After a grueling 44 hour labor, Katie Lynn finally decided to grace us with her presence at 3:20am on Monday, November 5, 2007. Being that Monica was a day shy of 36 weeks, we knew a NICU team would be present for the delivery. But we had no idea what the good Lord had in store for our precious little girl.
After she was born, the Neonatal Intensive Care Unit team examined her to ensure she was able to "function" on her own. As it was explained to us, an NICU team examines all pre-term babies. They determined that Katie Lynn should be on oxygen for a little while as she builds up her strength. The University Medical Center Family Care Center has an unwritten rule that any newborn placed on oxygen for six hours be transferred to NICU.
Once in NICU, Katie Lynn actually was breathing great. In fact, throughout her stay at UMC's NICU, she was never on oxygen. Monday night though is when Katie Lynn's hellacious week began. While Monica and I were down in NICU, she began vomiting a green substance. As a precaution, NICU staff decided to put a tube down her nose in an effort to vacuum out this green substance from her stomach.
On Tuesday, Katie Lynn still hadn't produced a bowel movement, so the NICU staff decided to give her a rectal barium enema to flush out her lower gastrointestinal tract. The enema proved to be successful in that it led to the discovery of multiple meconium plugs that were flushed out due to the process. The doctor remained hopeful that this would trigger bowel movements.
Unfortunately, Wednesday came and still no stool. It was decided to do another rectal barium enema to see if there were any more meconium plugs that the first enema missed. Monica was released from the hospital on Wednesday and the sadness set in that our precious daughter was not coming home with us.
Thursday arrived and brought yet another challenge. Katie Lynn still had not given us a bowel movement, and in addition, now was developing jaundice. As bilirubin is excreted through stool, it made sense unfortunately that this could happen. She was placed in a phototherapy isolette to help curb her jaundice.
Friday comes and brings with it a slew of mixed emotions and news. Katie Lynn's bilirubin level went down, so that meant the phototherapy was working. However, she still hadn't given us the pleasure of that first real poopy diaper. The doctors decided to perform an upper GI this time to see if there was a blockage higher up in her GI system. The doctors were fairly sure the two barium enemas had cleared her lower GI. Additionally, the doctors ordered biopsies be performed on her large intestine in order to determine whether or not the nerves were fully formed.
The doctor pushed pathology to get the test results from the upper GI. Luckily, pathology was able to complete the tests quickly. The doctor's suspicions were confirmed: there was a blockage higher up somewhere in or around Katie Lynn's small intestine. UMC is currently "in between" pediatric surgeons, so the doctor had Katie Lynn transferred to the other hospital in town, Covenant Medical Center, that afternoon.
So at four days old, Katie Lynn already experienced her first (and hopefully last) ambulance ride.
Once at Covenant, we met with the pediatric surgeon who decided it was best to wait for the upper GI test results. Those would be in Saturday by noon.
Saturday brought what we had been craving for five days - progress and answers. Test results from the biopsies showed nerves formed correctly. The pediatric surgeon scheduled exploratory surgery for noon Saturday, November 10, 2007 to locate the problem and hopefully correct it.
Katie Lynn was put on the ventilator around noon and finally rolled into surgery around 1:45 PM. After an hour and a half, the surgeon comes to talk to us in the NICU waiting room. The surgery was a success! He found an 1"-1.5" section of her small intestine (called an atresia) that was preventing the flow of excrement through her digestive system. The surgeon removed the section and connected the two ends to create the pathway. We were able to see Katie Lynn about 30 minutes after surgery.
Some biopsies were sent off to Phoenix for testing which lead to Katie Lynn being diagnosed with Intestinal Neuronal Dysplasia. IND essentially means her nerves are present in the bowel but some or all do not work and therefore she does not have bowel movements.
Katie Lynn had surgery again on Tuesday, November 20, 2007 as a result of this diagnosis.
The surgeon reversed the anastomosis he performed previously. He took the end of the 'working' portion of her small intestine and performed a jejunostomy (similar to a colostomy). He then took the beginning of the 'nonworking' portion and performed another jejunostomy (essentially a stoma). Additionally, the surgeon said he did see some, albeit a small "some", peristalsis (movement/contractions) in the 'nonworking' portion. The surgeon also said that he did see some "green substance" in the lower 'nonworking' portion; this is the same substance that is currently coming out through the tube in her mouth. These two observations give us the hope that her system just needs time to begin working.
The first jejunostomy empties into an external bag. Once Katie Lynn begins receiving food orally, her system will absorb all the nutrients it can; the rest will empty into the bag.
The second jejunostomy will be for eventual secondary tube feeding with the intent to help stimulate the 'nonworking' portion to begin working.
Once the doctors see gas in the bag, the tube down her mouth will be put on gravity (as opposed to suction). Roughly 24 hours after that, the tube should be removed and real feeding can finally begin for the first time in Katie Lynn's life. Once the doctors are pleased with how she is taking to the feeding, she will be able to come home.
