Michael’s LONG Week

Posted: 22nd August 2012 by babymichaelsstory in Posts
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Baby Michael apparently missed the nursing staff at Rainbow’s as we had to go back and visit them for a week! For about a month and a half, Michael has been having trouble with his feeds. He’s been arching his back, crying after a couple of swallows, and is just absolutely miserable for a long period of time following his feeds. Courtney and I thought there was a high possibility that Michael was aspirating his formula, and that he had really bad refulx.
On Sunday, August 12, we were off to the ER. These are always fun trips as there is only one ER that we can go to with Michael, and it’s an hour and a half away. Normally, for something not life threatening we would wait for an appointment, but aspirations can cause pnuemonia and other complications that we just don’t need. Waiting for an appointment to open up would just be too long to wait, Michael was being absolutely miserable.
As we got to the ER, we were met with our normal VIP treatment. Baby Michael is quite the unique case, and thus, he pretty much gets front of the line privileges. We were taken into our triage room where Michael would wait to be seen. Michael has this magic way of being absolutely perfect when a Dr comes to look at him. It really is quite amazing how something that has happened for multiple weeks without fail, would completely disappear just at the exact moment there is a medical professional looking at him. So the doctor comes in and looks at our “sick baby.” Luckily we had armed ourselves with videos of what he had been doing during his feeds. After showing the doctor the videos he def realized that we weren’t fabricating facts.
By all accounts the ER trip was rather pointless. We already had an appointment with GI the next morning, and had we been admitted, it would have taken longer to see the GI doctor. The good thing though, was that it showed the GI doctor that this was actually rather significant and not just your run of the mill reflux.
The next morning (Monday, August 13) we got to the doctors office and without much of a conversation, the GI doctor said she was going to admit Baby Michael for tests on his upper GI tract. Off to Rainbow’s Floor 6 yet again we went. First, we were taken to a shared room. Well, Michael has a very………. fragile immune system, so a shared room is certainly not ok. After making our presence felt with immediate demands for a new room, we met the doctors and discussed the different tests that Michael would be receiving.

Below is listed the test, their date given, and a bit of the information that came from each test;

Upper GI Test (Monday, August 13): This is a test where they watch Michael swallow barium on an xray machine. This test showed that Michael was having “wide jaw excursion” meaning that he opens his mouth too much when he’s eating.

pH Impedance Test (Tuesday, August 14): Michael would have a cathetor placed into his esophogus which would read the amount of refulx he had, the strength of that reflux, and how often he had reflux. This test came back with extremely abnormal readings. This certainly made the doctors begin to wonder the best course of action to take care of this problem soonest. Imagine a mixture of battery acid and vinnegar sitting in the back of your throat 80% of the time. That’s exactly what the results showed Michael was going through.

Modified Barium Swallow (Wed, August 15): This is similiar to the Upper GI Test, but with an occupational and speach therapist watching. This test would determine whether Michael was aspirating his food. Results came back that Baby Michael was not aspirating his formula during a normal feed, however, during a feed with rice cereal added, he was aspirating it. This likely means that during feeds where Michael is tired or fatigued, he is aspirating his feeds.

Endoscopy (Fri, August 17): This is where they would stick a camera down Michael’s esophogus, into his stomach, and into his upper intestines. This test would show that the reflux has not yet done damage to his digestive tract. However, the irritation in the stomach would suggest, that we were in the early stages of possible ulcers or thrush.

After the endoscopy, the nurses would place a NG tube (Feeding tube through the nose). This is to ensure that our little man is getting all of the nutrition he needs. It’s kind of hard, because we know the reason he doesn’t eat is cause it hurts, so we are really putting him through pain by forcing the feeds, but obviously eating is necessary so we can get over it.

Finally, on Saturday morning we were discharged and ready to go home. Michael was absolutely horrible through the entire stay (understandably so). Poor Courtney stayed with the little guy through it all (with the exeption of Daddy’s night Thursday).

