Jake's Story

Here it is...my baby's boy life played out in a time line as the drama unfolded. Some of it based on the way I remember it, and some are actual e mails that I sent out as things happened. Here we go...

The day our world changed in more ways than one! Jacob Alexander Gould was born at 11:45am weighing in at 6 lbs 7 oz, 21 1/2 inching long. With in 10 seconds of the doctor handing Jake to me, I noticed that 2 of his fingers on each hand were fused together. I cried. Call it hormones, call it sleep deprivation, call it what you want, but I was devastated that my beautiful baby boy had a "flaw". The doctor & nurse were quick to assure me that they see it all the time and it would be a easy fix. No big deal. I still cried...then I hid his hands in his blanket and cried more. Now crying because I just hid part of my new born son in a blanket so that people wouldn't see his "flaw", so that I didn't have to see his "flaw". I get a knot in my throat to this day thinking about how devastated I was to see his fingers like that. Oh if I had only known what the next year of my life was about to be like! The rest of our day was like any other day of a typical family with a new born child. Lots of family, & friends dropping in to see our new little man and wish us well. Around 7:00 pm that night our pediatrician came into our room to check Jake out for the first time. Our room was packed with friends. Many of which could tell I was having issues with his fingers and tried to make light of the situation by cracking jokes and being silly. It worked...I respond well to silly. Dr. D took Jake over to the little baby exam table and started checking him out while we all continued to chit chat. Soon, Dr. D turned to me and asked me something about his hands ( I don't remember exactly what she asked). The room got silent knowing I was having issues. Zach and I got up and walked over to where she was standing. We fully expected to see her examining his webbed fingers and hear how easy of a fix it would be..., but by the look on her face said a whole other story. I remember her saying, " I suspect that Jake has Down Syndrome". Silence...she then started to point out the signs that she noticed, and before she could get past how low his ears were I was in the bathroom throwing up. How could this be? I had the Down Syndrome ultrasound 3 times, and it never showed any positive results! I managed to pull myself together (feeling like an ass that I handled the news so well in front of the doctor and all of our closest friends). She then told us that she would be ordering genetic testing to confirm the diagnosis of Down Syndrome, but we would not have results back for 7-10 days. She left. Our room was silent. Then empty. Nobody knew what to say. We understood because we were in shock and didn't know what to say. But we had to say something. So we started making phone call after phone call after phone call. Then, once all the phone calls were made, we went to bed. But even that was short lived. Around 11:00 pm I called the nurse in because I wanted to feed Jake. He was sounding a little gunky, and he was a little cold, so she told me that before I fed him she wanted to take him to the nurses station and do his vitals (where they had better equipment) and they would be right back. After just a few minutes, I knew something wasn't right. Jake didn't come back. The nurse did come back. Why do I keep seeing this face with bad news written all over it, I thought to myself. Then I found out why. She said that Jake's oxygen saturations were a little on the low side and Dr. D wanted him admitted into the PICU for the night. She told us that they were getting him settled into his new bed and would come get us when we could go back to see him. What is going on? We spent the next few hours in the PICU staring at our son hooked up to God knows what. All we knew was he must be in bad shape to be there. But by this point we were spent. We couldn't think, talk, nothing. Just spent. We went back to our room, crawled into bed and sobbed in each others arms. I have never been so scared in my life. We just kept asking each other what we were going to do with this baby, how are we going to take care of him, how are we going to do this? We cried until there was nothing else to do but sleep. The next morning Zach went into the PICU to see Jake and I stayed behind waiting for pain meds. Dr D came in to check on Zach and I. We talked for a bit, then she told me something that made me feel a little more normal. She told me that it was ok to grieve for the son that we thought we were going to have. Then I cried again. She was right. It wasn't that I didn't love Jake, it was that Jake wasn't what I was expecting. At that point, I felt a little less like a ass and a little more like a tired, raging hormonal, post birth mother. And a new light shed upon the situation. From that moment on the phrase "it is what it is" spilled out of our mouths about a billion times. Some what accepting it, and some still convincing ourselves that it would be ok. The crying became less frequent, and the joy of a new baby became more frequent. Don't get me wrong, I did snap at one point and told the PICU doctor to stop referring to my son as having Trisomy 21, until the test came back. I REFUSED to believe that my perfect little angel was anything less than perfect (with webbed fingers and a breathing problems). After a few days in the PICU he was moved to the peds floor for a few days of observation with hopes that the test results would come back before we left. And they did. And here comes that face of bad news again. He didn't have to say anything, and he didn't. I just started crying...again...and he sat with Zach and I. He said some stuff...I don't remember what. All I remember was thinking that in my heart I knew he had Down Syndrome, but my head wouldn't let me believe it. Now I have to believe it because it's here, it's real, and it's on paper. Shortly there after another doctor came in to tell us about the parade of people that were about to come into our lives. We left the next day with a binder full of information, appointments with people that we had no idea what they did, and applications for...every kind of therapy known to man. But we were happy to be going home. Home to normalcy. Home with Gracie. Home.

