Friday, April 30, 2010

One step back...

Just when I thought I was in the running for mother of the year…I go and mess things up.

Wednesday night we were outside playing in the driveway as daddy was cleaning up the fishing boat. I had Hill in his Baby Bjorn because he loves to feel like he’s a part of the action by looking out at everything. We were pushing the stroller in the driveway and he was being such a big boy I thought I would let him ‘pretend’ to push it on into the garage so we could go inside and eat. I guided his hands on the bar of the stroller and just as we were cracking up at what a good job he was doing….his bobble head swung forward and he popped his lip on the stroller bar across the top. I didn’t know it hit his lip because he cried for just a minute and since he was facing forward I couldn’t see his face until I walked in the kitchen and saw his reflection in the refrigerator. Oh my God! I couldn’t get him out of the Bjorn fast enough. Blood was streaming down his face from his mouth all over his clothes and splattering onto the floor. I panicked! I screamed for Chip! I was crying, Hill was crying, Chip was the only one with the mental capacity to not just flail on the floor and flip out. It busted his stitches on the inside. Not just broke the stitches, but gaped it open on the inside. I knew I had messed up all this painful past week of healing and syringe feeding in just one split second of my being silly stupid. We gave Hill his pain medicine, cleaned him up, changed his clothes, fed him and skipped bath time and put him straight to bed. I know it was an accident, but I keep beating myself up about it.

Thank goodness we had his follow up appointment the next day. I called Dr. Shell first thing Thursday morning and he said he would allot more time for us instead of just a routine checkup in case we needed to do anything. He didn’t feel the need for us to rush right in.

Hill’s appointment was at 2:30 and we were out of there by 2:45. Dr. Shell said that he’s seen this happen before and expressed no true concern to rush back into surgery or stitch it up. Although it sets us back a little, it usually heals itself with no further surgery, we hope. He expects it the gap inside to heal back together within a week. How amazing is that? Dr. Shells’ main concern with cleft lip repair is under the nose - the skin between the lip and nose – which he said was healing fine. It looks awful to onlookers. Looks like a bloody area with puss gunk coming out under his nose. Almost looks like snotty boogers under his nose. Dr. Shell said that it is not puss and it is not boogers, but some medical term that he spelled for me that starts with an ‘s’ known as tissue juice. I know, gross eah? It’s good nasty stuff. It means the tissue is healing. We keep ointment on it 3-4 times a day that makes it look like a greasy boogery mess, but whatever makes him heal best is what we are going to do! We go back in a week (on Thursday the 6th) and he said we could stop syringe feeding come Wednesday. Wednesday will be Cinco de Mayo and I may just supply Kosciusko with margaritas to celebrate the occasion of going back to the bottle (no silly not me, Hill) and maybe giving him back his Ford frog.

Thanks to my good friend Megan for suggesting we try the big medicine droppers from Wal-Mart to feed with instead of the pain in the rump syringe. Hill, like his parents, is an instant gratification type of guy. If you take the syringe out of his mouth to draw up more formula he screams. It shouldn’t take but 2.5 seconds to draw the formula up the syringe to reinsert it into his mouth…those are the longest 2.5 seconds in the world. With the big medicine dropper, which was free at Wal-Mart, you just squirt in his mouth then go to the cup squeeze the bulb and voila 0.5 seconds to stick it back in his mouth. You are the heroin of the month, Megan. Love you!

So, nutshell version of our past week. Hill was doing FABULOUS until this busted lip set back. Mommy is sorry, Dr. Shell said it was gonna be ok…thank God! We will just have to put you in a bubble and be more careful until your lip heals so that another accident doesn’t happen.

He’s still the sweet smiley boy he always is, which is wonderful. Dr. Shell said to do whatever we needed to do to make him not cry because that causes stress on the lip and we don’t want it to tear anymore. So….Ford has been temporarily replaced for the past week with his new friend, Tylenol with codine. We tried to make it just Tylenol, but that doesn’t knock out the pain. Dr. said to continue usage with the codine for at least another week.