Now you are likely thinking to yourself, “Of course she did, who wouldn’t stay with their kid the entire time.” MUCH EASIER SAID AND THOUGHT THAN DONE. Imagine being stuck in a tiny room with a child constantly screaming. This is your child and you know he is screaming in pain and there is nothing that you can do to ease that pain. Now add to that, every single time you finally get that child to sleep, a doctor or nurse comes in cause she needs to test or check something. Which in turn wakes up the baby, who than begins where he left off with constant screaming. You are doing this on about an hr of sleep because well, he hasn’t slept the entire time he’s been there.

I did one night of this (Usually I am the one that goes home to take care of the dogs and the house.) cause Courtney was understandably losing her mind. Let me tell you, this was an experience that no parent should ever have to endure, let alone, regularly for a week at a time. I was able to keep from going nuts, but truly only because it was one night. There is likely no way that I could do this for the amount of time that Courtney does this. To give you an idea of how my night went:
The Browns were having their preseason match-up with Green Bay. AWESOME, I can feed Michael about 45 minutes before the game, burp him, and have him fall asleep just in time for kick-off. Three hours between feeds, football game is about 3 hours. This is going to be perfect. Pfffft, I got this.


Went to feed Michael is bottle, and he of course screamed in pain and pulled from the bottle the entire time. Ok, now we are running a bit behind but I still have 20 minutes or so to get him to sleep. He’s being pretty calm now that the bottle is over……. Wait, wait, his eyes are rolling back and he is starting to show the signs of a nap…. YES! This is working…… Game time is approching (7:50 and games @ 8), baby is falling asleep, this is happening!
Michael’s eyes open wide, face crunches up, and the shrieking begins. Absolutely full go, as loud as he can, body tensed just to make sure he gets every bit of his body behind it, screaming. Like I said, this begins at 7:50. By the time 2am rolled around, Michael decided he would take a couple of minutes to be quiet and take a nap. 2:15 rolls around and now its time for vitals…. Michael starts his screaming again. Finally however around 3am, he or maybe just I, fell asleep for a couple of hours. I made it clear that if any nurse or doctor came into the room and disturbed him they would be exiting the room through the window and not the door.

Well thats pretty much a night in the hospital. During the day you get constant screaming, mixed with doctors and nurses coming in to tell you about a million different things about your kid. You are than required to understand, remember, and make decisions based on all of this information. Have fun!

Baby Michael’s Benefit Dinner Announced

Posted: 4th August 2012 by babymichaelsstory in Posts
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Family, friends, and members of the Northeast Ohio community will be joining Baby Michael at his Benefit Dinner on September 8, 2012. The event will take place at The Patrician Banquet Center in Eastlake, OH @ 33150 Lakeland Boulevard. The event will start at 6pm and go until 11pm. Events taking place at the dinner will include Chinese Auctions, 50/50 Raffles, Independent Vendors, Music, Dancing, a cash bar, and much much more!

We are looking forward to this event, and seeing this community come together to help our family in this great time of need.

Tickets are now available for purchase online @ http://www.fanfueled.com/Event/Details/3469-baby-michaels-story-present-michaels-benefit-dinner and cost $20 for adults and $15 for children between the ages of 6 and 15. 5 and under are welcome at no cost. Tickets will NOT be available at the door so get them fast!

If you would like to purchase a ticket with cash, in person, you can contact Jessica Di Donato @ (440)339-7176 or The Santon Family at (440)321-7705.

Anyone who is still looking to donate items for the auctions may do so by contacting the aforementioned personnel.

The support and love that this community has already shown us is truly amazing, and I have very little doubt, they will continue to surprise us as we move towards this event!

Michael’s EEG

Posted: 4th August 2012 by babymichaelsstory in Posts
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Baby Michael went to Rainbow’s on Tuesday, July 31, 2012 for an EEG. An EEG tests brain waves to check for seizure activity. The test was a 72 hour long process where Michael was observed. Results take four weeks to return, however, he did have some activity known as a “spark” which is the brain signalling the possibility of a seizure. Michael did make it through the test with no actual seizures, which is great!
Baby Michael certainly did not enjoy this test, and poor Courtney took the brunt of his anger. Being the amazing mother that she is, Courtney stayed with Michael every minute of this testing, while I had to go home to care for the dogs. We will update as soon as we get results from the test.