We thought that once we got home with Jake, things would feel normal again. It didn't. We still had no idea what we were doing. It was like being a first time parent...again. We put our best efforts into the idea that this is our life and we are good with it. But we weren't. We were scared, unprepared, angry, and still grieving. At one point we even talked about adopting another child. Thankfully there were a few voices of reason out there that told us not to make any rash decisions until the "fog" lifted. Then I was promised that the fog would lift. It did, with time. We did the things that we would normally do to help try and put some normalcy back into our life. But that was short lived. Two days after having Jake home, he choked after a feeding. Zach got him breathing again, but his breathing was very shallow. Why call 911 when you have a paramedic in the house right...LOL...we probably should have but we didn't. Instead we jumped in the car and drove him ourselves. Big deal you say? Let me tell you what really happened...Zach sat in the back seat (with no seat belt) HOLDING Jake just in case he stopped breathing again. I, like a crazed mother with a baby not breathing drove faster than I have ever drove in my life, sobbing because Zach wouldn't tell me if Jake was breathing or not. He just kept yelling to drive as fast as I could! Pretty safe ha?! Obviously we made it to the ER in one piece. They checked Jake out and we were home an hour later. For the next few weeks we were nervous wrecks feeding the little guy, and even when we did everything right, he still projectile vomited. He lovingly got the name Little Baby Pukes-A-Lot. Cute ha? I imagined him having his own Garbage Pail Kids trading card (remember those...yuck)! A few weeks later, we came to the realization that Jake was Jake, and Jake pukes...a lot. We fed him, burped him, and waited for him to unload on anyone or anything in a 3 foot radius. We did a lot of laundry. Then one night, we had some friends over for dinner. We were sitting around getting ready to put the kids to bed and my friend offered to feed Jake. Sure I thought to myself, it might be kind of nice to let someone else smell like baby vomit for a change. I got her all set up (covered in receiving blankets from head to toe), and continued to get Gracie ready for bed. From Gracie's bedroom I could hear things were not going so well in the living room and went out expecting to see my friend covered in vomit. But that was not at all what I walked into. Jake was choking again. My stomach dropped, here we go again. But this time things were different, very different. Jake was turning blue, and limp. Right there in my living room. Total chaos broke out. I had to usher my friend back to Gracie's room to keep Gracie out of the living room. When I returned to the living room I found my husband sitting on the floor behind his friend (another paramedic) begging Jake to start breathing. Begging him to hang on. The fog was back, and thick. I somehow found my phone, dialed 911, and explained what was going on. Next thing I knew random people from all directions were running into my house. I say random people because we live in a area where we have EMT's respond until the paramedics can get to us. Oh ya, and the paramedics are my husbands coworkers. That was fun for everyone involved. All I remember happening after that was Zach jumping into the back of the ambulance with Jake and I was getting into my car. Once I got to the hospital, Jake was awake, breathing...normal. His airway cleared on the way to the hospital and he was over it...ready to go home. And once again, an hour later we were home. But now, wondering how we were ever going to sleep again. We actually considered taking turns sleeping so that the other person could sit up and watch him. Ya right. An hour later we were both crashed out with Jake in his bouncy chair next to our bed. All the sleepless nights finally caught up with us. We took Jake to Dr D. a few days later and got him on some reflux meds. This seemed to help very randomly. Some days he did great, others...not so great. The next few months were a blur of doctors appointments, endless weigh in's, filling out paperwork for anything and everything, and more people paraded into our lives. At the time the massive amounts of people and places with their titles that were only initials that meant nothing to us (FRC, CDC, SSI...), were incredibly frustrating. And we just wanted to be left alone. We wanted to for a second feel normal. It took us a long time to realize that "normal" is what we make of it. I mean really...what's normal? But then "normal" walked in our front door. Let me back track a little. A few days after we left the hospital with Jake, we had a appointment to see a Genetic councilor. We had no idea what we were walking into, and were pretty sure we didn't want to go. But we did. We were given way more information than we could comprehend at the time and handed a HUGE bag with a binder and some books about Down Syndrome. As we walked out the door we were asked if we wanted someone from our local Down Syndrome group to contact us. We said sure, what the heck...what's one more person?! Zach and I were dreading having this person come to our home and preach to us the joys of having such a special gift...bla, bla, bla. You can sense our bad attitude. Please forgive my brutal honesty, but if I can help 1 person realize they were not the only one thinking the same thing, and help them feel normal...this blog has done it's job. Anyway...I opened the door, and there she was..."normal". A beautiful 30 something, with 2 kids in tow. They came in and Gracie and one of the children ran back to Gracie's room and played like they were old friends. Oh, I'm going to call this person "Normal" until I talk to her and make sure it's ok to use her real name. So "Normal" came in, sat down, and stared asking about Jake. She then introduced us to her little guy. I kept waiting, and waiting, and waiting for the preaching to start. It never happened. She just came over and chatted, like she was there to make a new friend. And she did. I will say that she did have the look. The look of "been there, done that". Which is want made her even more "normal" to me. Then she said something that I will NEVER forget. Never. She said, "In time you will realize that Jake is more the same than different". Inside I chuckled thinking ya right. Your crazy. Thanks for coming over lady...see ya later. I was a little bummed. "Normal", turned out to be a crazy lady that is trying to make me believe that my son with Down Syndrome is pretty much like my other child, and most other children. "Crazy/Normal", turned out not to be "Crazy" at all. She was right. Jake is just like other children. Trust me, it took me a long time to say that and an even longer time to believe it. Oh ya, "Normal", thank you from the bottom of my heart for coming into my home and lifting me out of my fog. Please don't stop doing what you do! I don't think you will ever understand how much you have & will help people with what you have started and what you do.

