Back Under the Lights, More Blood

I called about Jack about 3am Arkansas time because I was awake and of course I worry. The nurse said his bilirubin was getting a little high and he looks a little jaundiced so he will be going under the photo therapy lights again. His blood counts are also a little low so he will be getting another blood transfusion. She said he was not showing any symptoms of that and all his vitals are stable.

She also gave him a bath and changed his linens. She was not able to weigh him because he will not tolerate being off the ventilator for very long.

She said he was resting comfortably and is having a good night.

He likes the oscillator, but not food

Jack is doing well on the oscillator. His O2 saturation and vitals have been great since he has been on it. They are not sure how long he will be on it but I hope he is on it long enough for his lungs to heal. They can't give me any real idea because each baby is different.

His last feed was a failure. A few hours after the feed they aspirated bile tinged residual. She didn't tell me how much but it was enough that they are stopping his feeds again. I asked her if this was normal and she said it was not normal but it was expected. In other words, this is common for babies as early as Jack. She said some take awhile to start feeding. She said his belly was soft and that is good. He will try again in a day or so. I don't know if he is losing weight because of all of this because they only weigh him on Mondays and Thursdays. They will let me know tomorrow what his current weight is.

It is not known why, but white male babies are known to do poorly in the NICU. I remember them telling me that when Julianna was in there. My cousin Kaitlyn told me they said that about her son too. "Wimpy white boy" syndrome. I told Tierney that and she said she is hoping Jack has some black in him to help him fight. I sure hope so too!

Up and Down

One step up, two steps back.


Jack is gaining in some areas and losing in others. He had an x-ray that showed that his lungs are swelling. That is a bad sign and because of that they took him off the regular ventilator and put him on an oscillator or high frequency ventilator. The oscillator gives him and extremely high amount of breaths per minute (over 600)  but it doesn't have the force that the regular ventilator has. They are worried that his lungs are starting to get damaged from the regular ventilator.

When I was speaking to the nurse I said he was breathing on his own at first, then was on the ventilator. A few days ago they told me he had the lowest settings possible for the ventilator, which was a great sign. Now he was doing so poorly on it that he had to be put on the oscillator. I told her it seems like he was going backwards. She said he is. She said this back and forth is very common in babies born at his gestational age. Many of them do this for a very long time.

On a brighter note, they gave Jack 1cc of Alimentum at 10 am today. They aspirated later and they did not get any back. So he tolerated 1 cc and that is awesome!!! They will keep trying it and hopefully he keeps making progress there.

Julianna, Grandma, Pop-Pop and I all went to breakfast with Santa today. She had a great time. I had planned a lot of things for us to do around Christmas this year because I knew it would be hard to do with the baby next year. I am going to try to still do as many of the things we can when I am in NY. Next week I will be in Arkansas to see Jack. I will be thrilled to see him.

Resting



Tierney went to visit Jack tonight and she sent me this picture. Jack is on his belly. The large hand on him is called a Zaky. It is weighted with beans like a bean bag. It is designed to provide comfort to preemie babies and it simulates a hand holding them.He had a hard day so I am glad he is cozy now.

 

Feed Are Not Going Well

They tried to feed Jack three times over the last 24 hours and each time it did not go well. They gave him 1.5cc of breast milk. A few hours later they aspirated about half of it back out. They tried again on an empty belly and they got about 2/3 back. Then they tried again and got 1.2cc back. They gave him pedialyte and stopped feeding him.

They are measuring his belly to make sure it is not swelling. They are going to xray it in the morning. They have him getting nothing through the stomach for at least 24 hours. They have increased his intravenous rate to try to make up for some of the difference.

The nurse was very encouraging. She said this does not mean he has NEC but they have to make sure. She said his GI system is not ready for feeds but it could just be that he isn't developed enough yet. She said this is very common in babies this age.

I was really hoping it would go well and of course this is a big blow. It is so hard to be here when he is so sick and needy way down there in Arkansas. I am going on 12/14. I wish I could be there now. I do know he is in good hands but the worrying is agonizing.

I was off from work today but I watched my Dad so Betty could get out. It is hard to watch him too because his deterioration is so profound.

On a lighter note, Julianna is a little love. She is super excited about Christmas and Santa and her happiness fills my heart with joy.

Thanks everyone for all the prayers. Please keep them coming.

No Bleed!!

Jack had his head ultrasound yesterday and he has no evidence of any brain bleed. They are going to repeat it on 12/31. I am so thrilled about this! Thanks for all the prayers!! They are working.

Tierney vistited Jack last night. She brought him more milk and she sent me some pictures. He is still on the ventilator. He was lying on his belly. He got the PICC line and it is in his leg.

He was weighed and his weight went down to 2 lbs 3 oz. He is going to start feeds today. The iv lipids and hyperalimentation he has been getting are only to try to maintain his weight. He will not gain weight from that. When they feed him they will put a few cc's of milk down his oral gastric (OG) tube. A few hours later they will aspirate from the tube to make sure it is digested. If it is they will continue with the feeds. If not, they will wait awhile. This is all the prevent necrotizing enterocolitis (NEC). NEC is a huge killer of preemies and staying away from this disease is Jack's next big hurdle to jump.

Question: What is Necrotizing Enterocolitis (NEC)?


Answer: Necrotizing enterocolitis, usually called NEC, is a condition where the intestines become infected and can begin to die. The disease usually affects premature babies, although term babies may also get NEC. Necrotizing enterocolitis is a serious condition that may require surgery, and has a high morbidity and mortality rate.

What Happens With Necrotizing Enterocolitis?