July Overview

Posted: 30th July 2012 by babymichaelsstory in Posts
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July was Baby Michael’s first full month home. To sum it up in one word……. HECTIC! The saving grace was that we already knew it would be. From trying to fit in visits from friends and family who wanted to meet our little miracle to appointment on top of appointment on top of appointment. Oh, and when we thought we were going to have a day off……… Baby Michael would need to do an emergency visit to his pediatrician. All in all though July has been an amazing month!

Baby Michael got to hang out with his best buddy Baby Carson a lot! From the spill way and ice cream, to Michael’s first birthday party invite (Thank you to Braylon’s mommy and daddy)! Also, Great Grandma Jigsy has quickly become his favorite person. I swear I’ve never seen a connection between two people the way that those two connect and love one another. It is truly amazing to witness on a regular basis.

We’ve had our rough patches trying to get everything stable for our little man as he is trying to learn his way in the world. From having to switch between 4 different types of formula to having to adjust his hypertension medication. For a two week stretch, Michael pretty much cried throughout each and every day, with a few 20 minute naps in-between.

Luckily, it seems that we have began to make some major headway as Michael has returned to the sweet, calm, and happy baby that we knew him to be. Below is listed an update on each of his medical areas.

Weekly CBC (Blood) Test

Michael started July with counts of:       Platelets: 117       Red Blood Cells: 27.8       White Blood Cells: 9.9

Michael’s final number in July were:       Platelets: 102        Red Blood Cells: 29.3       White Blood Cells: 6.2

While his platelets and White Blood Cells have dropped some, these are very good numbers and Michael has shown stability in holding on to his blood counts without the need of any transfusions.


Courtney and I would discuss Michael’s thrombocytopenia as well as his red and white blood cell count. At this time we have his platelet threshold at 50,000. Since, he has not come close to needing another transfusion. Appointments will be made as required.


Michael was diagnosed with a hypothyroid condition. He was placed on a low dose of medication, and we will be following closely to see if he will out grow this issue. Follow-up appointment is in late August.

Physical Therapy

The physical therapist has begun working to stretch out Baby Michael’s muscle tone. Also, she is beginning to work with him on head control. Michael has shown tremendous strength, and is beginning to scoot and sit up on his own.

Home Nurse

Michael’s home care nurse comes multiple times per week to take his blood pressure and check on his overall health. To this point, Michael has checked out well during all of his nurses visits!

Help Me Grow

Help Me Grow has began working with Courtney and I to try and locate a Blood Pressure Machine for Michael’s personal use. They are also helping to find different ways to help with Michael’s head control.


The neurologist said that she really believes that Michael is looking very improved from what she saw of him at the NICU. His muscle tone is much better, his alertness his up to par, and he has shown no signs to any delays in development to this point. Michael will have an EEG on July 31 to determine whether or not he is having seizures. Results will be given to us on August, 1. Fingers crossed. Next appointment is currently scheduled for November.


Well, we thought Michael was going in for his circumcision, but apparently it was just a consult. He is in a window (until 7 months) where he can not get a circumcision done. Also discussed, while in the NICU, Michael showed hydronephrosis (fluid build up around the kidneys). This will be followed up with an ultra sound and discussed with urology immediately following. This will take place in Oct.


Hypertension was the major topic of concern during this appointment. Unfortunately, Michael had not outgrown his hypertension the way that we had hoped. Michael’s medication was increased and his blood pressure will continue to be monitored closely. Follow-up’s will come as required.


We are in constant contact with Michael’s neonatologist. She is currently monitoring all of Michael’s treatments to ensure that no specialist is doing anything that will interfere, or cause further damage with another.


Courtney and Michael’s Pediatrician are basically best friends. Courtney calls her several times a week and spends about an hour and a half during each phone call speaking with her about all of Michael’s issues each day. I can not begin to explain how amazing the Pediatrician has been through everything. But do not think that Courtney is just being paranoid either. Each phone call has resulted in a change in Michael’s care because she noticed something that did actually make a big difference. With 2 actual appointments, and I believe 2 emergency appointments, Baby Michael is getting to know the staff there very well!

