Jacob can read!!!

He can read!! Okay, okay, not really... But Jacob sure could have fooled us. It seems as if after posting about sleep being overrated, he decided to be a good little baby and start sleeping more (except for last night). It was as if he read the blog and said "hmmm, maybe I'll cut my parents some slack." Or he is a fan of reverse psychology?!? Whatever it is, we will take it! After Jacob's hospital stay we decided to convert him finally to his crib. Due to his spasticity, laying on a harder flat surface is not comfortable for him. I found a baby memory foam pad for the crib and that did just the trick. Since we put him in his crib he is sleeping from 10:00 to 4:00-5:30. After we feed him he than sleeps to 8:00 most days. It is definitely a breath of fresh air to get him moved out of our room and sleeping a little more. Now if only I can re-wire myself to sleep straight through until 4 or 5:00.

Besides that, we did have an update with the neurologist last week. He still feels that seizures are due to arise any day for Jacob. Although I know it is most likely inevitable, it is still so hard to believe we will be facing multiple seizures daily with our little man. The neurologist also noted no appreciable change in development with Jacob, which always hurts to hear. Unfortunately it is the truth though. He decided to up his med dosages because his spasticity was getting pretty bad again. This could be a reason too I am sure why he might be sleeping better because his body can relax a little better. We do not go back to the neurologist until March now.

One last update is our aquatic therapy. Unfortunately Jacob's therapist decided to leave the practice due to 2 other jobs she already has. Jacob was starting to do pretty well with her and enjoyed his weekly pool time. We were just informed that the new therapist they brought in does not have experience with young pediatrics... GREAT! They are looking to possibly bring someone in on a contracting basis to work with Jacob and another little boy there. This is not a guaranteed agreement yet. If this does not work out then we are back to Akron and back to rushing around with long, drawn out days of appointments. I really hope we can stay close to home because life has been so much more calm and less stressful not running out to Akron every week. The downside of all of this is by the time we figure out what is going to happen, Jacob will be out of therapy for 3 weeks. That is never a good thing.

That's all I have for now...

A short hospital stay

This past weekend we ended up taking Jacob to the ER. He has had a horrible choking cough, very irritable, sleeping all day, and ate only 5-6 ounces in a 24 hour period. They ended up admitting him for a little over a day to give him fluids, monitor him, and check his eating. What they concluded is that Jacob probably had some type of viral infection creating all of these issues. The doctors there noted that kids with Jacob's type of condition are more susceptible to respiratory infections and it can hit them harder. It is unclear if this is solely from a virus or if it is also contributed to his neurological issue. The neurologist stated a little while back that at about the 6 or 7 month mark we could start to see some issues arise. Up to this point a baby's brain stem is running many functions of the brain. At around the 6 month mark, their brain starts to take over function. Since it is unclear the exact issues Jacob will face with his brain condition, he could face issues with swallowing, feeding, etc. when the main brain takes over. We are hoping this is not what we are seeing right now.

After about 24 hours of being admitted, they released Jacob and want us just to keep an eye out on his fluid intake. Although he is not eating what he was before, he is eating enough to stay awake longer and smile and giggle. I think he is on the up and up :)

Sleep is overrated

Sleep? SLEEP?!? What's that? If Jacob could talk, these would be his words. He has had a very bad week unfortunately. The screaming has dramatically increased and the sleep has overwhelmingly decreased. It is hard to watch Jacob in so much discomfort, so much irritation. We called twice to the neurologist to address this only to be left with no call back. Frustrating to say the least. Along with the crying, he has began to cough/choke on a regular basis throughout the day and night. There have been several nights this week he has been up for 3-4 hours just coughing so hard that his overnight bottle became a canvas painting all over our clothes and him. Jacob also is eating much less this week. He is getting back into the habit of showing signs that he is hungry, but unwilling to drink his bottle. We are just at a loss for what to do. It has been tiring and stressful, especially when you try to call for help with no answers in return. The one plus at least to this week is that Jacob's one hour EEG he had yesterday came back normal. So as of now, he is probably in the clear still for no seizures! You get the good with the bad I guess.

What we are thankful for...

