It has been kind of brought to my attention by a wonderful friend's questions that there may be some of you that read this that aren't real familiar with Elizabeth's past and there for aren't really sure why she is in this feeding program and what's the big deal. So I thought I would take htis time to enlighten everyone on her past. This may be kind of lengthy, but I will try to give u the cliff notes.
Elizabeth was born at 28 weeks gestation due to septic shock. I had a urinary tact infection that went septic on me (infection in the blood, can be deadly) and she was also septic. They took her via emergency c-section on November 1, 2004 at 9:31 a.m. She was 2 lbs 12 oz and 14.5 inches long. When born she had e.coli (the bacteria that caused the u.t.i) pneumonia, e.coli septicemia, and possible e.coli meningitis. She was immediately intubated (tube in mouth and down throat to lungs) and put on a ventilator(machine to force air into Elizabeth's lungs and out). She also had many many iv's in her as well. Being that early she was unable to suck or swallow, so she wasn't introduced to a bottle until she was roughly 25 to 30 days old. Until that point they fed her by placing a tube in through either her nose or mouth and then into her stomach and pushed breast milk into her stomach. And really it was about a 1/4 of tsp every 3 hours. So not much at all. At roughly 25 to 30 days old, the reflex to suck and swallow was finally there and she was able to start taking a bottle. She would take roughly 1 to 2 tsp every 3 hours. She came off the ventilator at 8 days old. When we brought her home at 43 days old, I believe she was up to taking 1 oz of formula every 3 hours. However, I noticed from the moment they started feeding her even through the tube that she was throwing up most of what she ate and normally it came out her nose. I questioned the doctors in the nicu numerous times about whether she had acid reflux, as it is VERY common with preemies. They kept reassuring me that no, she didn't have reflux that was just her way of spitting up and it was a laundry problem, not a medical problem.
Once at home she continued doing this and it scared me so much that I was afraid to put her on her back to sleep after eating. I was afraid she would throw up and choke on it. There fore I ended up sleeping on the couch with her on my chest, so if she threw up she wouldn't be on her back. When she was 3 months old she started having major breathing issues along with the "spitting up". At this point I finally had her ped believing me that she may have reflux, so he put her on zantac, which is horrible tasting. She didn't like it at all. On top of the horrible taste of the Zantac, the doctors thought she just had a virus that was causing the breathing issues, so they put her on oral steroids, which taste like pure alcohol. So now Elizabeth is having issues breathing and having to choose to breath or eat, so she is "inhaling" her bottle or breast and then throwing it all up and plus throwing up the meds that tasted bad to begin with. We went for 2 more months with the respiratory issues and steroids before it was figured out that Elizabeth had no airway due to scar tissue. The scarring was due to the intubation at birth to keep her alive and her reflux. Her airway was 2 cm big or roughly the size of a coffee stirrer ( this is your trahcea and should be about 3 to 4 cm big) . So she was growing but her airway was not. That is when we put the tracheostomy in her to allow her to breath. She was 5 months old.
So now we had the respiratory issues solved, but were still having issues with the throwing up. They had switched her reflux meds to prevacid, but even that wasn't helping. Elizabeth actually started to refuse to eat. The ped I had for her at the time didn't seem worried about this, but I wasn't liking it. So I went and got a second opinion and a new pediatrician. This ped, who is still her dr and I love, realized that Elizabeth couldn't break down the protein in her breast milk and that it was causing her to be constipated and backed up. So I took all the milk out of my diet and we continued to try to get her to eat better. We were also fighting with a gastrointerologist at the time who swore up and down that Elizabeth did not have reflux. Well it finally got so bad with her throwing up that she aspirated ( the vomit, went into her lungs) and she got pneumonia from it and had to be hospitalized. I actually suctioned milk out of her trach on numerous occasions. Plus she completely stopped eating. In fact she wouldn't allow anything in her mouth besides her own thumbs. She wouldn't let a pacifier in her mouth, my fingers, toys, NOTHING, but her own thumbs!!! While hospitalized they did a test to see how her stomach was emptying and we found that it only emptied at 5 %. It was decided that she needed to have surgery to open up the exit of her stomach into the intestine( pyloral plasti) and also she needed a surgery to stop her from refluxing and further damaging her throat and lungs( fundo-plication nissen, they wrap part of the stomach around the esophagus so food can go down, but nothing can come up, can't even burp), plus a feeding tube needed to be placed in her stomach to get food into her. She was 7 months old when they performed this surgery.
From that point on we started on vigorous feeding therapy. In the beginning we basically worked on getting Elizabeth to just allow a toy or pacifier in her mouth. She had what is called oral aversion and tonic bite. She would bite down and lock her jaw and you couldn't open it no matter how hard you tried to.
We have spent the last 4 years trying to get Elizabeth over the oral aversion. As a baby she realized what went in her mouth eventually came back up and made her feel like crap so she didn't want anything in there. It took a long time for her to even put toys in her mouth like a normal baby. Three years ago we were only able to get her to play with food. That in itself was a hurdle...she didn't even want food on her hands and she was 1.5 years old. Because of all the negative things that have happened to her and been done to her because of surgeries and refluxing and what not, she now needs to learn that it is ok to eat and safe. Right now she is afraid and only knows being fed through her feeding tube. She doesn't know hunger or thirst like you and I. She doesn't realize that eating is a pleasant thing. To her it has always been a negative and terrifying thing. It has taken us all this time to just get her to take baby food in her mouth and swallow it. She is afraid to swallow food....in fact she will tell me she can't swallow things and will spit it out. This is all learned behaviors on her part to protect herself when she was a baby.
This program we are doing now is to reteach her behaviors and that eating is fun and pleasant and a positive experience. I have been asked why it's so regulated and strict....this is so the child knows that they have certain times they are allowed and expected to eat and if they don't do it then, then they have to wait until the next session and can't have anything in between to tide them over. We aren't starving her, as she is still getting her formula through her tube during the night. They weigh the kids twice a week and keep very detailed journals on everything they eat by mouth and through the tube and all there output, as far as stooling, urinating, and throwing up. Elizabeth can't throw up still. She will eventually one day out grow the nissen and it will come undone on it's own and it is the hope that her reflux will have resolved itself by that point. Up until a few weeks ago she was still on Prevacid for the reflux, even though she had the surgery to stop it. She couldn't throw up, but she can still retch and dry heave and she was doing that, which meant her reflux was still active. However, for over a month now she hasn't done any of that. Although there is still a chance as we add new food to her diet it could flare up again and she will have to be put back on the prevacid.
She also has been labeled a risk for aspirating thin liquids like water that isn't thickened. She doesn't know how to swallow it properly and protect her airway at the same time. So until they can do a video swallow and watch her swallow barium and see where the fluid goes, all her drinks have to be thickened to decrease the chance of aspirating it. If you have ever taken a drink of water, pop, whatever, and then coughed right away cause it "went down the wrong tube" you have possibly aspirated it. Could you imagine how you would feel and whether you would even want to swallow anything ever again if that happened to you repeatedly. Well that is what happened to Elizabeth repeatedly. Also if you constantly threw up everything you ate, well you wouldn't want to eat either. They say babies don't remember things, well I have proof in front of me that they do, cause she obviously remembers all this or she would eat.
I hope this has helped anyone understand what Elizabeth is going through and has been through. And to be honest, this isn't even half of everything she has been through medically, this only the eating problems. Please don't ever hesitate to ask me questions about her if you don't understand. I would much rather answer questions then have someone assume something wrongly. I don't take offense at all to questions or inquiries.
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