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08-15-2008, 06:46 PM | #1 |
No Longer a Member Join Date: Jan 2007 Location: PORTERVILLE, CA
Posts: 1,574
| My Personal Journey with cleft lip and palate I am a very private person. I do not like putting myself in what I consider to be a vulnerable position and opening my life to the scrutiny of strangers. I have fought this all day and have now reached a place where I am at peace with it. There are some here that know me on a more 'personal' level other than just by my postings on this board. For this I am thankful because I know that if I don't have the nerve to return after this, they will still be my friends. Whatever the result of this post, I have decided to simply count it as good if it touches only one heart, and that one heart lets the door creak open only small increment more. So here I am: When I was fifteen, I became pregnant. This was not a result of the normal situation. It was not a 'oh, how I love you' kind of a thing. That is enough info on that. I did not want a baby. I sorrowed over the fact that I was pregnant. I was angry, hurt and confused. I truly didn't know what to do. The option of abortion was presented and I could not take that particular road. When my daughter was born, I was seven months into my sixteenth year. Pregnancy...it is a relationship that develops over months of time and when I first felt her move, my heart moved also. I fell in love with her before she was born and that was the way it should be. In those days, when you went to the hospital at sixteen to deliver, they didn't say anything about 'natural' childbirth. They did what they thought best. So when my doctor (a wonderful man) came to me while I was in the 'recovery' room in a drugged state and first told me of my daughter's deformities, I had no earthly idea what he was saying. I only know that he told me it what he was talking about could be repaired and for me not to worry. I trusted him and so I did not worry. Until they brought me my baby. Dear God! It scared me half out of my mind. More than half! I cried. A lot. I was afraid of her. I thought surely that I would inadvertently harm her in some way. How in the world would I be able to take care of her needs?! I only knew about babies from babysitting nieces and nephews. Well, I learned many things, all the hard way, by trial and error. Although I was still afraid, I did learn how to care for her. When we went to my sister’s home, she slept beside my bed in a drawer that was positioned on the seats of two chairs that faced each other. I kept my hand on her little back to make sure she was breathing. They gave me this bulb syringe and told me to use it frequently to keep the saliva out of her mouth. I probably did it more than necessary, but I was terrified that she would strangle or something. Sometimes she did. When she did that normal ‘baby’ thing that they do, you know….that hesitation breathing and sighing? I would leap out of bed in despair and worry thinking something awful was going on. But it wasn’t. I was a basket case over these kinds of things due to my ignorance, I think. Feeding her was a whole other learning situation. She couldn’t suckle. Here palate was completely open. Her nose looked as if it had been ‘pushed’ off to one side and a bit ‘smooshed’. This is where the cleft began. Just below her left nostril. It split the lip, the gum and the palate, all the way through the soft palate. Not a narrow split. Full open. When she drank from a bottle, a preemie nipple (very soft and pliant) was used. She couldn’t get anything with a regular one. It was difficult for her but she worked hard at it, bless her little heart. Later, when it was time for cereal and strained foods, the action of her tongue would push the food up into the cleft. Nobody told me what to do about that. So I placed my mouth over hers and gently blew and forced the food out with my breath. I continued to do this until the palate was repaired when she was 18 months old. Her lip and nose were repaired when she was eight months old. They told me the surgery would last for four hours. Eight hours later they brought her back to her room. I had cried myself to sleep and when they woke me and brought her in, the nurse asked me where her mother was. I said “I am her mother”. She said, ‘You couldn’t be…you are just a baby yourself”… When I first looked at her my heart crumbled into tiny little pieces. I was crushed. She was still all bloody and her face was so very swollen! They had both nostrils packed with gauze. There was a pliable metal strip attached (with stitches) to her nose that was bent around part of her nose to give it the shape the surgeon was trying to attain. She no longer looked like my baby. It was like someone had stolen the little face I loved so much. Now, please understand….I knew all this was necessary but I loved her just the way she was. She was beautiful to me and now I barely recognized her. She had to be kept propped in a sitting position because her tongue was so swollen it was splitting. I had to keep it wet for her. She was so sedated that if she had fallen over into a lying position her tongue would have covered the back of her throat and she would have smothered. I sat with her myself, around the clock, taking no doze pills to stay awake. Once, she became violently ill and began throwing up. I panicked!! I called the nurses with the button and nobody came so I went running down the corridor with her on my way to the nurse’s station! I couldn’t see how she could breath through that and thought for sure she would choke to death. I was absolutely frantic! They were angry with me because of the long line of throw up down the corridor. These nurses had no compassion at all. They were really mean to me and I constantly was in trouble with them. Continued in the very next post. I told you it was long..... __________________________________________________ _____________ |
