The Bennetts: Our Little Princess

June 9

Hannah had an extremely rough night last night. She couldn't sleep, she screamed for hours, and she threw up everything she ate. We were up with her for hours, working with her nurse frantically trying to bring her heart rate down. Around 3 am she finally wore herself out enough to fall asleep, but her heart was still racing. After a lot of discussion we figured out she was going through withdraw from her pain medication which she had been off of for almost 40 hours. They were able to give her a small dose around 4am. She has been calm ever since. It is not unusual for someone who has been on intense narcotic pain medication to go through withdrawals. What a rough and scary night. It looks like they will just have to wean the meds more slowly to avoid this again.

June 10

This morning Hannah decided to pull out her NG tube…again. I didn’t mind too much because I was able to take some pictures of her cute face without all the tape and the tube up her nose. I did feel bad though when they had to put it back in, she always throws a fit at the nurses. It takes 2-3 nurses to put this tube back in Hannah because she is so strong. They usually have 2 nurses holding her down so the 3^rd nurse putting the tube in. Each time they do this (they have to replace her NG often because Hannah pulls them out) they comment on how strong and wiggly Hannah is. We love the fight in our girl.

Today started out very positive and upbeat. The rest of the day was a bit of an emotional roller coaster though. This morning the doctors were all gung ho about getting us ready to go home at the end of this week. Yay! We were making steps forward and making arrangements to do the parent care, the two day training (no nurses) we need before we go home, as well as the infant CPR course. However, throughout the day I noticed a reddish tint to Hannah’s stool which progresses and became more obvious that it was blood in her stool.

Around 2 o’clock the doctors and nurses started to get worried because of the bloody stool. They sent us downstairs to radiology to get a belly x-ray. They had told us that they just wanted to play it safe and ensure nothing was bleeding or out of the ordinary.

The pediatrician came and gave us the results fairly quickly. She told us she saw no signs of “the big bad” thing they were looking for. She said “I hope for a nice quite night for Hannah tonight” and ensured us they would keep an eye on her.

She came back in, not even 10 minutes later, saying “I lied to you. This is the one time I did not give my radiology disclaimer and I actually needed it.” We understood what she meant. From her initial assessment she had not noticed anything; however she had not received feedback from radiology. Radiology looked at the x-ray and they noticed something the pediatrician had missed…it was “the big bad” thing.

That is why radiologist get paid to do what they do. The radiologist did see two affected areas in her intestines. The pediatrician apologized and ended by saying, “So much for a quite night for you guys.” Ethan and I looked at each other and said, “so much for us going home this week”.

Hannah now has something called Necrotizing enterocolitis (NEC). “A gastrointestinal disease that mostly affects premature infants, NEC involves infection and inflammation that causes destruction of the bowel or part of the bowel. Although it affects only 1 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. The exact cause of NEC is unknown, but one theory is that the intestinal tissues of premature infants are weakened by too little oxygen or blood flow. So when feedings are started, the added stress of food moving through the intestine allows bacteria normally found in the intestine to invade and damage the wall of the intestinal tissues.” Although Hannah was not premature she is at a higher risk of this disease because she has HLHS and doesn’t have the best blood flow.

This is a VERY serious condition and if it progresses her bowels could die and/or rupture and they would then have to go in and intervene surgically. If they were to rupture that would mean that everything that is in her bowels would then get into her bloodstream. A scary statistic: “Necrotizing enterocolitis is a serious disease with a death rate approaching 25%.” This percentage is drastically decreased with early, aggressive treatment.

It appears that we have caught it really early. Usually babies have a bloated, hard belly by the time they diagnose this condition. Hannah’s belly is still soft, and according to the x-ray only has two small areas affected. So, hopefully we can stop this before it gets any worse.

So, what are they doing for her? They will stop feedings to let the bowels rest, nasogastric drainage (inserting a tube through the nasal passages down to the stomach to remove air and fluid from the stomach and intestine), IV fluids, antibiotics for infection, and frequent examinations and X-rays of the abdomen. This treatment will continue for at least 7 days, longer if the condition worsens.

