Noah is 3yrs old!!!

December 19th was Noah's 3rd birthday. Can you believe that my little beau is already 3? I swear, becoming a parent has made me truly recognize the value of time. When they say "time flies," they weren't kidding. It seems like yesterday, I was holding a colicky baby in the glider rocking back and forth, back and forth. Now he is this independent little guy who loves to help his baby brother and is truly a light in our house. You can't help but smile when Noah is around.

Noah has been such an amazing trooper through this last year. Despite all of the changes and the adjustments, Noah remains loving and happy. I marvel at his ability, at such a young age, to go with the flow and manage all of the changes to his life. He deserved a special day for his birthday. So... we went to Disneyland!

Although the trip didn't go quite as planning because of all of the rain, we still managed to have a great time. Elijah also really enjoyed the trip. I was fairly apprehensive taking him with us, but he did great! It was normal. It was a normal family trip. It's what normal people, with normal babies do. It was awsome. 

Cardio Appt Today

Elijah had his cardiologist appointment today. The doctor was pleased with his weight gain and said that Elijah was actually in the 10th percentile for height, although he is well below the second percentile for weight. His lungs look better on the xray and we are going to try to scale back on his lasix dosage. Elijah is still showing narrowing in his arch and the blood is flowing the wrong direction through his PA. This can't be fixed until he has his cath and they address the collateral arteries.

All in all it was a good appointment. He was supposed to have a cath tomorrow, but he has been ill. Although he is doing really well and doesn't seem to have the cold anymore, the surgeon wants him to be symptom free for 2-3 weeks before doing the cath. They are looking to reschedule it for January. I'm a little apprehensive because with Noah around, I'm not sure if Elijah will be symptom free for that long and at the right time. It seems that we are constantly battling some little bug in our house. I guess that's what we get for having a preschooler in the house!

Thankful on Thanksgiving...

It's the night before Thanksgiving and I can't help but reflect on what I have to be thankful for. First and foremost I am thankful for my amazing husband. We have endured things I would not wish on my worst enemy and yet when I look at him, I still see the man I fell in love with. I still think of him as my partner, my lover, my friend.  I am thankful for my boys. The light they possess inside them is bright and shines freely. They too have been to hell and back and yet our house is filled with laughter and squeals. Looking at them, you would have no idea what they have seen and experienced.

I have to mention family when I contemplate my blessings. Both sides of the family have been amazing supports. We have had family members come to the hospital when Elijah has been admitted to keep us company. We have had family pay for Dion and I to get away for a few nights for some much needed sleep and time together. Family has come and watched the boys so that we could go on a date or attend a friend's babyshower. Family has committed to watching our fragile little guy every day for months in order to give us peace of mind and ensure our baby is safe. Family has watched Noah daily during hospitalizations and dealt with all of his emotions and fears. Family has stuck with us through this all and been there to stand tall when we were falling, there to hear us as we talked about our frustrations and struggles, there to wipe the tears away or just say that they understood.

Our friends have also been by our side through all of this. They have brought us meals, sat with us, and held our hands as they took our little guy back for yet another surgery. They call to check in and try to find ways to help.  Our friends have spent hours just sitting and waiting. Sitting and waiting.  They have become family.

There are two organizations that I must also mention. Sisters by Heart is a group that was formed to support newly diagnosed families. They are an amazing group of women that were there for me. They answered questions and guided me in the right direction. They are a great source of information and comfort.

Children's Hospital... they saved my child's life. Do I really need to say anything else? Their amazing doctors and nurses saved my child's life. While they saved his life, they saved our sanity. They are perhaps the most empathetic and kind people I have ever met.  I will forever be indebted to them.

Dr. Sklansky is our little guy's cardiologist. I have no words to describe this man. I have never met a doctor who would call on the weekend to check on a patient or call me after a doctor's appointment I was unable to attend to explain what happened and answer any of my questions. I can email him day or night and he will get back to me. He continues to fight for Elijah and I am forever grateful. He is assisted by a nurse named Ashley.  She gave me her cell number to call or text any time. When Elijah was in the very fragile stage between his first and second surgery, we were in contact daily. She was patient and kind.  She kept me sane. She kept me moving forward in a time when I just wanted to quit. If she didn't have the answers, she found them.

All of this to say that we are blessed. Incredibly blessed.

13lbs 4oz!!!!

That's right folks! I'm now doing my happy dance! After a full month of absolutely no weight gain, our little guy is finally putting on some weight! I'm hoping this is enough to convince his cardiologist that he doesn't need a g-tube.

12lbs 6 oz and 7.5 Months Old

Elijah had his cardiologist appointment this last Tuesday. He has not gained even once ounce since last month. This is beyond frustrating. His doctor brought up the idea of a G-tube, but said that we still had a little time to work with Elijah before we would have to take action. After talking with the dieticians at UCLA, we are now adding oil to Elijah's bottles and fortifying with extra formula at night. He is also eating baby food now. It's frustrating because he eats what a typical 7 month old would eat. But he doesn't gain any weight. His body works so hard that he just burns everything we put into him. He can't eat more because his body can't handle more.

We had to cancel his cath that was scheduled for next week because he has come down with a cold. So far he has handled the cold well, and is one happy baby. The doctor also said that he isn't getting any blood flow through the PA that has the stent and that he still has decreased heart function (it isn't beating as it should). But he was happy to report that it hasn't gotten any worse. As of now, Elijah will have to go in for another cath at the end of this month and hopefully they will be able to address some of these issues at that time.

On another note, the boys had a good Halloween. Noah had a fabulous time trick-or-treating, but the baby was asleep and unable to join us. I added some pictures to commemorate the evening!

Small Update...

Elijah is scheduled to have his next cath November 6th. He has been doing well. Although he is still only 12lbs, he is one happy camper. He still doesn't sleep through the night. I think Dion and I have just resigned ourselves to the fact that it is going to be a long time before we get any real sleep. We have given him our bedroom. Dion sleeps on the couch and I had been sleeping on a small blow up mattress on the floor of our living room. I couldn't handle it anymore and now I am using the mother of all blow up mattresses, thanks to Tren. You would not believe this thing. It is incredible and it is huge!!! Blesses sleep here I come!

On another note, Noah brought home a cold and has infected all of us except Dion. Elijah was the only one that was throwing up. Noah has had cold symptoms and informed me that his nose was broken and he needs a new one.  If only it were that easy!

He's Home!

Our little guy was discharged on Friday night. Although his breathing is still labored, they thought he was stable enough to go home for the weekend. He has to go to the cardiologist tomorrow and the card will decide the next move. I have a gut feeling that we will be going back to CHLA soon for another cath. I sure hope I'm wrong.

Post Cath Admittance

Elijah had his cath on Tuesday. It didn't go quite as we had hoped. His cardiologist had been concerned about his arch, however, they found that the arch had a bit of narrowing but not enough to be worried about at this time. However, they did find that his left pulmonary artery was almost completely collapsed. The doctor said that this could be due to scar tissue or the patch that was done during his last surgery may have collapsed. She attempted to balloon the artery during the cath but it didn't quite work. She had to place a stent in the artery. The stent opened the artery nicely and reestablished the blood flow. The stent will have to be inflated as he grows. They also found that his body created extra blood vessels call collaterals in order to compensate for the lack of blood flow from the LPA. They tried to plug the collaterals but they were too small for the cath the doctor was using. The doctor is hoping that the vessels will regress now that they are no longer needed.

We were expecting that Elijah would need to spend the night at CHLA, but he has had to spend several nights. He was diagnosed with pulmonary edema caused by the extra blood flowing through the artery. The fluid in his lungs was making it very difficult for our little guy to breath. He was breathing, panting really, like he had just finished a race. But he never recovered. He just kept panting. Watching him breath like that was exhausting. I can't imagine how tired he must be. Because of his breathing, he was having a difficult time eating. He had to take countless breaks while eating and would only eat an ounce or two.