Over the course of this week we were able to spend much needed time with both sides of our family and reflect on what we are truly thankful for.

We celebrated with my side this past Saturday and even managed to get professional family photos that day. This is the first time in almost 25 years that we had a professional family picture with my parents. I am so glad we finally managed to get this done considering we have been talking about it for over 5 years now. Then Thursday we celebrated with Shawn's side. Both of these occasions were well needed days where we could relax, eat, catch up on life, and laugh. We are very close to our families and enjoy the time we are able to spend with all of them. It never turns in to crazy chaos that people fear when it comes to family get-togethers over the holidays. We are thankful and fortunate to have so much love and help from our parents and siblings. From the daily phone calls, update text messages, informative emails, and facetime, we appreciate it all. We are especially thankful for our parents more than ever over this past year. They have given up so much of their time to be there for us. Whether it is watching Dominic while we take Jacob to appointments, coming over to provide a meal, or staying over while Shawn is at work, we could not have made it through this year without them. Our parents have always been a major part of our lives but they have provided so much strength and support for us that it is hard to even explain.

Aside from our family, we are thankful for our friends and co-workers. They are constantly lending an open ear and offering a helping hand if needed. As I stated before, I had to make a tough decision to stay home this year from work. To my surprise, my co-workers at school have teamed together and have been providing our family with meals throughout the past weeks to make life a little easier on us. We are more than appreciative of this wonderful gesture and the time they have taken out of their busy days to think of us. I am thankful for our NORO family and I look forward to paying it forward to them in the future.

And last, but not least, I am thankful for our family of four. Jacob has been a blessing in our lives. As challenging as the days are, he is full of love and hope. Dominic has been an amazing big brother with unconditional love for Jacob. He is a smart little cookie, makes us laugh and we love his crazy imagination. Shawn has been the most patient and understanding husband a wife could ask for. We have faced many hurdles this past year and he has been my rock through it all. Although I wish circumstances were different in certain aspects of our lives, I would not change our beautiful family.

I hope everyone had a safe and healthy holiday.. And steered clear of any crazy Black Friday madness!!

What does Santa get special needs babies for Christmas?? Hmm.. Good question!

As I am wrapping up my Christmas shopping for Dominic, I have yet to begin my list for Jacob. It is not that I have neglected to think of Jacob when it comes to presents, I just have not been able to figure out really what to get him. When I am out at the stores I find myself constantly searching for light and sound toys that would be easy for Jacob to activate by just accidentally knocking his hand on it. Most of the toys have specific buttons babies have to push for them to play music and flash lights. I need something simpler. I have only come across two toys that would work. One is the Munchkin Mozart Music Cube and the other is a little lighted rattle. Beyond that, I am stumped! I find myself again saddened and frustrated when I am at the stores in the toy aisle. They are all developmental toys to engage babies in learning how to grab, crawl, walk, interact, etc. It is not that I don't want to encourage Jacob in all of these milestones, but the reality is that he most likely never will fall in to these developmental categories. To be blunt, it just sucks. So what will Santa bring Jacob for Christmas?? Stay tuned as I try to figure it out...

Aquatic Therapy

We started Jacob in physical therapy at around 2 1/2 months. This is when they first noticed that he was very hypertonic. He was originally assessed for regular physical therapy at Akron Children's Hospital but he did not tolerate it well. He would scream and squirm if anyone ever touched him to stretch him out. The therapist there recommended aquatic therapy. In the first session Jacob tolerated about 25 minutes in the water. By the third appointment he was able to tolerate the entire 45 minute session. He really loved the water! His therapist, Miss B, was also very good with him and he made a lot of progress with her. We continued to take him there each week for the next eight weeks. The 45 minute drive there was becoming a pain with him screaming in the car and it also become a lot carting Dominic back and forth with us. It took nearly 3 hours for us to complete a 45 minute therapy session by the time we drove there and back, and completed his therapy. Along with all the other appointments and home visits throughout the week we felt this was too much on our family. We inquired about an aquatic pool for therapy closer to home. We came to find out that there was one five minutes from our house!

