Long Days

Tuesday night after Kenley's surgery was a long one. She had to be kept upright so she could breathe easier so we put her in the swing to sleep. She is still required to wear the arm restraints for at least a week but in the middle of the night I heard her fussing and crying. When I went to check on her she had managed to get out of the braces and mess with her mouth. We knew then that the braces were too big and were no match for her strength. Fred had an idea to make her some new restraints with ace bandages and cardboard.  They work much better and with them she's still able to have a little more movement with her hands. Every time we lay her down or she's in the bouncer she immediately is grabbing her feet. She loves her feet now! My parents had given us a wedge pillow and we fixed that in her crib and now she sleeps all night with that and can still breathe. We take the restraints off when we hold her and I feed her that way she has a little freedom. Sometimes she just wants to be held which I gladly do. Her face is still swollen and and bruised but it gets a little better everyday. We have to put drops in her ears because she's prone to infections right now. Thankfully today she is more like herself but we miss her big smile so much. Kenley is trying to smile but her upper lip is pulled too tight right now so she can't. We love our baby girl so much and it breaks my heart to see her so miserable! Hopefully by next week she will feel and look even better. Thank you to everyone for all of the prayers and thoughts before, during, and after surgery for our family. ❤

Surgery

I will apologize in advance for such a long post. I can safely say that August 27, 2013 was one of the most stressful days of my life. That was the day that Kenley had her very first surgery. We arrived at the hospital at 5:00 in the morning for paperwork and pre-ops but she wasn't allowed to have anything to eat for the hours before, so you can imagine how mad she was. At 6:00 they called us back into the room and we started the process of getting her vital signs, signing forms, and each doctor explaining everything to us. This first surgery a few things were going to happen, she would have tubes put into her ears, her nose would be shaped and her cleft lip sown together. As the clock got closer to reaching 7:00 the more anxious and nervous I became. When the anesthesiologist and scrub nurses came in I completely broke down and was holding Kenley as tight as I could. All too soon they said that the sooner they could get started the sooner it would be done. They allowed me to carry her to the outside of the operating room but when it came time to hand her over I just couldn't make myself. I was a crying mess and Fred kept telling me to give her to them. They had to basically take her away from me because I couldn't let go of my precious baby girl. After they took her we sat down to wait for the updates to see how she was doing. The time passed by so slowly but finally we heard that she was doing good and they were almost done. When she was done we were allowed to go into recovery to be with her while she was waking up. I wish that somebody would of warned me about how scary that was going to be! When we opened the doors to the recovery room we could hear her crying except it sounded very rough. She was covered in wires and her arms were restrained so that she couldn't mess with her mouth or nose. The nurse handed her to me and she felt so heavy and stiff. She was still trying to come out of the anesthesia so she was confused and jerking her head and body around. My heart was racing and tears were pooling in my eyes because she looked miserable and her cry was so hard for me to hear. A tube had placed in her nose to help hold it in place until it heals and she isn't used to breathing out of her nose so she was freaking out. Every breath she drew her whole body shuddered and she gasped for air. It was very scary to listen to that and they keep saying that she was ok and it was normal. I tried to give her a bottle but she held her breath when she would drink so then of course she would choke which made her even more upset. Anyways it was a scary few hours in recovery but we were discharged the same day and drove the 3 hours home. I'm thankful that the day is over because it was hard of this mommas heart but I know that it was necessary. 

3 Month Success

Kenley is 3 months old today! Yesterday we went to San Antonio for her monthly speciality clinic appointment and a checkup with Dr. Xu, the pedi dentist. Everyone that we saw yesterday was very pleased with her progress! She weighed 10 pounds 12 ounces and is growing in length also but I don't remember the number. Her plastic surgeon, Dr. Wang, also cleared her for surgery along with Dr. Xu! We don't have a date yet but we are so relieved that she has reached this major milestone in her life. So now we just continue to keep her healthy and growing until the surgery! She's a little chatterbox and a happy baby, we are so thankful for that. Thank you to everyone for all of your prayers and support! 