The cardiologist today said that his lungs looked much better on this morning's xray. Dion is there with Elijah tonight and he said that Elijah had a good bottle and only needed three breaks. I am hoping that he continues to improve and gets to come home tomorrow. The cardiologist said that while they may resolve the extreme breathing issues he has had over the last several days, he isn't sure if they will have fixed the breathing issues Elijah was having before we came in. Only time will tell. If he continues to struggle at home, we will have to come back and they will try to figure out why he is working so hard to breath. The doctor who did the cath is hoping that as the collaterals fade, his breathing will improve. It seems that each of the doctors has a different viewpoint and opinion as to why Elijah is struggling like he is. I wish they would all agree.

Dr Appt Update

You know that you are desensitized when it doesn't panic you when your son's cardiologist tells you that he thinks that part of your son's lung has collapsed. That's right folks. Not so good news at the cardio appt Tuesday. Elijah's cardiologist is still concerned about his arch and the narrowing that the echo suggests.  Our little guy has decreased heart function, but before the cardiologist addresses the issue with medication, he wants to make sure the function isn't related to narrowing. He is also worried about the effort with which Elijah breaths. They did an xray and the cardiologist now believes that the hazy image is not fluid but perhaps part of his lung has collapsed. He thinks it is possible that the plication has come loose and caused the collapse. All of this to say that we are off to CHLA Cath Lab on Tuesday. He will be going in at 8am for a cath. If there is narrowing, they will hopefully be able to open in in the lab.

I know that this is not a major operation, but it still makes me nervous. They will have to put him under and intubate him. This procedure is what caused our three week hospital stay in July. The day he had his last cath is the day they had to call the code on him and we were rushed to the CTICU. I'm just not looking forward to Tuesday at all.

Prayer Please

Dr. Sklansky, Elijah's cardiologist called yesterday. He is concerned about Elijah's tests last week, specifically his x-ray. There was fluid on his lungs. He asked that Elijah come back in today and get an echo and another xray. Dr. Sklansky is worried about how hard Elijah is working to breath. Please keep him in your thoughts and prayers. I am hoping the fluid has improved over the last week.

Woot! Woot!

12 Pounds!!! That's right folks! Our little Elijah has doubled his birthweight! I know that he is small for a 6 month old, but I'm still excited (insert picture of me doing my happy dance!)!

On a totally different topic, I have to give major props to our cardiologist, Dr. Sklansky. He called us today, a Sunday, to check on our little guy. I have never met a doctor who would do something like that. We are truly blessed.

Triumphs and Challenges

Well, after a week of sleep training, we are actually getting a little sleep in the Coley household. The first few days were rough and full of tears but also full of sleep. The first night he cried for an hour. It was one of the most difficult things I have had to do. I had to keep reminding myself, and Dion reminded me, that we were doing this for him as well as for ourselves. He was so tired that he was grumpy and fussy all day and had dark bags under his eyes. He needed sleep as much as we did. After the hour of crying, he slept for five hours straight! Unreal! He woke up and we fed him and he fell back asleep for another 5 hours. Crazy! He took a 2.5hr nap the next day after only 10 minutes of crying. He has never in his entire life taken a nap that long. The week has continued to have some tears, but much more sleep. He gets up 1-2 times a night to eat. The last couple of nights he has woken up a few extra times because he rolls over in his sleep and can't figure out how to get back to his original position. I guess he is practicing his new skills in his sleep. He is so much happier and content during the day as well.  Overall, he is doing much better. We are still sleeping in the living room, while he sleeps in the bedroom to allow him to get optimal sleep. It's tough, but we are coping.

Elijah had his cardio appointment this week. I was hoping that this would be the last appointment for another 6 months. Instead, we have to go back in two weeks. We have never had to go to the cardiologist twice in one month. We have had to go to many different specialist, and at times had multiple appointments a week, but never an echo, x-ray, and cardio twice in one month. His cardiologist is concerned about narrowing in his aortic arch as well as wetness in his lungs. The cardiologist doesn't like how hard little Elijah breathes. There is also concern about his weight. There was talk of another cath. This was what resulted in our last 3 week stay at CHLA. Ugh. Dion took him to this appointment because I had already missed several days this school year to attend to Elijah's needs. I wish I had been there. I know that I wouldn't have done anything differently than Dion, but there is this incredibly feeling of helplessness and fear at not knowing everything. Being a working mom is hard, but being a working mom of a child who has special needs is almost impossible. There just aren't enough hours in the day to take care of everyone's needs.  I worry about everyone and yet I can't seem to make things better for anyone. At times I don't feel like I do a good job at home or at work. There just isn't enough of me to spread around. I am hoping as he grows older and stronger that this will get easier. At least that is my hope.

On an entirely different note, Noah had his first trip to Disneyland last weekend. It was bittersweet. His old babysitter took him and I was unable to be there. It was so hard for me to say he could go. I really wanted to be there for his first time but I couldn't say no just to have him sit at home with us all day. He had a wonderful and time and loved the trip. I added a picture of our big boy at Disney.

Will we ever sleep again?

I ask myself that question every day. This week was a rough one. Noah came home with a cold that quickly spread to Elijah, Monica, and me. Dion was able to escape it this time. Noah actually handled it pretty well and was his happy, go lucky self. Elijah was a train wreck. He stopped sleeping all together. His longest span of sleep this week was two hours that he slept after Dion gave him some medicine in the middle of the night. He basically cried and fussed around the clock all week. I don't think I have ever been so tired. I actually nodded off while coming home from work at a stop light. I am beyond exhausted.  I'm not sure how much longer we can go without sleep. We take turns getting up with him, but our sleep deficit is so severe that we never feel rested, even on our nights off.

I decided that we are going to start sleep training this weekend. Because Elijah has been in the hospital so much, he has absolutely no self soothing skills. He had just started to consolidate his sleep before he was hospitalized for the Glenn. It is impossible to sleep long periods when in the CTICU. While in the CTICU he was basically taught to wake up constantly (nurses and doctors coming in and out) and wait for someone to come and sooth him back to sleep. Wish us luck, we have our work cut out for us.

On the bright side, Elijah went to his pediatrician this week for the first time since he was two months old. It was a very long appointment but it felt good to go to the doctor and have typical baby stuff to talk about. He weighed in at 11lbs 15oz and was 28 inches long. He isn't even on the charts. Everything else looked good. He got his four month vaccines and will get his flu shot next week. He will have to go in again in six weeks to get another round of vaccines. The pediatrician decided to take him off of the Protonics and see how he does. If all goes well, hopefully we will be able to also go off the Ranididine in a month. He still takes Lasix twice a day. We started solids this week as well. We decided to start with avocado because it is so full of good fat. Elijah doesn't quite understand that he is suppose to swallow the food. He moves it around his mouth and then spits it all out. We just keep trying!

He saw a pediatric urologist also this week and things look good. We were given the option to get him circumcised later this year. It scares me to put him under again, but the doctor reassured us that it is a simply procedure that he has performed on heart babies many, many times. He suggested that if it is even something we are considering, that we should do it now and not when he is older. The recovery is pretty simple and straight forward when they are little. It is a much more involved process when they get older.

He as an appointment with his cardiologist next week and he will have an Xray, EKG,  and Echo performed. I'm actually a little nervous. If things go well, he could have a six month break between appointments. That would be incredible. It would be nice to have a break from doctors and hospitals for a bit.

Good News!!!

Never in my life did I think I would have conversations with my husband detailing the color, texture, and amount of poop in a diaper. Yes, this is my life. But I wouldn't change it! I now know more about formulas and baby poo than I ever thought I would know. But the good news is that our little guy is now pooping without blood. Even better news, his body is absorbing the new formula and he is gaining weight! That's right! His poor body just couldn't absorb any of the nutrients in the old formula because he couldn't break down the protein. The food was just going right through him. I weighed him tonight and he weighs 11lbs 8oz. He weighed 11lbs 1.5oz on Monday.

I tried changing his formula to the one suggested by CHLA, but it was impossible to get just one can. I had to buy it in bulk and it was incredibly expensive. Elijah is so picky about what he eats, and I was concerned that he would refuse the new formula. I did some research and saw that some people suggested Alimentum Ready to Feed as an alternative. It is suppose to taste a little better. Elijah seems to agree! He was really, really mad at first and let me know that he was not happy with the change. However, by the third bottle, he was taking the feeding like a champ. He is now eating more than ever and is super happy. He is sleeping between bottles at night and just seems much more content. We are still getting up with him three times a night, but he needs the extra bottles to gain weight and hopefully catch up. We are tired, but it is worth it. I just have to remind myself that this is only temporary and that we have the rest of our lives to sleep.

