Monday, January 31, 2005

"For this child I have Prayed..."

I started off taking a picture of Rachel napping because she had intertwined her little fingers through the holes of her crocheted blanket. She was sleeping so soundly and was so sweet, that I just kept snapping pictures. And then I thought what an awesome picture it would be to get a shot of Rachel, asleep in her crib, with the scripture that was painted above her crib "For this child I have prayed..." 1 Samuel 1:27.

Day 5 with my new smile!

She looks a little mischevious, don't you think?!?!?!

5 Months Old / Recovery Day 5

Rachel is 5 months old today!! She has had quite the experiences in her short 5 months of life...two surgeries and one hospitalization! Last week when she was weighed the day before surgery, Rachel weighed 16lbs and 13oz! She's quite the little chub. We're glad her weight is up, makes it a lot less stressful should she loose a little bit of weight with her eating being affected by surgery.

Rachel continues to sleep through the night which such a huge blessing!! She is such a good and happy baby. She had mastered the art of rolling from her back to her tummy, but for the time being, that isn't being allowed...She can't have anything touching her lip, and that includes her rubbing her face on a blanket!

As for recovering from surgery, she's doing better with each passing day. Still fusing a bit with her bottles. But she's taking between 4-6oz a bottle. We're still using her Habermen feeder which is such a relief as I had read accounts of needing to syringe feed following a cleft lip repair.

Rachel is on two medications...antibiotics four times a day, and Tylenol with coedine every 4-6 hours for pain. And boy, it was sure easier to give her medications when she had a cleft in her lip to squirt it through. LOL. Now we have to wait for her to cry in order for her to open her mouth. Despite the difficulty, we love having her lip fixed. It's amazing how quickly you forget what she looked like not even a week ago!!

Rachel is tolerating her arm restraints. Poor girl has had all her comfort techniques taken away from her for the next 3 weeks...she's a side sleeper, and she can't do that in prevention of her lip rubbing on the sheet, she likes to have her fingers in her mouth and likes to suck on her palm of her hand, can't do neither of those things. She's getting held a lot, because if you lay her down, she still trys to turn over even with the restraints on! We laid her under her floor gym this morning for a few minutes with her restaints off and boy did she ever love that!!

It's so hard to believe she's already 5 months old! This time last year, we had just found out we were expecting!! Boy time flies....

Friday, January 28, 2005

First Night Home

Rachel was discharged from the hospital around 4:30p yesterday afternoon. And were we ever ready to get out of there! The room Rachel was in, had a wall dividing us from the other room, but only half way. So at any given time of the day or the night, there were potentially 5 other babies/toddlers crying, screaming, or alarms going off. It was enough to drive you crazy!

Rachel's first night home went well! Rachel has to have arm restraints on for 3 weeks and cannot have anything rub her lip. And because she has become a side sleeper, we had to strap her in her car seat and have her sleep in that. She did it though! She slept the night through!

As for eating, she's a little fussy. But who wouldn't be?!?! We're thinking she is having to learn how to suck, swallow, and breathe all over again, so her bottles are making her easily frustrated.

Other than that everything is going great! Her wide eyes are back and she's smiling!

2 Days Post Op

Rachel has discovered something new...her tongue! She's always stuck her tongue out a lot, but since her surgery, it's funny to watch her cause she keeps feeling her new lip.

This picture is a little dark, but I love the expression on her face!!! Her wide eyes are back!

Such a new smile to get use to!!

Wednesday, January 26, 2005

A New Look....

Here is Rachel after surgery and after being released from the recovery room. Doesn't she look totally different?!?!?

This picture was taken while Rachel was still in the Recovery Room. It's a great close up shot of the awesome repair job on her lip...and how awesome her nose looks!!!!

Rachel's Surgery!!!

Praise the Lord! God is so awesome!!!
All of our prayers for today were answered and then some.

