1 month post Glenn

Wow has time flown. Yesterday marked 1 month since Eli had his second open heart surgery. He is continuing to do great and amazes us everyday.

 He had a wonderful Thanksgiving and we enjoyed spending the day with my family. He was kinda cranky that day, a wonderful mix of stomach problems and teething. Poor kid cried a whole lot more than normal, he was probably overwhelmed with all the Fitzgerald family. Oh well, he has to get used to it someday :).

 Eli received his first Synagist shot on November 18th. This shot is to help protect him against RSV (link for more info) and he will get it once a month for 5 months. The RSV months are from November until March. Typical healthy babies don't get this shot only high risk and cardiac babies. It would just be a horrible cold for most people, to Eli it's life threatening. In fact it is so important for these cardiac babies to get them, insurance HAS to cover them. These shots cost over $1,000 a piece but  it's cheaper for insurance to cover them than to pay for a hospital stay if one of these babies get sick.

My big boy!

 In two days Eli goes for his 4 month check up, never mind the fact that he is almost 6 months. His checkup was delayed because the pediatrician didn't want to do immunizations before surgery and the surgeons don't want immunizations for 30 days post op. So on Wednesday we will find out where Eli places in height and weight for his age and he will get some more shots. Hopefully he has caught up a tad bit.

Friday December 2nd we go back to see Dr. Husayni the pediatric cardiologist so they can check up on his heart. He will hopefully also get a visit from his speech and physical therapist. We are having some problems getting Eli to take a bottle all of the sudden. I suspect he discovered how nasty his high calorie formula really tastes. That stuff is like drinking glue, gross!! He also doesn't have full neck control and I will take most of the blame for that. I hate hearing him cry while doing tummy time. I can't imagine putting pressure on my breastbone after having open heart surgery.

Eli met Santa yesterday and he loved it! Bass Pro Shop in Bolingbrook has a wonderful set up of winter wonderland and you get a free picture with Santa. I'm not ready to share the picture yet because it may be one I use on our Christmas cards. He didn't cry or get scared (he may be too young) and just looked at Santa and his wonderful white beard. I can't believe that in less than 2 weeks my baby will already be 6 months old!!!

The Glenn

Early Thursday morning on October 27th we headed to Hope Children's Hospital. We were to be there by 5:30am for a 7:30am surgery. Rafe, Eli and I all checked in and went to day surgery holding room where the nurse checked all of Eli's vitals. The surgery nurse, the ENT and the anesthesiologist all came in to do pre-surgery reviews and ask us if we had any questions.

  Well 7:30 came and went, around 8 we finally got word that they had an emergency and wouldn't get to Eli until 9 or 9:30.  Around 9:40 we found out that the emergency surgery was taking a little longer than expected. The surgery nurse finally came for him around 11:15am and gave us about two minutes to say good luck and send Eli on his way. We were promised updates every hour and a half to two hours.
 
   The surgery went smoothly and he was only gone from us for about 4 hours. We got to see him around 3:30 and in my opinion he looked great. He looked like a puffy and very pink version of the Eli I know. He had this line across his torso where you could see the increase in blood flow. They called it the "Glenn Line"  ------>
and it was gone the next day. He had no breathing tube when we got to see him just a little oxygen running into his nose. He was pretty fussy and seemed to be in some pain. They say that most babies come out of this surgery like that, the increased blood flow can cause them to have headaches and possibly even high blood pressure. He was well taken care of in the pain relief department and by the next day was doing great.

  When Rafe and I got to him on Friday morning he was awake and seemed pretty comfortable. He got to begin eating his normal formula around lunch time and I'm sure that made him happy. Dr. VanBurgen who I must say is amazing, kept a very close eye on him throughout his stay in the PSHU. Eli did test positive for MSSA so he had to have this medicated ointment rubbed inside his nose to "decolonize" the infection. It wasn't a big deal they just wanted to be careful since he just had surgery. That meant we had to wear these yellow gowns and gloves anytime we or anyone else was in the room. By the last day I gave up and stopped wearing the stuff. It's not like we would be wearing it at home with him.

  Five days post surgery we got to bring Eli home. He got a few new medicines and got to drop a few also. There was no oxygen required and not too horrible of restrictions either. We can lift him from his armpits for 6 weeks and we need to avoid large crowds for a month so his immune system can build itself up again. He has been doing great and I've only had to give him tylenol once. His throat is still a little rough from having the breathing tube down it during surgery so we're hoping that clears up soon. We don't want any throat problems again!