Noah is doing well. He is learning a great deal at his new preschool and even counted to ten the other day. He likes to help with his baby brother and has adjusted pretty well to having Elijah around. He is going through his terribly twos and drives us crazy sometimes, but he really is quite the trooper. I am excited for the long weekend and having some time to spend with Noah. It gets so busy during the week that we don't get a lot of one-on-one time. I try to sit and read with him and take some time to play or have a bath every day. It's those moments that get me through the tougher times.

Frustration and all that good stuff...

Although Elijah has been out of the hospital for a week now, he is still having bloody stools. So incredibly frustrating. The doctors don't know why he is bleeding but they suspect a protein allergy. If the bleeding continues, they want to change his formula. This creates several problems. He has already tried three of these "special" formulas and he refuses to eat all of them. He is finally, finally eating and gaining weight and we are scared that a switch in formula will cause him to stop eating and therefore not grow. You can only buy this formula through pharmacies (and a few online stores) and only in bulk. However, it will cost us close to $500 a month to feed him for a month. That is insane. Insane. I am trying to get a sample so that we can at least try it before we commit to a large order.

Even though Elijah is still having issues, he has been one happy little guy. He has rolled over and is trying to grab things. He likes to coo and is apparently teething. The drool and slobber just keep coming! He doesn't sleep well. It takes him a long time to go to sleep at night and he wakes up about three times to eat and poop. He also wakes up throughout the night for his pacifier. Dion and I trade nights and it is exhausting. Getting up for work the day after being up all night with Elijah is painful.

My dad and his wife visited for a week (although Monica is still here and we are sooooo grateful!). Although we weren't able to do much, between working and hospital stays, it was still very nice to have them here. Dion and I were able to get away for a bit. We went to Temecula to eat, wine taste :), and sleep. The sleeping was blissful. Noah loved having his grandpa and grandma in the house. It was actually a little sad yesterday when my dad left. Noah roamed the house saying, "I want my grandpa... I want my grandpa." The only thing that provided a distraction was Elijah. I put Elijah in a little entertainment center and Noah deemed it his job to take care of his brother. It was very sweet. Noah kept trying to wipe all of the drool off of Elijah's face and make sure that Elijah was playing with the different toys correctly. It melted my heart. I look forward to the days when the two boys can play together.

Discharged!

After two nights and three days, our little guy was discharged. The blood in his stool has all but disappeared. The doctors aren't sure why he had the bleeding in the first place. They suspect that he has a protein allergy, but if that were the case, the blood would not have just gone away. They attempted to give him different formulas, even though we were strongly against it, with no success. We don't think he has an allergy and it has taken us sooooo long to finally find a formula that he will drink and gain weight that changing formulas was not an option. He is finally thriving and growing like he should. From what I have read, if he had an allergy, he would be very unhappy and the bleeding would continue. All of his blood tests have come back negative. Basically, no one is sure why he had the blood, but everyone is grateful that it is gone.

Our fabulous Jackie came to the rescue this week and stayed with Elijah at the hospital during the day which allowed Dion and I to work (as most of you know, it was the first week of school).  My dad and his wife are back in town for a little while and it was a great homecoming for Elijah. Noah is thrilled to have grandma and grandpa back at the house and Elijah is a happy little guy. It is amazing how grateful I am for the simple things. Tonight we all sat at the table, Elijah in his bouncy chair and Noah in his booster seat, and had dinner together. Those are the moments that get me through the rougher times. The memories that we make together get us through the times that we have to spend apart.

The good, the bad, and the readmitted...

The good news is that our little Eli's heart is strong and doing well. He has been eating and gaining weight. We have been settling into a routine again and it has been really nice having our family back again. However, over the weekend, he started having blood in his stool. I contacted his cardiologist who was confident that the blood wasn't related to his heart. I figured that I would call his pediatrition on Monday and schedule an appointment for later in the week. I was wrong. This morning, as both Dion and I were getting ready for work, he had a diaper full of blood. I called the doctor right away and it was decided that we would go directly to the emergency room at Children's Hospital.

While in the emergency room, they ran a number of tests but were unable to tell us why he was bleeding. The only thing they have discovered so far is that his platelet count is low, but they don't know why. They decided to admit us yet again in order to do a more indepth work up. So here we sit again, full of unanswered questions. Tomorrow is the first day of school and both Dion and I are suppose to be at work. Juggling work and a sick child is incredibly difficult. I have no idea how to be at two places at one time. The guilt is overwhelming. I feel like my place is with my baby and yet I have obligations and committments I have to fulfill. I have students depending on me. Ugh. Sometimes life is just so hard.

Follow Up Appt at CHLA

Elijah had his appointment today at Children's Hospital. They did an x-ray to look at his lungs and they still look a little "wet" which means that we will continue the lasix three times a day. His incisions look good and are healing nicely. When we were discharged they were concerned that they may be a bit infected so he has been on antibiotics, but it has cleared up! What was really exciting was that he gained weight! He weighed 9lbs 9oz at discharge and today he weighed 10lbs 3oz! I have been really concerned that he wouldn't gain weight because he hasn't been eating very well. It is such a relief so know he is growing!

I have been back at work for two days now. Dion is tired, as he has been doing all the night feedings and Elijah is eating every two hours.  He also took Elijah to his appointment today. My boys are lucky that they have a dad that is not afraid to be involved. Noah started full day preschool yesterday. He is a mess when he gets home. Although he really likes his school (and LOVES his new CARS lunchbox), by the time he gets home he is so incredibly tired that he is not a happy camper. Hopefully, if we can get him to bed early and napping every day again, maybe he will return to our happy go lucky kid again. Overall, I am just grateful to have us all together- tired, grumpy, and all!

Nothing Like Home

We have been home for four days now and it has been so nice. You take for granted simple things like having your whole family together, sleeping in the same house and eating at the same table. Both Dion and I are incredibly tired. Elijah is not sleeping or eating well. For some reason he will only drink 1-2oz bottles. We also had to change bottles to get him to eat even this amount. This means that we need to feed him every two hours in order to meet his daily goal. This also means that he gets up several times a night to eat. However, I'm totally okay with the fact that he gets up. This means that he is actually feeling hungry and wanting to eat. I'm just so grateful to be home with him that I don't mind getting no sleep.

Noah is excited to have his little brother home and he even shares his blankie with Elijah. For those of you who know Noah, this is MAJOR. He loves his blankie.

 I go back to work again tomorrow. It is so hard for me to relinquish Elijah's daily care to someone else. I am such a micro manager with him, it may actually do me some good to let some of it go. I am lucky that Dion will be taking care of him for the next two weeks and I can rest easy that Elijah will be in good hands. I am hopeful that our family can get back into our routine and and start to live life again. When your child is in the hospital for as long as Elijah has been, time stands still. It's as if someone hit the pause button on life. I am excited that we may actually get to hit the play button again.

We Flew the Coop!!!

Our little guy came home yesterday!!! Last night was the first night in three weeks that we all slept under the same roof. It was fantastic. Elijah is doing well and seems happy. He still has his fussy moments but is pretty content overall. I think he is still a little uncomfortable with the incision on his side. It started to open a little and seems tender. The doctors put him on an antibiotic to prevent an infection as it was looking a little red. He had so many stitches, I was worried they would forget to take one out! I made Dion look him over and sure enough he still had a few random ones. The nurse assured us they would remove the rest in a week when he goes back for a check-up. Although he is still not eating great, he is eating. Now we just need to get him to put some weight on. He is four months old and only weighs 10lbs. There are newborns that weigh that much. We also need to work on his head strength. Being sedated and laying on his back for the past three weeks seems to have weakened his muscles a bit. I'm going to have to get creative in coming up with ways to strengthen his muscles without straining his incisions.

Noah was very excited to have his little brother back. I think the last three weeks was tough on him. He is back in school doing half days until next week. I think getting him back into a routine will help a lot. The poor kid has been such a trooper through all of this. I'm sure the nurses were ready for us to go home. When Noah came to visit on Tuesday he accidentally hit the code blue button and the nurses came flying in. Yes, we are THOSE parents!