We began therapy with Jacob at the new place about three weeks ago. We hated to move him from Akron Children's because he was doing so well. Also at Akron they deal solely with babies and children. The place by our house is a regular physical therapy facility and they never worked with a baby in the pool before. After the first week Shawn and I really had to weigh the pros and cons of changing locations because we felt he may not make as much progress with the new therapist. We decided to stick with the new therapy facility by our home because it took an hour to get there and back, along with therapy. Also one of us could actually stay home and play with Dominic. The new therapist is not as experienced and seemed a bit uneasy at first handling him in the water. Let's just say we had to tell her a few times that his head was going underwater while she was working with him, whoops! He will be going into his fourth week now and I'm glad we have stuck with this place. He is becoming more comfortable with her and is starting to progress well there. It has taken some stress off of our family, and with Dominic, which I am happy to see.

We have been working on Jacob gaining more strength in his upper body. Although he has high tone, he still is unable to hold his head up on his own and push up on his arms when laying on his stomach. He cannot roll all the way over due to his arms. Jacob also cannot grab any toys as he keeps his hands fisted most of the time. Over this past week we have seen him open his hands more and seems a little more relaxed, which is a nice change. We have been told that he most likely will never walk so we are hoping he can gain control over his upper body so he can move a little in his wheelchair. For us any progress is good progress for Jacob!

Also, one real nice perk is they allow me to go in the pool and do my own work out while Jacob is receiving therapy. I have been struggling trying to find time to work out so this is a win win! So as of right now Jacob receives aquatic therapy twice a week and in-home therapy once a week. Our hope is that all of this early intervention will increase some functionality for him later in life.

Thought we were on to something

At Jacob's neurologist appointment last month the doctor decided to send a sample off for genetic testing. Polymicrogyria is usually caused by genetics, infection, or some sort of vascular event. We still do not know what caused Jacob's brain malformation so the doctor wanted to try another avenue for answers. Going back to when Jacob was born, they were going to test the placenta for various infections, genetics, etc. Well, the hospital "accidentally", or carelessly when they explained what happened, threw out my placenta even though there were several orders for the placenta to be sent for testing. That is a whole other story within itself that angers me just to think about it. Instead, we are chasing our tails now figuring out how and we most likely will never know. They did as many tests as they could while he was in utero but they came back inconclusive. They were hoping the placenta would've given us the answer but instead we are left doing a bunch of tests now after he is born while poking and prodding at him :(

So, back to the genetic test. We received a call from the neurologist last week that the results came in. He wanted Shawn and myself to both be there. They always leave us hanging with messages like that and waiting to meet them in person a week later. So last week and weekend was again, long and drawn out. Today was the day to hear the results. Only two areas came back in question when it came to the genetics. These two areas dealt with epilepsy and not with Polymicrogyria. There was only a moderate level that there was a genetic concern with these two genes. Shawn and I were asked to give a sample to go for testing to see if we carry this gene. If we both do not have this gene, then there may be some concern. If one of us, or both of us, carry the gene then there is no concern. The neurologist does not feel that the results of Jacob's genetic test led to him ending up with Polymicrogyria. So again, we are left with no real answers.

It's days like these that become so frustrating. We have gone through many tests over the course of this year. Every time, no matter how bad the test, I would silently hope that it would come back positive just so we could have a concrete answer and maybe a concrete plan of treatment and prognosis. Today, I truly felt like we were going to have some answers. But in the end, nothing. They say 50% of the time you will never know the cause. I really feel that this may be the case. If anyone knows me I am not good with dealing with the unknown. So this whole process has been tiring and trying. Oh well, back to the drawing board!

Optometrist Appointment

We took Jacob today to his optometrist appointment. The neurologist recommended that we take Jacob to check his eyesight. Jacob has made little eye contact and does not track many objects. He will be 6 months in a few days and has yet to notice our dog, Diesel. And going off of the name, Diesel is not a little dog. He is our 100 lbs. silver lab and hard to miss! Also when we go to his neurology appointments the doctor will do several assessments to check his vision and Jacob usually just stares off at the wall. I will say though in the past couple of weeks it does seem as if Jacob has made a little more eye contact with us than ever before and can track a toy for a few seconds. Baby steps, right?!

