NINE MONTHS OUT!
So in February we were officially nine months out. What does that mean in the Cleft World? Nine months out for us means that our girl has come to the point of official progress. We went to the plastic surgeon on February 11th. Our Flo's surgery took. There are still some things we may need to deal with later, but for all of the months we have waited God has blessed us with very good news. Flo may not need surgery again until she is 14. Both the plastic surgeon and the orthodontist are very pleased with the outcome. I knew God would get us through it no matter what the outcome, but He is so good. He has blessed us above and beyond what we expected in this surgery. There was a point in November when I saw something going on with her gum and I asked the orthodontist about it. I was concerned and he told me that another doctor would be added to our little group to take care of this particular issue, but not to worry about it. In January, when we went back it was a non-issue because the gum itself had moved down over the tooth on its own. God's got this. No new doctor needed. Amazing. She is just so beautiful and so proud of her new smile. She is such a joy and just takes everything in stride. We are blessed to know her and truly blessed to be able to love her and call her our own. Thank you Lord for this wonderful person in our lives.
THE GOOD, THE BAD, AND THE UGLY of Cleft
I will spend the next group of blogs talking about the real ugly. Read on for now, but I will place some warnings in each blog. Feel free to skip anything you really would rather not know.
The GOOD- Tuff as nails. Cleft kids are just known for being tough. They have to be. Pain is known early on and if they were born an orphan, they know all kinds of pain. Hunger pain is the first one because a cleft palate does not allow them to drink or eat well. Most palates are not repaired and so they don't ever get enough to drink or eat until it is. That was the case for our little one. Second pain is Surgery pain. Little known secret about C$*&a. No narcotic pain killers for children. It is my understanding the Chinese philosophy on narcotics is they are addictive. They have a history and I understand that. There is also an issue with paying for this type of pain medication. I understand that as well. It has been our experience that a baby that endures any type of surgery for cleft in C&#*a receives Tylenol after surgery. In a lot of cases baby Tylenol.
The Bad- Our precious bundles do not come to us with great amounts of vitamins and minerals built up in their bodies. Protein is a rarity in an orphans diet. Our kids have lots of surgeries and sometimes they fail. Sometimes it is the surgeons fault, sometimes it is the parent's fault(sucker four days after coming home from surgery- my husband owns that t-shirt), sometimes it is the precious bundles fault (our Houdini came out of her arm braces in the middle of the night to suck on that ever elusive thumbie who gave her the most comfort when she was in C&^*a), and sometimes it is deficiencies in their body that they have not had enough time to overcome. With all of that, orphanage life does give most of them a rockin' immune system. In the past few years our daughter has had several sinus infections, but up until then you could kiss her all over with a stomach bug and girlfriend would laugh in your face. Stomach of steal! This little bonus was great when she was recovering from her early surgeries. We could have anyone visit and not stress over it.
THE UGLY- Surgeries are gruesome. They are bloody and mixed with saliva, mucous, etc. They are like some type of horror film where ketchup is involved only it is real blood mixed with all that other stuff and it is coming from their nose, mouth, and possibly ears. There little faces swell up and for a day or two and you are preparing to sue the surgeon and the hospital because your sweet little crooked nose baby now looks different and you are not sure if you did the right thing. There is crying and pain and little sad eyes looking at you from out of that puffy little face and they don't know why you put them through this. And at that point you don't know why either because that crooked nose and mouth is what made you fall in love with them in the first place. And they really did not sign up for all of this, they really just wanted a momma and baba. This was not in any of the contracts she signed in China!
More ugly shows up when some kid walks up to your child and says, "Hey, what happened to you?" Your child looks at them like they are nuts and the kid then looks at you and repeats the statement. All mothers have some type of explanation, but mine always goes like this- "In Heaven, Angels kiss all the babies goodbye before they come down to Earth, my daughter's angel got way to close to her lip and almost kissed it off. She had to have surgery to repair it." (My momma heart and sinful mind says, "take that you mean little bugger, now get to gettin. Tell your mom I said you needed some home trainin. Just so you know, Jesus and the Angels don't like meany kids.") I know reality is they are just curious children, but you know we all think it, at least once. We are mommas, that's what we are for, defending our precious babies. (Now that we have been in Junior Cotillion, my sinful tween mind would say, "Junior Cotillion would help you so, so much!")