We have had so much support from friends and family through all of this and we are really grateful. I'm not sure how we would have gotten through this past few months without you all!!!

Progress

 The hospital is such a strange place where time both stands still and yet it races. Everything can be calm one moment and then scary the next. As of tomorrow, we will have spent three weeks at Children's Hospital. It has been quite the learning experience. Elijah is doing much better. Both Dion and I were very worried when Elijah refused his bottle. Just like with the diaphragm plication, this was not something we were prepared for. We had mentally readied ourselves for open heart surgery, but not for the complications that can accompany such a major operation. As of yesterday afternoon, Elijah was still refusing to eat. He would take a sip or two and then refuse any more. The nurse was convinced he was just anxious after being intubated twice in the last two weeks. One of the doctors thought that he may just be in a little pain and just overall not feeling well. He compared it to having a cold and not feeling well. You just don't want to eat when you don't feel good.

This was all well and good, but if he refused to eat, the doctors had to feed him through the ng tube. The ng tube made it more difficult for Elijah to eat and was keeping him in a constant state of fullness. He had no desire or need to eat when the tube would feed him. The nurse pulled the tube out yesterday knowing that that occupational therapist was coming. She also spaced the feed by four hours. This helped a bit, but not quite enough. The nurse wanted to replace the tube, but Dion and I were convinced that this was only going backward. He had been throwing up and Dion was sure it was because he was being over fed. The doctors were willing to work with us and gave us six hours to get him to eat 80mls. If we were not able to do this, the tube would go back in. Well our little fighter did it! Overnight, he fulfilled his requirement and kept the tube out. I hardly slept and instead just sat in the room waiting for his next feeding, praying he would eat enough.

This morning, they upped the goal to 500mls over 24hrs. So far, we are pretty much on track. Hopefully he continues to eat well through the night. Although I do not want to get my hopes up, the nurse practitioner told me that if he can meet his goals and everything else continues to look good, we would get to go home tomorrow. We have been here before where we were told we would get discharged and it kept getting pushed back. Hopefully three weeks is enough and our little guy will be ready to come home.

CV Acute and Feeding Issues

As of Saturday, our little guy was moved to CV Acute. This is the step-down unit. We were moved to a shared room which was a bit of a culture shock.  The first night was a train wreck in that the little boy we shared the room with was really upset and screamed all night long. Elijah wasn't a happy camper either and no one slept.

They were able to remove Elijah's oxygen and his breathing actually improved. He wasn't breathing quite as fast and his sats stayed where they were supposed to be. The nurses where perplexed by the fact that he improved without oxygen. They started feeding through the NG tube to get his stomach used to having food in it again.  He hadn't had any food by mouth or NG tube for over two weeks. Yesterday, the doctor allowed us to feed him with a bottle. I was positive that he would quickly down his bottle and we would be on our way out the door. I was wrong. Elijah wanted nothing to do with the bottle. He played with the nipple in his mouth and spit out any of the formula that was released in his mouth. He cried while I tried to get him to eat. I have no idea why this is happening. He was a great eater before surgery. He will take his pacifier with no problem but wants nothing to do with a bottle.

The nurse tried a paci-trainer, which is a pacifier with a hole punched in it and hooked up to a tube and syringe full of milk. Elijah was suppose to suck on the pacifier and have small amounts of milk go into his mouth to get the hang of sucking and swallowing again. He wanted nothing to do with that paci and yet he would take his own paci without a problem. I have no idea how to make him eat. As of last night, the doctors said we can't try to feed him by mouth anymore until the occupational therapist comes today to look at him. I did not expect any of this. Our nurse yesterday thinks that he is anxious to have something blocking his airway after having to be intubated twice. I just wish I knew how to help him. Hopefully the therapist will have some advice today. Wish us luck!

Delirium?????

The good first... Elijah has been fever free for over 24 hours. They were able to pull out his chest tube and the wires that were attached to his heart. They were also able to wean down on the oxygen so that he could be fed through his feeding tube. They even decided to remove the oxygen all together and see how he handles it. So far, so good. He is actually breathing better without the oxygen than he was with the oxygen.

Now for the not so good... Elijah had a very rough night last night. With the constant interruptions and his already restless sleep, he was unable to really sleep at all. By the morning both he and I were a wreck. Elijah was inconsolable during the night and into the morning. He couldn't focus on you or really even make eye contact. During rounds, the doctors discussed his breathing further and they really do not know why he breathes so fast. His lung function is good, as is his heart.

The attending was concerned that perhaps Elijah is experiencing delirium, or ICU induced psychosis. He called in a psychiatrist. Do you know how strange it is to sit down with a psychiatrist to discuss the mental health of your 4 month old? Let me tell you, it was surreal. As you can assume, it is very hard to diagnose in an infant. They do have medicine to treat the condition, however, I would like to do everything else before we turn to medicine. They are going to reduce the amount of interruptions during the night and stop giving him adovan. We are going to try to "reset" his internal clock and make sure he gets caught up on sleep. Today's nurse gave him some benadryl and left him alone to take a 3 hour nap. He was so incredibly exhausted that he couldn't even fall asleep without some help. We made sure no one one came in the room to interrupt his sleep. When he finally woke up, he was able to focus on our faces and he was not crying. He seemed at peace for he first time in days. Hopefully tonight goes well and we may even be able to feed him a bottle tomorrow. Wish us luck!

Post-Op Day 2

I wish I had better news to report. Sometimes I feel like such a negative person when I start talking about our days here at CHLA. On the positive side, he did have his breathing tube taken out yesterday. He was incredibly upset with the tube in and was getting increasingly agitated. He was upset for hours. They couldn't give him any real pain medication because they were afraid it would reduce his ability to breathe if they took him off the breathing tube. This left him in pain, which caused him to breathe even faster. It was a rough day. In the middle of the night last night, they ended up putting him back on high flow oxygen because he was working so hard to breathe. This morning they increased the oxygen even more because he was still retracting.

During rounds this morning, the doctors discussed possible reasons for his continued struggle to breathe. They really aren't sure what is going on. It could be that he needs to learn how to breathe with his diaphragm being tacked down. They ordered another echo and a stomach xray. He was coughing up blood this morning. They are fairly certain the blood is from changing the NG tube yesterday and possibly the breathing tube, but they want to confirm this. They also want to make sure the issue isn't related to his heart.

This afternoon, he spiked a fever and has continued to have a fever since. They started him on an antibiotic as well as tylenol and ordered blood cultures. It's possible that this is the cause for his breathing issues as well. No one knows why he is struggling. It has become very, very clear to me that the hardest part of being a parent isn't the lack of sleep or the crying or the neediness, it's watching your child truly be in pain, pain that you have never known and may never know, and you are absolutely powerless to stop it.

Plication Post-Op Day 1

I wish I had better news. Elijah is still intubated. Dion spent the night at the hospital last night. When I left the hospital last night, he was on the breathing tube but breathing peacefully (in the 20's and 30's). This was great. Before they took him for surgery, he was in the 60's and at times up to the 100's. However, when I came back today, he is back in the 70's. His belly is absolutely huge and he is so uncomfortable. The NG tube that they use to help get the gas out was misplaced so gas was just building and building. They were able to get the NG tube in the right place this morning. He needs to get the gas out before they will extubate. They think part of the reason his breathing is so fast is because his belly is pushing up on his lungs. My poor baby. Not only does he have half a heart, but now his diaphragm function is decreased by half.

We are still hoping he gets extubated today. He hates the tube and it just serves to piss him off. I have to say that this little guy is quite the fighter!

Surgery Update

Elijah is back in his room and it seems like the surgery went well. We haven't been able to talk to the doctors, but our nurse assures us that all went as planned. He is intubated again and has yet another chest tube. He seems to be in pain. I hate seeing him try to cry while being intubated. No sound comes out. Nothing. Just the the facial expression. It's awful. He does seem to be breathing better and much slower. He is more peaceful when his breathing is calmer. I believe the plan is to leave him intubated overnight and reassess in the morning.

On another note, we have had some really great nurses that genuinely care about our son and us. Some who have comforted us as we have cried. I am very grateful.

