Yesterday was another down day.. #47

Saturday around 3 am Isaac woke up and vomited all over our bed. We put him in the bath, washed him up, and snuggled on the couch for a little bit. He ended up throwing up once more before falling back to sleep. When he woke up he was acting totally fine. He insisted that dada and I get up right away so we could play. Throughout the day he seemed 100% normal. He ate fine, drank fine, played fine, nothing seemed out of the ordinary.

Around 3:30pm he started complaining about his stomach hurting. Then the diarrhea started. Red flag! So he asked to take a bath. We decided to call his surgeon and see if there was anything we should be watching for. You know that extra reassurance this was just a viral thing and it will pass as soon as it came on. By the time we hung up with the surgeon and got him out of the tub we could tell him upper abdomen was rock hard and he sort of had a lump on the upper left side. At this point I was really concerned. We called the surgeon back and he said to bring him in. Luckily, it was one of the surgeons who has treated Isaac before and we absolutely trust.

The ER doctor did an exam, we had an x-ray, and they started him on an IV. They also drew labs. One of the PA's from the surgical team came down to access Isaac herself. After reviewing the x-ray the surgeon came down. He said he was a little concerned. I hate hearing those words. But I kind of already knew that something was going on. He told us the x-ray was not good. He said it could be 1 of 3 things...

1. A large bowel obstruction (um what)

2. Enterocolitis (fabulous)

3. Colitis - like viral gastroenteritis

I was hoping it was number 3. Obviously. I knew that when I saw him that something was not good. Usually when surgery comes down it's like the oh sh@t factor. He told us he wanted to do his own exam and do an irrigation because that would tell him more about what this was. The irrigation went fine. He said he didn't feel any resistance while doing it which meant it was not an obstruction.  Hallelujah.  And since it wasn't explosive he was pretty sure it wasn't enterocolitis. Hallelujah x 2. He did want to admit us though for observation. And that would give them a chance to get the labs results back too. So we waited for our transport upstairs. Another hospital stay. The second one in less than 2 months.

We got up to our room around 9pm. I think. I can't even remember. The night was uneventful.  He got to eat. We watched cartoons and played with some toys. The labs came back normal. His inflammation marker was not elevated which confirmed he did not have enterocolitis. That pretty much left only one option.. Viral illness. Which was the best news. The only news I was willing to accept.

They woke up early this AM. Around 6am. The nurse told us we needed to get him to x-ray because the surgeon would be in the OR all day and wouldn't be able to read the x-ray until after 4pm and if it had improved he wanted to get us home asap.

The x-ray had improved drastically. The issues from not even 12 hrs prior had resolved. The surgeon came by and just did one last exam. And said we could go home.

Just another bump in this long road.. But hopeful of better days. ♡

It wouldn't be normal if we didn't have a hospital stay during this time of the year!!.. #44

I waited to post this until after I got my previous post up about how we are managing HD naturally. Last week Isaac had a short hospital admit. Blah. He was running a small fever last Sunday which went away within a few hours. But by Tuesday his stomach was making that awful grumble HD parents do not like. Then he was complaining about his stomach hurting. You could tell he was in pain. Soooo we packed up and went into the ER.

Earlier that day his surgeon saw him in the clinic and nothing showed up on xray. He had been complaining about his stomach briefly in the AM so I figured he should be looked at. Within a matter of hours the xray had drastically changed!! Happens super fast with HD kids. The xray they took in the ER showed he had inflammation in his colon. Not cool!!! The surgeon reviewed it and decided to admit us for observation.

We had to wait over 5 hrs in the ER room because the hospital was so busy. Luckily Isaac had fallen asleep so when IV therapy came by to put his IV in they had everything prepped and ready. Of course he woke up when they put the IV in. I was heartbroken for him but it was almost better he was asleep. Last time it took an hour to get a line in because he was so upset and fighting. There is nothing worse than watching your child in that state of pain and panic.

We stayed 2 nights. He was only on NPO for less than 12 hrs. NPO means he can't eat or drink. He slept mostly but I knew he wasn't feel too bad. Just didn't want to be there.