Anyways, back to the appointment. The doctor dilated his eyes and looked at his optical nerves and a couple other structures of the eye. She noted that they all looked great and appeared healthy. She did state that when babies are developmentally behind, their vision can be delayed as well. This may be the case for Jacob. The doctor also stated that after doing a quick assessment and looking at his MRI that he may end up having issues with his peripheral vision and processing. It is too early to tell with this. Jacob will go back when he is one year old to look into this further. And also during the assessments Jacob was a little ham and would give his gummy, drooly little smile at the tech and doctor every time they were trying to get his attention. Of course he would all of a sudden start to interact with the doctor today! Stinker!

So the good news is she feels he can see something. How much and how he processes it, time will only tell.

Happy Halloween!

Dominic has been waiting for trick-or-treat night for almost a month now. He was so excited the night had finally come, even with the lousy weather! He was, once again, a fireman this year. Jacob on the other hand did not care for Halloween or dressing up. I think this picture pretty much sums it up. As Dominic would say, "Happy Halloweenie" everybody!!

Case Report

Today I had someone call me from Akron Childrens in regards to Jacob. I was told that there is a new radiologist to their hospital who has been to some pretty notable hospitals around the country. She wanted to do a case report on Jacob's MRI history. The radiologist stated that he was a rare case and you do not see many cases where they have a fetal MRI. It is even more uncommon to have two MRI's while in utero. She thought it was very interesting how the brain changed and developed so much between imagings. The radiologist wants to do a case report so she can teach others across the country about fetal brain development and about the changes that can take place during this time. She will not include our names but will discuss medical history behind Jacob's case.

Shawn and I discussed this situation and will let them go ahead with the report. It only validates to me that this is a rare case as we have been told previously by both Akron and OSU. Also, if it gives other professionals a chance to learn from this, than more knowledge on it the better. Who knows, maybe one day down the road it will help another family gain an understanding on their unborn child. Maybe it will give other parents answers that we were desperately looking for during our pregnancy.

Another weekend..

I woke up today realizing it was, yet again, another Saturday. I was supposed to return back to work this past Thursday. I recently had to make the decision to take off of work for the rest of the school year. This was a difficult choice for me considering I enjoy working and my career. I have worked since I was 14.  I like to keep busy and working makes me feel as if I am accomplishing something in my day. I also enjoy the interaction with my coworkers at work. This within itself has been hard to let go of for the time being. The weeks seem to be coming and going and  it is starting to get a little harder realizing that Jacob is not making much progression developmentally. As a parent you look forward to watching your child grow, develop, explore their world. With Jacob it is as if time is standing still. We have a couple good days where he is calmer, eating decent, and sleeping decent. Then we have several more days where you feel that he took two steps back. He is fussy, more rigid with his muscle tone, and sleeping worse. It has been getting harder going out to and seeing families with little ones. I tear up when I see siblings playing with each other in a shopping cart or at a restaurant. Or something as simple as seeing mothers carrying their babies around in a sling makes me emotional because Jacob cannot tolerate one with his tone. Jacob's life is so different. He may never reach the milestones that some of these babies have already reached at 6, 7, 8 months old. It hurts more when I think of Dominic and how he will never be able to run around, wrestle, or ride bikes with his little brother like many other siblings do. I guess with the warmer weather leaving us and the dreary fall approaching it has shifted my moods with everything. Don't get me wrong, I am thankful that we are fortunate to have Jacob as our son, it has just been difficult accepting this new way of life.

He's finally here!

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.

Let's start from the beginning

I have thought about it for several months now to start a blog about our journey with our son, Jacob. What better day then today to start? I felt this would be the best way to keep our family and friends up to date on Jacob's life and our journey with our son. As the weeks go by, I feel it is almost impossible to keep everyone updated on the happenings of Jacob, so I hope you find this a great way to stay in the loop. And one thing to note - I am not the most grammatically correct person so don't judge my writing. I am a math person, not a literature person. So here it is..