 So hopefully that is our last hospital visit until his third surgery at about 18-24 months old. He is our little trooper and we are so proud of him!

When should I start stressing?

Thursdays surgery is fast approaching and I think my brain is slowly starting to react. I keep getting asked "how are you feeling, no really how ARE you feeling?" or "Are you stressing out yet?". The answers to these questions are fairly simple, I feel very optimistic and I'm not stressed out, yet! I don't want to go in with my head held too high and act like Eli is untouchable. I know that at any second horrible things could happen and life changes in an instant. With that said I refuse to be pessimistic about it either. I trust these doctors and surgeons and have great respect for the work they do.

Rafe and I were talking  and the way we describe Dr. Ilbawi (Eli's heart surgeon) is, he is nothing short of a miracle worker. Obviously he can't save everyone and somethings are beyond his control, but he will never turn a child away. He wants to give all of these babies a shot at life. He gives everyone hope and you just know he will try his absolute hardest to find a fix for these little hearts. I look forward to seeing him this week after Eli's surgery, I may even work up the nerve to give him a great big hug!

Monday, Eli has a 2-3 hour pre-operative physical, should be a ball of fun. They will do blood work and an xray among other tests to make sure Eli is cleared to go for surgery. Dr. Marra the ENT cleared him for surgery last week and said that his vocal cords and throat were good to go. He doesn't want Eli to be intubated for longer than necessary because we don't want to go back to that "scary place" of noisy and labored breathing.

We should be getting a call Wednesday evening to tell us when to get to the hospital for surgery. We are figuring Thursday at 5:30am is when they will want us there since surgery is at 7:30am. Nurse Katie said to plan on a 5 hour surgery, some of that being time to clear out scar tissue, being put on and taken off of the heart lung machine, and about 45 minutes of them watching Eli post surgery to ensure everything is working properly. I may post another blog before then, when I start to freak out :)

We ask that you keep us in your prayers, thoughts and well wishes. Our whole family is grateful for everyone who has kept up with Eli and sent positive feelings his way. Please pray for his surgeons, doctors, and nurses as well! Thank you and Eli sends big kisses your way as well as big smiles!

4 Months Old

As I sit next to my happy smiling baby, it amazes me that 4 months have already passed. Sometimes I feel like there's no way its only been 4 months. We are now awaiting Thursday October 27th, the day of his next open heart surgery. I am so hopeful in all the great improvements we should see after this, but I am not looking forward to seeing Eli all hooked up and sedated. It will be another month where he isn't able to be picked up from the armpits or be able to do tummy time (which he hates).  I would say he is about 90% with the neck control and he is developing right on target. He has such a great personality and loves to smile for almost everybody. 


This next surgery is called the Glenn. What is the Glenn procedure?
The Glenn procedure, the way it is currently performed involves hooking up the superior vena cava to the right pulmonary artery and detaching it from the right atrium. The bi-directional Glenn Shunt is a direct connection between the superior vena cava and the pulmonary artery, diverting half of the "blue" blood directly to the lungs without the assistance of the ventricle. It is usually performed between three and eight months of age, when the lungs mature to the point that blood flows more easily through, and ventricular force is no longer necessary. It is used as a procedure when there is only one good ventricle and more blood flow to the lungs is needed. ( I cut and pasted this). 


A few days before the surgery Eli will have to go in for a pre-operative check up to make sure he is healthy enough to undergo surgery. I have been very good about keeping him away from sick people and being very selective about the places we go. I was informed that right before he has the procedure, Dr. Marra the ENT who took care of him previously will do a broncoscopy to make sure his pipes are good to go. Never mind the fact that Eli was just intubated in order to do the cardiac cath lab. This will happen in the operating room minutes before the open heart surgery begins. I am sure everything will check out fine because he has been doing so well since his last hospital visit. 


Once again my parents will be with us for the surgery, they are a great support team. His hospital stay is expected to be 4-6 days. We may never get a chance to make it into the Ronald Mc Donald house since they usually have a waiting list. I am curious to know what his restrictions will be after this next surgery and how his medications may change. We have a clinic visit this Friday so I may ask and see if they can fill us in a little. He also hasn't seen the therapists in about a month so I'm sure they will be quite impressed with his improvements. Physical therapy always loves to play/test him. We'll see what they say!!!

