Ear Tubes

Christmas is almost upon us. Bethany had an appointment to check her ears again and she flunked her hearing test and had lots of gray fluid in both ears. So we set a date to get ear tubes put in; just 3 days later! But at least it's done before Christmas and before James leaves for TDY. We have been told that almost every baby with a cleft palate needs to have ear tubes put in within the first year of life. From what we understand it is because the Eustachian tubes cannot drain properly without them; fluid builds up causing ear infections and hearing loss. She did just fine with the procedure, which only takes a few minutes, and her hearing should be 100% better now. It's now on to last minute preparations for Christmas!!

Feeding Challenges

When we first started feeding Bethany solids at 5 months of age it was quite hard for her to manage getting food past her cleft and not in her nose. It would normally be a 20 minute struggle to get a couple of teaspoons of rice cereal past her lips and thrusting tongue. Most feedings ended with much of the food being expelled equally out of her mouth and nose with a lot of sneezing and snorting involved. It took two long months before she became proficient at maneuvering the food to avoid such catastrophes. There were times along the way when I wondered if she would ever accomplish this task and if it was worth the effort. There was counsel to "just feed her foods through a bottle until her surgery", but I was not comfortable with that and felt it important for her to learn to eat from a spoon while she was still young and willing to continue trying. This spoon that attaches to a squeeze bottle was a very good compromise and really helped her, perhaps because of where the food is on the spoon. Also, we started giving her Gerber Puffs at 6 and a half months old and those were really good practice for maneuverability and helped considerably with eating pureed foods as well. It did take a long time and lots of experimentation from Bethany and us. We learned what thicknesses and amounts she could handle and where to put it in her mouth; she learned how to maneuver the food around to avoid her nasal cavity being assaulted with peas and carrots! Occasionally there is still a struggle but we will continue to persevere until her next surgery.

Bethany is 8 months old now and what a happy, content baby she is! So sweet and cuddly, she will fall asleep in someone's arms or in her own bed. Also she is not a demanding personality in any way; even to the point where we feel like we are pushing her to eat a decent amount. At the same time, she is curious and eager to try things and investigate the world around her. What a delightful child she has been!
Last month we went to the Cleft Palate Clinic here in town and met with a team of doctors. Bethany had fluid in her ears and was put on antibiotics for 2 weeks. The fluid cleared up some and now it is a matter of closely monitoring her hearing and getting her ears checked regularly. There were no other concerns. Bethany seems to be doing well.

Post surgery checkup

Bethany had a checkup in Portland a few days ago and the surgeon said all looks well. James is the one who took her down there so the rest of us had a bit of a break with lots of fun together. It was a whirlwind of a trip - they flew there, had the appointment and flew back in less than 24 hours! We were given instructions to massage from her nose down to her lip for 20 minutes 3 times a day - just when I thought there would be a little more freedom since pumping is almost done! Oh well! We know that God is working on us, which goes to show how very much He loves and cares for us.

Bethany is now 6 months old and still as petite as ever - though its not because of the cleft because she is able to eat very well. She is growing and developing - her newest accomplishment is being able to sit without support and she is trying to figure out how to move on her belly. So far she just "swims" but she has got up on her knees a couple of times. Since she got back from her trip, Bethany has been a little bit under the weather with a slight temperature, runny nose, and very sweet and clingy. Yesterday she wanted to be held most of the day to which I happily obliged. Babies grow up all too fast so we better take advantage of those cuddly times:)

Three days later.

Just a quick update. It is Sunday, and Bethany is doing great. She is not needing the pain medication as much and is eating better. She is smiling easier now, and has slept a lot today. She has been getting used to the arm restraints, and is not as fussy about not being able to put hands in her mouth. Her new discovery - "I can make bubbles now!" Thanks for praying and have a great day.

The next day

Bethany is much better today. She has smiled several times and even laughed once. Her lip looks a little swollen, but she is much calmer. She is still on pain meds. every 4 hours, but seems to need them less.