For the nasogastric drainage, it is a lot like the NG tubes they use to feed, but it is bigger and they can’t use it to feed. This type of tube has several holes in the bottom, instead of just the one like a NG. This allows suction from multiple places in her stomach so they can more successfully get out what is in her stomach. This new tube will stay in until she can start eating again. By having this intermittent suction in her belly it makes sure nothing enters the bowels, not even natural stomach juices. This will ensure the complete bowel rest that is needed. I felt so bad that we had replaced her NG tube earlier today because they had to remove it so they could put the bigger tube in to suction out her belly. Miss sass was not very happy with us.

We asked what caused this. As mentioned earlier, Hannah’s heart condition reduces the effectiveness of the blood flow throughout her body. Everyone’s intestines need an adequate supply of blood and oxygen to support proper and efficient digestion. Hannah starting getting fortified breast milk (breast milk with formula mixed in) which I believe was also a contributing factor. We’ll have to be careful as to how we fortify her breast milk moving forward.

The reason we fortified my breast milk was to give Hannah a chance to take, by mouth, the needed calories for the day. So we decreased the volume we gave her and increased the calories by fortifying it. If she could handle the lower volume, we could then take out the NG tube and give her everything by mouth.

June 11

They did a second belly x-ray this morning, which is quite the ordeal now that she is back on IVs. The x-ray looked similar to yesterday, maybe with a little improvement. The doctors are hopeful that we have stopped it from getting worse.

A week or so ago we were bragging about Hannah getting all of her IV lines out and now because of NEC we have to put some back in. She had to get an IV put in her arm last night so they could start her on IV fluids and her antibiotics. The doctors now want to give Hannah a PICC line so they can give her the nutrition she will need for the coming week as she won’t be able to eat anything for a week. This will also allow them to run multiple antibiotics (she is currently on 3) at once and give them the central access they will need to treat this. This afternoon they were able to fit Hannah in to place her PICC line. Once again she went down to intervention radiology to have her PICC placed, to see the “wizard” as he was called today. It is so much more comforting sending Hannah into a procedure when the entire hospital makes comments like “he is the best in the country” and “he is a wizard with tiny veins”.

Hannah, being the champ that she is, hasn’t really shown any signs of change. She is a little fussier than normal because she is hungry, but not nearly as bad as I thought she was going to be. She sleeps most of the day and shows no signs of discomfort or pain. The only time she really throws a fit is when the nurses unswaddle her to check her vitals or whenever we take her out of her mamaroo (the best invention ever). It is a mix between a swing and a bouncer; we often refer to it at her spaceship. She loves the motion and loves to sleep in it, I keep trying to put her in her bed to sleep but she yells at me until I put her back. All the nurses ask if we have one at home and when I say “no” they chuckle and say “well it looks like you will be buying one”.

Hannah in her mamaroo. The cast on her arm is called a "no no", it is just a Velcro cast to keep her from bending her arm (where they placed the PICC line)

June 12

Hannah had another belly x-ray this morning in the hopes that things would look better. IT DID! Her x-ray showed NO signs of infection, YAY! The doctors still want to continue her treatment until the 17^th to make absolutely sure they have gotten rid of this disease.

The rest of the day is pretty uneventful. We can’t really do anything to progress, it is a waiting game at this point until she is finished with her antibiotics.

June 13

Hannah is one month old today! I can’t even believe we have been here for an entire month. It feels like we have been away from home for months, but it doesn’t feel like we have had Hannah for a whole month.

Unfortunately, Hannah can't get all dressed up and cute for her one month birthday. It is too difficult with all of her lines, at least she can still wear her zebra swaddle.

Jack update

Jack has gone home with nana to Alabama for the family reunion. He is having a blast with all the attention he is getting and keeping everyone busy. Here are some pictures of my little man.