The diagnosis was viral. Nothing that held him down too long. Things are on the up and up. Glad we breezed by this one.

Another big day.. #14

January 9th, 2012 - Exam under anesthesia day. I barely slept the night before. Actually we only slept 30 minutes. Partially from nerves and partially because Isaac was ANGRY he couldn't eat past 1am. He was up and down most of the night. I almost broke down and fed him. He was so upset. This got me thinking again and asking God why did this happen to us? Why my baby? When would this hardship end? But then instead of asking why, I asked God to comfort my baby and protect him. After we got Isaac to sleep we tried to catch a little snooze, well a 30 minute cat nap.

We arrived at the hospital at 7am. Did all the standard "surgery" type stuff. Checked in. Got admitted. Got to our pre-op room. The nurse spent at least 45 minutes going through information and vitals and all that required stuff. Then we waited for the anesthesiologist to come by and talk to us. When he did come by he was very brief and very nice. We seemed like old pros at this. We really didn't have any questions. Just basically like that last time.

When our surgeon came by she answered any questions we had. I always felt more comfortable asking her questions. She is not only an amazing surgeon but a mom as well so she knows how I am feeling. I started crying, like usual. She told me he would be ok and she wouldn't let anything happen to him. She always knew how to comfort me. She told me I had to stop crying or she was going to cry. LOL. I was a hot mess!!!

When the nurse came by to take him to the OR, it was Shannon from his first big surgery. She was one of the OR nurses. And she remembered us! I instantly felt a little better. Isaac had a team that knew him and that made me feel better. We gave Isaac all the kisses and hugs we could. I told him I would be waiting for him with a bottle when he was done. I felt so bad, again. Like I did before his first surgery. He was older now. He knew a little more about what was going on. And some strange lady was going to take him away. I really hoped he wouldn't be scared. I have never left him since the day he was born. I felt so terrible. Shannon picked him up and carried him off to the OR. We knew the routine. Go upstairs to surgery waiting and WAIT.

We checked in upstairs at the desk. Walked over to our table we had sat at during his first surgery. We waited for our surgeons name to come up on the screen to see the progress. It flashed from in progress to done really fast. We kinda of looked at each other like what the heck is going on?? Was it like that because something happened? Or did it show that because it wasn't an actual surgery? We were so confused! Then the phone rang and one of the desk ladies came over and said they were finished and the surgeon would be up to talk to us. She escorted us to a room and we waited. We were really nervous because it was literally not even 10 minutes from when they took him away.

When she came in she told us that it was a 5 minute from start to finish procedure. FAST! She said that the area looked wonderful and she had no concerns after seeing it. She said that the inflammation was probably from his allergy and also from the surgery. She said it is pretty common for some swelling and inflammation to linger for awhile after surgery and that the allergy probably just irritated it even more. SUCCESS! His initial surgery worked! Nothing was wrong. No more surgeries at this point. Now I just wanted to get to my baby.

Our surgeon walked us down to the recovery room. Isaac was crying his head off. He was so hungry and so out of it. But they told us it should wear off within minutes because he was only under for less than 5 minutes. So he had barely any anesthetic. We fed him. Got him dressed and the discharged us within 10 minutes. We left the hospital around 10am. His procedure was at 9. The pre-op stuff took longer than the surgery and recovery! We couldn't get out of there fast enough!!

We were so happy that we could finally put this part of the journey behind us.. And hopefully wouldn't be back at the hospital any time soon. We just wanted some normalcy in our lives.. 

Good & Bad news.. #13

January 3rd, 2012 - Today Isaac had his barium xray done. Which is a contrast xray, similar to a CT scan. The xray shows the large intestine, the colon and rectum. He had one when he was first diagnosed in the NICU. And it was absolute HELL. They have to strap him down to a board with his arms above his head.. He screamed the whole entire time. It was so hard for me to watch or listen to. I stood right next to him even though there was nothing I could do to calm him. The surgeon ordered this procedure so she could see why they were seeing inflammation and a stricture in the area where he had his surgery.  They wanted to see if the the inflammation had decreased since he was released from the hospital a couple weeks ago. They didn't know if there was a kink or twist in the bowel or if there was some abnormality from the surgery so she wanted to make sure the inflammation was allergy related.