Mommy Care

Courtney has truly been the MOST AMAZING advocate for Baby Michael. She is constantly checking him and writing everything down. Looking for any signs of any problems. Truly, Michael could not have a better mother. Not a dot, bump, or temperature change on Michael has gone without some form of investigation from his mommy. Baby Michael is truly a very lucky little man!

Baby Michael’s Return to the Hospital

Posted: 19th June 2012 by babymichaelsstory in Posts
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Well after only two days of being home, Baby Michael needed to return to the hospital on June 19, 2012 in order to find out the cause of his returned petechiae. After several hours in the ER, he was admitted to Rainbow’s, Floor 6. It would be learned that thanks to Mommy’s excellent eye, the petechiae were indeed signaling that Baby Michael’s platelet count had dropped to an unfavorable level. He would receive another platelet transfusion, a plan of action would be placed, and on June 21, 2012, Michael was ready to return home.

Baby Michael’s Homecoming!

Posted: 17th June 2012 by babymichaelsstory in Posts
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On June 17, 2012 Baby Michael finished his six week cycle of Ganciclovir and was ready to come home! I had spent the last couple of weeks commuting back and forth from Rainbow’s to home in order to get the house ready. On this very special Sunday, I came in time to watch as they finished the last Ganciclovir treatment, and remove Michael’s PICC line. After waiting an hour to make sure that his PICC line hole would clot and close, we were ready for ourjourney home!

After getting home from the hospital, we wanted to keep things very calm and quiet for Michael’s first day in his home. Keeping it simple, we would just all sit and relax together and cherish the moment. The next night Baby Michael would get the opportunity to take his first real bath, interact a little with his four dogs, and check out some of his toys such as his swing, pack and play, and things of that nature. Courtney and I wanted to make sure we kept some things as normal as possible for Baby Michael during his transition. So, we made sure they played Michael plenty of Kenny G, Emily Bear, and Jim Brickman which were his favorite CD’s while he was in the hospital.

On his third day home, we started to notice that Baby Michael was acting a little more fussy than usual. Courtney’s excellent eye noticed Michael’s petechia (small red dots signaling low platelet count) were coming back and it was off to the ER we went!

Short lived, but much appreciated, Baby Michael’s return home was a magnificent feeling for us. The feeling of normalcy is one that can not go under-appreciated in a situation such as this.

Baby Michael Moves to the Transitional Unit

Posted: 23rd May 2012 by babymichaelsstory in Posts
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Baby Michael had a very intense stay in the NICU, but before long, he was stable and ready to move on to the Transitional Unit of Rainbow’s, also known as the Step-Down Unit or Rainbow 4. This was a very emotional day for us as it was a huge step in the right direction for our little man. May 26, 2012, just over 2 weeks after Michael Jr was born, he would no longer require such intensive care. The walk down the hallway with him was full of pride and you could feel stress being removed as we took each step towards his new room. As we got into the room we were briefed on how the transitional unit is much more hands on for the parents. How Courtney and I would be able to do the things we waited so long to do. Changing him, bathing him, giving him his meds, and other responsibilities would now become much more normal! The step down unit would work as it was designed in that Michael Jr seemed to blossom into being ready to finally come home. And after 3 1/2 weeks, when his Ganciclovir cycle was finished, Baby Michael would be ready to go home!

Initial Concerns in the NICU

Posted: 6th May 2012 by babymichaelsstory in Posts
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Baby Michael was quickly transported from UH MacDonald Women’s Health Hospital, to the Neonate Intensive Care Unit (NICU) of UH Rainbow Babies and Children’s Hospital in Cleveland, OH. He was suffering from Congenital CMV which caused a plethora of acute problems that would need to be kept under control if he was going to have a chance.

