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.

Pictures

                           Tierney, who carried baby Jack, with me and Jack in the NICU.

 

Stephanie Scott, one of the directors of Simple Surrogacy (the agency I used) with me and Jack in the NICU. Stephanie flew in from Idaho to be there for me, Tierney and Jack. Simple Surrogacy has been amazing. I highly recommend them.

Echo Cardiogram Results

The NICU called me with the echo cardiogram results. Jack does have a PDA. However, it is small and they think it should close on its own. They will keep watching it so he will have more echo cardiograms in his future. I am happy that it is not a bigger one that will be a real problem for him.

They called me for consent for a PIC line. That is a surgically implanted intravenous line. He will need that because they are going to have to take his umbilical lines out soon.

The nurse said he is doing great. I can't wait to go see him.

Jack is hanging on

I called the NICU and they said Jack was doing ok today. He had a blood transfusion, his second so far. They didn't tell me how much this was was but the last one was 8cc. That is less than 2 teaspoons. He is getting blood to replace the blood they are drawing. He also received sodium bicarbonate (IV) today due to being slightly acidotic. He is still on the ventilator.

On Saturday they advised me that he had a heart murmur and they suspected he may have a PDA. That is a patent ductus arteriousis. That means that the hole for his fetal heart circulation likely did not close. That means he has a hole in his heart. They gave him medication to try to close it and he had an echo cardiogram today. We will not get the results of the echo cardiogram until tomorrow. I am hoping the medication worked and that it is fixed. Tierney came to the hospital to be with Jack during his echo cardiogram. She also brought more breast milk since she has been pumping for him.

Jack has not yet eaten. He will not be able to eat anything until they remove the umbilical catheters. He has one in this vein and one in his artery. After that they will put 4cc of breast  milk down his oral gastric (OG) tube. Then they will wait 4 hours and aspirate the tube to make sure he digested it. If he did he can continue with small feedings. If not, they will stop. Feeding a preemie that is not ready to feed is a huge big deal. They can get necrotizing enteric colitis (NEC). This is a huge killer of preemies and they have to be super careful with him. Even with the utmost care some babies get NEC and most do not survive it.

On Wednesday Jack is having an ultrasound of his head to make sure he does not have any bleeding into his brain. Intraventricular hemorrhages are very common in small preemies. They are graded from 1 to 4 with 4 being the most serious. They are most common in the first 4 or 5 days of life which is why they scan them when they turn a week old. The doctor said some babies with severe brain bleeds do very well because their brain is pretty plastic. In other words, their brains are still capable of making alternate pathways at this point. However, some babies do not do well with even small bleeds and develop cerebral palsey or other difficulties. The doctor said it is very rare for it to effect their intellect, it is usually physical.

It is all very scary. It is a bummer not to be there with him. I have scheduled a trip back for 12/14. Please pray for him.

 Jack's bear next to his monitor. The bottle next to it is 1/2 liter.

 Jack with his teddy bear. It is much bigger than him!

 I am holding Jack's hand when I had to say goodbye.

The priest baptizing Jack. He will have a real baptism when he gets home.