As if I don’t ask you guys for enough already; please continue to pray for us. This setback, although minor, sure has taken a toll on all three of us. Pray that Hill has a speedy recovery and his lip heals how it is suppose to…
Mama Lou will be flying in from Texas on Tuesday and I know that will make everything better. We can’t wait to see her!

Wednesday, April 28, 2010


Hill is healing nicely.  He is still a bit fussy due to sporadic pain in both his lip from the surgery and his stomach from the meds.  Hence, no posts due to dedicating my time to his needs and figuring out what to do.  I want to post pictures from the hopital and talk about the experience and friendships we made, but unfortunately that will have to wait until God creates another 2 hours in my day. 

We appreciate your prayers.  We undoubtedly felt them.  Tomorrow we go back to Memphis to see Dr. Shell.  I feel sweet Hill will get a good report.  Continue to pray.  This hurdle is not yet over.  He has another week of syringe feeding (which is not too much fun for either party) and I know his lip must itch from the stitches and healing but his arm restraints prevent him from touching his face....sometimes. 

Here is a picture of our little angel.  He is still his kissable sweet self!

Love to you all.

Tuesday, April 13, 2010

Hill's Surgery

People ask me when Hill’s surgery is and it’s on Wednesday the 21st of April.  Next week. Then they ask if we are ready or how I’m feeling and I can’t lie. Every time my response is the same. I’m a wreck. February was when I started to adjust to motherhood. March was the back to work, start a new job adjustment. Now April has become the month I worry myself into a spastic emotional cocoon where I don’t even have to talk about his surgery just simply think about it and I tear up. Last night Chip was out of town and Hill was asleep. I was getting ready for bed and I know you are never to wake a sleeping baby but I couldn’t help it. I needed my little boy to hold me. I needed to stare at him for the six zillionth time. I know his face better than my own. I’ve stared at him for the past 129,600 minutes since his birth.

It troubles me knowing that my little boy has to endure such a life changing surgery. Given, the surgery is for the better but he will never look the same. I feel it my obligation as his mother to etch into my brain every color fleck in his eyes, the abnormal shape of his nostrils and every curve of his misshaped lips. His huge smile will never be the same after next week and that breaks my heart. Although I know his new smile will melt my heart all the same.

Chip and I never thought we wouldn’t repair his cleft. It’s just so sad that the perfect baby God made wouldn’t be considered normal if he didn’t have his lip repaired. It’s totally cosmetic. I notice my reaction to peoples’ faces or lack of reaction when they look at him. Half the time it doesn’t faze me because I never look at him as having a cleft, I truly don't even see it. Sometimes if I feel they are studying him I’ll tell them he has a cleft lip and will have to have surgery. Chip has more of a prompt reaction. As soon as someone looks at Hill he points it out to most everyone saying, ‘he’s gotta have a little lip surgery.’ We take opposite approaches; we each handle the situation different.

I was at a party last weekend and Hill was with me. I had one mother come up to me randomly and tell me that she has a special needs child as well. He has had a massive amount of surgeries for limb repair and reconstruction. We talked about how she handled things mentally before his surgeries. She told me she was just as much a wreck as I am now. She did say something that really hit home though. She said, I couldn’t have done anything different to prevent the disabilities he has, but I can do something now to help him through them. I feel that way too. It was a simple way of saying all the things I ramble on and on about.  You cannot fathom how blessed we are...and we know it.  Unfortunatley, it doesn't ease my nerves or take away the emotional toll.

Most people are upset I haven’t kept up with my blog. I too am upset. I think about it every day and am making mental notes on what all to write about. We have just been so busy (which is a good thing for me right now) but I have taken over 1,000 pictures and plan to post them eventually. I haven’t forgotten that I’ve only posted up to his birth story and nothing afterwards about how he lost a lot of weight after we left the hospital and the doctors we visited and how going to New Orleans Children’s Hospital was the most humbling traumatic heart wrenching moment of my life.