At some point, we will begin feeding through the second jejunostomy to hopefully, as mentioned above, stimulate the 'nonworking' portion to fix itself. If this process is a success, we will begin to see stool in her diapers. If and when we see that, they will run more tests to ensure the portion is indeed working. And if/when that happens, the surgeon will be able to remove the two jejunostomies and connect the two ends once again.
This process will be a long one in that it could take four maybe five years; there is no set timeframe for this to take as long as there is progress.
If her lower portion never begins functioning, we are looking at a transplant as our last recourse.
After a about a week and a half of weight gain monitoring, the day that Monica and I have been waiting four weeks for finally arrived; Katie Lynn was released from the hospital on December 3, 2007.
Monica and I are getting ready to attend an annual Christmas party thrown by the owners of my former employer on Friday, December 14.. I am drying off from a shower, and Monica is dressing Katie Lynn. She asks me to come look at Katie Lynn; her intestine had partially come out into her ostomy bag. We were obviously concerned, so we called Katie Lynn's surgeon's office knowing we'd be forwarded to an answering service. The service informed us that her surgeon was not on-call that weekend, but would have the other surgeon (who we'd met, knew, and were comfortable with) give us a call. Dr. Goldthorn told us it was normal, that we shouldn't worry, but if it came out more and we were concerned to give her a call and she'd take a look.
We went to the party and had a great time. We got home and took a look at Katie Lynn. Sure enough - her intestine had come out some more. We called Dr. Goldthorn who told us to come up to the hospital to let her take a look. Once there, the doctor looked at her and said it wasn't that bad. Yeah, sure - to her.. but to us is another story! She pushes it back in but says that it will just come back out again as she moves and fusses. She proceeds to ask what her stools are like. We tell her they're fairly regular (about 50% of her diapers contain some stool).
Then she drops the bomb on us.. she and Dr. McGill (Katie Lynn's surgeon) believe the earlier diagnosis of Intestinal Neuronal Dysplasia was a mis-diagnosis.
Dr. Goldthorn referenced other patients of hers that were 3, 4, and 5 years old who had never stooled. She told us that the biopsy tests results (that lead to the IND diagnosis) only come back as "not working" or "working" - not "immature/underdeveloped", "not working", or "working". Based on this, she feels a reconnect is in order but would consult with Dr. McGill since it would be his call.
We have an appointment scheduled with Dr. McGill on that following Monday so that he could take a look at Katie Lynn and decide on a plan of action. Monica wakes me up around Katie Lynn's 5:30am feeding because she (Monica) is having some pains in her abdomen beneath her right rib. She tells me this is the fifth or six time she's had these pains in the last two weeks or so. I "make" (strongly suggest.. forcibly..) her to go the ER to get it looked at. She agrees and off she goes while I look after Katie Lynn.
Monica calls me later that morning before Katie Lynn's appointment that she has gall stones and will be having her gall bladder removed! Monica's sister Amanda is up there to comfort her and keep her company since I was unable to.
The appointment with Dr. McGill goes pretty much exactly how we figured it would. He agrees with Dr. Goldthorn and schedules surgery for Thursday morning to reconnect her again with the hopes and intentions that she will function normally.
Monica's surgery goes well and is sent home around 6:30pm.
Her first night went decently - no stool though. This morning Katie Lynn began spitting up the green substance again. The surgeon and gastroenteroligist both reassured us that this was normal after surgery as the gut is the first thing to go to sleep when given anesthesia and the last to wake up afterwards. Around noon Katie Lynn did have a stool; however, it was more like the ones we had seen previously only much thicker.
Then around 5pm Katie Lynn made Monica and me ecstatic - a stooled diaper with a definite green hue/tint to it! Katie Lynn is still occasionally throwing up the green stuff, but each time it gets less consistent, less green, and more liquidy.
Katie Lynn was released from the hospital on Christmas day. This day marked 50 days from her birth to being healed; a true Christmas miracle.
On our way home, we stopped by the NICU ward to donate the ostomy supplies we thankfully no longer needed. The Covenant NICU unit was amazing, and while we don't even know if they could use the supplies, we knew that it was something to offer back.
To continue the trend of being in the hospital on holidays, we discover on New Year's Eve that Katie Lynn needed another blood transfusion (she had two while she was in NICU). She was very anemic after her surgeries and actually needed two transfusions. She was only admitted for the one day (overnight) and was released on New Year's Day.
Katie Lynn was taken off TPN on January 10, 2008.
That next week as we were attempting to flush her broviac with sterile saline but were met with 100% resistance; we couldn't flush it. We called the surgeon, and he informed us that was normal and not to worry. He told us to call his office in the morning to set up an appointment to have it removed. The broviac was removed on January 22, 2008.
Over the course of the next few months, we dealt with a few struggles: weight gain, pneumonia, stomach bug [twice]). Katie Lynn was so resilient and pulled through each time. We had semi-regular appointments with the gastroenterologist.
On June 18, 2008, the gastroenterologist released Katie Lynn from his care! He was extremely pleased with her progress and does not feel she needs to be under a GI specialist's care any longer.
Katie Lynn no longer has to see any doctors in regards to her surgeries.
Katie Lynn is truly a miracle; the good Lord has truly been watching over her.
|Days w/ an Ostomy & Stoma:||30|