It took about 30 minutes. As soon as they were done taking the pictures we unstrapped him and picked him up. He was so upset. He was like hyperventilating almost. I was so upset I was crying myself. You know when you cry so hard you start doing involuntary sniffing and whimpering. Well he did that for about 20 minutes. It broke my heart! After the radiologist reviews the films, we packed up and headed across the street to his surgeons office. Luckily we had an appointment with her an hour after his procedure so we would know the results right away. I hated waiting. And I think she knew that. So she scheduled us to see her right after.

We waited in the room for the doctor to come in. I was pacing the floor. The rooms are incredibly tiny so I pretty much did 2 steps and then turn, did 2 steps, and kept repeating that over and over. My heart was pounding, my hands were sweaty, and I was shaky. When the door opened I wanted to just open my mouth and start asking questions. But I sat down and tried to remain calm so I could  understand what she was saying.

Good news or bad news first, she asked. My heart sank. Bad news? There's bad news? She told us the good news was he did not have any abnormalities from the surgery or any other serious complications, BUT the area she was concerned about was still a little narrower than her liking. So what did that mean? She said that she wanted to go in with a little scope and take a look at the area to make sure no scar tissue was forming causing the stricture or that there was not a pocket of infection that can sometimes form. Sometimes scar tissue can form which requires a cosmetic type surgery to fix. She said she also felt better that she would know exactly what was going on. So she wanted to do an exam under anesthesia next Monday the 9th. It was like a day surgery. But he did have to be put under anesthesia.. Again?

So I guess all in all, it came out in a way we were hoping for. Nothing too serious was going on and after next week we know for SURE what we were dealing with. Until then, be nervous as HELL.

Rooming In.. #8

Today is Sunday the 16th. Isaac was still tolerating all his feeds and pooping! (HD parents get overly excited about poop) We found out that we would be rooming in tonight. We were given the same room they had given us on the 2nd night Isaac was in the NICU. This time we were a lot happier to be moving back to that room! :) The Tree House had been very comfortable.. In case you were wondering what the tree house is, here's the link for more info : http://www.multicare.org/home/tree-house-place-2 , but we were ready to go back to that cracker jack box of a room and spend the night with our baby! Today he would be removed from ALL the machines.. No more of anything! All his vitals had been stable throughout his stay. He got a 9 out of 9 on his APGAR at birth and never had any issues in the NICU. He was being transferred to the intermediate care nursery which was on the postpartum floor. Back to the floor where we had started! They said we would probably get to go home in 2 days. I couldn't believe how everything had been so wonderful, gotten so bad, then had gotten so good again in a matter of 10 days. It seemed like 10 years...

I was taking down all of Isaac's things from his bedside in the NICU. I was packing up all of our stuff.. His boppy, our blankets, his clothes, he was actually wearing clothes and not just a diaper at this point! I began to look around and see all the other babies. It made me sad because they weren't as lucky as Isaac. They weren't going home today. Some of those babies had been there for weeks or months. And some had a long way to go before they were in our shoes. I realized then how lucky and BLESSED we were. This was definitely a hard situation, stressful, but not compared to what some of these families are going through. I always saw new faces in there. I would see the doctors talking to the parents and then the parents breaking down and crying. I remembered how that felt. You can't understand someone's pain like that, unless you've been through it.

Most of the babies in there were premature. Isaac was the biggest one in there. We were always asked by other parents how early he was.. And we would laugh.. Not early.. 2 WEEKS LATE! He was the only one like that in there. Him being 2 weeks over due gave him that much more of an advantage to fighting this.. I truly believed the saying "They will come when they are ready" to be absolutely true. He needed that extra time. He gained more strength and more weight in those 2 weeks. He needed that for his fight. Those extra 2 weeks of misery for me gave him the strength he needed. He knew what he was doing.

