Janessa
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My name is Trina and my daughter name is Janessa. I had a lot of complications before she was born, I was on bed rest for 2 months at home and another in the hospital. I lost all my fluid and eventually started to bleed, they had to take the baby, at the time I didn't even know she was a girl, when they took her, I only saw her for a split second, she was born at 26 wks and weighted 1.12oz, she was tiny.
For a little thing she did very well, they had to put tubes in her lungs to drain them and she had a heart surgery to clamp some valves. We were nervous wrecks. Then she started having the problems with her breathing, she was back and forth on vents and hood, she'd maintain for a day or two but would struggle. Finally, the doctor said she had narrowing (stenosis) of the trachea, and she had to have the trach. We were terrified, they had done the procedure and I just cried to see her with it.
Then to clean it and change it, we had been shown and helped by the nurses in the NICU, she was still to small to come home. She had been in the NICU for 4 months, it was crazy, we went and saw her everyday and were there for hours, we missed her so much.
Well, when it came to the trach... I was like no way I can't do that, they basically said you have to do it. I was soooo scared, but I did it. At first, I had my husband do it most of the time, cause I was so afraid, but now I do it, and believe it or not you be come a pro. Sort of like changing a diaper, it becomes second nature.
It is a lot of work, and caring around supplies, and seems like we have her in a bubble, because when she gets sick, she didn't eat, throwing up, and she had to be put back on oxygen. So, it can be a lot of work, but try to get yourself in a routine, if you can. Sometimes that helps.
I still have a lot of anxiety. But what can you do, eventually we hope she will have it out, now our battle is getting her to gain weight, she is a very picky eater, doesn't want to eat anything, the doctors have her on Pediasure and have us put oil in her milk and extra calorie powder. Plus, I try to get her to eat things, but no luck. The thing is, the doctors say she is falling off the growth chart, which she looks pretty normal to me. And she has to gain the weight so the doctors can do reconstructed surgery for the trach.
Not as simple as taking it out, I wish. But the narrowing hasn't improved and they are looking at taking a cartilage from her rib bone. So, she has to be 25 lbs for that, and the doctors now want her to have the g-tube, which we are dreading that. We really don't want her to have that. We are hoping by her next visit she has put on some weight. Right now she weights 18 lbs. So, we hope and pray.
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As with the trach, she can say some words, Mama, and Papa, she is 2 yrs old, and she does pretty good. We got her to say "purple" the other day, which was great. We tried the Passy-Muir valve, she hates it, she doesn't tolerate it for long. She'll stick her finger in the trach. and vocalize. She's also been known to pull out the trach and I'll either see it or she'll come tell me, she's ok for a minute or two and I lay her down and fix it. Or candy that's the worst it gets on her chin and the trach will stick and come out. So we try not to give to much candy. Baths are a little hard, takes both of us to do it, Daddy washes and then I rinse, we try to be very careful, we make a good team.
She cooperates pretty good. She is a good girl and she helps. We give her treatments three or four times a day, and she is on humidity at night and her monitor. But I still sleep with one eye open, I still jump up when I hear she has to be suctioned or if she desates. I do hope she can get the trach out soon, so she can run and play like a normal kid, with other kids. My doctor doesn't want her around other kids, we even go through the back door when we go for a check up. So there is some stress, but she is worth it all, she is my little angel. She acts just like a normal kid and has me running all over the place, she is spit fire, into everything. Couldn't wait for her to walk and now, I'm like what was I thinking :o)
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She gets all kinds of therapies, speech twice a week and physical and early intervention (Easter seals). So, there are a lot of programs to help anyone with a trach baby/kid. I just wanted to tell about my little girl and maybe it would be helpful to another little girl or boy and too their Mommy and Daddy. Don't worry your not alone. God is there holding your hand, things do get better.
And your child will be running the roost, like my little one is. You'll be a pro in no time. God Bless, hopes this helps someone.
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