Rachel was cleared for surgery 15 minutes before her scheduled time. When her plastic surgeon came to talk to us prior to her surgery, he was almost certain he could do the complete repair and had us sign consent for it. Once we passed the one hour mark of her being in surgery, we knew then that she was getting the complete lip repair!!! Because of that, she was admitted overnight. Steven is staying with her in the hospital tonight, he can sleep just about anywhere. :)

Rachel is doing awesome! She’s eating her bottles well and keeping those down. She had a bit of a fever this afternoon that spiked, but the Lord has already touched her and her temp is back to normal. Assuming she continues to do well through the night, Rachel will come home tomorrow.

I cannot put into words how overjoyed and full of thanks my heart is tonight. All day yesterday and into the evening, and even on the way to the hospital this morning, when we were unsure if Rachel would be able to have her surgery, I just kept saying over and over again..."I trust you God". If sugery was denied, I was still going to trust God, for he had a reason that surgery shouldn't take place today. It didn't mean I wouldn't be disappointed. But I trusted God, and He answered all my prayers for today.

A while back, I posted a list of prayers I have been praying for Rachel. One of the prayers was when we first learned that Rachel's lip was so wide it would take two surgeries to repair, was that the Lord would touch her and the surgeon would discover that once in there, he could do it in one surgery. God didn't answer that prayer that day. And yes, to be honest it was frustrating. Even more frustrating and upsetting a week later when that surgery became completely undone. A wise woman (my wonderful mother) shared with me last week, that prayer I prayed of desiring her lip to be repaired in one surgery wasn't answered at that time, but perhaps God would allow her lip to be totally repaired in one's surgery. And He did. He answered my prayer that her lip would be repaired completely in one surgery!!! I am so thankful, excited, and overjoyed beyond belief as to how God heard my prayers. Not only did He hear my prayers, he answered them.

The Bible says in James 4:2 "...You have not because you ask not". Well tonight I have...because I asked, in His perfect timing, and not in mine!

Before Surgery

One last picture of Rachel with her tape on...and with her wide smile!

Tuesday, January 25, 2005

Surgery - To Have or Not to Have?!?!?!?!

UGH! It's been a trying day.

Rachel started coughing last night. Her coughing was still present when she woke up this morning. She had a pre-admission appointment this afternoon for the nurse practioner to check her over and get cleared for surgery. Upon his assessement, he felt it was best to postpone the surgery. When he learned of the importance of having this surgery because the plastic surgeon is leaving and who knows when we'd get in to be seen by another, he called his attending physician and together they decided to go ahead and have us come in tomorrow morning as scheduled and they would re-evaluate her cough then and decide whether or not to proceed with surgery. So as it is right now, we have to check in at the hospital at 7:00am with a 9:00am surgery time.

I'm trying really hard to be positive about all this. But it's hard. Not a single thing has been easy in this journey...not a single thing. I had such a struggle last week in making sure we had insurance authorization for this surgery. Long story short..they kept trying to get authorization from two services in which we aren't even eligible for!!! Grrrr. I've done more praying today and in the night than you'd believe. I know, I know, I know if Rachel can't have surgery tomorrow, she'll get fixed. And for some reason, it wasn't the Lord's perfect timing for this surgery. But why?? :) Oh, so many questions I have in my head in regards to how rough this road has been...but God has His reasons. There's a purpose in all of this.

So here's to a good night, hopefully cough free, and a great outcome at the hospital tomorrow morning.

Sunday, January 16, 2005

Guest Book Post...

This site in which I am using for this blog doesn't allow you to have a guest book, or not at least where I can see how to work one in. :) I know there are people all over the United States who view this site and continue to come back and follow Rachel's Journey. I'd love it if you would take a second to leave your name and the state in which you are in, and perhaps how you came across Rachel's page. I'd love to see where abouts this page is being viewed. Thanks! And thanks for following Rachel's Journey.