After I had all his stuff packed away, we waited for him to be transferred up. I couldn't believe the day was here.. We were getting closer to that hospital exit. :)

That evening we spent in the room as a family. We took so many pictures and barely even slept. We cried a lot. Happy tears this time. We ordered food in and just enjoyed our new family. This is what most people get to experience from the beginning. We just had to wait a little longer, but it was worth it. Isaac was just happy he could eat.. He had such a big appetite! I was starting to get nervous about bringing him home. Excited but nervous. Of course we had asked about long term issues with HD and how our life would be. For the most part HD kids live normal lives. Our surgeon told us that we would be seeing a lot of her, she wasn't lying :). We were just thankful this was something that could be managed and for the most part we can get on like any other normal family would.

Later in the evening we got word that we would be discharged tomorrow if tonight went well. HOME?! Really? HOME?! Finally!! We had finally made it to the end of this journey.. We hoped that tomorrow would be the day we got to take our baby home.. After waiting a month for him to come home. 2 weeks of being overdue and almost 2 weeks in the NICU. We were so ready!

Hurry up annnnnd WAIT.. #4

October 11th - We had to pack up our postpartum room this morning. It was really sad because today would have been our first morning home with Isaac. Instead we were rounding our second day in the NICU.. He was 3 days old. They let us have our postpartum room for an extra night which was great of them. I couldn't have imagined leaving the hospital and forced to go home. They were giving us another room tonight that was especially for families like ours. I told Jose that I would sleep on the ground in the hospital before I left Isaac. I was not going home until he came home. Then we learned about the Tree House which was literally in the alley behind the hospital. It was like a house for families dealing with pediatric illnesses. Perfect. This meant we didn't have to go home. So after tonight that's where we would be staying for however long Isaac had to stay here. So we made our way over to the next hospital room they had for us. I thanked all my postpartum nurses. I saw all these happy moms and dads carrying their little newborn babies up and down the hallways. I saw a lot of families packing up and leaving the hospital with their new babies. I was jealous. Did they even know how I felt? I was that mom every one of them would feel sorry for. The one who thought we would be going home one day but now we were going to be here for who knows how long. I just kept asking why me? Why my baby? Why us? What did I do to deserve this? Or even more so, what did my sweet innocent baby do to deserve this? I just cried and cried. I hadn't had a dry eye since he was admitted to the NICU.

I decided to call my OB/GYN and talk to him. Ha. Him and I had a very rocky go out of the gate. At one point I thought about switching but in the end I am so glad I didn't. He is the best in the business. I could not have made it through my delivery if he didn't deliver Isaac. At the very minute I needed support the most and direction, he was there. He is an amazing doctor and human being. I wanted to call him to give him an update on Isaac and to just have him reassure me things would be ok. Before getting off the phone he told me he would come visit us in the next couple days. It also made my heart sink a little bit because he barely had any idea about Hirschsprung's. I had to explain to him what it was. Well geez, does anyone know about this? Besides the staff in the NICU?? I seriously had no one to talk to about this.. No other parents whose baby was in there with the same thing Isaac had. We definitely got the needle in the haystack.