I'm at the point in Jake's story where I started sending out e mails to inform family & friends about Jake & his health issues. I'm going to post my e mails exactly the way I wrote them the first time, and change the color, so that it is easy to tell the difference between the e mail and my comments now. Hang on...here we go!

About a week before this e mail was sent out, I had taken Jake up to Seattle Children's Hospital for a sleep study. I had just gotten a phone call from some doctor at the sleep lab that I had a very hard time understanding (bad English). She called to tell me that Jake's sleep study was anything but good, and he needed to be seen by his ENT (Ears Nose & Throat) doctor for a possible surgical intervention.
My Poor Little ManTaking up residency at Kadlec3/23/2009 started a central line to his heart so that if needed they could push drugs and get an immediate response. They are also starting another line in his arm to help with labs, blood pressures, lots of other things. She said that he was already having some positive responses, but she was keeping him pretty heavily sedated to keep him out of pain. They did a chest x ray and saw a lot of "junk" in his lungs and said that there was going to be a lot of suctioning. That is really all we know for now, but I will e mail daily and post to facebook daily to keep everyone informed.


I dare to ask..."What next"! I took Jake to see his dr this morning because we thought he was getting the flu bug that is going around. She sent us for a chest x ray and labs, & called back a few hours later saying that the poor little guy has Pneumonia. So he is now on 2 antibiotics, Tylenol for the 102 fever that we have to keep breaking, and his other 2 meds for his reflux. Needless to say, he has lots of icky diapers, vomits pretty much everything up, and is feeling all around icky. We are hoping tomorrow will be a fresh start and he will keep his meds down so that he can get better quickly. If not, I'll be calling his dr back to see what we need to do to keep them down (which we already know is going to be IV antibiotics...in the hospital). I'll keep everyone updated as things happen! Thanks for all your thoughts and prayers!

In the hospital (KMC)


Well, after talking to Jake's dr, we decided to check him into KMC, atleast for the night to get antibiotic shots in him. To back track a little, yesterday we started him on 2 antibiotics, which made his stomach very upset. He didn't keep anything in him all day. Then today he quit eating all together. So that is what got us here. Since we have been here he has started eating a little and his 101 temp finally broke. He got his first round of meds a few hours ago & got set up on oxygen for the night. The dr said if he does ok with his eating tonight and his labs come back ok tomorrow, we will go home on Sunday. So, that is where we stand for now. We are in room 210, if you would like to come visit!
Hospital Update


Jake did really good last night keeping his food and mess down, so that is great. His RSV and flu labs came back negative, also good, so we are just working on on the pneumonia. Because he is having such a hard time breathing, the dr decided it would be a good idea to keep him another night and will re evaluate him again in the morning.

And the fun continues...

We waited all morning for our dr to come in, expecting to hear that he wants to keep our Jake one more night. To our surprise, he wants to keep him here for 1 week! The pneumonia is slowly getting better with the help of antibiotics. The issues is with the oxygen. He has so much chest congestion and nasal congestion that he is having a really hard time breathing. So until he can breath well enough on his own, Kadlec will be our new home. The dr said it's usually about 10 days, we are on day 3. He said that he could have a really good response to the meds and we could be out quicker, but to plan on being here thru the weekend! So, if you are in the area and want to drop in...you know where to find us!
My Sweet Little Jakey


Our little Jakey was admitted into the hospital (Kadlec) on Saturday afternoon after being diagnosed with Pneumonia. He was having a hard time breathing, eating, and just feeling icky all together. We were originally there so that he could get antibiotics in him quickly and food in him, since he had stopped eating. After we were there for a day, the doctor decided to keep him another night because he was needing a little extra help breathing. The pneumonia was really taking a toll on his little body each day. By the 3rd day he was having to work so hard to breath that he finally gave up and had to be intubated and put on a ventilator. As soon as they got him stable on the vent, we were air lifted to Children's hospital in Seattle. Which is where we are now. We just got here, so we don't have a whole lot to tell at this point, but this is what we know...
When they intubated him at Kadlec they had to completely "paralyze" him so that he would stop breathing on his own because he was fighting against the vent and doing more harm than good. The PICU (Peds Intensive Care Unit) nurse at Children's came out and told us that they
Thank you so much for all your support and concern. Please keep our little family in your prayers, and we need them more than ever right now.


Julie, Zach, Gracie and Jake

Just a fun little side note. If you look at the date of this posting, it was the day before he was 6 months old. On the flight over to Seattle, I had written his obituary in my head 3 times. There was no doubt in my mind that he wasn't going to make it. As far as I was concerned, we got to spend 6 months with our precious baby boy.
(Old E mail)

Jakey update

My little Jakey is a very strong willed little man. He is doing very well since we got here. We are working on getting the Pneumonia cleared from his chest, which will be a very slow going process. There is so much gunk in his little tiny lungs and it is thick, nasty stuff. His entire right lobe is filled with fluid, so it is getting drained about every couple hours. Right now, that is all we are really working on. We are not concerned with anything else at this point because we can't do anything else until it is cleared up. He is still on the vent, but for good reasons. The vent is letting him take a little "vacation" from having to work so hard. They do periodically throughout the day bump the vent down and let him try and breath in sync with the vent, but he tends to get too tired and they end up letting the vent do the work for him. He is making baby steps in his progress, which is all we can really hope for at this point. Eventually some things that we will be doing before we leave here is he will have a bronchoscope to check his airway, and he will have cardiology consults daily. After the pneumonia is taken care of the next order of business is to figure out where the hypertension is coming from and fix it...quickly! It is already starting to show small sings of damage to his heart, so it is no longer a wait and see type of thing. We will keep you posted on anything new that happens! We hope these daily e mails help put some minds at ease that our little man IS recovering and he will make it thru this. Daddy and I have booked a vacation to Puerto Vallarta for our "mental health" vacation in August! Ohh how I can taste the pool side drinks already!

