The last time I've seen Isaiah was on Christmas morning. It's killing me not being able to see him. But I know it's for the best. If I absolutely need to see him, I will definitely have to wear a mask. This afternoon, Antwan and my mom went up to see him for a little bit. They came back to update me. From yesterday to today, big change but not a positive one. The suspect Isaiah had NEC (Necrotizing Enterocolitis). As soon as Antwan told me, I became emotional. Extremely emotional because I know what it was and what COULD happen to babies who have it. I held it together for a while, but knowing what I know about NEC, it's scaring me to death.
Antwan was explaining to me some things that the Dr. went over with him. Feedings were stopped because of it. Isaiah had been vomiting bile that has yet to be determined exactly what was contained in it. Could have been blood but was darker like possible backed up stool. His belly was larger and more distended. Bowels seemed to have lots of air in them. The Dr. had a tube put into his belly to suction out the contents and air. He's getting nutrition through a TPN. The INO (Nitric Oxide) was stopped earlier in the day so that is good. His setting went up from 4 to 5 on the c-pap machine. I think he also said something about if surgery was needed, Isaiah would need to be transported to Children's Mercy because the pediatric surgeon that would normally perform a surgery (if needed) is on vacation. With all of this going on, that was expected. There is a lot of other stuff going on, but right now, I just can't remember everything.
This has been on my mind all day. We went out to my father's tonight and on the way, I looked up more information about NEC. As I read, I just got more and more emotional and before we arrived, I started crying. I had to get myself together before going in. Thanks for being there and trying to make me feel better, babe. I don't know what I'd do without you. Once we went in, I was ok, but as soon as my step mom asked how Isaiah was doing, I felt like I couldn't breathe. She knew something was wrong and told me to go into her bedroom if I needed to. I went in to try to get myself together. My father eventually came in and I told him what was going on what I knew about NEC. He prayed with me, I got myself together then went out to hang with the rest of the family.
Although we still don't know that Isaiah has NEC, it doesn't make it any easier to think about it. Even harder is the fact I haven't seen my baby in 3 days and I feel like he's suffering but I can't do ANYTHING to help him. Every time I think about what is going on. I get tears in my eyes. When I got home, I had to move some of the milk out of my freezer into the deep freezer. My sister followed me out and asked what was wrong. I asked her if I looked like something was wrong and she said, "Yes, you can see it in your eyes and it's on your face. I couldn't even look at her because I started to get tears again. So I quickly changed the subject.
I ended up calling the hospital and talking to the nurse about what was going on and she explained everything. I still have things that kind of went right over my head. But she did tell me that if I really wanted to see Isaiah, I could come up just scrub really good and wear a mask. She said he was resting pretty good, better than the previous night. Tests and x-rays were ordered for the morning at 5am. The x-rays that did come back this evening looked good, but blood tests wouldn't be back for a couple days. She said that what Isaiah was experiencing was NEC "like" symptoms not necessarily the real thing. She said he's doing ok now, but we'll see what the tests show. He's also down from 4lbs 5 1/2 oz yesterday to 4lbs 4 1/2 oz today. That is also expected. I just want my little one to get better. He's 5 wks today or 36wks gestational age. I don't know how I'm going to continue going thru the motions. I know I have to for my family. I feel like I messed up because I didn't do a better job of taking care of myself. If I had, I wouldn't be sick, I'd be able to see my baby and my house would be in order. I don't like feeling like Antwan is taking on the majority of responsibilities at home when I should be doing more.
I feel like I am being tested beyond belief. But you know what? I'm going to keep on praying because I know God is in control and in the end, he will heal Isaiah. God knows the desires of our hearts so as long as I hold fast to my desires, he will hear. Is there way to over pray? If so, I have cashed that card and paid a hefty tip. Dear God.....please hear my prayer....ALL of our prayers. Thanks for hanging in there with me on this!
For those of you that don't know what NEC is, here is a description:
What Is Necrotizing Enterocolitis?
