Our monthly surgeon appointment.. #17

Yesterday we had our monthly appointment with Isaac's surgeon. He weighs 17 pounds 12 ounces and is nearly 27 inches long! He is getting so big. He has been saying da da da, da da, daa dee for the last 2 days. It is so cute. Tonight he even said DAD, which I am sure is just him expanding his motor skills but nevertheless so cute. He is babbling so much.. He has also been sitting up unassisted for about 2 weeks.

But back to his surgeon appointment.. She said he looks good and talked to us a little about our big step in 2 weeks which is starting solids. We are excited but really nervous. We see our GI on the 10th of April and he is the one that will give us a menu for Isaac. This is a new and exciting chapter in our lives!! Isaac will be 6 months old soon.. Well 6 months on Easter!! :) Speaking of, last week we took him to see the Easter Bunny...

Our trip to the aquarium! #16

We celebrated my birthday early - Monday the 19th - and went up to the Seattle Aquarium. It was supposed to be the only "nice" day (40 degrees and cloudy) this week so we wanted to take advantage of it. I have never been to the aquarium and it was so cool! We weren't really sure how Isaac would do in the car because it was the longest car trip we had taken with him. Seattle is about 40 minutes or so from where we live. But he did so great!!! He is such a good baby.. Barely ever fusses. He just does not like to be restrained in the car seat. He is still in an infant seat but a convertible seat is in the near future. I have a feeling he will like that idea.

We were at the aquarium a little over an hour. Isaac was SO interested in the fishes and all the bright colors. It was so cute seeing the smile on his face and him wiggle around with excitement. It was definitely a great time. Every time I ask him if we went to see the fishies, he gets this big smile on his face. So cute. I think we will be getting him his own fish here soon.. :)

We had lunch at a little mexican restaurant between the aquarium and  Pike Place Market called El Puerco Lloron. It was authentic mexican food and was delicious!!!! Isaac wanted to sit on my lap the whole time and look out the window. He was so interested. He also was amazed by the ceiling fan. LOL. We have one in our dining room and he always looks at it.. Even though it is never on. It was so cute.

We walked from lunch to Pike Place Market. We had spent a majority of our day at the aquarium and checking out a few shops along the way so when we got there booths were already packing up. Bummer. We did manage to get some flowers and a hat for Isaac. We also had to get some baklava and cheesecake! My 2 favorite desserts. I can't seem to find baklava ANYWHERE in our area. I need to do a little bit of research because I can't go to Seattle every time I have a sweet tooth. :) There has to be a bakery or a Greek deli that sells it around here.. We ended our adventure by stopping at World Market. I could shop all day in that store. Didn't find much to buy though.. We don't have any room in our house for anything else. It is overrun with baby stuff! Go figure!!!

Isaac's first video..

Where are we now? #15

Finally I am all caught up to date! It took me almost 2 months to tell our entire story up until now. So all the postings from here on out will be in real time! :) After his last little exam under anesthesia things have been going great. We are currently seeing our surgeon only ONCE a month now. And our pediatrician and GI at regular intervals... 4 months, 6 months, 9 months, ect.

Isaac has been doing great! He is hitting so many milestones.. It is crazy! He sat up for the first time unassisted on the 10th of this month. He is currently working on getting on his hands and knees. He is definitely on the go and likes being active. Next month Isaac will be 6 months old.. I can't believe it. Time has really gone by so fast. We also get to start solids next month. We are so excited but also nervous. This is another big step for him. We hope that his system can handle it and he keeps pooping and adjusts well. I started getting his little dishes and spoons ready. I cleaned off his highchair and put it up to our table. I had to dust it off! It was sitting in the corner of our dining room. Since he is sitting up unassisted now he can finally sit in it!

