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Tuesday, June 22, 2010

Zoey's NICU Stay PART 1

(Our NICU stay was at the University of Tenneessee Medical Center.  We had a lot of great people who helped us.  They were wonderful.  Click for more information.)


As I mentioned, I got to feed Zoey her very first bottle. It was formula. I had debated back and forth between breastfeeding and formula. I had decided that if she really needed my milk, I would breastfeed. But when she came out as such a big preemie, I just figured that it wouldn't be needed probably. Lesson learned!

I could beat myself up for what happened to Zoey and I did at first but the doctor's reassured me that it wasn't my fault. My milk supply hadn't even came in yet so therefore I couldn't have fed her my milk during the first few feedings. You see, Zoey developed what is referred to as NEC. NEC stands for Necrotizing enterocolitis.

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. NEC is a serious condition that may require surgery, and has a high morbidity and mortality rate. -- from About.com

Why she developed the disease is unknown. They were amazed that she had it because she was such a big preemie and was so healthy looking. Actually that's the reason it almost went unnoticed.

The morning after Zoey was born, I went into the NICU (right down from my room) to feed my baby girl. I was so excited and amazed that I was the mother of this intricate, little being and couldn't wait to get ahold of her. My mom had spent the night with me while my hubby had taken his family to find a hotel really late the night before. Mom and I went back to see Zoey. I got to feed her again and just look at her. She was perfect. Even her little feet that were turned in because of my small uterus... they were even perfect. The doctor told us that they would straighten right out and that it was just a positional thing. Her little fingers and toes...her little ears...perfect, little lips....big, blue eyes... everything was just perfect.

I noticed that she had been spitting up some. It did look dark but I had never had a baby before and it had been years for my mom so we didn't think anything of it. The nurse told us that Zoey had had her first bowel movement. She said it was not very much but she didn't seem concerned. We spent some time with Zoey and then went back to my room.

(Notice the spit-up on her bib.)

My husband along with my mother and sister-in-law came over. They brought me some Japanese. I remember I was so hungry that day. It was crazy! They stayed around and talked with us some and then went and visited with Zoey. Well... my sister-in-law tried anyway... she got kicked out. There was a strict parents and grandparents only policy because of the early start of the flu season thanks to H1N1. After they had visited awhile, they packed up to head home 5.5 hours away.

After they had left, it was just my mom, hubby and I ... my dad, brother, aunt and uncle had went home the night before. We sat around, watched TV, ate, talked, saw Zoey various times, etc. We had such a good time...it was sort of like the night I had been rushed to the ER for the massive bleed....except more calm. My mom and husband always crack each other up so they are fun to listen to.

They had ended up placing a feeding tube in Zoey's stomach to help her eat. She was premature and was having a hard time wanting to eat so they felt this would help her the first few days.

Later that night, we met our nighttime NICU nurse Crystal. She told us that she was worried about Zoey because she had changed her diaper and she had pooped a lot. The problem was that it was very, very foul smelling in a way different than just a stinky diaper. She said that it also had blood in it. That was enough to scare us too death. I told her that the nurse earlier didn't say any of that and didn't seem concerned but I could tell she was. She got Dr. Bass, one of the neonatolgist to come over and check her out. He didn't seem concerned. He said that she probably just swallowed some blood during delivery. He asked if I had abrupted... funny... we wanted to know that, too! He said we'd watch her closely until morning. After he left, Crystal looked kind of shocked that he wasn't that concerned.

The next morning, we went into the NICU to hear from the daytime nurse that they had ordered X-rays for Zoey's bowels. Crystal had told the morning nurse that she just felt like something wasn't right with Zoey (THANK GOD SHE WENT ON HER INSTINCTS!) The morning nurse reported it to the next doctor, Dr. Burnett and she had ordered the X-rays. We still didn't know what they were looking for but we knew that it could be serious. The X-rays were done pretty quickly right at Zoey's bedside but it took forever to get the test results back. I know we probably aggravated Dr. Burnett but we were so worried. We kept waiting on her to come out and when she didn't we requested that the nurse ask her to come see us.