Welcome Guest! | |
08-15-2008, 06:47 PM | #2 |
No Longer a Member Join Date: Jan 2007 Location: PORTERVILLE, CA
Posts: 1,574
| sorry for length, but this is continued.... Continuation: There was a baby that shared her room that was also there for cleft lip and palate surgery. His deformity showed me how blessed we truly were because he had a bilateral cleft lip and palate. (One on each side). He had nobody with him. He was always all alone. I tried to comfort him and stayed in trouble for that as well. His family came only on weekends. Scads of them. They would all gang in, stay for about thirty minutes and leave. He sobbed like his heart was breaking and it probably was. Mine too. I would hold him to feed him his bottle and when the nurses found me doing it they yelled at me a lot. When I changed his diapers, more yelling. Poor, poor baby. It got to the point to where the best I could do for him was to rub his back. He would hold his little arms out to me and I couldn’t pick him up as I wasn’t allowed. They had told me that if they caught me with him again, they would make me leave. When we went home, I wanted to take him, too. I had noticed that the serum oozing from her wounds of her nostrils were creating a ‘scab’ over the both nostril openings. They told me to leave it alone, it was supposed to be that way. Then, after a few days when it was completely covering, the head nurse came in and simply laid her down, got the tweezers and proceeded to rip these off saying it wasn’t supposed to be that way. My baby was hysterical! I told her I had asked repeatedly but was ignored and told to leave it alone. However, she insisted it was my fault. Egads! This place was a nightmare. The only blessing about it was the surgeon. His name is/was Wesley Flannigan and he was known worldwide for his work with cleft palate repair. He taught there. So even though we were dirt poor, God still provided us with the absolute best surgeon. We finally got to go home and I was so glad to leave there. We still had many more surgeries to go, but had made it through the first one. MY daughter was so afraid of anyone who wore white after that. She became enveloped in pure terror over anyone dressed in white. I had to stop wearing white because it distressed her so. She identified her pain with the color, and why wouldn’t she? She had a baby mind that just couldn’t sort it all out. There is so much more to this, for this was just the beginning but I am weary and emotionally drained just from remembering all of this pain and heartache. This is just the beginning of the story. I just hope that I have been able to convey the pain involved in dealing with such. You cannot relax for a moment when dealing with the likes of this. Whatever you chose to think or say about what I have written....throw rocks, laugh, or commiserate....this is a glimpse into my heart and why I must continue to fight for the rights of little Emma. I know she is a puppy. But to me she is most definitely 'just a puppy' and I have to support efforts to help her because it is the right thing to do. My heart knows it and my mind knows it. She has special needs that need to be attended to. This type of surgery cost lots and lots of money. If I had Emma here with me, I would be as dedicated to her as the dedication I am witnessing now. BUT....I would need help to have her medical needs met. I would beg, if necessary. I am not beyond or above it. I just can't understand why some are working so hard against her. It breaks me heart and I cry over it. Please, please....don't. Enough is enough. Please let her have her chance. She deserves it. Truly This is an open heartfelt plea. Please stop. It is not benifiting you in any way. How could it? Sammi |
08-15-2008, 06:56 PM | #3 |
Donating YT 1000 Club Member Join Date: Oct 2007 Location: Fort Worth, TX
Posts: 2,133
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__________________ Libby Gracie Mia & "Baby Emma" ~ My precious Natalie Kaye, you will ALWAYS be in my heart ~ I LOVE YOU!!! |
08-15-2008, 06:58 PM | #4 |
YT 500 Club Member Join Date: Aug 2007 Location: Ontario,Canada
Posts: 626
| Bless your heart....your story touched my heart deeply. Thank you for sharing such a personal part of your life with us for the sake of saving our little Emma. God bless you!!! God knew what he was doing when he sent your daughter to you. You loved her like no one else could. She is so blessed to have had you as a mother.