Surgery

They will be taking Elijah for surgery any time now. They are going to place an incision on his left side and go in to pull and tack the diaphragm down. I am incredibly nervous and apprehensive. Elijah has been fussy all night last night and all day today. It's like he knows what is about to happen. They cited an 85% success rate with this surgery. I asked what options there would be if it didn't work and the resident didn't have an answer. Please keep Elijah in your prayers.

The Waiting Game

Tomorrow we should know what the plan is to address Elijah's breathing. They decided to try the high-flow oxygen again today and try to wean him down to 4 liters. If he can tolerate 4 liters of high flow then they will try to begin feeding him small amounts through his ng tube. In the meantime, we just wait.

Planning for Another Surgery

It was confirmed yesterday that Elijah's left diaphragm is paralyzed and that the muscle is pushing up on the left lung. He is breathing very fast to compensate. He should have 30-40 breaths per minute but he is much higher, even in the 100's at times. His oxygen levels are still good, which is amazing considering how much work he is doing to breathe. At this point, the goal is to not have to intubate him. We won't know for sure what the next step will be until Monday. I am almost positive that he will need an additional surgery to pull his diaphragm down and pin it in place. The ICU doctor can't confirm the surgery right now because that is a decision made by the surgeon. I am hoping they will be able to operate on Monday, but I doubt it will happen that fast. It is so sad to see him so miserable and working so hard to just breathe.

He is really, really fussy right now and we think that he is having headaches. We were warned that this will happen as the body, specifically the head, gets used to the new circulation. It's odd because the coloring in his feet is much better, but his nose is more dusky than before. They tried to advance his NG tube today into his intestines so that they might be able start feeding him through the tube tomorrow. He hasn't eaten anything since Sunday night. They don't want to put any food into his stomach for fear that he may throw up or cough and then aspirate. They will take an xray tomorrow to confirm the placement and then begin the feeding.

So for now we just wait.

Post-Op Day 4... A Step Back

I was excited to get to post yesterday that our little guy got his breathing tube out.  We all felt like that was a huge step forward. However, last night he was breathing really hard and he was put back on the high flow oxygen. This morning their is talk about putting him back on the breathing tube. They really aren't sure what is going on. The xray this morning showed that one of his lungs was higher than the other. They think that they may have damaged a nerve during surgery and that one of his lungs isn't working. They are going to take him for another xray to confirm this. If this is the case, he will require another surgery to fix his lungs. He just looks so miserable. I will keep you updated.

Post-Op Day Two

Well the little guy had a tough night. His art line kept bleeding and they needed to control it, he was having a tough time breathing so they put him on additional support, and he was thrashing around so they kept giving him pain meds until he was delirious so no more pain meds. Today has been a bit calmer. Although we were hoping to have his breathing tube out, he was able to get his chest tubes out today. We are hoping that makes him more comfortable.  On a different note, Noah thinks this place is the best. He was able to go to the playroom today and he had a blast. Tomorrow we will try out the hospital library.

Post-Op Day 1

Elijah had his Glenn yesterday! Although it was very scary to send our baby away for surgery, we knew that he would be better in the end. The surgery itself went smoothly and was quick, but he did have quite a bit of bleeding that they needed to control and that took some time. We were a little worried when he didn't come back to the ICU as soon as we thought, but in the end it was ok.

As I said earlier, the surgeons weren't quite sure which procedure they were going to perform until they opened him up. They wanted to do the Glenn, which would be the next surgery anyway, but because he is still so young and so little, they weren't sure his body could handle it. Typically they want these little guys to be 6 months old and weigh 15lbs or so. Elijah is not even 4 months old and weighs barely 10lbs. But they were able to do the Glenn.

He is doing well so far, but he is on a lot of support still. He had high pressures in his lungs and needed to be put on Nitric. He still has a breathing tube and two chest tubes. His incision is closed this time and he has an NG tube. His coloring is so much better. On Sunday and Monday before the surgery, certain parts of his body, like his feet, were straight out purple. The doctors and the nurses like to say these kids are "dusky." This kid was straight out purple. He is nice and pink now!

Every day here in the CTICU we have goals and today's goals are to wean off of the Nitric, get the breathing tube out, maintain good numbers, and be calm. Just like Noah, Elijah is a busy little boy and every time he gets moving his pressures go up. So we are trying to keep him calm and allow his little body to get used to the new circulation. They have warned us that he will probably get headaches because his head isn't used to that much blood flow and that his head may swell.  In other words, morphine and ativan are our friends.

Surgery Tomorrow- July 8th

Tomorrow Elijah will go into surgery. They aren't sure if he will be getting the Glen (the 2nd in the 3 surgeries he needs) or if they will be redoing the Norwood (the 1st surgery). I am praying that he is able to get the Glen. To do the Norwood again feels like starting over and it would be adding another open heart surgery to the series that he already needs. They won't know which direction they will take until they open him up. It was scary sending him for open heart surgery the first time, but it feels even harder this time. Please keep our family in your thoughts and prayers.

Prayers Please- Back in the CTICU

The title says it all. We went in on Thursday for Elijah's pre-Glen cath.  It was fairly routine and the procedure itself went really well.  He was able to stay on room air and the doctor didn't have to do any interventions.  She was able to take all the pictures they needed and she got a great look at his heart. There is some narrowing of the shunt where it meets the artery, which means that he needs his next surgery (the Glen). When we got to recovery, he was on oxygen but sleeping. As he woke up, he was very agitated and started thrashing about. They tried tylenol but it didn't really do anything. They gave him some morphine and that seemed to relax him. He refused his bottle and just fell asleep in my arms.  Things looked good so we were then transferred to CV Acute for observation for the night. For the next couple of hours I held him to keep him calm but his oxygen levels kept dropping and coming back up. Dion came with Noah and my sister joined us. Things were looking positive.

Dion left with Noah and that's when things got crazy. The little guy's oxygen levels were dropping and they weren't coming back up. The nurse started looking a little frantic and the charge nurse came in to help.  They called the doctor for the floor but she didn't come.  They waited and tried everything they could to help him but nothing was working. I picked him up and tried to calm him but his oxygen levels would not come up.

At that point the the nurse called the Rapid Response Team.  If you aren't familiar with this term, this is the team of doctors and nurses that respond to code blue. That was one of the most frightening moments of my life. The nurse tells me that there are about to be a lot of people in the room. She wasn't kidding. The doctor finally comes and she and the nurse have a little argument and the room fills with people. When I counted, there were 15 people in his room. They surrounded his bed and orders were shouted across the room. They started pumping him full of fluids, oxygen, and morphine.  The x-ray team showed up and blood was taken. His oxygen levels were still not responding. They started talking about needing to move him to the PICU or the CTICU because they were running out of interventions they could do on the floor. One of the nurses told me to pack my stuff, and we would be moving in a bit. The room was still full of people. A social worker came to check on me and the doctors started to explain that they weren't sure what was going and that they may need to intubate him in order to breath for him. The next thing I know, they are throwing monitors on his bed and rushing him to the CTICU.

When we get to the CTICU, it is full of nurses. They are frantically preparing his room and getting all the medications ready. Several nurses move him to his new bed and they start efforts to get him to breath better. Things were being thrown on the ground and everyone was moving at a fast pace. They were finally able to get his oxygen levels up, although not where they should have been.

He is still in the CTICU and needing assistance to breath. They would like get him breathing on his own, or with a little assistance, so that they could send him home to gain a little weight before his next surgery. He only weighs 10lbs and ideally he would weigh 16lbs or so. However, right now, sending him home doesn't seem to be likely. The other option is to move forward with the Glen next week. The downside to that, beside him being so little, is that his surgeon is completely booked next week. I trust his surgeon and it scares me to put my little baby in the hands of someone else.

We should know within the next 24 to 48 hours what the long term plan will be. I ask anyone who reads this to please keep our little guy in your thoughts and prayers.

Plans... Why do we make plans?

