Starting where I left off from... Jacob arrived on May 10, 2014. He was breathing on his own and scored high on his 1 and 5 minute Apgar tests. Life was looking good for him! That night Jacob was admitted to the NICU due to feeding issues. He was unable to feed on his own and was hooked up to a feeding tube the following morning. The next two weeks were very tiring as Shawn and I tried to balance our time between home with Dominic and the NICU with Jacob. Each day Jacob seemed to eat a little more on his own, but each day it seemed as if they kept bumping up the minimum he had to eat. After the 3rd day in the NICU Jacob was placed under the bilirubin lights for the next 3 days due to jaundice. I hated seeing him hooked up to so many monitors, lights, and now sporting foam goggles over his eyes. Our days with Jacob in the NICU consisted of feeding him every 3 hours, holding him, learning new routines for him, and starring at his monitor. Oh how I hated watching that monitor. Besides his feeding, Jacob was doing well with everything else. They decided to allow us to take Jacob home as long as we were okay feeding him with the feeding tube and being able to change in and out his tube when needed. By the end of our stay at the NICU we became experts with this. The whole process took an hour from start to finish with the feeding tube. We were learning a whole new way of life for now when it came to feeding. We were happy to know we would be taking Jacob home so soon. I give credit to all of those parents who endure weeks, months, and some even over a year with their baby in the NICU. Having Jacob there for only 11 days seemed like an eternity and was very draining on Shawn and I, while trying to maintain normalcy at home for Dominic. Jacob came home on May 21st.
The next couple of weeks were filled with home health care visits with the nurse and other doctor appointments. Jacob was gaining weight at a rapid rate. Finally, on the day of Jacob's original due date, May 30th, he ate his whole first bottle on his own! From there on out he started to become consistent at taking his bottles. It was as if he knew when he was supposed to be born and decided to eat on his own from there on out. It was such a great milestone for Jacob to accomplish! We were able to take his feeding tube out on June 10th for good!! He has not had the tube back in since. As soon as he tackled one hurdle, there seemed to be about 5 more on the horizon. The next few months were filled with home visits, doctor appointments, specialist meetings, therapies, etc. We met with the pediatrician, neurologist, audiologist, gastroenterologist, physiatrist, physical therapist, occupational therapist, home health care, and county disability workers over various issues and concerns.
The first obstacle was the screaming. For almost 3 full months Jacob screamed for 6-8 hours a day. He went through a series of doctor visits and tests to figure out what the cause of the screaming was. We never really did find an answer but think it may have been a combination of formula sensitivity and neuro irritability. When babies have neuro issues they have a high pitched scream instead of a cry. This definitely proved to be Jacob's case. Jacob also did not like car rides. Many parents take their babies for a ride in the car to settle them down. Not us, we dreaded it! Jacob would scream from the moment you put him in the car seat up to the moment you took him out. When we got to our destination he would be beat red, dripping sweat, and still screaming! Aside from this, we were also still feeding him every 3 hours even at 4 months old. For the first 2 months we lived by an alarm. Every 3 hours we had to feed him. The worst was during the nights when Jacob would be sleeping, we would have to wake him to feed. And remind you, it took an hour to feed him. We were pretty sleep deprived back than, than we are now. Once we were allowed to stop waking him to feed, he became used to that routine internally I think. And although he was gaining weight well, he did not take in enough formula to fill himself up. Even now at almost 6 months he still has days, and nights, where he is on a 3 hour schedule. Feeding will continue to be a challenge. It is safe to say that Jacob is consistently inconsistent. As hard as it still is right now, it was beyond horrible during those first few months of his life.
We were due to check in with the neurologist once a month after Jacob was born. The first 2 months were great visits. The neurologist felt he was doing everything he should be doing and was on track to lead a somewhat normal life. He even told us to set up a college fund for Jacob. I had my reservations though. I was concerned by two months that he was still not tracking things and did not make eye contact. People kept telling me to give him time, he was born early. My gut instinct knew it wasn't good. He also had very tight and rigid muscle tone, along with an overactive startle reflex. When we went for Jacob's 3 month visit the neurologist became more concerned with all the things I just stated. He scheduled Jacob for a MRI and a 1 hour EEG. The EEG came back normal, which meant no seizure activity. The MRI on the other hand was anything but normal.
We had to wait a week to hear the results of Jacob 's MRI. We went in to the appointment optimistic but left there shattered, once again. The neurologist when on to explain that Jacob had Polymicrogyria, or PMG. This means that the outermost part of the brain did not develop properly and created many small folds instead of the normal folds. There was some sort of disruption in the cell migration of the brain. It was either an infection, vascular event, or something genetically that caused this. And to top it off, Jacob has the most sever form of this disorder. We were told we could expect him not to be able to walk, talk, see, hear, think, seizures, etc. Basically every function could be affected. The neurologist also confirmed the diagnosis of Microcephaly, which means he has a small head and the brain is smaller. When we thought before that things couldn't get any worse, they just did. To this day I still have a hard time believing this will be the fate of our son.
As the weeks went by Jacob's muscle tone was getting worse. He was constantly arching, flexing, and overall very rigid and stiff. This was impeding on his daily activities, sleeping, and overall well being. He never seemed comfortable or content. After our 4 month visit with the neurologist he set us up with a 24 hour EEG to see if he was having seizures that might be leading to some of his issues. The results of this test came back negative showing no seizure activity. They were however able to see how restless Jacob was and prescribed him a medication to help ease his tone. This only was beneficial for a week. After a few weeks we consulted with a physiatrist about his tone. We left with no real answers. When we met with the neurologist for his 5 month check up, we expressed our concern again about Jacob's tone. He now prescribed his an additional medicine for his tone. Jacob has been on this med for about 3 weeks now and he is the calmest he has been since birth. There has also been a dramatic reduction in his screaming episodes. Things are by no mean perfect with the meds, but better than he was previously. We still struggle with him sleeping at night and laying him down for naps. He only seems to be comfortable when someone is holding him.
Although it seems as if I wrote a lot about these past 5 months, there are many details I left out. Jacob currently still has monthly check ups with the neurologist. He is attending aquatic therapy weekly and loves being in the warm water. He also receives in home physical therapy once a week. He is not the biggest fan of this. Developmentally Jacob has not accomplished a lot. He still does not make much eye contact, does not track many objects, cannot support his head, cannot sit, cannot push up on his arms when on his belly, and does not roll. He can smile, coo, and roll on his side from time to time. His little gummy smile and giggles keep us going :) Die to his brain abnormalities they expect him to have seizures occurring sooner rather than later. They do not expect him to develop at a normal pace and feel he will never walk or talk. They also feel his cognitive skills will be severely impaired and his life expectancy will be shortened. The neurologist cannot give a specific life expectancy prognosis. Overall, it will really be Jacob in the end who will dictate what he can and cannot do.
With all that we have encountered so far in Jacob 's short life, we do know that we love him and he can feel our love. He smiles and coos every time his big brother Dominic is around and enjoys being around his family, grandparents, and relatives. We will give Jacob every opportunity we can to grow, develop, and enjoy the wonderful things this life has to offer him.
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