Tuesday, January 11, 2005

Pre Op Appointment with Dr Lehocky

Rachel had a pre op appointment this afternoon with Dr Lehocky. It was more for our benefit as we had questions and needed to sign a surgery consent. But upon his seeing her, he thought her cleft lip didn't seem as wide, and that perhaps taping her lip the past couple of weeks has been successful! He also said that because of that, there is a possibility that he might be able to do the complete lip repair on the 26th and not just a lip adhesion. He won't know for sure until he gets in there and gets going. Needless to say, we're gonna keep taping her lip in hopes of it continuing to be successful!

With that said, we'd sure appreciate prayers for her surgery date...January 26th. Also that once Dr Lehocky gets going, he'd be able to do the complete lip repair rather than just the adhesion. Thank you! Thank you to all of you who check this page regularly and are so committed to keeping up and following Rachel on this journey.

Sunday, January 09, 2005

A Good Reminder...

I was listening to the online broadcast of the service of our previous church this morning, the message was on why God allows suffering. How many times have I not wondered that over the last couple of months, not for the sadness and sorrow I sometimes have for having this journey, but why did God allow Rachel to have a cleft lip, cleft palate, and a cleft gum. Needless to say, I know Rachel could have been born with much more severe things, but it doesn't make what we're going through any less important or less difficult to endure.

The message today was a good reminder that I needed to hear. I know in my head that God allows suffering for different reasons, I just needed to be reminded of the different reasons. It's my prayer and desire that this "suffering" Rachel has to endure, this journey to making her face whole, would allow me to be a witness for the Lord. To be able to give God all the glory when things happen that were ordained by Him...for example meeting that couple at Lowe's...that was God! I want to share with others all that God has done for our Rachel and in our life along the way.

Friday, January 07, 2005

Heading in the Right Direction...

We weren't really sure what direction to go after the news of Rachel's plastic surgeon leaving, so I called and left a message for the Craniofacial Team coordinator to seek her advice. She returned my call Thursday morning and spoke to Steven. She was very reassuring that our case would be taken care of and obviously prioritizing patients would be a must when it comes to surgery. She also said that the plastic surgeons work on one another patients all the time, so for us to have Dr Lehocky start Rachel's process and another surgeon finish, wouldn't really be that big of a problem. So we decided to go ahead and have Dr Lehocky perform the surgery.

The surgery scheduler called this afternoon, and unfortunately, the person did confirm for their surgery on the 12th. So Rachel will have her surgery on Wednesday, January 26th. We actually are going to be seeing Dr Lehocky on January the 11th for a pre op appointment.

One neat thing, is that my sister-in-law and brother-in-law will be here visiting from Oregon during that time. My sister-in-law has been such a wonderful source of encouragement and support and has been so good in calling and checking on us, and praying for us, and I'm happy she'll be here to see Rachel before surgery and the amazing difference after surgery. LOL...that's assuming Rachel looks as good after this surgery as she did last time.

Okay, good, we've got a date. At least I feel like we're heading in the right direction and not left stranded on the side of the road.

Wednesday, January 05, 2005

So Frustrating!!!

After the events of this afternoon, I'm not quite sure what the Lord was doing with having us meet that couple at Lowe's on Saturday. You'll see why by the end of this post.

When we last saw Dr Lehocky at Rachel's surgery post op appointment on November 30th, he was going to perhaps try and work us in to redo Rachel's surgery in the month of December, if not December then January. I've been leaving messages on his surgery schedulers voice mail for the last 4 weeks inquiring as to a date, if we have authorization from the insurance, etc. No on has ever returned my calls. This week, I started leaving messages everyday. Today I was so frustrated that no one had returned my calls that I called back again after lunch....and much to my surprise, the surgery scheduler actually answered her phone. She said I was on the list to call this afternoon, uh huh, yeah right. @@ <~~ rolling my eyes.