Seriously. I think God is trying to teach me a lesson. Even the best laid plans, the most thought out systems, the most stringent adherence to the rules, and we still get crapped on. Seriously? Even before Elijah was born, we knew that he could not get sick. We started taking better care of ourselves, eating better, and taking stock in hand sanitizer (it is all over my house). Dion and I were not getting sick, and even Noah was able to ward off colds. Things were looking good... until June. If you read my previous posts, you already know that we have fought one round of illness that ended with Elijah being admitted to the hospital for a week. Then, less that two weeks after discharge, it hits again. Dion, Noah, Dion's sister, and Dion's niece all get sick. The little guy manages to fight it off for a while, but finally gets the sniffles as everyone else is recovering. Of course I am freaking out. However, he keeps drinking and his oxygen levels are ok (not great, but ok) and we are able to stay home. Noah never really recovers and I ended up having to take him to the doctor last week only to find out that he has double ear infections, poor guy. Dion had been feeling better but, as of today, is now down for the count again. We just can't seem to kick it.

I took Elijah to his once a month, marathon cardiologist appointment on Tuesday. His cardiologist had been concerned about his dropping oxygen levels at his last appointment and had scheduled his cath for July 5th. On Tuesday, he was really concerned and wanted it moved up to Thursday (a week early). He admitted that they were cathing him earlier than typical but they need to see what is going on. He also said that it is possible that they could decide to do his next open heart surgery with the admittance for the cath. Wow... I wasn't quite prepared for that. Of course, it depends on what they see when they go in, but we need to be ready.

My emotions are so conflicted. On one hand, I am excited for him to get the Glen (his next surgery) so that he can be more stable and not so fragile. On the other hand I am terrified to send my tiny little baby under the knife again. I just can't get the image of his open chest out of my mind. They say this procedure is easier than the first. I guess I have to take their word for it. His little chest has healed so nicely and if you don't see the scars, you wouldn't even know something was wrong with him. It will all be opened up again. He will be in so much pain again. Pain that I can't take away.

On another, happier note, we are trying to enjoy our summer. Although we have been fairly housebound this summer, I was able to take both boys to the beach with the help of my sister on Saturday. We had a tent of sorts for the baby and lots of sunblock for Noah. Noah was scared of the ocean, but loved the sand. Of course even with lots of sunscreen and the shade of our little tent, I burnt like a lobster. Noah also started swimming lessons today. Dion took him and said that he seemed to really enjoy it. We really are trying to keep life moving forward with Noah. His Aunty comes over every week and takes him places and he is one happy camper. Dion and I were able to get away for a couple of days with the help of my mom and sister. It was nice to relax and have some time together without the stress of daily life. Even though we are living in a kind of purgatory right now, I truly do have so very much to be grateful for and so many people have helped and supported us through all of this. Although it may sound strange, I can honestly say that we have been blessed.

Ugh

Earlier this week Noah came down with yet another cold. As soon as his nose started running, we knew we were in trouble. When Dion got home from work each one of us took a kid and went to a different room. The next two days his niece was able to come over and help me during the day so that we could keep them apart until both Dion and his niece got sick as well. Noah has an awful cough and has been super grumpy. He only wants mommy. The adults seem to have colds. Once his niece got sick, Dions sister and my mom came over to help.

I am terrified Elijah will get sick again. I feel like we got lucky the first time and that luck may run out. I feel the panic start to rise just thinking about it.We have been wearing masks and using hand sanitizer like you wouldn't believe. I went through the whole house and disinfected every surface I could, I sprayed lysol everywhere, and I washed anything that fit in the washing machine. I opened all the windows and aired the house out. Hopefully this will help us avoid the illness, but I know that ultimately it is out of my control. I feel like the walls are closing in over here.

On another topic, Elijah's oxygen levels have been lowering slowly over the last couple of weeks. They have scheduled him for his cath on July 5th at CHLA. Hopefully everything goes well and we will be out of there the same day. He is continuing to gain weight, but very slowly. He is almost 10lbs. They want us to start fortifying his bottles again, but Elijah is so picky that he won't eat much when they are fortified.  Who knew a three month old would be so picky!

Discharged

Elijah came home on Friday afternoon. I have been slow on updating because I caught his cold and have been under the weather. It just goes to show you how fragile he really is. Noah and I both got sick and both of us recovered just fine. Elijah catches it, and he is hospitalized for 5 days. Crazy. We are going to pull Noah out of preschool after this week in hopes that it will prevent more illness from coming in the house. I feel awful about pulling Noah out because he loves it so much, but I just have to remind myself that it is temporary and that kids typically have summers off. I am hoping Elijah will be able to have his next surgery before school starts for all of us in the fall. I am afraid of the germs that all of us will bring home once we return to school. I know that I typically get sick when the school year begins and Dion does as well.

On another note, this stay at UCLA has confirmed our decision to go with CHLA. If you read the posts from my pregnancy, you will remember that I was incredibly torn between the two hospitals. When Elijah got sick this time, we were forced to go to UCLA. Once we got there, because his heart function was good, we did not force the issue and get transferred to CHLA. However, there are drastic differences between the two hospitals and if this were to happen again, we will do everything in our power to get to CHLA. I am very grateful to the ladies from Sisters by Heart for guiding me in the direction of CHLA. I'm not sure that Elijah's outcome from the first surgery would have been so good had we gone with UCLA.

A fellow heart friend of mine had the poem on the side on her blog and I liked it so much, I added it to mine. I hope she doesn't mind!

Admitted last night...

Elijah was admitted last night. He had stopped eating and was having very scary choking episodes. They did an echo last night and his heart function was good. They think he has a virus and they are running tests. He is still not eating like normal and they have him on oxygen because he is having trouble breathing. One cardiologist explained that his heart and body are functioning at max capacity as it is. He has no reserves to deal with illness. Hopefully he will won't be here for long and we will take our baby home. Please keep him and our family in your thoughts and prayers.

Dr. Appointments

Today was a very busy day for a very little boy. Elijah had an echo and x-ray done first, followed by an appointment with the cardiologist, and then an appointment with the doctors from the NICU. The good news is that his echo looked good. They were a little concerned about some narrowing of the aortic arch.  I guess this is fairly typical but they want to keep an eye on it and follow up next time. The x-ray was clean and his lungs looked good.

There is some concern with his weight. He has almost fallen off the growth chart. He is barely hanging on at 0%, although his head is growing well. He weighs 8lbs 4oz at 8 weeks old.  Eating has been a challenge and is the most stressful part of my day. He gets stiff and arches his back. This is on a good day. On a bad day he does this plus cries during the feeding and typically pukes on me. Throwing up is par for the course at this point. All of this sounds bad, but in comparison to a few weeks ago, it's actually an improvement.

We shared all of this with the team. Obviously he doesn't like his formula so we are going to try something else. They also think that he has reflux. He is already on the maximum dosage of zantac so they are thinking about changing the medication. However, in order to change the medication, we need to be admitted again. Of course I want to do whatever is best for Elijah, but the idea of being admitted again is not something I like to think about. Everyone agrees that if we can find a formula that Elijah really likes, he will eat more and then he is likely to gain more weight. However, if he has reflux, then it is painful for him to eat and that also needs to be addressed.

I was telling Dion today that it would be so nice if feeding Elijah was that peaceful bonding experience that I remember with Noah. Instead, feeding time is stressful and nerve racking. Hopefully we will find answers soon.

Life at Home...

It's been a while since I have last updated. Adjusting to not only having another child, but a child with some special needs has been quite the experience. Elijah is doing well. Noah loves his little brother although he has struggled with sharing his parents' attention. We decided to keep Noah in school in order to keep his routine and have interaction with other kids. When he gets home we have to wash him down and change his clothing. Elijah isn't allowed to be around kids or people who are ill. Basically we are hermits. He can go outside, but not in enclosed spaces where people can cough or sneeze on him. We have become quite the germ freaks.  Hopefully this will be enough to keep the germs from getting to Elijah.

They told us when we were discharged that the toughest part now will be his feeding. How true. When they sent us home, they had us fortify his breastmilk to 27 calories (formula and breastmilk is typically 20 calories).  They gave us two cans of this special formula, progestimil, and sent us on our way. They warned us that if he refuses two feeds, throws up twice, or has too many diapers, we have to go to the emergency room. The fear is that he will become dehydrated and that the shunt in his heart will clot. This would be very, very bad. It's also important that he gain enough weight. These heart babies often have a hard time gaining weight. They don't typically eat well and their bodies use more calories because they work harder just to stay alive.