So each time we as a family go through a cleft experience I think I will write about it and I don't. I am not sure why, I just don't. It is always painful, traumatic, etc. I am not sure if I had read all of this 7.5 years ago it would have been a Special Need I would have listed on that small check list sheet given to us by the adoption agency. I, today, can not imagine my world without Flo, but would we have taken that step if we had known the really ugly part of cleft? If a parent had written all about the ugly on a blog would we have jumped in head first? I just don't know. I believe wholeheartedly that God chose us to be Flo's parents. God had a plan. We followed.
Today, I feel like every parent should be informed when they take that leap of faith. First of all this is in no way just a "cosmetic thing." If you are a potential adoptive parent of a cleft baby, it is not just a cosmetic issue. There is way, way, way, way more to it. Your comfort ability with the issues of cleft will determine how you as parents deal with all that comes with it. I know some parents who are fine with nasal speech and some who do everything they can to loose that completely. I know some parents who do everything they can to prevent tooth loss and others who are fine with implants. Some parents spend thousands on private speech therapy and others go to free public school speech therapists. It is all in how you feel about each and every piece of the entire puzzle.
We as a whole have taken a long road through cleft and we are about to go on the biggest adventure of all. It is one that I have dreaded all along and it is one that cannot be avoided any longer. I have spent hours researching and reading and I am just a little overwhelmed by it all and how it will impact my baby girl.
I have had so many adventures on this journey and each one has had its own ups and downs, but this seems to me to be the most critical because it is by far the most painful and our daughter is old enough that she will never, ever, forget this experience for the rest of her entire life.
Momma in me side note-
When I was 8 I fell in some gravel and got a big gash on my knee. My mom had to use peroxide to clean it out and then she had to dig the gravel out with a pair of tweezers. Today, it would have been a few butterfly stitches, but it had been a long year for my mother. My brother had a broken jaw and a broken leg within two weeks of each other and the recovery of all that made my little boo boo seem like a "just walk it off" moment. I didn't get it then, but I totally get it today. Totally!
I remember that day vividly as I think about it. I can smell the gravel-asphalt mix, and then seeing it embedded in a bleeding wound was a little intense at 8. I remember the sting of the peroxide and feel of that cold metal in my wound and then seeing that gravel being taken out of the wound was even worse. After what seemed like hours, she took out the Bactine, gave it a squirt, and put a big bandaide on it. I got a kiss and I think a fudgescicle.
With that memory stuck in my head for 32 years plus and wearing the scar to this day, I know my baby will remember each and every uncomfortable moment of this surgery. I will pray that God will use those memories for His good.
I will take you down memory lane as we build up to our big day. These are some insights you may want to know about. If you are a potential adoptive parent and you prefer to live the ugly and not read about it, I will post "the ugly" by each blog post you should avoid. I may even start some paragraphs with "here comes the ugly" so you can skip the really intense stuff.
I will try to go back to our first surgery so many moons ago and through each of the rest until we endure this one. Keep us in your prayers!
October 2004Our daughter found herself on the first floor of a 4 story castle. Due to God's intervention she was in a building with a European charity on the top floor. This charity would send down a head princess to choose from the new group of 1st floor prince and princesses to move up to their floor. Most of the time she chose children that needed their floor the most. Many of these children were ill or desperately needed medical care. She never would give me exact details about how ill Flo was but I know that she was chosen on a very special day in October 2004.