Some of his more serious acute concerns were:

Thrombocytopenia (Low Platelet Count), Patent Ductus Arteriosus (PDA), Pneumonitis (Fluid in Lungs), Azobilirubin (Jaundice), Hypertension (High Blood-Pressure), Neutropenia (Low White Cell Count), Splenomegaly (Enlarged Spleen), Nephromegaly (Enlarged Kidneys), Hepatomegaly (Enlarged Liver), Anemia (Low Red Cell Count), Cardiomegaly (Enlarged Heart), Hypothyroidism (Underactive Thyroid), Microcephaly (Small Head Circumference), Respiratory Distress (Not enough Oxygen), Hydronephrosis (Fluid around Kidney’s), and Hypertonia (Tight Muscle Tone).

All of these concerns would be attributed to his CMV infection. Upon arrival to the NICU, the doctors and staff (BEST STAFF EVER) would have to decide which problems to try and tackle first. Which medicines to use that wouldn’t worsen any other condition.  As well as, which medicines could be used together, be used for a premature neonate and how long Michael could sustain each medicine. These were decisions that needed answered quickly and carefully, two things which do not go well together.

The first things that Baby Michael’s doctors decided to work on were:

  • Respiratory Distress & Pneumonitis: Michael was immediately placed on a CPAP Machine to assist in his breathing.
  • Thrombocytopenia, Neutropenia, and Anemia: Michael was given transfusions for Red Blood Cells, White Blood Cells, and Platelets.
  • Cytomegalovirus Itself: A six week cycle of Ganciclovir was immediately started.

The hardest part about the NICU was trying to weigh the risk vs. reward factor with all of his care. By starting this medicine, you are likely to diminish his platelet counts even more. Which would lead to him needing another platelet transfusion. Which would lead to him needing fluids pushed. Which would lead to him needing lasix (to make him pee out the fluids). Which would cause him a lack of nutrients. And on and on and on and on the cycle would continue. It was a constant struggle and many conversations, arguments, and disagreements between the doctors, nurses, and us would occur. Everyone did an excellent job of remembering the reason for these arguments and at no time did anything ever get out of line. Just the heat of such a stressful situation for all involved was enough to cause tension in the room at most times.

Early on, the doctors had very little hope for Baby Michael as he had so much to overcome. The Palliative Care team was constantly in the room, which played as a constant reminder that things were looking grim. The doctors, medications, and treatments could only do so much. It really was going to be up to Michael to make up the difference. On a couple of occasions it didn’t look like things were going to play out in his favor, however, being the amazing little fighter that he is, he pulled through every time.

Not only was he able to over come these obstacles, he was able to do it much quicker than any one had ever anticipated. The NICU basically figured on us being there at least until his 6 week cycle of Ganciclovir was complete. Well Baby Michael responded so well to his care, that he was able to get off of the CPAP Machine within the first two weeks. He would no longer need daily transfusions, and he was not going into any type of D-stat (drop in his pulse/oxygen levels). He was not having any apnea’s or bradycardias. Other than his nasal cannula (to help minimally with breathing), his Ganciclovir treatments, and his medicine to assist with his hypertension, Baby Michael did not have any more acute medical issues. It was time for him to take a HUGE step into the Transitional Unit.

A HUGE shout out to the NICU staff who truly made the experience we had an amazing one! All of the nurses to include the Ashley’s (1,2, and 3), Kristin, and Andrea. These were seriously the BEST nurses that any human being could ever ask for. Caring, kind, and SO smart when it came to their jobs. Make no mistake about it, these ladies WERE the reason Baby Michael is here today. We will never forget the amazing job that you all did! We are forever in your debt.

Induction Day(s)

Posted: 4th May 2012 by babymichaelsstory in Posts
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We were going to see Dr. Corteville as was required since learning of Baby Michael’s issues. Dr. Corteville would perform an ultra sound twice a week to make sure that he was not in distress at any point. Well, at this appointment, Baby Michael was showing the early signs of cardiac arrest. Dr. Corteville ordered that Courtney be induced, and Michael Jr be treated immediately.  Well this was at 10am, Friday May 4, 2012.

Finally at around 5pm we were put into a labor and delivery room where Courtney began her first round of Cytotec to soften her cervix since she was induced so early. She was supposed to receive this pill several times over a course of 12 hours. Within the first six hours of receiving this pill, Baby Michael showed significant signs of distress from the induced contractions. The doctors decided that they would change their course of action after Courtney had an allergic reaction to the vancomycin, and Michael Jr. was in distress several times during contractions.