On a totally different topic, I have been getting very annoyed with complete strangers! People always want to come up to us and ask us how old he is, but first they start with "ohhh he's so tiny". When I tell them how old he is most either say "wow, he's small for his age" or give us a look like Eli is deformed or something. He is small because of his heart problems, and if we tell people that they still look at us all confused. I know most people can't comprehend such a small baby having heart problems. It's all about how you approach us, I get sick of hearing how small he is everyday. I am lucky he is alive, I don't care if he never grows another inch, he's alive!!! If these strangers knew what this "tiny" little guy has gone through in just 4 months, maybe they wouldn't be giving us the stink face. That's my rant!  

15 weeks

Last Monday Eli had his mickey button put in. My mom went with me since Rafe had to work and it went smoothly. I admit I left the room when they did it, I don't stomach some things so well. My mom stayed in the room with him and he only cried for a few minutes. It was probably more of being held down then the tube being taken out of his stomach and a little balloon type thing being put in. A few minutes later he was calm and smiling again, what a trooper!

I am not sure if I like the button yet or would just prefer him having the tube. Bath time is easier but feeding time in the middle of the night is not. He has this approx 8 inch tube that connects to the button; with a 360 degree turn it locks in. Then I connect his long tube that connects to the feeding bag to it. He has made great improvements on his bottle feeding now. He has done 50ml a few times now, his feedings are 70ml in total. After the Glen (heart surgery #2) his bottle feeding should improve greatly!

Friday the 30th Eli is scheduled for his cardiac cath lab at 6:30am. I asked what the purpose of it was since he frequently has echo cardiograms done. Dr. Husayni said it is to accurately measure the pressures in his heart to find out when to schedule the next surgery. For some reason I am kinda scared for Friday, maybe its because I know he will be sedated or that they are physically going into his heart.

Eli is making such great improvements I couldn't be prouder. He is 9.5lbs and 21.5inches long now. He was 6lbs and 19 inches at birth. His neck control is a work in progress but I would say he is 80% there. He hates tummy time, I don't blame him I hate laying on my stomach too! A few days ago he even laughed for the first time, it was adorable! I will be sure to update after the cardiac cath lab.

The calm before the storm

Thursday night was the first time we had Eli sleep in his crib. Since coming home August 1st he has slept next to me every single night. We spent a month in the living room and have finally made it upstairs to our bedroom. I know "co-sleeping" is scary to a lot of people and I was always against it, until I had Eli. To me it was more scary to have him in another room where I can't hear him or see him. It wasn't a risk I was willing to take until I got him on a nice sleep pattern and got used to his sleep behavior. Besides, who doesn't enjoy getting slapped in the head at 3am by a little baby hand?

Well Thursday night around 11pm I brought Eli up to his room and placed him in his crib to begin his 11pm feeding. (Please don't think he is awake until 11pm every night..) He was a little freaked out and whimpered for a little bit. If he would have gone into full screaming and crying, crib time would have been over promptly.  Due to his cardiac problems and the shunt he currently has in his heart, we are not to let him cry for more than 5 minutes. It is too stressful on his heart and can cause a lot of damage, another reason he was sleeping next to me. Well after about 10 minutes of whimpering he fell asleep and I waited for his feeding to finish. His feedings last 35 minutes and then the food pump beeps loudly and I then flush his G-tube with water.  After that I went to bed and tossed and turned for about an hour. I was nervous and trying to concentrate on if I could hear any noises in his room or not. Rafe had fallen asleep on the couch so I left him to snooze for awhile.

At 2 am Rafe came in the room carrying Eli and his food pump pole. I was worried that Eli had been crying and I slept right through it. Come to find out, Rafe had stopped in Eli's room on his way to ours and felt bad for the baby as he was sound asleep in his crib. I mentioned this to Rafe last night and the truth came out.

We both have been feeling the same thing but haven't talked about it, we are very worried for this next surgery. We are scared to see our little baby all hooked up to tubes and IV's and not being able to hold him when he wants to be held. We will be on restrictions as far as holding and tummy time goes and it's like starting back at square one as far as recovery. His chest will be cut open again and that scares the daylights out of me. We have seen such great improvements and I don't want anymore delays.