3/26 Update

Today was a rough day. We have been floating along with the belief that things were all fine and dandy and that he was making some slow progress. Only to find out that one of the gasses that they have been using for the last 2 days were doing more harm than good. It was opening his lungs up, which is good because it helped get some of the gunk up, but bad because it also allowed the pneumonia to spread out. It originally was localized in his right lobe and now is in both lobes. So that was not really a set back, but frustrating to hear that he has pretty much made no progress. We also overheard the nurse tell our pediatrician that he is "stable" but not "out of the woods" yet. He also gets very upset when they suction his lungs, which makes his o2 sats drop real low and he ends up having to be bagged. Which is always hard to watch. But thankfully he recovers very well from it. Today's episodes were a little longer lasting than normal but they are also getting lots of nastys out of him. We also noticed today that the leg that he has a central line is was starting to swell and turn red. So the concern was that he may have a clot in that leg. So they pulled the central line and put in a pic line. After they pulled the central line they did a ultrasound and sure enough found a clot that is blocking the entire femoral vein. Sounds bad but apparently it is pretty common. So now they are using a drug to help bust up the clot. Apparently there isn't any real danger coming from the clot, but we do have to do lots of labs to make sure that his blood doesn't get too thin. So, that was our day. Once again...we are hoping that tomorrow will be a better day! Ms Gracie and my mom will be here Friday afternoon, so that will definitely brighten up our day/weekend. We miss her so much! Thank you to everyone for all your support in helping us get thru this.

Jake's Friday


We think Jake is excited for the weekend like the rest of us, because his morning started off the same as usual...high bp, o2 sats tanking, fever...but by the afternoon he was resting comfortably, lost the fever and had a really good lung suction with out having to be bagged. The reason for the turn around is the dr's decided to try something different and bumped up the vent so that it is doing most of the work and will give him a break from having to work so hard. And they put him on a Adavan drip to keep him comfortable all the time...not just when he's having tubes jammed down his throat and he's gagging. He is also getting pretty good doses of morphine to help control the pain. You ask what pain...the boy is a hard stick. The nurses and dr's are referring to him as a stingy little boy with his blood. They tried to start a arterial line today because he is going to have to have a significant amount of blood draws because of the clot, and because of a low thyroid issue that they just discovered. They can pull all the labs they need from this line. The bad news is, they spent two and a half hours trying to get the line in and couldn't. They called in the big guns and got it in on a second attempt later on in the evening. They believe the thyroid is only a issue right now because he is so critically sick. It is very common for kids with Down Syndrome to have thyroid issues, but Jake's have always been normal, until now. So they started him on some thyroid replacement meds tonight and hope to have him off them when all this is said and done. They are hoping that with his thyroid being in a "normal to high" range it will help clear up some of the other issues. And if it doesn't...no harm done. So, if everything goes right, he will continue to let the vent do it's thing and will stay comfortable so that the dr's can work on getting rid of the pneumonia. We are keeping our fingers crossed and will see what tomorrow brings. My mom brought Gracie over today. It feels so good to have our little family all together again...even if it is just for a few days. We have also been so blessed to have such amazing friends and family to help us out in ways that we could not have ever imagined. Please know that we truly appreciate what you have done for us from the bottom of our hearts. You have made the most difficult time of our lives, so much easier. Thank you. Well, off to bed I go with HUGE expectations of a better, brighter day tomorrow.
Yahh for Jakey


What a good weekend! At rounds this morning we heard something we have been waiting to hear for 9 days...the word improvement was said! Trust me when I say that tears of joy were flowing! His chext x ray for the first time is showing improvement in that some of the inflammation and pneumonia is starting to go away. We believe his little body is going to start trying to fight the inflammation any day now. We are told that it is very common for babies to make a real quick turn around when their body decides to. So for now we are just making him comfortable and helping him in any way we can. He is on a new sedation that allows him to open his eyes a little, for small amounts of time. He is very aware of us being in a room and likes to hold our fingers. He is still letting the vent do the work for him, which is great. He very rarely has to be bagged anymore to help get his breathing under control. The swelling in his leg has gone down & he has good circulation in his leg. The hope is that in a few days we will try getting him off the vent...but we'll have to see how it goes. Sorry nothing exciting to report on, but that's a good thing! Gracie and grandma left today, but will be back again next weekend with grandpa. Gracie got to come into the room today before she left because his isolation precautions have been lifted. She said she loved him and blew him kisses. Then turned and asked why he had a tube in his nose! Of all the things she could have noticed...it was his feeding tube in his nose! Too cute!
Ok, so I was going to post more of my old e mails about Jake's hospital stays, but I got bored reading my own e mails and figured nobody else would want to read them! So I am going to summarize what went down and throw in a few e mails in here and there! If you were entertained by the actual e mails, leave me a message at the end of this post and let me know, and I'll go back to that!