(Meanwhile, Zoey was also being treated with phototherapy for Jaundice (hyperbilirubinemia).  This continued from November 30 until December 4.  It was noted that Zoey's blood type is A+.  Her bilirubin level was 11.1 mg/dl on Dec. 1 and was 3.4/0.4 mg/dl on the 14th of December.)

Finally, she did and it wasn't good. She said Zoey's X-rays had shown air bubbles in her bowels and pneumatosis intestinalis involving the left mid abdominal loops of bowel. That was a sign of NEC. She explained that NEC was extremely serious and that a lot of babies die from it.  Her X-rays continued to confirm that she had Stage II Necrotizing Enterocolitis.  '''She was very stern with the news and I was kind of irritated that she wasn't very comforting. I think she wanted us to know how serious it was. She said they would take Zoey off her feedings, which were now going through a feeding tube because she was having a hard time taking it all, and let her bowels rest for 7-10 days plus they would start IV fluids to help nourish her and antibiotics in case of bacteria. The feeding tube was taken out as well.

Zoey had already had an IV in her hand from some meds they had given her prior to this. They decided that since she was going to have to be treated for so long, a PICC line would be better because it would last longer without infection than a regular IV. They decided to do that later that day.


We had decided before all the news that we would go home and get packed for the NICU stay. We were told we'd be there for a week or two at first but after this news we were unsure of when we'd ever get to take Zoey home. It broke our hearts to leave. I was an emotional wreck. I cried so hard in my room as my nurses came to release me. I cried even harder as we went down the elevator and down the long hall to our car. I even stopped and was snubbing like a small child. It killed me to leave my heart upstairs. And even though I knew she was really sick...I still didn't realize just how quickly it could get worse or I would have never left her. We got in the car and headed toward the Ronald McDonald house to get our room that our nurse had set up for us. I was just going through the motions. I called about Zoey and found out that they were working on her PICC line. It broke my heart to think about it. It seemed as though it took forever to get signed in and I couldn't stop staring into space wondering about my baby girl. Finally, after a tour and getting our things put in our room, we headed toward home. I was in and out the entire way home from being so tired.

When we got off the interstate, I called back to check on Zoey. The nurse said they had just finished with the PIC line and that it had been rough. It had taken 3 hours! I knew that meant that she had fought them screaming and crying. I wished that I could have held her hand but that wasn't allowed. I couldn't have stayed with her. It killed me. We were hungry, but I didn't feel like eating. I didn't say much ... just that I wanted to hurry. We stopped at Mr. Gatti's (my husband's favorite) and ate quickly. I couldn't eat any of the cinnamon sticks because I could remember how much Zoey loved them when I was pregnant. She would dance around like crazy! I cried when I saw my husband with one.

We came straight on home. My mom took my car to her house and told me she'd be back shortly. She and I both rushed around to get things done. I packed and showered. Then I read about NEC. WOW! Talk about scary. I was so scared. I just wanted to get back to my baby.

I remember leaking breast milk after my shower. It made me sort of wish that I had decided to give it to her. It was strange how that feeling came over me after my milk finally came in that night. My mom came and picked me up in my car and drove us straight back to UT. It was late when we got there, like 11:30pm maybe. We went straight up to see Zoey. There she lay in her isolette with a PIC line in her arm. I just looked at her and cried. They had started antibiotics (Ampicillin, Gentamicin, and Clindamycin from December 1-6) and there were even more cords and things connected to a few syringes that were slowly being pushed to let her meds and nutrition enter her body. One syringe was huge!  (Zoey was given Intralipids from December 1st until December 16.)

We sat there for a few hours and just talked to the nurse. She told us that they were keeping a close eye on her. Every so often they would listen to her bowel sounds to make sure they sounded normal. Every 12 hours they did another X-ray of her bowels to see if there was any change. They continued to find air bubbles in her bowels. This wasn't good.

The next morning (Tuesday Dec. 1) when the neonatologist made their rounds, we talked to Dr. Wright about Zoey's condition. They told us that her bowels could perforate and the air could bloat her abdomen thus the reason they were checking for a swollen abdomen and listening to bowel sounds. He told us we would just continue the antibiotics and the X-rays. They also put a drain tube in Zoey's belly that came out of her mouth a day or two later to help drain out anything in her belly so that her bowels wouldn't have to work to process that as well. He also said that the best thing for Zoey would be for her to have breast milk. He said that her bowels would tolerate it more than anything else. That made my decision. I was going to feed my baby girl my milk even though I hadn't a clue where to start.