                3 months old today! 

Kenley with her pedi dentist: Dr. Xu 

Milestones

I know that I haven't written in a couple of weeks but we have been super busy. Some wonderful things have happened lately in Kenley's journey! A few weeks ago we went for a check up to see her pedi dentist. We have continued to do the taping but the mouthpiece just didn't work for her. Dr. Xu was impressed at how well just the taping was doing for Kenley. Originally the gap between her top lip was 14 and it measured at a 9 and the gap between the top gum was a 16 and was then 11! We were very happy about that because it will make surgery easier on her muscles there. 

Now for the most exciting milestone is that Kenley weighed a little over 10 pounds today! That is one of the minimum requirements for the first surgery. She is now steadily gaining weight and we couldn't be more relieved. 

Also she has definitely started to smile at us and recognize our voices in a crowd. We have heard a few giggle like noises also! Her eyes light up when she sees us and it makes my heart so happy. I have never felt so much love for something so small and I'm loving being her mom. 

We see the speciality team on August 1st and we are hoping that they will give us the green light for surgery! 

2 Month Checkup

Today Kenley turned two months old so she had a checkup. We are very happy because she's growing so much and getting close to reaching her 10 pound goal! The downside to the appointment was that she had to get 4 immunizations. She did good and stopped crying when I picked her back up off of the table. When we came back home she slept for almost 6 hours! Kenley is doing amazingly better and we couldn't be more thankful! 

A Few Pictures...

On the night she was born: 

When she had the NG Tube:

The Dyna Cleft taping: 

Our little sweetheart: 

I love this! 

Swallow Study & Taping

The speech therapist had requested a swallow study be done and the surgeons requested that we see a pediatric dentist to start trying to pull her lip together before the surgery. We went back to San Antonio and had the swallow study done and she passed everything. They declared that she wasn't aspirating as long as we fed her a certain way. We were thankful for the good news but watching her go through the tests was heart breaking. She was so tiny laying on the big table and every cry she made just made it harder to watch. After the study we went to the pediatric dentist (Dr. Xu) and she showed us how to use the dyna cleft tape to help pull the muscles together. Also she told us that we needed to get a mold made of her mouth so they could make her a mouthpiece to wear to also help. She did fine with the taping and we could start to see a difference. We went back to get the mouthpiece made a week later. When they were taking the mold Kenley made the most pitiful cries I have ever heard and it was all I could to not breakdown and cry right there. To make the story short she didn't tolerate the mouthpiece but we got it trimmed and we are going to try it again. She saw the team of specialists the first week of June and they want to see her the first of August to see if she's ready for surgery. So for now we are just working on making sure she keeps gaining weight, trying the mouthpiece again, doing the dyna cleft taping, and giving her as much love as possible!

More Challenges

We were released from the hospital on Saturday and the following Tuesday we had a doctors appointment with the pedi to check and see how the feeding tube was working. We hated holding her down and putting the tube in and it hurt my heart so much every time but I knew that she had to eat somehow. At the appointment he decided that putting in a NG tube would be better. To explain it meant that the tube now went in the one nostril that was formed and it would stay in there. In the meantime we had ordered a bottle that was specially made for babies with clefts. Kenley hated the NG tube and ended up pulling it out of her nose a few times. Saturday morning we were in San Antonio and ready to see the team of specialists. The first person we saw was a speech therapist and she taught us how to properly feed Kenley with the bottle (the haberman) and requested a swallow study be done to make sure that she was aspirating any of the milk into her lungs. Next we saw the ear specialist (Dr. Perry) and he informed us that her ears were full of fluid because of the cleft palate and said that he would place tubes in her ears at the first surgery. Your palate is what allows the fluid in the ears to drain so when her palate is fixed then she will no longer need the tubes. I was shocked because I didn't realize the condition could effect her hearing also. Then came her two plastic surgeons, (Dr. Wang and Dr. Garcia) and the pediatric orthodontist. They said that her first surgery would be around 10 weeks when she was 10 pounds and her hemoglobin reached 10. The lip and nose will be fixed first and then when she's around a year old the soft and hard palate will be repaired. The orthodontist said that she will have to have at least 4 sets of braces before she's an adult and a bone marrow graft from her hip to form the missing gum. At least we have a few years before all of the teeth work starts. Once again I was shocked because I hadn't thought about her teeth being messed up because of the cleft lip and palate. We really loved everyone we met that day and we so relieved to be able to remove the tube and start teaching her to use the haberman bottle.

