think of letting a baby die for this little "problem".

I'm thankful to be living in this time period, very thankful.

Fourth Baby Pt 6

Tomorrow is June 1st and the countdown begins towards surgery day. We have her post-op surgery appointment on the 2nd and her surgery on the 22nd. My last few days of getting to see her face the way she came to me. Then it's a new face to love and cherish. I'm trusting in the Lord and trying not to lean on my own understanding. I know he will direct my paths in whatever bump life throws my way as long as I put Him first. I'm grateful and thankful for technology advancements which allow my baby to be "healed".

Dead of Night Post

Four children under the age of five can be overwhelming! I enjoy being a mother and I adore my children, but sometimes it is not easy especially when trying to get my old lady (for baring children) body back to "normal" from birth. Bath time is interesting when you account for the small water heater, which I am thankful to have; however, I can only fill the tub once.

My son is getting to old to bathe with his little sisters. My daughter told me I needed to have another boy baby. She was thinking up Halloween costumes for us and wanted someone to play Tod from Disney's Fox and the Hound. Our recent movie addition thanks to the donation box/give-a-way at the hospital.

Speaking of said place, which I am fond of (sarcasm, hospitals scare me) and thankful to have, our appointment went well. They are going to operate on her nose and lip. She is going to be done at less than 3 months old....well, 2 1/2 months old, which is pretty close to 3 months. The doctor is great and we are comfortable with him. A while back my husband told me he thought my missing teeth (missing both of my laterals/the 2 teeth next to the front teeth-top) could be related to cleft. I got mad. Not a good day for me, but I was feeling like he was blaming me for her cleft. He was just making an observation. He was right. I did not get mine and two of my siblings got little teeth from my dad. He wondered if I had spoken to the genetics department. We did not, but he said we would be an interesting family to study.

When she is either 6 or 7 she will need a bone graft since she does have an avelor (spelling?) cleft (it's inside of her mouth). Not sure if she will have missing teeth like her mother or not, but we will cross that bridge when we get there. I am worried about pain management, breastfeeding and bruising.

My last two evenings with four children have been an adventure. Scripture reading was a bust last night because my 18-month-old decided she did not want to sit, but have a fit (that ryhmnes! ha ha). She fell off the couch and landed on her nose. I did not reach her in time. She inherited my sensitive nose and gets nose bleeds at the drop of a hat. Poor baby! My son would not sleep. The baby was crying; then all three of the girls were crying. I can't even remember why my oldest girl was crying. Do all girls cry this much?

Tonight my son finally feel asleep and my 18mo went to bed without a fit. However, my oldest daughter decided to have a double whammy of bedtime blunders. She tore apart a toy and got beads all over her bed and floor. Then she had an accident. Meanwhile, newborn baby decided to cry since my nighttime supply of milk has dwindled thanks to another bout with mastitis. Mastitis, what a fun experience this is for a woman!. I had such a terrible fever the other night. I put a heating pad between my knees, my flannel PJ's, my robe, thick socks, a thick blanket, and a comforter, but I still could not stop shaking from the cold. My husband made me hot chocolate and this did not help either. When the fever left me sometime during the night I ended up sweating all the fluids out. This is what dwindled my supply and why I am up in the dead of night typing on here instead of sleeping. Why am I not sleeping? What a good idea! I'll finish this post later.

The Night Before the First Appointment

Tomorrow we head out of the house at 6:30 a.m. for our drive up north (2 1/2 hours or so) to meet the surgeon who will be examining our newborn baby girl. I wish I could describe this awful feeling in the pit of my stomach. It is turning over and over in a terrible way. Part of me wants to eat a tub of ice-cream (unfortunately, we have some butter pecan right now) and part of me wants to vomit and the last part of me just wants to cry. Is it fear? Uh, I think it is fear mixed with some good measure of anxiety. Plus, we are driving to a place we've never been to before. Will we get lost? Will we make the appointment on time? I really can't stand to be late to stuff like this and the anticipation of it makes me nervous.

Well, it's not just the drive, but the appointment itself. Why are we always so scared of the unknown? Well, I sort of know surgery is in the future for my sweet baby, but how many? She got her foot pricked for the PKU testing this week and she cried. I was nursing her at the time too. This did not help. I said, "Oh, baby and you have much worse in store for you." I should not have said this because I could not get her little crying face (still can't) out of my mind. Will she hurt much during and after the surgery? Will she cry in pain afterwards? Will she be in so much pain that she can't even cry? This is what I dread. I wish it was me instead.


How did Heavenly Father do it when he saw his son on the cross dying? I don't know. How does he handle all the horrors mankind does to each other? I imagine mine is just a microscopic sampling of how he feels on a day to day basis.