So from where I left off with my e mails...we were on day 16 of 28 on his first trip to Children's. The short of the rest of the stay goes something like this...

After a few weeks standing still and waiting to see what would happen, Jake started to make some progress. Baby steps, but any kind of steps are good at this point. His labs were starting to make some good turn around, he was responding well to the sedation, and he became friends with the vent. But that only lasted a few days. On the morning of day 20 we were told that his chest x ray from that morning looked worse than the day before. They had no explanation as to why because none of the tests were coming back positive. For the next few days we were told the same thing, making the situation seem hopeless once again. He was not responding to antibiotics, his lungs were getting junkier...it wasn't a fun time. For whatever reason, things turned around a few days after that. They decided to do a swallow study to see what his trachea looked like. They found that Jake's trachea had very low muscle tone and he had been aspirating his feedings. Ohh what a wonderful feeling to know that he didn't get sick...WE were basically slowly drowning him with his feedings! Talking about feeling like parents of the year (not that we had any idea, nor did anyone else)...but we still felt horrible. They then started talking about IF he ever gets off the vent, the possibility of needing a trachea tube would be very high. That was a very low day. A few attempts at getting off the vent, and a few weeks later, Jake was finally out of the PICU and moved down to the medical floor. We were there for a few days trying to get him off some of the meds and oxygen. 28 days later, we went home. Here is the e mail I wrote the night before we were discharged.


And it all comes to an end

I am really not even sure how to start this e mail. Tonight is our last night in the hospital. Jake is sleeping soundly, heart rate 120, respiratory rate 36, O2 sats 98%...PERFECT! Today he got his NG tube pulled and for a brief second, I got to see my beautiful baby boy's face free of tubes & tape. Yes, I cried. I cried because I forgot what he looked like without all the "stuff" on his face. This whole experience has really made me realize what is important & not so important in life. The old saying, "you don't know what you have until it's gone"...I get it. I really get it now. So many nights I've gone to bed and realized that March 23rd was the day that changed my life. Thankfully for the better. But could have been the worst day of my life. I still can not believe I almost lost my baby. For those of you that have never been to Children's...it's an amazing place. On the 5th floor, there is a area called the family resource center. It's pretty much a big living room, kitchen, showers, sleep rooms, and library. For the first week that we were here we spent a lot of time in this area. Feeling lost, looking around for someone to talk to, only to see other parents with the same scared, dazed look on their faces. Once Jake became stable, we ventured out of the hospital a little more, and spent less time in this area. Tonight I went back up there to leave out some extra goodies, magazines, & toiletries that we had left over and there was a whole new group of scared, dazed faces. At first I thought to myself...I remember being them...thankfully I'm not them anymore. Then I realized they needed me. Just like I needed someone. But not just anyone, someone who was once in their shoes. Someone who knew what I was going thru, and knew what to say. There was a girl (about my age) sitting on the couch, cell phone clutched in her hand, tears running down her face. I went over to her and started talking to her. Strange enough, her 5 year old daughter was just admitted into the PICU for Pneumonia! Long story short, I sat and talked to her & by the end of our conversation she was smiling. She is going to come down to the med floor tomorrow to meet Jake & see that it all works out in the end. The end of our little journey is tomorrow. We will do rounds with his team of doctors, he will have a hematology consult, and we will have a discharge team come down to help make sure we have our ducks in a row when we get home. We were told that we would be on the road before rush hour traffic, which should be around 4:00pm. With that said I need to thank everyone for all your love and support. Thank you for reading my daily updates that were more for my own sanity than anything else, and sharing you thoughts and wishes. Thank you for helping us financially, what a HUGE relief to not have to worry about a place to stay and meals. And thank you for being our friends. This whole experience will never be forgotten. So thank you.
Julie, Zach, Gracie & Jake

In the last post about Jake, he had just left the hospital after being there for 28 days. To say the least, that was a life changing experience. Zach and I learned a lot about ourselves. We learned what it feels like to almost loose a child, and how we each handle traumatic situations. We learned how to handle each other in stressful situations, and when to step way when the other is having a bad day. We learned who are friends are, and continue to be amazed by the generosity of those around us. We learned a lot. And we continue to learn everyday.
Coming home from Seattle was bitter sweet. We were more than ecstatic to be home, and attempt to get back to our norm. But it was extremely hard to remember what our norm was. We were balancing multiple follow up doctors appointments, a crazy drug regimen (weaning him off all the drugs from the hospital), little sleep, our other child, and work. There was another situation hanging over our heads that we could not escape. Jake's open heart surgery. That was the next step in Jake's "upgrades". It was something that we had been told from birth that Jake would outgrow, so we had to keep an eye on it, but never really worried about the "what if's" of open heart surgery. After Jake's month in the hospital it was decided that all the other issues Jake had were issues that were going to have to resolve them selves in time. His little body needed time to grow, and with growth will come strength. But the heart, we could fix. So on May 20th, I got the phone call that made my stomach drop. His actual surgery date. Talking about it, never really bothered me, until that day. It was real, it was going to happen, it's something we had to start dealing with. Another funny little twist to his surgery, it was scheduled on Gracie's birthday, June 22nd! It ended up being July 15th, but that's another posting!
I've added a few pics from that time!
From where I left off in Jake's last note, we had a few uneventful weeks in the Gould house, but apparently we were getting too comfortable in our little home with our friends and family so close to us! Jake came down with a little cold (in the middle of summer) that started in his eyes. Here is a e mail I sent out on June 11th, just a few weeks before his heart surgery was scheduled.
Jakey Pooh