I had gone home to grab some close and toiletries for the early part of the Cytotec. I just know that when I came walking back into the room, there were doctors, nurses, and all sorts of people around Courtney. I obviously feared the worst. Was Courtney dying? Was my little man crashing fast? What was going on? I would quickly learn that on top of the baby not handling the contractions, Courtney also had an allergic reaction to the medications they had given her. At this point I thought… Wow, it couldn’t get much crazier than this….. Boy was I wrong.

A very uncomfortable procedure was then put into play where Courtney would have a balloon device oddly placed for 12 straight hours. After 12 hours of this, the doctors would have to remove the balloon and learn that the balloon had made very little progress. The doctors decided they would now begin the Oxytocin to begin labor. Shortly after this Baby Michael had several spells where he was not tolerating the labor. After a long period of watching the doctors try and bounce back and forth with the amount of Oxytocin given, Courtney and I decided she was no longer going to be their guinea pig.

Michael Sr. asked the chief resident when they would stop playing around and decide to do a cesarean section. The baby was OBVIOUSLY not going to handle intense labor given he was going into distress from the early onset of labor. After fighting with the chief resident for about 20 minutes, she went to get the Attending OB on call. When he came in to the labor and delivery room, the doctor and I would have a very intense conversation involving the handling of Baby Michael. It was VERY hard to keep from screaming and breaking things at this point. To put it kindly, the doctor more or less said they didn’t think Baby Michael was going to make it. Thus, they did not want to put Courtney through a C-section. Eventually the Doctor said that he would give the Oxytocin one more shot, and if the baby went into distress they would move to a c-section. So finally, after 38 hours of labor, Michael Sr was right and the doctors decided a C-section was needed.

Courtney would go into the surgical room and I would have to wait for the nurse to come get him. After what seemed to be hours and hours, the nurses came to get me (it was really only about 15-20 mins). Monet (our nurse) would take me to the operating room. Courtney was on the operating table and there was at least 20 other doctors and nurses in this very small room. The anesthesiologist was a very busy man, he was checking numbers, running meds, and doing about 1,000 things at once. I just remember watching him throughout the procedure. I figured I would be able to gauge how things were going based on how he reacted. While the doctors were cutting into Courtney, she was clearly feeling just about everything. I swear I have never had the urge to cry on behalf of seeing another person in pain, but watching Courtney’s eyes and mouth widen, while her grip would get intense, I really felt like crying.

The whole time we were just waiting to hear a cry or noise of any sort from Baby Michael as he came out. Apparently, and no one told us this, they did not want Michael to cry immediately after he was pulled out. He was pulled out and taken from the room in a hurry with out a sound. I remember Courtney frantically asking me if I heard the baby. I just shook my head and looked at her. We both started to tear as we thought the worst. The anesthesiologist quickly gave Courtney a shot that would knock her out. Obviously that can not afford to have someone freaking out on the operating table.

A couple of moments later, a nurse came in to take me to the room where they were working on Baby Michael. When I walked in it looked as though they were giving my son CPR. At this time I just thought they were going to basically tell me to say goodbye. At that moment the Neonatologist that was working on Baby Michael turned to me and said “Congratulations, he is breathing on his own and seems to be doing much better than we thought he would be.” I swear he didn’t even get to finished those words before I broke down into tears. My whole body was shaking. The last couple of weeks, the past two days of horrible stress, had all come to meet at this point. I always thought that if you cried from joy it would feel different than regular crying. The oddest part was that I felt like I was crying from being upset. Obviously, emotionally I was ecstatic. I hurried up and tried to take as many pictures as I could to show Courtney when I returned to the operating room.

Once Michael Jr was transferred to the NICU, I returned to the operating room to show the new mommy pictures of her son and tell her about how well he was doing. They would close Courtney up and take her and I back to the Labor and Delivery room where Courtney would sleep off her epidural, and I would wait for word from the NICU.