I wish the weather would get a little better so we could start going out more. We are supposed to get SNOW tomorrow!! I love snow, but I am so over it for this year. I want some warm weather and sun! Isaac loves going outside but it's so darn cold out we can't really do much outside. We have had a couple nice days and I've taken Isaac down to the duck pond. He loves being outside. I hope summer starts a little earlier this year than last. It didn't really start getting nice until almost July! In July of this year we will be looking for a new house. We have outgrown our 2 bedroom apartment. Isaac needs more room... WE need more room. :)

On another note, we finally got Isaac's birth announcements done! FIVE months late :) Oh well! Better late than never.

Here's some pictures of us!

Taken March 3rd 2012

Taken March 16th, 2012

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.

The days after the hospital.. #12

Christmas was great to us! We had our baby home and healthy. We were so thankful for that. We got to spend our first Christmas together happy and healthy. That was all we could have asked for. Isaac was SPOILED! He got so many great gifts. We had gotten our tree earlier in December and by Christmas it was ready to be tossed out. Lol. I love the holidays. It was truly a special one for us. However, we didn't have to time to do last minute shopping for anyone in our family. But they understood. They knew how hard it was for us being in the hospital so close to Christmas. We really didn't get to do all of the traditional holiday things but there was always next year. Just when you start planning things, they go in another direction. Here is some family photo's over the holidays!

Isaac and his tree

The calendar we made in the hospital

Visiting Santa

Photos from our hospital stay 12/17/11-12/20/11

Precious baby!

Still smiling!

I love my daddy

I like looking in the mirror

Me & Daddy

My gammy visiting me

My favorite Rudolph

Passed out waiting to be discharged

Here we go again.. #11

I was hoping that our surgeon would be on call this weekend or the other surgeon that had discharged Isaac from the NICU. Jose actually picked up the phone and then looked at me and said it was our surgeon. I was so relieved. But when I got on the phone she told me who she was. Not our surgeon. :( I explained to her what was going on and she asked me a bunch of other questions. Did he have fever? No. Was he refusing to eat? No. Was he acting sick? No. Was his stomach distended? No. Did the diarrhea have a foul smell? No. Was he vomiting? No. She told me I could either wait awhile to see if this was just an isolated incident or I could head into the ER. It was my call. She said that because he had no other symptoms that it didn't sound emergent but she said it was up to me if I wanted to come in. I just felt in the pit of my stomach that something wasn't right but then again he had NO other symptoms of enterocolitis. But like all the horror stories I have read about your child can go from having one little symptom to being very ill very quickly. So I decided that we should probably take him in. Jose had to work that night like every Saturday night and by getting him checked out meant that I could come home and not worry about it. So we decided to pack up and head out..

When we got to the ER they assessed him. Basically the usual head to toe normal baby work up. They said he looked good and it was probably just an isolated incident. But I asked if the surgeon was going to come down and look him over.. Which is STANDARD Hirschsprung's baby procedure. And the ER doctor said no that they felt he was fine and they didn't need to contact the surgeon. They didn't even do an abdominal xray.. Which is also STANDARD procedure for Hirschsprung's babies. Well we insisted that they contact the surgeon because we had spoken to her and we would feel better if we could just get a quick word in with her about how she wanted to handle his care for the weekend. So the ER doctor contacted her. They came back in and said the surgeon wanted to get the abdominal xrays. Well duh people we had been saying that the whole time. So off to xray he went..

They ER doctor didn't even come back in.. The surgeon did. I asked her immediately if he was ok.. And she paused and said.. "The xray is VERY concerning." My stomach immediately dropped. My mind started racing and I burst into tears. I had no idea what that meant.. But from the look on her face I knew it wasn't good news. She told us she was going to pull up the xray to show us what was going on. This was the second time in my life I had been this scared. The first being, well obviously, when he was diagnosed.