There are still many many more posts to come, friends. I appreciate your patience as I tackle this huge weight that lays on my heart and mind. Once we get into recovery mode and settled then I promise to be better at keeping everyone up to date.

In the mean time, thanks for letting me vent. This has been the longest week in the history of weeks and I need your prayers. We need your prayers. Pray for Dr. Shell and his staff at Le Bonheur Children’s Hospital, pray for my sweet boy as he is operated on, pray that he comes out of anesthesia not scared, pray that his pain is manageable and that he can take to the way he has to eat for a couple of weeks. Pray for a speedy recovery and minimal scaring. Pray for my sanity and strength as I endure this emotional rollercoaster. Pray for Chip as he is always the rock in our family.

If I don’t get to post between now and next Wednesday, April 21st we have to be in Memphis at Le Bonheur at 5:30am (we will stay the night before in a hotel) and his surgery is scheduled for 7:30 am. Another thing to add to the multitude of prayer requests I have is that he cannot eat after midnight the night before. Pray that he is not starving before 7:30 Wednesday morning. They say that technically his surgery is an outpatient procedure but because he will have to eat differently (more than likely through a syringe) they keep him over night to make sure he takes to the new way of feeding. We should be home by Thursday evening.

Thank you all for everything. If you want to Google Hill’s condition it is called a right unilateral incomplete cleft lip. The procedure they will be doing is the Millard operative technique it's more or less a recess of one lip and an advancement of the other lip to where they symmetrically fall into place.

I found two great articles that explain what the doctor will do for Hill. Some parts of Article 1 are sort of confusing but lays it out from a technical aspect.  Some of it is irrelevant, but if you follow the chart it makes sense.  Article 2 seems like a paper a medical student did and is informative.  It has pictures that you may find disturbing.      Article 1 and Article 2

Hill will probably have to wear elbow immobilizers for a couple weeks so he doesn’t touch his mouth. For those of you that have been around him lately knows he loves his hands in his mouth at all times. It will be sad to see my little bear possibly having to wear this Elbow Brace

Doctor Shell, his plastic surgeon, has a website too. Click here

Dr. Shell has done thousands of repairs. He wrote a book called pediatric plastic surgery. He was over the cleft team at University of TN for years and also he does Operation Smile where he goes overseas to third world countries to repair clefts. Not to mention all the repairs he's done personally through the mission trips he goes on through his church. I have 100% faith in his ability.

He also does Botox for soccer moms and if you check out his website it looks like you can get 20% off of breast augmentation. If you decide to do so tell him I referred you. We hope this will be Hill's only surgery, but if he has to have other nose jobs in the future maybe Dr. Shell will give us a discount for all the referrals we’ve sent him.

If you have any questions about Hill's surgery please let me know. I will try my best to answer them.  Keeping people informed and having open lines of communication seems to be the best way to educate people on cleft children and what Hill will endure.  I don't mean to sound like a Sunday morning educational video or the 19 cents a day, same as a small cup of coffee ethiopian feed the children commercials, but really.  Since our discovery of Hill's cleft I have met more people that this affects and how common it really is.  Chip and I have offered friendship and phone numbers to both Dr. North's office and Women's Hospital for patients that struggle and jump on this rollercoaster into the unknown and have questions from a parents perspective.  If it weren't for people that have experienced or are going through this with me I would be even more so of a wreck than I am now.  Support, prayers, family and friendship is the key.

Love to you all!

Monday, April 12, 2010

New Hair do

You like my new do?

Silly Katie Lou Lou was sitting on the couch by me and her fancy tail makes the best hair piece ever!

Thursday, April 08, 2010

Happy 4th Anniversary

Dear Chip,
Happy 4th Anniversary to you!  What a wonderful life we have, I couldn't imagine being without you.  This year we get to share our love with such a sweet little boy.  Thank you for being the best husband and daddy in the world.  I am so lucky to have you.  Hill is so lucky to have you.


Easter 2010