After an hour I called up to the NICU to learn that Baby Michael was doing very well and that there was some paperwork that needed to be signed. In fact part of it was “He has quite the personality already. He’s up here screaming away.”  Michael Jr would be ready for his us after a UVC was placed in his umbilical chord/belly button. By the time the paperwork was done and Baby Michael was ready, Courtney had woken up and was ready to see her son. Together, along with both Grandma’s, Courtney and I would take the greatest walk together as they went to meet their son.

Baby Michael was now in a CPAP mask to help assist him with his breathing and he was hooked up to many wires and machines. This made Courtney and I a bit nervous in terms of touching our son at first. In time though, those wires and machines would truly become normal to us, and working around them would be second nature.

The Longest Day of Our Lives

Posted: 16th April 2012 by babymichaelsstory in Posts
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Baby Michael’s first appointment with Dr. Jane Corteville, Maternal Fetal Director, MacDonald Imaging Center, UH Case Medical Center was the longest, most draining day of our lives without question. The comprehensive ultrasound determined that Michael Jr. had Dandy-Walker Malformation as well as Partial Lissencephaly. The doppler’s had shown poor blood and oxygen circulation to the baby as well as a thin placenta and low amniotic fluid. His heart, kidneys, and liver were all also enlarged.

To determine the cause of the dramatic change, considering prior evals and ultrasounds showed the baby developing as normal,  an amniocentesis was performed. We were sent downtown to UH Hospital where we would spend another 8 hours performing the amniocentesis and waiting for Courtney to be observed to ensure she was not sent into labor from the amnio. Our day had begun at 9 am for the first appointment, we were blasted with the news that Baby Michael’s brain malformations were worse than originally thought, and that he had organ problems as well. By the time the day ended, it was literally 1130 pm and we still had a hour and a half drive home.

Honest to God I have no idea how we made it through this day. Prior to the appointment there was some lingering hope that the last ultra sound was just skewed. That, the angle was bad or the technician just didn’t know what she was doing. This was the tiny ray of hope that we held on to in order to make it through the maternity photo shoot and baby shower. Unfortunately, that last bit of hope was not only taken from us, but thrown from a thousand foot cliff. In our minds, Dandy-Walker Malformation was our worst case scenario. Well, this not only came to fruition, but we were also told that the Dandy-Walker Malformation was not the concerning part of what they had seen. Michael Jr. was also showing partial lissencephaly which is MUCH worse. The whole time it felt as though the doctors wanted to talk about “future children.” If it was chromosomes that caused this than you shouldn’t have another child. If it is viral, than you can certainly try to have another. The whole time Courtney and I just kept looking at each other almost as to scream “WHAT ABOUT THIS CHILD? WHAT ABOUT BABY MICHAEL ANTHONY SANTON JR?”  They made it awfully clear that they did not have high hopes for Baby Michael’s well being.

To ice the cake that was this day, we were sent Downtown to get the amniocentesis done. We sat in the waiting room for three hours. Nothing better than getting this horrible news, and than having to sit in a waiting room with a bunch of people happy with their new baby ultra sound pictures and what not. Once the amnio was complete we went upstairs to the labor and delivery triage where they would stick us in a room and leave us sit there for 4 hours giving little to no word on what the heck was going on. Looking back on this day, I can’t even believe that we are not in a prison somewhere for going on some mass killing spree from the amount of stress we faced. But we knew, that together, Courtney and I could not only face these issues but come out on top of them.

After lots of research, we believed that what caused all of these problems was Cytomegalovirus. All of the doctors that we saw kept trying to tell us that they actually believed that it was something chromosomal that caused the problems.

The results showed that it was indeed Cytomegalovirus. Courtney had contracted the CMV while coming into contact with children’s saliva, while working as a Dental Assistant. This was what had her so sick back in Novemeber!

The next battle was to find out what would be best for Michael’s care, now that we knew what the problem was. After lots of research and some discussion with the doctors, we decided that it would be best to have Courtney induced so that the hospital could begin treating Baby Michael before further damage was done.

But of course, some of the doctors did not feel that this was our best course of action and fought against inducing her. Within a week, Baby Michael started showing the early signs of Cardiac arrest and she had to be induced as we originally had said.