This was Isaac's second day in the NICU. Today I had opened my eyes a little bit more and began to let me eyes dance over all the babies there. Some were in incubators, well most I should say, some were in the same type of bassinet Isaac was in, and "the twins" were in cribs. The twins had been there for 3 months I believe. They were born around 32 or 34 weeks. Can't remember. All the incubator babies always had a blanket over the top of their machine. So you never got to see them. Only when the nurses were performing their rounds. They were so teeny tiny. At that moment I almost felt guilty. Here was Isaac, POST TERM (2 weeks overdue), 8.5 pounds, no major illnesses. Even though I felt like this diagnosis was major. All the nurses and doctors kept telling me to not make a mountain out of a mole hill. I don't know if they are trained to tell you that or they were just trying to keep me from losing it. Either way, I kinda believe them. But I wasn't so sure yet. At the end of our journey I realized how lucky we were. I can say that now but of course at the time I didn't know it. So many of these babies would be here for MONTHS or had been here for months already. I just couldn't imagine. I also noticed that not many parents were around. I spent at least 19 hours a day here, I couldn't even imagine having to leave Isaac. I asked one of the nurses why I didn't see many parents here. She told me that after the moms are discharged they usually only make it occasionally to visit because of other kids, work, living out of town, things like that. How heartbreaking was that. I couldn't even imagine. At that moment I felt lucky. I got to be here every hour of every day with my baby. Holding him, changing his diaper, doing all the things I was allowed to do. The NICU encourages parents to be involved as much as possible, when the babies condition permits it. Thankfully, his did. We were there every shift change, we always wanted to meet the nurse who would be taking care of Isaac. We were there for every 4 hour check where we got to take his temp, watch the nurse give her assessment, change his diaper, and just be able to hold him. I began to see how lucky we were. Dad and I spent a lot of time holding our precious son. We began to formulate a plan where we could be getting sleep but also having someone with Isaac 24 hours a day. So he never felt alone. Between me, Jose, and my mom we made sure someone was always there. Sometimes the nurses had to force me to go back to the Tree House to eat or to get some sleep. I would have slept on the floor or in the rocking chair next to his bed if they would have let me.

It was some time mid morning.. I can't remember the exact time or day for that matter. All my days were running together. Anyone who has experienced something like this will tell you the same thing. I lost all concept of day and night. I thought 10am in the morning was 7pm at night. Dr. Acierno came to his bedside to check him out and prepared for the biopsy.

A rectal suction biopsy allows the doctor to take a small sample of tissue (biopsy) from the rectum (the last part of the large intestine). The pathologist will then check to see if there are nerve (ganglion) cells in the sample. If there are no ganglion cells, that means it is Hirschsprung's. They took 3 different tissue samples from different depths of his intestine. That would give them an idea of how much was affected. It took literally 2 minutes and she was done. Usually the results take a week but since we were on a rush type of basis, sometimes ICU is a good thing, we would know by Thursday. So today which was Tuesday, tomorrow which was Wednesday and then... Thursday. She told us that she had already booked his surgery for Friday morning at 9am. She wanted to book the time so the OR (operating room) was open for her. A wave of sadness came over me. She was the best doctor for this condition, she knew what she was talking about, no matter how good she was, I still wanted her to be wrong about the diagnosis. I was hoping for a small miracle. But in the back of my mind I knew Friday would be the most terrifying day of my life. So instead of asking God for a miracle, I started asking him to protect my son and take care of him. Jose and I spent A LOT of time in the chapel. They had prayer blankets for families in crisis. Some nice older ladies from a church donated their time into making these. We took one, don't worry people they were there to take :), it was really comforting for us. We also took a rosary to put above Isaac's head. Relying on our faith really kept us strong. We knew everyone was praying for Isaac.. It meant so much to us. So for today and tomorrow, it was a waiting game.

Spending so much time in the NICU taught me a lot. A lot more than I think I needed to know.. I knew what all the alarms on the monitors were. What all the numbers on the screen meant. It was like a mini crash course in medical school. That way I didn't have to constantly ask the nurses if he was ok. I could just watch all his numbers and know he was ok. Heart rate good, check, respiratory rate good, check, oxygen level good, check. I was constantly checking the container his suction tube drained into. Sometimes I saw it red tinged with blood. I always got worried about that. But each time they told me it was normal because the suction tube could have gotten caught on the side of this throat, I know sad, or at the bottom of his tummy causing a hickey like thing to occur, which made it irritated and bleed a little. As long as the color of the fluid was not green like bile or have copious amounts of blood in it, we were good. Isaac actually didn't fight it too much.. He was sucking on it a lot.. Silly boy. He was starting to get really hungry. Now that his tummy was feeling better, he was looking for some food. In the end the poor guy didn't even eat for the first 7 days of his life!!!!! Can you imagine how hungry he was when he did get to eat!

At that point there was a little relief that 2 of the 4 big steps were done. Contrast xray and the biopsy. Now we waited for the confirmation and then if need be, surgery. There wasn't much we could do at this point.. We just had to wait. More lessons in patience...