 We have had a pretty normal life for the past month and a half and it's been great. When I say normal, it's normal for us. We have had plenty of people ask us how we do it and they couldn't imagine going through our daily routine for Eli. It's a part of our life and we are happy to do whatever it takes for him.

So I think at this point we may just keep him sleeping on the bed with us until after next surgery. We want to take full advantage of cuddle time and waking up next to our little man. Anything can happen and we don't want to miss out on this time.

Monday September 19th Eli has an early morning appointment to get his G-tube removed and a "mickey button" put in. If you can imagine, it will just be like a little port we plug this small feeding tube into and then remove it after each feeding (the tube not the port). The "ballon" on the bottom is what is actually inside his stomach.------>

He is also scheduled for cardiac cath lab on Sept 30th at 6:30 am. They have never really told me why this is necessary but I know they mentioned it as standard procedure when we signed the release for the Norwood procedure. Dr. Husayni said typically two weeks after cardiac cath lab, they schedule the next open heart surgery for. This surgery will be called the Glenn. We will get more into that soon!

3 week stay

The next three weeks were very hard on me. I didn't feel prepared like I had for his first hospital stay, after all I had 17 weeks to mentally prep for it. This time it caught me off guard.

 I knew he was breathing loudly and with a little more effort than normal, but he didn't seem in distress. I was looking for answers as to why he was so loud and didn't like the answer I got. Paralyzed vocal cords??? How and what caused it? They just kept telling me if it doesn't clear up, if he can't breath, if he was to get sick it would be devastating. Ok first off, let's not use that word when talking about my son and his possible outcome.

 Dr. Polavarapu was one doctor you could love to hate, he was brutally honest. While I respect honesty let's not jump to worst case scenario with such a hard blow to my mental and emotional capabilities. He did rounds and asked if the doctors had said anything, knowing they did, I said no. I wanted to play dumb and see if I would get a different story from Dr. P. He looked at me strangely and then moved on to another room. Within ten minutes he was back in the room and had closed the door behind him. Here was when my mental status changed  for the next week. He really was pushing the trach on us hard telling us it would be the best thing for Eli. I wasn't convinced, I wanted more testing, prove to me that my son needs one. When you tell me that this thing is going to be semi permanent and you won't re-evaluate his cords for a few YEARS, you want me to take this lightly and agree right away. I'm more stubborn than you can imagine and this doctor wasn't going to trick me into it. 

I am going to be honest and say this caused a major disagreement between Rafe and I. He wanted us to do whatever was the best for Eli and to just get it over with it if it needed to be done. I don't think he was understanding that the trach was a major life adjustment even more so than just Eli's cardiac issues. Besides that it would cause delays for Eli. I was scared that I would never hear him talk and he wouldn't ever be able to eat like a normal person. (When I met with the ENT he said both of those things would be possible just with a little more training than normal.) I wanted a second opinion and told many doctors and residents I was not agreeing to anything without further testing. If I wanted another ENT doctor to look at him I was more than welcome to transfer to another hospital (uh, excuse me?). Fine then I will demand his original doctor to do more testing. Dr. Marra wanted to do a broncoscopy  and was amazed to find out his cords were not paralyzed just irritated, possibly from the NG tube and acid reflux. He wanted the NG tube out asap and a stomach (G) tube put in. 

Four days later Eli went in for his second surgery in his short little life. He had his G tube placed and had a Nissin procedure done. The nissin is where they take a part of the stomach and wrap it around the bottom of the esophagus to prevent acid from going back up. The surgery went well and he was on the road to recovery. When he was wheeled back to his room from surgery there were about 10 people in his room getting him all situated. Two nurses were arguing with the anesthesiologist and were making me very nervous. The nurse was saying Eli was not responding to the light in his eyes and kept repeating that, even though the anesthesiologist said that was to be expected due to the drugs they had used to sedate him. Hearing your son is not responsive is scary! I immediately got sick to my stomach and had to walk out of the room.  A few minutes passed and they said everything was fine and he should be awake in about an hour. Deep breath and release, thank God! We were warned by the ENT that if the noise continued a tracheotomy was still possible in the future. I am happy to say the noise stopped, who knows why but it stopped! 