She showed us on the xray how backed up with gas he was. His tummy was very distended internally but externally it was not very well pronounced. She said in the area where he had the surgery there was a narrowing. And she did not know why it was like that but there was definitely a "stricture" there. There was also talk of intussusception and a blockage. She said that she was going to examine him and do a catheter in his bottom to release all the air that was built up in there because it could not get out. I was panicking thinking that his surgery didn't work and we were back at square one. When we lifted up his shirt she saw the rash that numerous pediatricians had seen at his regular doctors office and asked how long it had been there. I said well kinda on and off for 2 weeks and then explained how 3 different doctors saw it and said it wasn't a big deal. She immediately said, that is a milk protein/soy allergy or another allergy and that's what could be causing all the rest of his symptoms. Um like gas, spitting up, distension, explosive diarrhea, and cause a stricture to form because allergies inflame the intestines. All those trips into his pediatrician and me knowing something was not right and they keeping telling me everything was normal, well look here buddy, I was RIGHT! I was so furious. How long had by baby been suffering??? Seriously. And the ER was about to send us home and we would have went home if we hadn't requested the surgeon to come down. This is why so many things go undiagnosed.. I have read SO many stories of other families STILL chasing answers for their babies. STILL fighting issues and illnesses because to doctors, they are just another kid. Everything falls into the "normal" category. My If you can't trust an EMERGENCY ROOM, who the hell can you trust? I'm glad I am the persistent mom that kept pushing. I will not take no for an answer. Just as I thought this would be a case solved and we would be given at home instructions, she dropped the bomb. He was being admitted. He needed further testing, time to clear out his system and she wanted to monitor him at least until Monday when our surgeon was back in the office so she could decide what she wanted to do. I was terrified.

The whole time this is going on, Isaac is happy as a clam. When we wheeled him up on a big huge bed to the pediatrics floor, he thought that was the coolest thing. Ha. I didn't. But I knew he was in the right place and he was going to get taken care of.

Nothing really happened over the weekend. He had a few more xrays that showed the gas was clear and things were looking better. The stricture was still there and could take at least 2 weeks to improve because of the inflammation. His intestines needed time to recover. He was on bowel rest for 24 hours which meant he couldn't eat anything. He was NOT happy about that. And we were waiting for a GI consult on Monday so we could really confirm this is what was going on. All his labs had come back fine, no infections or anything. Thank GOD! So pretty much hung out until Monday when his surgeon and his new GI doctor would come by to let us know what the plan would be.

On Monday, which was December 19th (ya so close to Christmas) our surgeon and GI told us that this was indeed an allergy but also intusseption was not ruled out and that they wanted to monitor him one more night and if things went ok, we could go home tomorrow. And upon discharge we would be given instructions for at home care. Our surgeon also wanted to do a barium xray which is what he had in the NICU so that she could get a better look at what was going on. She wanted to rule out any kinks or twists in the bowel, which she said can happen from surgery. Or if there was scar tissue that was forming. Or any other abnormality. But that wouldn't be for 2 weeks after the bowel had time to rest and some of the inflammation went down. How could I wait 2 weeks to find out if my baby was ok? Another wait and see thing.. But in the meantime,  Isaac was taking to his new formula.. Which I was happy about.

Tuesday the 20th we were released. We had to do at home irrigations which was a saline rinse on his bowels with a catheter. Not fun. But these help keep his system clear and reduces the risk of enterocolitis. So we had to learn how to do these. And we had to do them 2 times a day. We had a follow up appointment set with our surgeon and GI.. Now we basically had to wait for the contrast xray to really know if anything was going on. This was definitely weighing on my mind..

Normal or Not?.. #10

Isaac did really well for the first few months he was home. We had no issues or have anything pop up in regards to the Hirschsprung's. We learned so much about what to look for and also A LOT about a new baby!! You don't know ANYTHING until you have a baby. It was really hard to decipher if things were "normal" baby stuff or something to do with the Hirschsprung's. As soon as we got into a routine, he would switch it up on us again. Isaac has always been a good baby. Never been fussy; always smiling.