Oh friends...here we go again! As many of you know Jake hasn't been feeling 100% for the last week. It started off with a cold that started in his eyes, moved to his nose and cleared itself out after about 4 or 5 days. But then a few days ago he started in with some really watery pooh...about every 15 minutes. This went on around the clock for 24-48 hours. He was eating good and his temp was hanging out in the low 100's. We figured this was just the antibiotics doing their thing and didn't think much of it. But then yesterday he started spiking 103-104 fevers that we couldn't break with cool baths or LOTS of Tylenol. So at 8pm Weds night we took him to Kadlec E.R. . They got a temp of almost 105. They then tried to draw labs but he was so dehydrated that they had a really rough time. They ended up getting a line in his head. Something a mother should NEVER see! The labs showed that his kidneys and liver were starting to shut down. The E.R. doctor decided that he was out of their league and flew us to Seattle Children's at 3:00am Thursday morning. Once we got here they brought him to the PICU and started a central line in his neck. In order to do this they had to sedate him which also means they had to intubate him. I am thankful to say that he is doing very well on the vent and the goal is to get him off it in the next few hours. He is not having any respiratory issues at this time. As of right now he has a low grade fever, and his liver and kidney functions are making a slow turn around. He is making small amounts of urine on his own and still has some watery poohs but are starting to get some substance to them. As much as we hate these little unexpected visits to Children's, this trip is a lot less scary than the last and it is nice to see some familiar loving faces. We will keep everyone posted as he progresses. (end of e mail)

Jake was only in the hospital for about a week for this little trip, but we did have to reschedule his heart surgery because it was too risky to take him into a surgery with his body still recuperating. The surgery date was then set for July 16th. The days leading up to his surgery really had my mind going in a zillion different directions. I was preparing myself, for the worst case scenario...Jake doesn't come home with us. We did family pictures the day before we left, because I wanted the most up to date pictures as possible, IF Jake didn't come home. I even went as far as taking a before picture of his chest so that I could look back and remember what his little body looked like before the surgery. I made sure to get as many family and friends to make that 4 hour trek to Seattle to be in the waiting room with us...not only to keep us preoccupied, but to be there to pick us up off the ground, IF Jake didn't make it thru surgery. I already made the decision in my head (and kept it to myself until after his surgery), that we would be moving, IF Jake didn't make it. I couldn't come back into this house, Jake's only home, if I couldn't bring him back with me. And I did as much as possible with my 2 kids, together, as if it could be the last time. A little extreme, maybe, but the possibilities took over and I was doing everything I could to prepare. The pics I added are some that we took the day before we left to head up to Seattle for surgery.