I asked to see the lactation consultant (I had already told her I wouldn't be breastfeeding) that morning. She came straight over with a Medela Symphony hospital grade breast pump and supplies. She taught me how to pump to get Zoey's milk. The idea was that I would pump and store until she could start eating again. And boy did I ever! I had a huge freezer full in the NICU. I didn't know how I was going to get it home. But this was the best decision I made because this milk carried us through the first few months of Zoey's life. I have NEVER made more than 3 ounces and yet my baby girl has been feed breast milk (later she was supplemented) until she was 5.5 months old! Praise God!

This continued all during the week and the X-rays looked better and better. The X-rays were then only happening every 24 hours. Eventually the air bubbles were gone and they stopped the X-rays.

During all the turmoil, we were given more alarming news.  My Zoey girl's brain was missing what is known as a septum pellucidum.  The cranial ultrasound on December 2 showed this.  I stressed and worried myself too death over this as well.  A few days later, Dr. Anna Kosentka (Pediatric Neurologist) consulted with us.  An MRI of the brain was done on December 18 and was motion-limited because Zoey is a baby and babies tend to move around.  The septum pellucidum was not definitively visualized.  They couldn't tell if it was related to a true absence of the septum pellucidum or perhaps a cavum septum pellucidum with poorly defined lateral margins due to the poor image quality.  The optic nerves were symmetric which was a good thing and the optic chiasm was present.  This whole thing means that Zoey could have problems with her vision and her pitutary gland.  The MRI's findings helped to rule out the possible septo-optic dysplasia which involves the problems mentioned above.  Praise God for that.  Dr. Gary Gitschlag (Pediatric Ophthalmologist) also checked Zoey's eyes and they looked fine. 

It was also mentioned at first that Zoey was missing or had a thin Corpus Callosum which also deals with the brain and how it makes connections from the left and right sides.  This can cause a host of problems and I spent a lot of hours worrying over those problems.  However, the MRI report didn't make mention of this issue and Dr. Wright explained that if it didn't mention it, it was fine.  Praise God!  Since all these brain issues were found/or thought to exist, we consulted with Dr. Carmen Lozzio (Genetics and Development) for a genetic test.  Chromosome analysis showed a normal female karyotype (46, XX).  This was great.  None of these issues were genetic.  Dr. Wright even said that yes missing your septum pellucidum was a 1% rarity but he also mentioned that plenty of folks could be walking around without theirs and they would never know it unless they were a NICU baby who had a brain ultrasound or had had an MRI on their brain at some point in their lives. 

On December 4, they even told us that she would be able to start eating again possible in the next day or two. The seven days without feeding would have ended on Saturday December 6th.  When Dr. Bass spoke with us he said that they were deciding whether or not to leave her off feedings for 7 or 10 days. He said they'd conference together (all the Neonatologists) and make a decision. He mentioned that Dr. Wright had wanted to wait 10. Later, when Dr. Wright was on duty, I asked to speak to him. He, being the wonderful doctor that he is, came straight over and I asked about the 7 or 10 day dilemma. He told us he wanted to be really cautious and leave her off feeds for 10 days instead of the suggested 7 days by the other doctors. I told him that I'd rather be cautious, too and that I'd rather wait the 10 days just in case. I am such a worry wart and he was right up my alley! If she started eating and the problems came back we'd be facing another 10 days without feedings or worse... the problem worsening and I figured it'd be better to just stay off 3 more days and not have those worries.

An email to a precious friend, Thomasa Risner, during this situation:  Dec. 4

Zoey is doing much better, thank Jesus! Her tests have continued to improve and she may even get to start eating again this weekend! She is ready for a bottle again because she's eating her hands and attacking her paci. Continue to Pray that this disease hasn't caused scarring in her bowels which could mean surgery in the next few months.




TO BE CONTINUED......................


1 Remarks:

sara

Look at all you have been through! She has already overcome so much and is just truly a sign of God's miracles! I am so happy to see where you have come from and what a great spot you are in now :-)