Anyways, it took her a while to find our file and I was placed on hold several times as she came back and forth to get information from me (did ya not get the very detailed messages I left on your voice mail everyday for the past 3 days?!?!?!) I was given January 31 as a surgery date. I told her that date was unacceptable and desired something sooner. It was then that she told me the 31st was Dr Lehocky's last day at Loma Linda!!! He's leaving the area.

The scheduler called back to inform us that there is a possible opening for January 12th providing the person scheduled for surgery continues to not return her calls. We're not sure we really want Dr Lehocky starting something he won't finish at this point.

When I asked the scheduler about the other plastic surgeons on the team and whether or not we could get an appointment to be seen by one of them soon, she said a consult would be possible, however, they are all booked up as far as surgery through the end of February. Waiting until March isn't acceptable either, Rachel will be 6 months old.

I called the office of another plastic surgeon whom we've heard wonderful things about. In fact, he was the doctor who started the craniofacial team at Loma Linda. He's now in private practice and not contracted with any insurances. Apparently making too good of money bringing in cash from all the people wanting extreme makeovers. LOL. However, we're thinking that perhaps we could pay cash for a consult just to get his professional opinion as to what to do, what surgeon would he recommend, etc.

UGH! All this entire situation is just so frustrating. I know God is in control and I don't doubt He still has a great work to be done in Rachel's life, and mine through this journey. But how come this journey isn't a smooth one?? Why so many bumps in the road??

Saturday, January 01, 2005

A Divine Appointment...At Lowes!

We went to Lowe's this afternoon and in our searching the aisles for what we needed, we were approached by a woman asking if our baby had a cleft. Apparently her older son noticed the tape across Rachel's mouth and pointed it out to his mom. When I told her she did, she said her son had had a cleft as well. I instantly went into question mode and one of the first things I asked her was where he's had all his surgeries, she said Loma Linda, I asked her who his surgeon was...This little boy's surgeon is the same surgeon as Rachel!! Well that answer certainly didn't stop me from asking more questions. We must have stood there in the middle of the aisle for 20-25 minutes talking with her and her husband, as Hannah and her little boy sat and organized the nearby Bob the Builder display. LOL.

Damon was born with the very exact cleft as Rachel... involving his lip, his palate, and aveolar ridge (the gum). He just turned 4 years old and has had 5 corrective surgeries thus far- the lip adhesion, formal lip correction, surgery to close his palate, and a couple surgeries to correct his nose formation. He is missing one of his front teeth and is currently going to speech therapy twice a week. As much as I wanted to say "come here little boy and let me look inside your mouth", I sure didn't want to traumatize the poor little guy, especially standing in the middle of Lowes! LOL. But I was just so curious to see what his repaired palate looked like as well as his cleft aveolar ridge with his missing tooth. I can say that the outside repairs looked awesome!

It was so nice to talk to other people who've been patients of Dr Lehocky for the past 4 years. They were so encouraging. They had nothing but positive things to say in regards to his work, his confidence as a plastic surgeon, and what a perfectionist he is.

The mom, her name was Brandon, said that after Damon was born, she had trouble bonding with him as she didn't want to hold him, feed him, etc. Like us, they didn't find out their son was to have a cleft lip and palate until the time of delivery and it was a shock to them as it had been for us. I found comfort in her sharing that with us, as I felt as though I was distant and withdrawn in the days to follow Rachel's birth. I don't feel I had trouble bonding with her, but I admit I had no interest in learning how to feed her with the special bottle, I left her feedings, diaper changes, and such to Steven. I don't know if it was the overwhelming emotional shock of having just given birth to a baby with a birth defect, the heavy medications I had been given during my c-section, the pain and discomfort from just having surgery, or the hormonal roller coaster I was on, or all of it combined. But I definitely could relate to some of the feelings she had expressed.

There were several times standing there and talking to this couple that I teared up and fought back the tears. It was soooo good to meet someone in person who has been down our road, none the less down the road with the very same doctors and surgeons as we are using. This was definitely a divine appointment from the Lord.