__________________ ~Mary~ Mommy to Mindy 1 Years Old and Bear I Years Old "Proud Member of the Little Gentlemen's Club " |
08-15-2008, 07:07 PM | #5 |
No Longer a Member Join Date: Jan 2007 Location: PORTERVILLE, CA
Posts: 1,574
| I am sitting here crying. I just can't believe what is going on. My heart is hurting so bad. That baby is so little and vulnerable. She ....God, she needs help. I needed help with my baby too. It costs hundreds of thousand back then, even for a human baby to have these surgeries. It won't cost that much for a pup but I wish I were rich right now. I don't often wish that for it is not so important to me. But I would take care of Emma's need if I could. I am so thankful for the mercy shown to my baby. I am glad we didn't have someone following us around like that. |
08-15-2008, 07:11 PM | #6 |
BANNED! Join Date: Jul 2005 Location: USA
Posts: 9,999
| I see that lit emma has brought back so many memorys to you. you are a very strong women and God must of known you would be the perfect mother to your little girl. bless you hun.....I hope the Dena is able to help emma too and I wished everything else would just go away that dosent matter in Dena's thread. its about emma and it should stay only about emma. Many of you have helped me with my Little Mickey and his stones, with prayers good thoughts and donations. Ill never forget the wondeful people who helped me. He had had two surgurys with in 6 months and all of you helped me with one of them and Im so thankful for that. So Hun thank you for sharing your story with us, I could always tell from many of your post that your a wonderful caring person. |
08-15-2008, 07:11 PM | #7 |
No Longer a Member Join Date: Jan 2007 Location: PORTERVILLE, CA
Posts: 1,574
| My daughter at 15...she has always wanted a cupid's bow...you know on your lip in the middle on top? She has never had one. Last edited by sammiz; 08-15-2008 at 07:13 PM. |
08-15-2008, 07:19 PM | #8 |
BANNED! Join Date: Jul 2005 Location: USA
Posts: 9,999
| Your daughter is beautiful. thanks for sharing her picture with us. she has such a pretty face and I love her hair, so pretty. |
08-15-2008, 07:24 PM | #9 |
No Longer a Member Join Date: Jan 2007 Location: PORTERVILLE, CA
Posts: 1,574
| Thank you. I always thought so too, but she never did. We had so many surgeries and appliances in her little mouth. There was one that had a 'key' which was a thing I place in a hole to turn it every day to widen the roof of her mouth. It was painful for her. She recently had another ear surgery (one of many) and more work done on her teeth. Her self confindence was always so low. She was teased and taunted so much. I fought for her as much as I could. Today she is a wonderful and compassionate woman and I have three grandchildren. I am very thankful for her presence in my life. I love her so very much. |
08-15-2008, 08:55 PM | #10 |
Furbutts = LOVE Donating Member Moderator | Sammi... What an incredible journey you've shared here. I can't even imagine going through what you did, at that age - at any age, for that matter. You are a very courageous and wonderful person - your daughter clearly was wise in her choice of Mothers. Thank you for sharing your story.
__________________ ~ A friend told me I was delusional. I nearly fell off my unicorn. ~ °¨¨¨°ºOº°¨¨¨° Ann | Pfeiffer | Marcel Verdel Purcell | Wylie | Artie °¨¨¨°ºOº°¨¨¨° |
08-15-2008, 09:23 PM | #11 | |
No Longer a Member Join Date: Jan 2007 Location: PORTERVILLE, CA
Posts: 1,574
| Quote:
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08-15-2008, 09:55 PM | #12 |
Donating YT 1000 Club Member Join Date: Aug 2004 Location: Florida
Posts: 1,568
| I have not posted in Emma's thread for a few days. I was posting all the time because I was so eager to see her,know her and see how she was doing. I stopped posting because things got ugly and I did not want to post as angry as I was feeling over all the hurtful things that have been said. I think some people have never been in a situation that they may be able to relate to someone's else's pain. I have never had a baby with a cleft lip or palate. I have never owned a puppy with these problems either. But I have had a sick puppy in my hands for many months,sleepless nights,forced syringe feedings ,lots of hypoglycemia attacks and just suffering from seeing my furbaby suffer so much from testing and surgery.Cried myself to sleep for days because I felt he was going to die if I couldnt come up with the money for his surgery. Thank you so much for sharing such a personal story. There's a lot of good in this world still.Taking responsibility for a 21 hour old puppy that does NOT belong to you but yet you feel you have to do something....That tells me there is still a lot of good in this world. Even with all the ugly things some people do.I will continue to pray for baby Emma. For all those negative thinking people, you should see how beautiful Emma is becoming. How much she's gaining and fighting.She is SUPEr strong and it shows fromher webcam! Again, thank you Genie,Cookie,Lola,Angel & Lucky |
08-15-2008, 10:12 PM | #13 | ||
No Longer a Member Join Date: Jan 2007 Location: PORTERVILLE, CA
Posts: 1,574
| Quote:
Quote:
Thank you for your response. | ||
08-15-2008, 10:20 PM | #14 |
My little Shadow Donating YT Member | Your story will touch more than one heart, that's for sure. You are truly a compassionate person who God knew could handle such trials. What a blessing for your daughter to have you as her Mother & what a blessing she's been in your life. She is beautiful, & it sounds as though inside & out. Thank you for sharing your story. A Life without compassion is an empty soul.
__________________ Bella Ganma-ma to ColeRIPNoahRIP |
08-15-2008, 10:38 PM | #15 | |
No Longer a Member Join Date: Jan 2007 Location: PORTERVILLE, CA
Posts: 1,574
| Quote:
Personally, I find life to be difficult for many people. Have you ever heard that song by Paul Simon...Some Folks Lives Roll Easy? Some folks live roll easy as a breeze Driftin' through a summer's night Headed for a sunny day. Most folks lives..oh they stumble , Lord they fall Through no fault of their own Some folks never catch their star. I won't write the whole thing, but these are pretty profound words in this song. I love this song! I believe it is important to lend a hand and help others up. Sometimes it is our turn to be on the downside, eh? That helping hand is pretty awesome in troublesome situations. | |
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