The next week was pretty uneventful. I'm not really sure why it took us another week to get released but it did. We have been home now for almost a month and things have been going wonderfully. Eli is slowly gaining weight. He is reaching his milestones though so that's important. He started smiling about a week and a half ago and is starting with the baby noises. Yesterday he completely came off of oxygen and his numbers are looking great. I am happy to say that Rafe realized my stubbornness paid off for once in my life. We avoided the trach because I demanded more testing and I stood my ground. I've learned I need to really stand up for Eli and be his voice. Doctors sometimes take advantage of people who don't stand up for their loved ones. I have even had a doctor or two admit that. Not advantage as in they are gonna do every test in the book to run up medical bills, but they just jump to the problem solver without finding the source of the problem. Trust me I love doctors and respect their work but sometimes it pays off to give them a run for their money. 

After the Norwood

Picking up where I left off the other day, Eli has now successfully completed the Norwood procedure.

 We were told the surgery would take anywhere from 8 to 10 hours, depending on how well Eli comes off of the heart lung machine and the bleeding is controlled. His surgery only ended up being 6 hours long and he was back in his room at 1:30p.m. He was now in a special unit called the PSHU (pediatric surgical heart unit). When we (Rafe, my mom and myself) had toured the PSHU previously it seemed a lot more intimidating, this time it seemed welcoming. The nurse told me it would be a few minutes to get Eli all settled in and then I could get in to see him, with many warnings that he had a lot of machinery and tubes attached. I quickly ran to the bathroom and when I got back to the waiting room, Dr. Ilbawi (the heart surgeon) was waiting in the hall to talk to me. I feared the worst, did something happen to go wrong that fast? Thankfully he just wanted to tell me personally  how wonderful Eli had done during surgery and assured me things were going as planned. I smiled and wanted to give that man the biggest hug I could give a person, after all he had just saved my son's life. How could I ever re-pay this man, this miracle worker?

A few minutes later I was allowed to go see Eli, despite everything attached to him, he looked great! The nurses explained everything to me, all of his medicines, his tubes, and the plans for care. Talk about some of the best nurses in the world!

The next morning I got a phone call that they were going to do a bedside procedure to close his breast bone. Typically they wait 3-4 days to do it to allow for swelling to go down but since Eli had little swelling they went ahead and did it the day after surgery.  When a bedside procedure is done, they lock down the whole unit (9 beds), no visitors in or out until everything is finished. Eli was the first procedure for the day and they had 4 that day so I didn't get in to see him until mid-afternoon. During the next few days in the PSHU the nurses and doctors just kept saying "he's following the rule book on recovery". He was their star patient and he was doing everything right.

 Every night when Rafe would get out of work we would head back up to see Eli and check in with the night nurse. We would see Dr. Ilbawi walking the halls every night checking in on his little patients and talking with the parents. It was so comforting to see, this is a doctor who really cares about his babies and was totally approachable if you had questions or concerns. He stopped in one night just to tell us our son is beautiful and such a trooper.

During this time we were staying at the Ronald McDonald house right across the street from the hospital. That place was a lifesaver, we could be with Eli any time of the day or night and only have to walk back home. It was also nice for me because I got to talk to other mommies and hear their stories. I will be honest  and say I was happy to have someone who could relate.

The day before he was discharged, I had a horrible breakdown. Reality set in that I was soon going to be in charge of my baby and have to make sure he is fed and medicated on a tight schedule. It was one doctor after another that day to go over discharge information and all of the do's and don'ts  for his care. Talk about information overload, I ended  up crying for about 30 minutes. One surgery assistant even had the nerve to tell me in a snotty tone, that "if I wasn't ready to be a mother, we can keep Eli longer".....really chicky, you better watch yourself! I also had to learn how to put in a NG tube, which hurt me more than Eli I think. I'm convinced this boy will hate me when he's older!

My list of do's and don'ts : Do make sure you wake up every 3 hours to feed him, Don't let him cry for more than 5 minutes, his heart can't handle it (easier said than done). Don't forget his 8 meds a day, two of them being twice a day. Don't pick him up from his armpits (it will hurt his chest). Don't put lotion, alcohol, or hydrogen peroxide on his scar.  Do take his blood oxygen saturation daily (annoying stupid machine). Don't let his oxygen tank run out. Don't pull his NG tube out. I'm sure there is more that I can't remember at the moment, I have a routine down already. And you understand why I was overwhelmed right?