 Jacob was born on May 10, 2014. Our story with our son started way before that time though. Back in January during our 20 week gender scan the doctor noted what was to be a club foot on the ultrasound. We were to return in 4 weeks for a follow up ultrasound. At our 24 week scan the doctor felt that there was still indication that our son may have a club foot. We were referred to Akron Children's Maternal Fetal Medicine. We were a bit nervous about the thought of the possible diagnosis, but looking back, a club foot would have been a godsend. We met with the MFM doctor mid-February for an ultrasound. During this visit we were relieved to find out that Jacob did not have a clubfoot, but left way more worried than when we originally arrived at their office. During the ultrasound the doctor noticed what looked like several brain abnormalities. We were referred to Akron Children's main campus for a follow up ultrasound.

The next week was misery as we waited for our appointment day to arrive. Finally the day came during late February to have yet another ultrasound, but this time at Akron's main campus for MFM. During the ultrasound we were nervous as there was not a lot of discussion that went on between Shawn and I, and the nurse. When the doctor came in to review the images there were 3 main areas of the brain she was concerned about. At this point I think our hearts sank and it felt as if someone had knocked the wind right out of me. How could this be happening? How could something be wrong? I have done everything by the book, and then some, during this pregnancy up to this point. We were asked to sit down and meet with their palliative care team as we awaited an MRI that they set up for us that afternoon. That morning was a bit of a blur sitting down with palliative care. Right when they walked in to the room they handed us a box of Kleenex and I knew this was not going to be good. They discussed their purpose, services they provide, and what their role would be during this "journey"  with our unborn son. Later that day I had the fetal MRI. We were to meet a week later with a variety of doctors to discuss the results. Again, the next week drug on as we awaited to hear the fate of our son.

The day finally came to meet with back at Akron Childrens MFM to discuss Jacob's MRI. It was a bit overwhelming as Shawn and I walked in to the conference room. There was the neurologist, neonatologist, perinatologist, nurse, social worker, and palliative care team. I never knew what half of these people even did before that day. The neurologist got right to the point and showed us the scans of Jacob's brain. There is one image I think has been burned into my head permanently from that day. He showed us a picture of Jacob's brain alongside a typical fetus brain. Nearly 40% of Jacob's brain had not grown and was essentially missing. He went on to explain the areas effected and what the potential outcomes would be - not able to walk, talk, see, hear, think, etc. It was an endless list of horrible possibilities. Shawn and I walked out of that meeting in utter shock and disbelief. A piece of my heart died that day hearing those results.

The following weeks were filled with countless doctor appointments and tests trying to help them find a cause for this. They all resulted in no answers. We decided to get a second opinion at The Ohio State University hoping to receive different news. Unfortunately, this was not the case. They too agreed that this was a rare case they had not seen before and were unable to figure out what the cause might have been. this all just did not make sense to Shawn and I, just surreal. It became harder each week to carry on at work and in the public as people commented and held conversations about how wonderful it will be to have another child, another boy, a playmate for our older son. I would carry on with a smile going along with the conversations just knowing in the back of my mind that life was going to be so much different than that.

Fast forward to 35 weeks. We had a follow up MRI. To everyone's  surprise, Jacob's brain had grown and almost completely filled the skull. The neurologist at this point had a different tune in his voice and felt Jacob may live a somewhat normal life. Shawn and I were a bit guarded with this prediction though knowing what had happened earlier in the development of his brain. At 36 weeks the MFM doctor noticed that Jacob's overall growth had slowed tremendously, especially his head circumference. She stated that I now had IUGR, inter uterine growth restriction. This basically means that the necessary nutrients were not being passed along to Jacob through the umbilical cord. Again, another curve ball thrown our way. When we met with the doctor the following week, at 37 weeks, she noticed the same trend and urged delivery to be induced that weekend. If not, there was a good chance that Jacob would not survive the remaining 3 weeks in utero.

At exactly 37 weeks I was admitted to the hospital for induction. To spare all the details, it was a crazy and chaotic morning and afternoon with several major decisions that needed to be made. Finally in the evening it was decided that I would need to have a c-section. Jacob Alexander was finally born at 8:15pm at 4lbs. 9 oz. and 17 inches long. He was breathing on his own and was a little fighter. Shawn and I were thrilled that Jacob was alive and well, and that this phase of the journey was finally over.