Needless to say, we are a little high strung about his eating. He had been doing really well eating at the hospital, although they weren't really happy with his weight gain. However, once we got home, he started throwing up every day and struggling to eat. My gut told me it was the fortification causing this. However, it could have also been caused just by the fact that he is a heart baby. We just didn't know what to do. He would arch his back and choke on the milk. Feeding him became so stressful. We went to CHLA last week and they weighed him and they weren't particularly pleased with his weight gain and they blamed the feeding issues on reflux and they increased his meds. Again, my gut said this was not the issue, but I'm not a doctor so what do I know.

Finally last week it got bad and overnight (why does it always have to happen at night?) Elijah started to all out refuse to eat. He cried, spit out his milk, and refused his bottle all together. All I could think about was Elijah getting dehydrated and the shunt clotting off. Finally I started to breastfeed him and give him plain breastmilk (the doctors told me I was not allowed to breastfeed because they couldn't monitor the amount he got and because he burned too many calories feeding at the breast). I just didn't know what else to do.

I contacted CHLA the next day and they were able to set us up with a dietician. At this appointment I learned all about the different formulas and they tested my breastmilk.  I guess the formula he was on is really broken down and easy to digest but it also tastes awful.  Who knew a four week old would have such an opinion.  In the end, it was decided that Elijah doesn't need any fortification because he eats so much. I knew it! Not only that, but he had gained even more weight! Victory!

Other than feeding, Elijah has done really well. His echo was good, the x-ray came out clean, and the ekg was normal. They will continue to monitor him over then next couple of months. He will have his next surgery between 4 and 6 months. It will depend on his weight and oxygen levels. It's scary because his oxygen levels will drop. It's only a matter of time and this drop will tell them he needs the next surgery. We measure his levels and weigh him every day.  Once he has his next surgery, he will be much more stable.

So until then we will just keep on monitoring him, going to his doctors appointments, and giving him lots of love.  I won't lie, it's been a challenge. But this little guy is worth it!

We sprung the joint!!!

Discharge!!!!  Nuff said....


:) I'll update later with pictures!

Two Steps Forward, One Step Back

We hit our first set back a couple of days ago. The day they decided to move Elijah from CTICU to CV Acute, I thought his breathing was odd. It sounded labored and incredibly fast. I asked the nurse and doctor about it and everyone said it was normal newborn breathing. When we got to CV Acute, I kept hearing the "strider" as they call it and the quickness.  It seemed to be becoming worse. Over the next 24 hours, I kept asking everyone who came in to listen to his breathing and they continued to reassure me and tell me it was normal. I knew from doing my research that his breathing may be a little faster than typical babies, but this was heartbreaking. I was giving him his bottle and he was trying so hard to drink it, but he was struggling to breath at the same time. It was only filled with 10cc and it seemed to take all of his focus and energy to drink it. I panicked and didn't know how such a small, determined little baby could continue trying to eat when he could barely breath. This continued overnight and into his next feeding. My heart was breaking and I couldn't imagine forcing this on my little baby every time he needed to eat. By the time Dion got there the next day, I was beside myself. Thankfully, the charge nurse of the day shift finally listened to my concern. She was determined to get someone to listen to her.

The next thing I knew, she had called a doctor and had a nurse practitioner in the room listening to his breathing. The doctor came and they decided that indeed it wasn't normal newborn breathing and something must be wrong. They did xrays and discovered that he had fluid in his lungs and this was causing the labored breathing. I was so relieved that they finally did something to help him. They stopped all feedings and put him on even more diuretics to help clear the excess fluids. They kept his oxygen the same and allowed him to rest.  On top of that, his white blood count was trending upward and they suspected an infection.  They already had him on an antibiotic and they added another. The good news was that he had yet to have a fever. They then decided that they needed to remove the central line (the IV to his heart) because it could be the source of the infection.

The good news in all of this is that the doctors came in today and said that his xray looked much better. His breathing, although still quick, was greatly improved, and his white count was finally starting to lower. They let me give him a bottle today for the first time in several days.  The nurse filled it with 40cc of fortified breast milk and told me I had 15 minutes max to get him to eat. What was left, she would feed him through his ng tube. She explained that after 15 minutes, he will actually be using more energy than he is getting from the milk and they want to prevent that. He ate 31cc and probably would have eaten more, but I couldn't get him to burp (its very scary to try to burp a baby who has recently had his chest cracked open).  I was a little disappointed that I couldn't get him to drink it all. However, the nurse came in and was thrilled. She said that typically, hypoplasts will only eat about 6cc on their first whole feeding. That little boy has to be one of the most determined, strongest people I have ever known.

All in all he is doing well. A heart doctor came in this morning and said they were very pleased with his progress. He explained that these babies typically spend 3 weeks or so in the CTICU and then another few weeks in the CV Acute. On average, after the Norwood (his surgery), they spend 35 days in the hospital. Its just hard when its your baby. It's only been a week and a half since his surgery, but when it's your baby it feels like forever. When it's your family that is separated, it seems like a lifetime. This is some hard stuff. I think that little baby may be the strongest of us all.

Wow... Wow... Wow

Wow what a week. The pictures to the right document the past week in chronological order (the top pic is the most recent). It has been such a tough week, but Elijah has been quite the fighter and is doing really well. He was born last Tuesday. They took him as soon as he was born and assessed him. I was able to hold him for a minute before he was taken to the NICU to wait for transport to CHLA. Dion went with him to the NICU while they finished with me and I was moved to recovery. Those are some of the most painful moments of my life. Dion was wonderful and managed both me and Elijah, going back and forth all day. The hospital was great and took me to the NICU on the way to my room and I was able to see him again. The transport team also brought him to my room before the took him to CHLA. It took four people, plus Dion and an ambulance to get him to CHLA. All for a little six pound baby.

Once he was admitted, they waited two days before doing the surgery. During that time, we were able to hold him with the help of a nurse. There were so, so many people in and out of the room.  CHLA is an amazing place with wonderful people working there. The nurses and doctors have to be some of the most caring people I have ever met. Not only have they cared about Elijah and his well being, but they care about us as well. There is a nurse assigned to Elijah at all times and he/she stays in the room with us and Elijah. Dion and I worked out a schedule and have been taking turns spending the night at the hospital. It has been hard, but we are doing the best we can.

The day they took him for surgery was heart breaking.  We had so much support at the hospital. I wished I had seen more pictures of babies directly after the surgery. Nothing prepared me for the sight of my little baby hooked up to so many wires you can't count, with chest tubes attached draining blood from him, a foley catheter, and a breathing tube. Not to mention the worst part, the open chest. It was shocking to say the least.

He did well and progressed just as he should. One night his left lung collapsed and they had to manually get him to breath again. But man that little boy is a fighter. The doctors have been slowly weaning him off of all his medicines and they closed his chest on day 3. The chest tubes came out Monday and they were able to take his breathing tube out yesterday. They still have him on oxygen but they have been slowly lowering the levels over night. They also started to introduce pedialyte through his NG tube over last night. 

Dion spent the night last night and they were able to move Elijah from the CTICU to the Acute unit this morning.  This is very exciting. Dion is supposed to be able to try feeding him with a bottle this morning. Dion and I have been  pacifier nazis trying to get Elijah to suck again, so hopefully he will be able to get the hang of the bottle fairly quickly.

Noah has had a rough week. The first several days were so crazy and we didn't really get to see him much. He has been a trooper though. We have had so much family around to love on him and help take care of him. Once things settled down, we have been able to make sure he sees at least one of us everyday. But he still calls for mommy and daddy when we aren't around. He came down with a little cold and we are being very cautious and hoping that none of us catch it as well. We have been repeatedly warned that Elijah can't get sick.

I suppose this has been a long enough update :). I will try to be more consistent about getting information on here as it happens. We have been so very, very tired it has been hard to think about anything but the absolute necessary. As always, we ask that you keep Elijah and our family in your thoughts and prayers.

Happy Birthday

Elijah Carter Coley was born yesterday, March 13, 2012, at 6:00 am. He was 6lbs even and 18 inches long. Elijah scored 9/9 on his apgar score and was strong and stable. He is now at CHLA awaiting his first open heart surgery that is scheduled for tomorrow morning. The doctors have asked that friends and family donate blood because he will need it during his surgery. Please keep him and our family in your thoughts and prayers. I will update later with pictures once I get to a computer.