When we were there she showed us a little boy about six months old in his crib sleeping. She told me that they brought him up a few days after he arrived because the nannies downstairs would not touch him. They were scared of him. He had a severe heart defect and it made him turn blue. He was abandoned in the city and abandoned in the orphanage as well. She knew she had to bring him up, but her own staff would not touch him either. They to were of afraid of him. She sent him as quickly as she could to have surgery because she knew he would not thrive without human touch. I think she is a special angel sent here by God. She is from Malaysia and spoke perfect British English. It was great to speak with her. She even came to our room at the hotel to see how our little princess was doing a few days later. I found out that this was rare. I could not figure out why this was going on and then our guide informed us that a week earlier a family came to bring home their child and changed their mind before they left Xi'an. They made the baby stay in another room from them at the hotel and the whole story was incredibly weird. I told her that it was not the baby, or Americans, or even the agency, it was definitely a Social Worker that did not do her job here stateside. That when a family falls in love with a baby they don't fall out of love that quickly. I told her the next time they have parents show up in China and insist the child stays in a different room with outside help from China to call the agency immediately. This is not normal, ever. I wanted Flo to sleep with me. I wanted to smell her next to me. I wanted to know every sound she made. I just can't imagine making her sleep in another room must less another hotel room. She was 22 months old no way would she be less than a foot from me or my husband at any time.
Surgery number one April 2005
Could get uglyFlo was chosen at 9 months old to have her lip repaired. The 4th floor got a sponsor to pay for her surgery. Surgeries in C%*$a are less expensive than here, however, other bills are incurred. For a child to travel to a top hospital and have care the money has to be raised for the medical bills, travel expenses and the feeding and board of the nanny that goes with the child. On the fourth floor a nanny always travels with the child to care for him/her while she/he is recovering in the hospital. At this point we did not know anything about adoption or the thought of doing it, so our little girl endured this surgery all alone.
What is surgery like in C&#*a? It depends on who does it. SmileTrain and other charities across the world normally bring in American or European expert doctors, nurses, and other staff to do a bunch of surgeries in just a few days. These medical experts bring as many supplies as they can to make the children as comfortable as possible.
It is believed that the first cleft lip surgery was done in China around 390 B.C. At this point in history you would believe that they have perfected this surgery to the point that people would travel from around the world to have surgery done there. Due to geographic size, population size, culture, and government entities this is not currently case.
Every hospital has a different way of the procedure and some are better than others.
When that early historical surgery was done, the lip was trimmed on each side and sutured together. Today, in some hospitals out in remote areas that procedure is still done today with local anesthesia. It is very difficult to know who did your child's surgery or how it was done. I do know that when our little one was there painkillers, such as narcotics, were not optional. Do you know anyone that has every had a nose job, or other facial procedure? As the skin is pulled together it tightens as it heals. This is known to produce pain. There is also lots of swelling which can increase that pulling and pain. What if your world class plastic surgeon gave you a few baby aspirin and sent you on your way or maybe a baby tylenol? This is typical of these types of surgeries in C$#%a. I do not have one photo of my baby right after her first surgery in the hospital, but if it was anything like the second one she was very swollen. I am sure she was in an incredible amount of pain.
If you have ever bumped your lip it swells up. Imagine a serious surgery to basically pull two pieces of skin that are separated from the bottom of the lip to the bottom of the left nasal floor. Those are brought together and stitched together without any upfront procedures to allow for more skin, stretching, etc. It is our understanding that the C*&$#!e in general do not like imperfection, ever. The goal of this surgery is to get rid of what they consider to be ugly. In their world, it does not have to be perfect pretty, the face just has to be whole. I might note that even a scarred face is still considered imperfection by their standards.
Momma in me side note-
Okay, I must say here, that I dream about what it would have been like to just kiss that sweet little face just once before it was repaired. To smell the milk in her nose and to just wuv on that little clefty face. Every time I see a brand new cleft baby I just wanna look and imagine what it was like for our girl. I think about the hours the momma spends using special bottles and spoons to feed her little special bundle and how that bonding would have been for us. God had different plans and I accept that, but I always think about it.
Children are taken to the best hospital for this surgery that the charity can afford at the time. Most charities in Chinese orphan care become experts on a Special Need that they have the most experience with in their particular orphanage. Flo's had tons of Cleft kids and a number of Spina Bifida kids. I know that they got her the best medical care they could. More importantly, our plastic surgeon was amazed at how well her lip was repaired and how the scar tissue was minimal. It pains me to know that she sat there for a week in the hospital with a nanny in pain and swollen without her actual momma to hold her and take care of her, but I know that whatever 16 - 18 year old that went with her did the best she could to comfort her. God had a plan and this is where it was for our Flo.
Next up is surgery number 2. In the U.S.A.