Challenges of the First Days

Friday morning our pediatrician, Dr. Faniku, came in and told us that other than the cleft lip and palate that Kenley was a healthy baby. We both were thankful for that and he told us about our wonderful cleft team in San Antonio and set us up an appointment with them for the next week. He kept stressing to me that this wasn't my fault and that I didn't do anything wrong but that it was just a freak accident. Of course that still don't stop me from feeling guilty and to this day it's still there.

I had tried to breast feed the night before but because of the clefts she couldn't feed so I began pumping instead. The hospital wasn't equipped to deal with a cleft baby so they tried different kinds of bottles but they didn't work so we ended up syringe feeding her the first day. The second day a nurse came in and told me while Fred was napping that we needed to feed Kenley with a tube because she wasn't getting enough milk. So once again I was in tears because I didn't want to have to put my girl through that. Later in the day Dr. Faniku came back and said that we had to put a tube down her throat every feeding to feed her and that the nurses would teach us. I had a huge knot in my stomach the couple of hours that we were waiting on them to come get us. As I watched them through tears streaming down my face and listened to Kenley screaming as they were putting the tube in place I honestly didn't think I could do it. Fred watched them closely and at the next feeding he did it with the nurse and did a wonderful job. At the next one after that I did it with the help of Fred and the nurse and I felt a little better because I saw how satisfied she was after her tummy was full. Saturday morning one of the grumpy nurses that we didn't like came in and said that we had to feed her so that the pediatrician could see if we could do it or not but that I had to place the tube. Thankfully we successfully fed her but the nurse told Dr. Faniku that we shouldn't be discharged because I wasn't comfortable taking care of her. I was furious because this grumpy nurse hadn't even watched us the whole night beforehand feeding and taking care of Kenley. So Fred asked to speak with the doctor by ourselves and we told him that we were fine and to please release us. After another feeding of him watching us then he released us finally! My parents met us at home that night and finally got to spend a little time with us and I was never so thankful to be home!

Kenley Pearl

It all began on Thursday, May 2, 2013 at 9:10 in the evening when we heard the first cries of our little girl. As soon as she had been delivered they took her and we didn't get to see her for a while but could hear her making noises. The room was silent except for the occasional cry from Kenley as she was being cleaned up and looked over by the nurse. I thought that it was strange that everyone was quietly working, I had expected them to be telling us how beautiful and perfect our little bundle was but they didn't. After a little while had passed I asked if she was ok and the nurse said, "well she has a cleft lip and palate." Tears were running down my face as I grabbed Fred's hand and squeezed it as if my life depended on it. Fred kept saying that it would be ok and we would make it through it and her condition was fixable. I felt like my world was crashing down on me and I felt so guilty. I felt like I had done something wrong and that it was my fault that she wasn't the perfect baby I had spent nine months dreaming about. We were finally allowed to hold and see her about 30 minutes or so after she was born. When Fred placed Kenley in my arms all bundled up and sleeping soundly I had so many things running through my head and my heart was breaking for my little girl because I knew that she had a lot to face. The first night Kenley ended up sleeping in my arms because she wouldn't stop crying. As I held her all night I knew that we had been blessed with a special little girl and even though there would be hard days that she was perfect for us.