After the last esophagram, June was scheduled for surgery to go in and repair the atresia in her small intestine. The surgeons also planned to put in a G tube (as a way to feed June since they were sure how she would be able to swallow).
The surgery lasted about three hours. When we met with the surgeon, we found out June had to have much more done than expected. Not only did June have a Ladd's procedure to remove bands of tissue that were blocking the passage from her stomach to intestine, she also had intestine malrotation, which occurs when the intestines don't position themselves normally during fetal development (usually around the end of the first trimester). Since the intestines don't position themselves correctly, they aren't attached inside properly. When fixing the rotation, June's appendix had to be removed to make room for her intestines. Vomiting is a common symptom of malrotation, which is why June could not keep her food down.
A G tube was also placed in June's stomach, which would eventually be used to feed her. Lastly, June had a Nissen fundoplication to stop Gastroesophageal Reflux Disease (GERD). This surgery strengthens the valve between the esophagus and stomach to stop acid from backing up into the esophagus and allow it to heal, which is done by sewing the upper curve of the stomach around the esophagus.During the next week, June's stomach got more swollen with bright red streaks around the surgery sites. The skin around her G tube looked like it was falling away. With X-rays, it was determined that there were pockets of air in her stomach cavity, meaning there was a leak either from around the G tube or from the recent repairs. An ultrasound of her stomach showed there was a pocket of puss in her stomach. The infection needed to be cleaned out and cultured to determine what antibiotics to give June.
The next weekend June was headed back to surgery. The infection was cleaned out of her stomach. There was a leak in both her stomach and intestines that were repaired. The old G tube was removed and the site was closed up. A new G tube was placed in June's stomach with a feeding tube that was threaded down into the intestine. With everything June had had done to her stomach, it needed time to heal, so the feeding tube would allow her to start to get nutrients but have them delivered past her surgery sites.
That night June's nurse noticed unusual eye and tongue/lip movement. She was connected to an EEG machine, which monitored her brain activity, and it was confirmed that June was having tonic seizures. Tonic seizures are rare, especially in an infant. During a tonic seizure, June becomes very stiff. She also quits breathing and turns a nasty shade of blue. These seizures were happening while June was sleeping and involved her entire brain.
June needed a spinal tap to check for meningitis or encephalitis. Thankfully, the results came back normal. An ultrasound of June's head was also ordered. It was found that June had ventriculomegaly, where the fluid filled structures in the brain are abnormally large. The neurosurgeon felt that currently June's lateral ventricles were not big enough for serious concern, but she will have to have follow-up ultrasounds to monitor their size. If they increase, she may need surgery in the future. June also had a MRI to see if she had a congenital abnormality, damage to the brain from loss of oxygen, suffered a stroke, etc... The initial read of the MRI by doctors showed that everything in June's brain was normal. We will find out more next week regarding those results when we meet with the neurosurgeon and neurologist.
Between the seizures and pain, June had lots of difficulty breathing this past week. The two times they tried pulling her off the ventilator, she failed and had to be reintubated. She had several episodes where she stopped breathing.
During the week, the culture came back on the infection pulled from June's stomach. She had to be put in isolation to prevent spread of the infection. Anyone that comes in her room has to wear a gown and gloves. We do not know how long she will be in isolation. Then the incision from June's last surgery split open because the infection needed to get out.
Yet again, June headed back into surgery this past weekend. Her G tube had broken, which wasn't allowing her stomach to heal. Her G tube was replaced with one that would better hold the stomach against the abdominal wall to prevent leaks. A wound vac was also created to cover her incision that had split open. This will allow the wound to close while sucking out the infection.
The silver lining during all this is that June started feeding. She gets one milliliter an hour through the feeding tube into her intestine (called priming), which is a little less than two tablespoons a day. Yet, she is getting milk!This was a difficult post to write because we never want to relive the last three weeks. We cycled through more emotions everyday than I thought possible: exhaustion, disappointment, dismay, relief, anger, frustration, excitement, apprehension - the list goes on.
I'll admit these past few weeks have challenged my faith. Why did all of this have to happen to a sweet baby girl who has just barely entered this world? I have to come to terms with understanding that there sometimes aren't explanations for why something happens the way it does, but that is easier said then done.
As June's parents, we are responsible for loving and caring for her. So many times we have felt so helpless. We continue to ask ourselves what have we done wrong? Is there something we are not doing to protect our little girl from all this hurt?We have a lot more to find out about June's health, but we are hopeful after this last surgery things will start to turn around for June. She is an amazingly strong little girl. For the last couple weeks she has been very sedated, but today we saw June again - there was life in her little eyes and she was giving her nurses those expressions she is becoming known for in NICU.
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