I was so proud of my little man, he got discharged 12 days after having open heart surgery! It was wonderful having him home with us finally, he got to be ours! Two days later, the noise started. He had developed this loud breathing out of nowhere, he sometimes sounded like he was snoring and other times he sounded like a guinea pig. Whatever the noise was, it was constant. We told the doctor and he thought it had to do with how Eli was positioned. When Eli still had the noise at next weeks appointment Dr. Husayni got worried. Dr. Husayni is the pediatric cardiologist who is monitoring Eli until the second surgery. We meet with Dr. Husayni every friday for the "Norwood Clinic".

Tuesday July 12th I got a phone call from Dr. Husayni who wanted us to see an ENT (ear, nose and throat) doctor, Dr. Marra. We set up an appointment for that same day, and we were told Eli had paralyzed vocal chords. If this didn't clear up in a few weeks, we would have to do a tracheotomy. Let me tell you how frightening that thought was! It seemed so extreme for such a small baby (like heart surgery wasn't). The next morning Dr. Husayni's resident called to say Eli had to be re-admitted to the hospital for testing, they wanted to figure out what was going on with his chords.

So we waited until the hospital called us to say there was room ready. We then headed up to the hospital for what would be a whirlwind of a 3 week stay.....

First time for everything

Well my mom has been pressuring me to "journal" what goes on in my life involving Eli. I don't know how good I will be at this so I will give it a shot and see how it goes. I guess we'll start from the beginning.

Monday Feburary 7th., 2011. The day I had been looking forward to for about 4 weeks. We were on our way to finding out the sex of our baby. I scheduled the earliest possible appointment because I just knew I couldn't sit around all day waiting anxiously. I laid down on the table, convinced I was having a girl, not knowing the next few minutes would change my life forever.

 Within a few seconds of the ultrasound tech scanning my belly, I knew what I saw was little boy parts. I gasped and instantly freaked out (all fairly quietly) I was wrong! For some odd reason, I had been scared to have a boy but now having to embrace it. Ok fine, a boy it is. I could get used to it, after all I do have a brother and my husband has 4 brothers. The tech finishes up and gives us a bunch of fun pictures and tells us to wait for the doctor so he can do his own scan and talk to us. This is where our lives changed forever....

Doctor did his scan quietly, paying extra close attention to baby boys chest area. He said he believed the baby had some sort of heart deformity and wanted us to see a pediactric cardiologist ASAP. He warned us that often times babies with heart problems are also born with Down Syndrome or other types of problems. He must have mentioned DS about 4 times in a matter of minutes, adding even more panic to my already shocked brain. Oh man, what an overload this appointment was turning out to be, geez I only wanted to know the babies sex! Well they were so serious about seeing the ped. cardio. that they called and scheduled the appointment before I even left the ultrasound room. I was to be there the next day at noon. We were sent on our way to share the good news that we were having a boy. I got home and Rafe went off to work, I must have sat in silence for about an hour just going through everything in my head. What would our lives turn out to be, where do we go from here, are we excited and sad all at the same time???

Noon the next day, Dr. Gulecyuz (gul-uch-es) confirms baby boy has a heart problem. At this time he couldn't pinpoint it because baby was moving so much. He said it was a possibilty of a few different things, coarctation of the aorta, hypoplastic left heart syndrome (HLHS), ventricular septal defect (VSD). He drew my mom and I wonderful pictures and left us with a good outlook. He is a wonderful doctor and helped ease our minds and hearts. He would continue to monitor the baby every 2 to 4 weeks in hopes that the left ventrical would catch up to the right.

Tuesday June 7, 2011... My 3rd wedding anniversary and a busy day with doctors appointments. My mom and I started the morning out with my last appointment with Dr.G since he would be out of town until the day after my expected due date of June 27th. He confirmed that the left side had not caught up with the right side but at least had continued to keep up at half the size. We were already aware that baby would be having heart surgery after birth, we just weren't sure which one. Dr. Ilbawi the heart surgeon's team would be making that decision after baby is born. Before I left Dr. G's office he told me he was convinced I would go into labor while he was gone on a vacation and he really wanted me to be late on delivering. I told him not to jinx me because I wanted him to be part of the decision making on babies surgery.