A gastrointestinal disease that mostly affects premature infants, NEC involves infection and inflammation that causes destruction of the bowel (intestine) or part of the bowel. Although it affects only one in 2,000 to 4,000 births, or between 1% and 5% of neonatal intensive care unit (NICU) admissions, NEC is the most common and serious gastrointestinal disorder among hospitalized preterm infants.
A gastrointestinal disease that mostly affects premature infants, NEC involves infection and inflammation that causes destruction of the bowel (intestine) or part of the bowel. Although it affects only one in 2,000 to 4,000 births, or between 1% and 5% of neonatal intensive care unit (NICU) admissions, NEC is the most common and serious gastrointestinal disorder among hospitalized preterm infants.
NEC typically occurs within the first 2 weeks of life, usually after milk feeding has begun (at first, feedings are usually given through a tube that goes directly to the baby's stomach). These premature infants have immature bowels, which are sensitive to changes in blood flow and prone to infection. They may have difficulty with blood and oxygen circulation and digestion, which increases their chances of developing NEC.
What Causes It?
It is thought that the intestinal tissues of premature infants are weakened by too little oxygen or blood flow, and when feedings are started, the added stress of food moving through the intestine allows bacteria that are normally found in the intestine to invade and damage the wall of the intestinal tissues. The damage may affect only a short segment of the intestine, or it may progress quickly to involve a much larger portion.
The infant is unable to continue feedings and starts to appear ill if bacteria continues to spread through the wall of the intestines and sometimes into the bloodstream. He may also develop imbalances in the minerals in the blood. In severe cases of NEC, a hole (perforation) may develop in the intestine, allowing bacteria to leak into the abdomen and causing life-threatening infection (peritonitis). Because the infant's body systems are immature, even with quick treatment for NEC there may be serious complications.
(Babies who are fed breast milk can also develop NEC, but their risk is lower than babies that are fed formula.) Another theory is that babies who have had difficult deliveries with lowered oxygen levels can develop NEC. When there is not enough oxygen, the body sends the available oxygen and blood to vital organs instead of the gastrointestinal tract, and NEC can result.
Signs and Symptoms
The symptoms of NEC may resemble other digestive conditions. Every infant experiences the symptoms of NEC differently, which may include:
poor tolerance to feedings
feedings stay in stomach longer than expected
decreased bowel sounds
abdominal distension (bloating) and tenderness
greenish (bile-colored) vomit
redness of the abdomen
increase in stools, or lack of stools
bloody stools
More subtle signs of NEC might include apnea (periodic stoppage of breathing), bradycardia (slowed heart rate), diarrhea, lethargy, and fluctuating body temperature. Advanced cases may show fluid in the peritoneal (abdominal) cavity, peritonitis (infection of the membrane lining the abdomen), or shock.
It is thought that the intestinal tissues of premature infants are weakened by too little oxygen or blood flow, and when feedings are started, the added stress of food moving through the intestine allows bacteria that are normally found in the intestine to invade and damage the wall of the intestinal tissues. The damage may affect only a short segment of the intestine, or it may progress quickly to involve a much larger portion.
The infant is unable to continue feedings and starts to appear ill if bacteria continues to spread through the wall of the intestines and sometimes into the bloodstream. He may also develop imbalances in the minerals in the blood. In severe cases of NEC, a hole (perforation) may develop in the intestine, allowing bacteria to leak into the abdomen and causing life-threatening infection (peritonitis). Because the infant's body systems are immature, even with quick treatment for NEC there may be serious complications.
(Babies who are fed breast milk can also develop NEC, but their risk is lower than babies that are fed formula.) Another theory is that babies who have had difficult deliveries with lowered oxygen levels can develop NEC. When there is not enough oxygen, the body sends the available oxygen and blood to vital organs instead of the gastrointestinal tract, and NEC can result.
Signs and Symptoms
The symptoms of NEC may resemble other digestive conditions. Every infant experiences the symptoms of NEC differently, which may include:
poor tolerance to feedings
feedings stay in stomach longer than expected
decreased bowel sounds
abdominal distension (bloating) and tenderness
greenish (bile-colored) vomit
redness of the abdomen
increase in stools, or lack of stools
bloody stools
More subtle signs of NEC might include apnea (periodic stoppage of breathing), bradycardia (slowed heart rate), diarrhea, lethargy, and fluctuating body temperature. Advanced cases may show fluid in the peritoneal (abdominal) cavity, peritonitis (infection of the membrane lining the abdomen), or shock.