The inner lining of the intestines contains millions of bacteria. Usually, these bacteria (called the normal flora) are harmless and are part of the digestive process. In NEC, though, the bacteria begin to attack the intestinal wall. If the disease is not treated promptly, the intestinal wall will weaken and may die. Eventually, a hole can form through the bowel wall (a perforation), spilling its contents into the abdominal cavity. Bowel perforation is a medical emergency that requires immediate surgery and has a high mortality rate.


What Causes Necrotizing Enterocolitis?

Prematurity is the biggest risk factor, because preemies are born with immature intestines. Beyond that, doctors aren’t exactly sure what causes NEC. They know that the vast majority of infants who get NEC have begun milk feedings, but they also know that delaying feedings does not reduce the incidence of the disorder. Reduced blood flow to the intestines may also play a factor in the development of necrotizing enterocolitis, and babies who have heart conditions such as a patent ductus arteriosis (PDA) are at higher risk for developing NEC.

Symptoms of Necrotizing Enterocolitis

In the early stages of NEC, the infection causes the movement of food and air through the intestines to slow down or stop. This causes the baby’s belly to look bloated or distended. After feedings, food will be left in the baby’s stomach as gastric residuals. Eventually, enough food and air becomes trapped in the intestines that bowel loops will be visible on the baby’s belly. The belly will become painful and discolored, and the baby may begin vomiting bile or having bile-tinged residuals. Blood may be present in the baby’s stools, and the baby may begin to be bloated all over and have less urine output. The baby may also have a hard time regulating his temperature and may begin to have spells of apnea or bradycardia. Eventually, the bowel will rupture, causing widespread infection and respiratory distress.

Treating Necrotizing Enterocolitis

In the early stages, treatments for NEC include stopping milk feedings to let the bowel rest, giving antibiotics to treat infection, and removing air from the stomach. The baby will receive frequent x-rays to watch the disease’s progress.

If medical treatment is not working or if the bowel perforates, surgery is required. A surgeon will remove any dead sections of bowel and other infected material. The bowel will either be reattached or will be diverted to the abdomen through a stoma. Medical treatments will continue until the disease is resolved.


Outcomes of Necrotizing Enterocolitis

NEC is a serious disease, and about 25% of infants who recover from NEC will need treatment for long-term problems. Infants who are medically treated for NEC may have growth delays, trouble absorbing nutrients, and trouble with their livers and gall bladders. NEC also increases the risk of developmental delays.

Infants who have had surgery for NEC also show long-term effects from the disease. In addition to the effects of medical NEC, surgical patients may have severe absorption problems such as short bowel syndrome and have an increased risk of cerebral palsy and brain and eye problems.


Preventing Necrotizing Enterocolitis

Preventing premature birth is the best way to prevent necrotizing enterocolitis. If you are at risk for preterm birth, talk with your doctor about what you can do to lower your risk.

If preterm birth does occur, then feeding only breast milk can significantly lower the risk of NEC. Breast milk contains protective factors that encourage good intestinal development and can reduce the amount of harmful bacteria in the intestines. In one study, infants whose feedings contained at least 50% breast milk had a six-fold decrease in the incidence of NEC.


In addition to preventing preterm birth and feeding breast milk, giving steroids to the mother when premature birth is expected may reduce the risk of NEC. Also, supplementing breast milk and formula with different substances such as probiotics or immunoglobulins may help, although more research is needed.

Some Statistics About NEC


Over 90% of infants who develop necrotizing enterocolitis (NEC) are born preterm.

The incidence of NEC is between 5-10% of all very low birth weight infants (less than 1500 grams).

The mortality related to NEC in very low birth weight infants is between 20-30%

The mortality related to NEC in extremely preterm infants (less than 1000grams) is approximately 40-50%

Infants who weigh less than 1000 g at birth have the highest attack rates. This rate dramatically drops to 3.8 per 1000 live births for infants who weigh 1501-2500 g at birth.

Rates of NEC drop dramatically for infants born after 35-36 weeks' gestational weeks of age.

The average age of onset has been reported to be

20.2 days for babies born at less than 30 weeks' gestational age,

13.8 days for babies born at 31-33 weeks' gestational age, and

5.4 days for babies born after 34 weeks' gestation.



(Read more about Preemie Health Complications Statistics by preemiehelp.com)

Julianna had a small risk of NEC. She did not get it and did great with her feeds from the beginning. She was able to take her mik orally although they all said she would probablly not be able to do that. She proved them all wrong and took her 4cc's by bottle, digested it like a champ and demanded more a few hours later.

Jack has a much bigger risk but he has a greater chance of not getting it than he does of getting it. He will be at great risk for this until he is released from the NICU. The average age of onset of NEC for his gestational age is about 3 weeks.

So far Jack is doing great and I am thrilled with his progress.
Thanks for the encouragement, prayers and support!

PICC line today

I called about Jack and they said he is doing ok. He is going to have surgery to place the PICC line today.

Tomorrow he will have the head ultrasound to see if he had an intraventricular hemorrhage. They do not know what time it will be. His nurse said it depends on the schedule of the ultrasound technician. If he has it early they should know the results before the end of the day but if he has the test late they may not have the results until Thursday.

I am very worried about this test. If he has a bleed it is already there. If he has a serious bleed there is a strong likelihood he will never be normal. I know I will deal with whatever I have to, but I want him to be healthy. I want him to run and jump and climb and get into mischief just like his sister.

Most bleeds happen in the first four or five days of life. If he does not have a bleed it is unlikely he will get one.

When Julianna was born at 34 weeks they told me she had the possibility of all kinds of problems. She did have some delays and a lot of small preemie issues. However, she didn't have anything major. She is perfectly normal now. She is a bit small for her age but she doesn't seem to know that!

I hope for the same outcome for Jack.