Bethany's first Lip Repair 07 Aug 08

Well, this is Daddy talking, so there is probably some things I will forget. We are down in Portland Oregon and Bethany had her surgery this morning. It took about 4 hours before we were notified that she was in the recovery room recovering from anesthesia. It was an anxious time that was filled with thoughts of "hoping we did the right thing", and "I wish I had done more to prepare her" and such. We were grateful for all the people back home that were praying for us, and it was an encouragement to talk to them. We sat out on the seventh story play-deck and talked for a good while. I was able to talk to my sisters in Malawi, and it was good to hear their familiar cheerful voices. We were in our room when the call came that we could come down to the recovery room and see her. When we got down there, Bethany was already awake. Her eyes were alert, but her cry wasn't very enthusiastic. She is in arm restraints for 3 weeks to keep her from pulling the stitches out. Between that, the IV and monitors on her feet, and the numb feeling in her mouth, she was pretty overwhelmed. She has started eating slowly, but is having to learn how again. She has been sleeping lightly off and on with crying spells in between. She is on some pain medication, but is slowly being reduced to "as needed". She has not gotten to the point of being alert, and not crying. She has slept a lot today, so we hope she won't be up all night. Please keep praying for us, and we hope to be able to show her off soon. I have added a sideshow of the picts we took down here and we will be adding more as they come.

Thanks,
James

So much has happened since Bethany was born. What a busy time we have had! The summer is flying by and so far we have camped out in our backyard, went on a hike at Creamer's Field, and went swimming at Chena Lakes. Other than that we have just been learning how to survive with a family of 4 children and various health issues. It has been challenging at times, but an exciting adventure. Abigail was pretty miserable for about a month this spring with her hay fever but is fine now. Joshua's eczema has been much worse this spring and summer and it seems like we have tried everything to make it go away without much success. He has been pretty itchy and rashy. Just when it looks like its almost gone it flares up again. I have had trouble with my neck for several weeks and been to the chiropractor for it. It is now a lot better. Jayson is our only "normal" healthy child:) Between all of us we have been to one doctor or another 16 times in the last 4 months! God is still good and continues to be faithful and loving! We know we are in His hands.

On Friday the thirteenth of June Bethany had an evaluation at Shriner's Hospital for Children in Portland, Oregon. What we had heard about them was true. They are extremely friendly and helpful...wanting to make sure we understood everything before we left there. Everybody had to stop by to see the "adorable new baby!" We are just very glad and grateful to be able to use Shriner's for Bethany. We know she will receive excellent care with the doctors and nurses there. Her surgery date is only a few weeks away and we are looking forward to it with much anticipation; although we will greatly miss her special smile!

Birth Day

Bethany Kay was born on March 8, 2008 at a healthy 7lbs 2oz. What a beautiful baby! We were so excited to finally have her out and see her, especially her mommy! We found out from Day 1 what a special little girl she was when nursing didn't go well but she handled the frustration very well. We decided though, that it was better for her to receive Mommy's milk from a bottle and she is able to get much more nourishment that way.
Gram Gram was having a good time with the children and she was a tremendous help.

The Discovery

We first discovered Bethany's cleft lip and palate in a routine ultrasound at 23 weeks gestation. It was on October 31, Halloween. Other than being caught off guard when hearing the words "it looks like there is something wrong with the baby's face", we were given a peace about it. On the drive home, I asked James what he thought about it and his response was "well, this didn't take God by surprise." My first thought was, "God is too wise to make a mistake and He is too kind to do us wrong." So in other words, our baby's cleft was not an accident. God did not say, "Oops, I messed up on this one." He created her that way and He did not do it to be mean to us or her. He loves us too much for that. So the only other explanation is that He has a plan and it is for our good because He loves us. We can rest in that. It did away with any guilt we might put on ourselves or any feeling sorry for ourselves or our baby. It only leaves us with excitement for the future and seeing what God will do!

Our First entry

Well, our baby is three months old now. We have enjoyed reading so many other family's experiences that we have decided to document our own.