Diagnosis and Treatment
The diagnosis of NEC is usually confirmed by the presence of an abnormal gas pattern as seen on an X-ray. This is indicated by a "bubbly" appearance of gas in the walls of the intestine, large veins of the liver, or the presence of air outside of the intestines in the abdominal cavity. A surgeon may insert a needle into the abdominal cavity to withdraw fluid to determine whether there is a hole in the intestines.
The majority of infants with NEC are treated medically, and symptoms resolve without the need for surgery. Treatment includes:
stopping feedings
nasogastric drainage (inserting a tube through the nasal passages down to the stomach to remove air and fluid from the stomach and intestine)
intravenous fluids for fluid replacement and nutrition
antibiotics for infection
frequent examinations and X-rays of the abdomen
The baby's belly size is measured and watched carefully, and periodic blood samples are taken to determine the presence of bacteria. Stools are also checked for blood. If the abdomen is so swollen that it interferes with breathing, extra oxygen or mechanically assisted breathing (a ventilator) is used to help the baby breathe.
If the infant responds favorably, he may be back on regular feedings within 72 hours, although in most cases feedings are withheld and antibiotics are continued for 7 to 10 days. If the bowel perforates (tears) or the condition worsens, surgery may be indicated. Severe cases of NEC may require removal of a segment of intestine. Sometimes after removal of diseased bowel, the healthy areas can be sewn back together. Other times, especially if the baby is very ill or there is spillage of stool in the abdomen, the surgeon will bring an area of the intestine or bowel to an opening on the abdomen (called an ostomy).
Most infants who develop NEC recover fully and do not have further feeding problems. In some cases, scarring and narrowing of the bowel may occur and can cause future intestinal obstruction or blockage. Another residual problem may be malabsorption (the inability of the bowel to absorb nutrients normally). This is more common in children who required surgery for NEC and had part of their intestine removed.
The diagnosis of NEC is usually confirmed by the presence of an abnormal gas pattern as seen on an X-ray. This is indicated by a "bubbly" appearance of gas in the walls of the intestine, large veins of the liver, or the presence of air outside of the intestines in the abdominal cavity. A surgeon may insert a needle into the abdominal cavity to withdraw fluid to determine whether there is a hole in the intestines.
The majority of infants with NEC are treated medically, and symptoms resolve without the need for surgery. Treatment includes:
stopping feedings
nasogastric drainage (inserting a tube through the nasal passages down to the stomach to remove air and fluid from the stomach and intestine)
intravenous fluids for fluid replacement and nutrition
antibiotics for infection
frequent examinations and X-rays of the abdomen
The baby's belly size is measured and watched carefully, and periodic blood samples are taken to determine the presence of bacteria. Stools are also checked for blood. If the abdomen is so swollen that it interferes with breathing, extra oxygen or mechanically assisted breathing (a ventilator) is used to help the baby breathe.
If the infant responds favorably, he may be back on regular feedings within 72 hours, although in most cases feedings are withheld and antibiotics are continued for 7 to 10 days. If the bowel perforates (tears) or the condition worsens, surgery may be indicated. Severe cases of NEC may require removal of a segment of intestine. Sometimes after removal of diseased bowel, the healthy areas can be sewn back together. Other times, especially if the baby is very ill or there is spillage of stool in the abdomen, the surgeon will bring an area of the intestine or bowel to an opening on the abdomen (called an ostomy).
Most infants who develop NEC recover fully and do not have further feeding problems. In some cases, scarring and narrowing of the bowel may occur and can cause future intestinal obstruction or blockage. Another residual problem may be malabsorption (the inability of the bowel to absorb nutrients normally). This is more common in children who required surgery for NEC and had part of their intestine removed.
1 comment:
I'm so sorry you are going through this. You are in my prayers. God Bless you!
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