I started to notice a little bit of what I thought was reflux. Spitting up, gassy, congested all the time. I decided to bring him into the pediatrician to have him checked out. They gave us a prescription for Zantac and basically sent us on our way. I respect all doctors but seriously if another pediatrician tells me "it's normal" I will blow up. The reason I am saying this is because I brought Isaac to the doctor numerous times because of his gas and spitting up. And also other things related to his tummy that I just didn't feel right about. And I was told every time it was "normal." One day I just felt deep down inside that something was not right with him. He had been straining really hard, turning bright red, and grunting A LOT. And then a boom in his diaper. Hirschsprung kids can get an infection called enterocolitis which if left untreated can be VERY life threatening. Kids that get enterocolitis get constipated before hand and then the back up stool causes bacteria to over grow, causing this terrible infection. It can also come on very fast and furious. We were given strict guidelines to follow and what to look for in regards to enterocolitis. When we went to change his diaper he literally was straining so hard and then it happened... Explosive diarrhea that literally launched about 3 feet on to the wall. THIS was one of the signs of enterocolitis. Explosive diarrhea.  At this point I was sure something was going on.. And it was BAD.

I immediately picked up my phone and dialed the on call pediatric surgeon. It was a Saturday and why does crap always go down on the weekends! I knew we would be heading into the ER.. Luckily we were given "in case" instructions beforehand so we knew what we needed to do. We were instructed to call the on call pager and speak with the surgeon on call to let them know what was going on so they could let the ER know we were on our way.. That way the surgeon could tell them exactly what tests they needed to run and then they would be down to check Isaac out. I kept telling myself I was just over reacting.. The phone rang about 2 minutes after I had dialed in our number and pressed pound.. The surgeon was calling back..

The day Isaac was born

Now that I have posted about our early days with Hirschsprung's, I thought I would change up the vibe and share some photo's of Isaac the day he was born..

He was so puffy!

Getting weighed! 8 pounds 5 oz

His little feet

Daddy and Isaac

Mama and her baby

All snug

Isaac John Franco
 October 8th, 2011 - Saturday
 8 pounds 5 ounces - 21 inches
 Born at 3:42pm
 5 hours of labor/natural labor/no complications

Today is the day.. #9

Monday October 17th was the day we got to bring our sweet baby Isaac home. We were discharged around 1pm and couldn't get home fast enough. We had to watch some videos and do paperwork before we could leave. We also had to wait to see Dr. Escobar so he could talk to us about at home care. Most of that morning was a blur. We didn't care about anything.. We just wanted to get home. We hadn't been home in almost 2 weeks. We were only planning on staying 2 days. That's why I quit planning things in my life.. You never know what God has already planned for you.

A lot of people ask if I knew my son would have this.. And I didn't. Hirschsprung's is a crazy thing. Some say it's genetic, some don't.. They don't really know. There is no tests that can be done during pregnancy that can tell you if your child has this. However, I have been doing some research and have seen some cases where on an ultrasound there has been some red flags. They don't know until the baby has actually arrived if the child in fact does have HD. For us we will never know WHY Isaac has this.. But we are thankful that he one of the lucky ones. I still had times where I asked why us, why my son, why is this happening.. But then remembered how much worse off some people are. I am trying to bring awareness to this disease and raise money for research. Some of the people I have met along this journey have kids that are still struggling with HD related issues. This can be a very mild issue for some of us but then a really harsh condition for others. Either way the stress endured on this journey is tough on anyone.

When we walked outside it was beautiful out.. The sun was shining and it was warm for a mid October day. We loaded all our stuff into our car.. We had a TON of stuff! And we got in as a family and headed home. Everything was ready for us.. I couldn't wait to show Isaac his nursery like I had told him so much about while he was in the hospital. I had never felt better in my life.. I thanked God for this day. Without our faith, I don't know what would have kept us sane.

In his carseat ready to go home!

Daddy driving us home

Rooming in photos

Daddy feeding Isaac

Snoozing

Photos from our last day in the NICU

No more wires or cords!

Back in a bassinet! Ready to go to the intermediate care nursery

Comfy with no wires or IV's to bother me

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!

Progress photos

First time feeding my sweet baby

Sleepy Isaac

OH!