Thursday June 9, 2011... Rafe had just left for work when I suddenly had to the urge to go pee, except when I stood up I realized that urge was not from my bladder. I would have to say that was one of the scariest moments of my life. Sorry for the horrible details coming but blood was dripping down my leg, had soaked my underwear and was all over the floor. I was sure I had miscarried and was heart broken as I am crying hysterically while sitting on the toilet watching the water turn red. I had to stop and control my crying so I could scream for my brother to help me, he thankfully fell asleep in the living room so was able to hear me. I then realized I felt the baby move and got a quick sense of relief, baby was still alive. I called Rafe really fast and told him head straight for the hospital, my mom and I would be there shortly. I then called my mom hysterically crying and told her to get to my house fast, I was bleeding. I then called my ob/gyn who I had forgotten was also out of town then. Fantastic!!! I finally got through to his back-up who would meet us at Hinsdale Hospital. David was there to keep me calm, thank god for that. We got to the hospital within 30 minutes, during rush hour traffic and a horrible thunderstorm. I then walked from the ER up to Labor and Delievery, uh why are you letting a pregnant woman walk after I tell them I am bleeding!
  A few tests and exams later, we find out my placenta has torn and baby needs to come out. They wanted to schedule it for 7pm, the ob said no way this baby has heart problems, he needs out now! I panicked again because I went from having a few hours to think about it to having about 10 minutes. I was surprisingly calm as they wheeled me down the hall to the operating room, I was sure things would go smoothly. The spinal was not pleasant but being numb was great, then I hear "incision is made". Uh where is my husband??? Did they forget I was married and wanted him in there? Thankfully he was in there within a minute and our beautiful son Eli Randall was born two minutes later at 4:19pm. He let out a wonderfully loud cry and I was in tears, happy tears of course. The baby I had always dreamed about was finally here and he was all mine, and god was he gorgeous. A quick kiss and he was off to the NICU to be put on oxygen and have his echocardiogram done.

The next few hours were a blur as I was high as a kite on morphine. All I know my face itched like crazy and my family was standing around me laughing at me. We got word that Eli would need to transported that night to Hope Childrens Hospital, about 25 minutes away from the hospital I would have to be at for the next few days as I recovered. The cardiologist (someone I had never met) also broke the news that Eli did in fact have hypo-plastic left heart syndrome (HLHS) and would need to have the norwood procedure done within a week of birth. My heart sunk, but I was willing to do whatever it took to save my son. An hour later I had to say goodbye to Eli for a few days until I got out of the hospital, the longest 3 days of my life. I cried myself to sleep every night because I so desperately wanted to be there for and with my little guy.

I finally got to him on Sunday the 12th. I was so happy to see him and yet scared to walk into his room at the same time. No one wants to see their loved one all hooked up to monitors and sedated, and this was my little baby. I kissed him everywhere I could reach, he was in this plastic square box/bed. He couldn't be moved since he was on the ventilator and they didn't want to hurt his throat. I spent hours just starring at him and loved every minute of it. I would continue to do this everyday until surgery day. I got to hold him for the first time on that Wednesday, I couldn't move him much but I at least got to feel him in my arms and against my body. It was great and would have to do for the time being. We also did a bedside baptism before his surgery to, the same priest who had married Rafe and I three years earlier agreed to come out and do that for Eli.

Thursday June 16th....The big day! Eli's surgery was scheduled for 7:30am. Rafe and I arrived at the hospital around 5am to spend as much time as possible with him before then. I probably cried for those two hours straight just worrying about all of the possibilities. Around 7:15 all of the sudden the room was filled with nurses, transport people, doctors , etc. The fear was setting in and I couldn't stop the tears from flowing. I held onto his hand until he was wheeled out of his room and followed very closely behind them as he was wheeled down the hall. They stopped and let Rafe and I kiss him before he was taken into surgery, talk about gut wrenching. We were told we would get updates every hour and a half to two hours, and they were very good about staying true to that. Every update was wonderful and eased us a little bit more. I was happy to have both of my parents there to comfort me, I must admit I was pretty horrible that day. I felt like I was the only one in the world going through such a horrible thing and no one understood. No one would get it as I sat there in tears, who is this girl and why is she so sad?  When we got the all clear, my world brightened up and the adrenaline wore off. My little Eli made it through the surgery wonderfully, my mind could now relax for the moment.

To be continued....(Eli is crying)