On Tuesday, July 14, 2009 we kissed our baby girl good bye once again and headed up to Seattle. This time was a little different from all the others though. This trip was planned. There was no emergency flight, no phone calls in the middle of the night with bad news, and we had a little time to prepare. The hard part was knowing what we were going for. Yes, we were going to get Jake some much needed help on a non-emergency basis, but the thought of open heart surgery made me cry every time I let it into my mind. So I didn't. I preoccupied myself & everyone else for that matter until there was nothing left to do but wait. We went up a day before his surgery to do some pre op appointments and get ourselves settled in. I say settled in because we were expecting to be there for 2-3 weeks, so we borrowed a friends travel trailer and got permission to have it parked in a special parking lot on the hospital grounds. There was NO WAY we were leaving hospital grounds to sleep if we didn't have to. What a blessing that was! It gave us a place to slip away for a much needed nap, or even just a little quiet time without having the stress of getting back to the hospital quickly...if need be. Jake's surgery was scheduled for mid afternoon on Thursday, July 16th. My parents, Zach's parents, and some of our best friends ventured over the day of his surgery to be with us. We all got together the day of surgery, had breakfast, & lunch, did some shopping (weird ha?...anything to keep your mind of what was going to happen next), and spent a little time with him before entering the hospital. I remember kissing up on him so much and telling him he had no idea what was about to happen in a few hours. I felt so bad for him, but happy that he was too young to even try to explain. Then the time came. We had to go to the hospital. Our family and friends waited in the waiting room while Zach and I took him to the surgical pre op area. We honestly did ok all the way up until the doctors took him from us and walked away. That was one of the most heart wrenching times of my life. All I could think was I may never see him smile again...what are we doing, give him back to me...we'll take our chances. But we couldn't. It had to be done. Now. Wow, reliving those thoughts and memories is almost as hard the 2nd time. Anyway, we were told by the surgeon that they would call us when the surgery had started. We were told to expect the surgery to last about 5 hours, and we would get calls every few hours with updates. We could also ask the receptionist to call in and ask the nurses how the surgery was going at anytime. So we made our way back to the waiting room to do anything but think about what was going on a few rooms over. And we did. Some of us went for walks and talked about anything but medical "stuff", some went for lunch, some had a stiff drink in the waiting room (I'll fess up...it was me, and it was needed)! We got the first call, took a deep breath and thought...here we go. We got 1 other call after that with news that everything was going great. About 2 hours later we got a call that the surgery was over and the surgeon would be out soon. WHAT? 2 hours into a 5+ hour surgery and they are done? What went wrong, why didn't they finish, OMG! The surgeon came out, explained that the hole was much bigger than they thought based on the ultrasounds, and all the other info up to date, and explained that the surgery actually went much faster because of the bigger hole. Hmmm, how does that work out? LOL. We didn't ask how or why, just waited for details of the surgery and were pleasantly surprised to hear that he did WONDERFUL thru the surgery and his recovery was expected to be much faster than we were originally told because the hole was so big. This I can explain! When we went in for the pre op we were told that we probably wouldn't see any immediate changes in him because they were fixing a small hole that wasn't causing any major problems, but the surgery was necessary to help all the other issues clear up faster. If his body didn't have to work so hard to help his heart, it could work on the other issues and everything will resolve faster. Still with me? So with the not so small hole being fixed we saw HUGE changes in him immediately! It was beautiful! We got to go into the Cardiac Critical Care Unit about a half hour after his surgery to see him. I will admit, he was pretty gross looking. He had a huge scar running all the way down his chest, and another little hole right under it with a tube draining out all the excess blood from he surgery (chest tube). He was a little puffy from having lots of fluids pumped into him and from being asleep for a few hours. He was still on the vent, which is a scary sight to see for anyone, but with his history, it was super scary. We had no reason to believe that he would have any problems coming off the vent, so there was not real worry there, but it's always in the back of your mind...going thru what we had been thru already. About an hour later he started waking up, but was still very sedated because of the vent. They let him fully wake up and pulled the tube. He did EXACTLY like he was supposed to and no problems off the vent. We couldn't believe our eyes...our baby boy was breathing so easily! SO EASY! We had been watching him since birth breath so hard that it became normal to us. There were no retractions under his lungs. It was almost a little scary to watch because for a brief second we worried that he wasn't breathing good because it was so effortless! I think we sat and watched him breath for a full day! We were able to hold him the next day. Want to talk about tough? Mr Man was 100% off all narcotics and only taking Tylenol for pain 48 hours post surgery! Less than 36 hours after surgery he was sitting up playing, and on day 5...we went home! Yes, 5 days after surgery! That surgery made every difference in the world. Here are a few pictures from that quick trip. My two besties made us the best gift ever! All the other times Jake ended up in the hospital, I would find a computer with a printer in the family area and print off black and white pictures of the family to hang up in Jake's room. Just a little something to help us miss our life a little less. Anyway, my girlfriens made a BEAUTIFUL borad with a bunch of pictures of our life with Jake on it! Another is a picture of all my "lucky charms" or as we liked to call it, my Mr. T look. And a pic of Jake less than 48 hours after surgery.

I had intended on posting a lot more than just his open heart surgery tonight, but that one took a little too much out of me. So off to bed I go, but not before I go kiss my babies goodnight. You do the same!

After we got home from the hospital from heart surgery we spent the rest of the summer trying to make up for lost time. We had our niece staying with us for a few months. She was 3 and a ton of fun. She and Gracie were two little peas in a pod! We wanted to make the most of her visit with us, and do all the fun things we felt like we had missed out on being in the hospital so much. So we made up any excuse to have a party (I do love a good kids party), we went to gymnastics once, if not twice a week, multiple trips to the park & river, movies, slumber parties....on and on and on. It was a busy and exhausting summer, but much needed.
In October we finally did Jake's 1 year well check. I get a lot of grief from my friends because I'm not one of those people that cry over much. I'm not sure why, I just don't. So if and when I do cry, it's usually behind closed doors & is rarely talked about. It's just me. Not trying to act tougher than I am, just not something I do. Anyway...the day we had Jake's 1 year well check I sobbed like a baby...in the car. For the first time in 13 months our doctor told us there was no major concerns to watch for at this point. We had lots of things to keep an eye on, but nothing that needed attention now. A few days before his 1 year well check we saw our cardiologist for his post op from open heart surgery and we were told from a cardiac standpoint Jake was a "boring patient"! BEST WORDS EVER!! I think our cardiologist was a little bummed to see Jake go. He kept calling him his little buddy! We were told he would see him every 6 months for a few years, then once a year for life. So in 1 week we had 2 doctors tell us the words we had been waiting to hear for 13 months! Ahhh!