Nearing the Finish Line

Yesterday was a tough one. I had my typical day of doctor's visits. However, after I got there, I am informed that my OB, the woman who was going to deliver Elijah, no longer works for the office and has been replaced by two new doctors. How does that happen in one week time? I try not to panic, but I had finally adjusted to this doctor and we had worked out a plan and now this.

I am first given an ultrasound and seen by the specialist. He said things look good as far as Elijah's growth and his heart is beating well. However, I mention that CHLA had sent him the MRI results and he proceeded to disappear for quite a while. Again with the rising panic. I have come to discover that it is never a good thing when a test takes an abnormally long time or a doctor disappears for an extended period. When he came back, he had my nurse in tow and was trying to explain grey and white matter of the brain. He said that they found some abnormal signals in Elijah's white matter, but he really couldn't elaborate. The most he could say is that we shouldn't stress about this because it probably doesn't mean anything.  He went on to say that this is why they do the MRI. They want to know the abnormality before they perform the surgery so that they know the abnormality isn't a result of the surgery. Hmmmmmm okaaaaaaay. He then proceeded to tell me that the easy part is about to end (pregnancy) and the tough part is about to begin. Yeah, so that is comforting.

After this confusing experience, I am taken to another room to lay on a bed for the next 30 minutes while they monitor Elijah's heartbeat and make sure I am not having any contractions. He was a champ and his heart beat really well. I met the new OB who seemed nice enough and we discussed the upcoming induction. My body seems to already be preparing for birth so she thinks they may just start with pitocin. And now for the real kicker, they scheduled my induction for this MONDAY! Wow I was not prepared for that. It's not that much earlier than what we had originally thought, but it was a curveball. The one thing I thought I could control and I thought I had a plan for was this birth and now I had to start over and plan again. Talk about panic. Of course everything will work out, I just need to release the need to control things. Nothing in this can be controlled. Why can't I just accept that?

MRI

So... I never thought of myself as being claustrophobic. However, I've never really been in a tight space before today. Wow the MRI machine couldn't get much tighter. First things first, they scheduled my appointment for 6am at Children's Hospital. Come to find out, they schedule fetal procedures for the first appointment of the day. The offices weren't even open when I got there. They finally took me back at 6:30am, got me changed, gave me a questionnaire, and put all my things in a locker. My nerves were wrought. I had no idea what to expect, except what I know from the TV show House, and we all know how reliable TV shows are. 

The technician was very kind and took me into the MRI room and got me settled on the sliding board/bed thingy. I was relieved to find out that they were going to show me a movie during the procedure to help distract me only to discover, after several tries, that the machine wasn't working. Nice. To put a long story short, I am not a fan of the MRI machine. To be pregnant, super uncomfortable, having back pain, all while being shoved into a tube was not how I would have liked to spend my morning. I found myself having to use the breathing I used in yoga and while working out in order to stay calm. I am not one to panic, but I will tell you after an hour of having to hold completely still all the while an incredibly loud machine keeps making systematic buzzing noises and filling the tube with heat, I must say I had to stifle the panic.

By the time I was done, I was ready to run out of that place. However, I would say the most sobering part of the morning had to be when I got up and needed to find a place to change. When I went into the MRI room, there were no other patients. When I came out, the place was filled with small children, some playing with toys, other crying from fear, all waiting for their tests. It just brought me back to reality. No matter how much I disliked the MRI, I was an adult and could rationalize and calm myself. These poor little kids were scared, sick, and going through so much more. Quite sobering if you ask me.

37 Weeks...

Thursday was a whirlwind of a day. I met with my OB who also did my ultrasound. Everything looked good as far as Elijah's growth, fluids, and heart rate. At my next appointment she will check me more thoroughly and she will set our official induction date. She did make a point to let me know that he could come at any time now. However, we are all hoping that he waits until induction. Although induction is frightening, it will set Elijah up for the best possible outcome.

I then met with a neonatologist. She will be the doctor in the delivery room who will be there to take charge of Elijah's care. She said much of what we already knew. She encouraged us, and anyone who would be a constant in Elijah's life, to get the whooping cough and chicken pox vaccine. I hadn't really thought of that.  She also said that if Elijah is born stable, she will allow me to hold him for a couple of minutes before taking him to the NICU. The was new news. Up until this point, I had been told that they would show him to me but now let me hold him.  I have really struggled with this. One of the most significant moments in my life was when I delivered Noah and they placed him on my chest. This was also the moment I bonded with Noah. I had yet to resolve myself to the fact that I would not have this moment with Elijah.

After she takes him to the NICU, they will set him up on a central line that will deliver the medicine that will keep him alive and stable for a few days to allow his pressures to drop.  Ideally they would like to perform his first open heart surgery a few days later. We will be able to stay will him and hold him while he is in the NICU and the CTICU.

After this, we met with two cardiologists who performed our last fetal echo. It was a little harder to see all of the structures of Elijah's heart because he has gotten bigger and because his bones have hardened. The diagnosis has not changed and continues to be HLHS. This was the first time I was actually able to see what the doctor was talking about. The left side of his heart is virtually nonexistent. He then sat with us and explained the function of the heart. He was very kind and very patient. Both of the doctors seem to think that for what it is, Elijah is looking really good. He looks to be a great candidate for the Norwood procedure and he will probably receive the Shano Shunt during the surgery.  He said to plan on around a two week stay in the CTICU and then two more weeks in the step down unit. The average stay is a month but it could be less or more depending how how things go. He asked if I had gotten an MRI yet. Because of insurance problems, I hadn't. However, I now have one scheduled for next week. Hopefully we will get the results in time. All in all, it seemed like an encouraging day. The doctors were all positive and incredibly kind.

36 weeks...

There isn't much new to report. As the doctor on Thursday said, we are just counting down until the induction date. Baby Elijah is continuing to grow and it looks like he weights 5lbs 12 oz which is a good size for his gestational age. I sat down with our nurse and we discussed some of what would happen when he is born. Because he is a single ventrical baby, they will most likely transfer him to CHLA very quickly. I will have to pump and CHLA will store the milk for when he can finally eat.

There are so many unknowns. After he has his surgery, his chest will be left open and he will be intubated.  They can't tell me how long either will continue, it all depends on how he heals and tolerates everything. She said it could take few weeks or it could take a month. During that time he will be sedated and pain free. At least that is comforting. We will meet with the neonatal doctors next week to discuss their plan for him. They will be the team of doctors that will be in the delivery room to take care of Elijah immediately after birth.  We are still waiting for the insurance to grant us the MRI and the final echo. I have no idea why they are stalling. Hopefully it will be approved soon and we can move forward. The more information they have now, the better and quicker they can treat Elijah later.

Here we go!

We finally had our first appointments with the USC Fetal and Maternal Health Institute on Thursday. It was a very, very long day. We had an incredibly long wait and had to see two different doctors. All in all, things are looking good. Elijah is growing just as he should and we are now looking at an induction date of March 14th to deliver on March 15th. I believe that they will then schedule his surgery for the following Monday. It's all starting to become very real and scary. Dion has faith that everything will work out and things are going to fall into place. I have always been a positive person but I am really struggling with this one. I am petrified that things are not going to go well. I suppose we all just have to live in the moment and not worry about things we can't control.  I have to go to weekly doctors appointments and see several doctors each time. They want me to have an MRI so that they can look at baby Elijah's brain. They said that this is standard with heart babies but I can't help but worry about what it could possibly mean. Again, I need to live in the moment and not in the possibilities.

33 Weeks and Counting

So after a very long fight with our insurance company, we finally have appointments set up for next week with CHLA Fetal and Maternal Health for all of my doctor appointments. This has been such a trying time.  I now understand why people get frustrated with insurance companies.

I am nervous to find out how Elijah is doing and if he is gaining enough weight. Hopefully, we will be able to schedule a tentative induction date at that appointment.  As March gets closer, I find myself getting more emotional. The thought of not even getting to hold him, having him whisked away to the NICU, and possibly not seeing him for days is terrifying. The idea of your tiny little baby going in for open heart surgery is mind numbing to say the least. I am just scared and worried. I fear for Noah and all of the uncertainty this will all bring. I can't imagine the emotions that he will feel when his world gets turned upside down. There is just so much uncertainty and I struggle to find peace in the unknown.