With all this great "boring" news in hand, we took Jake back to Seattle to meet with the plastic surgeon to have his fingers separated. For those of you that haven't actually met Jake, he was born with 2 fingers on each hand fused together. They were completely separate fingers, just joined by skin. If you didn't look real close, you wouldn't even know it was like that. Anyway, we took him to Seattle and as a outpatient procedure Jake had his fingers separated on each hand. He came out of the operating room with big blue boxing gloves on each hand, and he was ready to fight!! We had to laugh when he came out and was handed to us because he looked like he had broken both arms! He had soft casts on all the way up past his elbows! The surgeon informed us that it had to be that way because these little guys like to wiggle out of their casts, so they put the casts on over their elbows to have a 90 degree bend and make it impossible to get out of. Zach and I laughed...OUTLOUD, and said that if there was a way for Jake to get out of those casts, he would be out of them. The surgeon said there is NO WAY he will get out, but if for some reason they came apart, got dirty or wet to call the on call surgeon and they would walk us thru how to put it back on. We got home late that evening, picked up Gracie from my parents and put the kids to bed. Zach was in the garage doing what men do in garages (I'm not sure what), and I was getting things put away in the house and getting ready for bed. I went in to kiss my Bubba good night. I was barely 2 feet in his bedroom when I felt my dinner about come up. There it was, one of Jake's casts that were IMPOSSABLE to come off, lying on the floor next to his crib. I snatched Jake up out of his crib (still trying to keep dinner down) and ran to the garage, flung the door open and yelled for Zach to look. Apparently my dramatic entrance was way too formilure for him because he came flying at us thinking he was once again going to be doing CPR on our son. When he noticed he was breathing and everything seemed to be ok he asked me what was wrong. I held up his bloody little fingers and said, "Look what Houdini did". Zach started busted up laughing, me not so much. Still at this point trying to keep dinner down (I don't do blood). All I could think is great, it's 10pm and we are going to have to drive back to Seattle in the middle of the night to have his hand rewrapped. You can see how logical I am when faced with such a traumatic event...blood. LOL. We called the surgeon on call, she too laughed, and told Zach how to rewrap it. I don't know why I always get shocked, but from nowhere my husband comes in from the garage with the best "first aid kit" known to man. We could have our own little ER right there in our garage. He had everything we needed to do it all ourselves. Which was good because Jake got those "impossible to remove" casts off 3 more times! We actually went out and bought a bunch of the stretchy casting tape to match his outfits, that's how often he was getting them off. After about 6 weeks, of multiple casts, and temporary night splints, Jake's fingers look amazing. Life is getting a little more typical everyday.
Jake's fingers before surgery!

The "impossible to remove" casts.

In late October, Gracie started feeling icky saying that her "throat was mad". It took me a while, but I finally figured out that she had a sore throat. I took her to her doctor, and sure enough she had strep throat. She ended up being on 2 rounds of antibiotics and having it for about 3 weeks. Of course we KNEW there was no way Gracie was going to be in our house, and Jake wouldn't get sick. The wind blows the wrong way and Jake get's sick. Sure enough...Gracie, Jake, and I all had the flu. Not just any flu but H1N1. I'm not going to lie...it sucked. We were all out of commission for about 3 days. After the nastiness when away we all started to feel better and went about our normal days. But then Jake started getting sick again. But it was different this time. There was no vomiting involved with the flu that we all just got over. And now he had very high temp, was vomiting uncontrolably, and stopped eating. After about 2 days of this we decided to take him to the ER thinking that we needed to take care of this before he got dehydrated. Because Jake has a history of pneumonia and respiratory/heart issues, the doctor did a chest x ray and found that part of Jake's stomach was showing up in his chest x ray. FYI...it's not supposed to be there. So he ordered another x ray of his abdomen...then called Med Star to fly us to Seattle. Jake's stomach was so full of "stuff" that it was pushing up into his lungs, thus, showing up in his chest x ray. This time it was just Jake and I in the jet, Zach stayed behind to get Gracie taken care of and drove over a few hours later. Once we were in the ER at Children's (not someplace we were used to seeing, normally we get sent right up to the ICU...things are looking up right?!) anyway, once in the ER the doctors gathered around, looked at the x rays and decided they wanted to do another test. The ER doctor in Richland was pretty sure that Jake had a bowel obstruction. The Children's docs...not so much. They took him back and did a test where they had him drink dye and watched where it went. It did everything normal, until it was supposed to leave his stomach and enter the intestine. It just kind of sat there and trickled into his intestine. Hmmm...What’s that about? It's not blocked, he's still pooping. Turned out that he had a duodenal atresia. Long story short, there is a little attachment area between the stomach and the intestine called the duodenum. The duodenum opens up at birth and lets anything that is in the stomach pass thru. Ever wonder why the doctors and nurses get so excited about that first nasty black poop? That's how they know the duodenum opened up! It doesn't always open up and the new born baby gets taken right to surgery to have it opened! Well Jake's opened up, but not all the way. Actually we were told it opened up about a quarter of the way! The reason that we were just now finding this is because when he got the flu, it irritated his stomach and that small opening swelled shut...looking like an obstruction! Jake spent about a week in the hospital in isolation getting rid of the flu, the stomach swelling went down and we made plans to have the duodenum fixed. Yes, another surgery. But this time we were excited. This finding answered SO many questions. It explains why Jake had such massive reflux. It explained why he had such a hard time gaining weight, even after his heart surgery. It explained why his belly ALWAYS looked big and bloated! And the best news, after the surgery, his reflux would be gone! So, on December 7th Jake had his 3rd surgery. He spent 10 days in the hospital, and has been a new boy ever since! His reflux...GONE! He is on NO MEDS! First time ever! He eats, and eats and eats like a teen age boy. And he love everything! He has so much energy & exudes how great he feels. We FINALLY have our little boy exactly the way he should be! Ahhh. We got home, got him caught up on all his immunizations, and started his therapies up again. Life was finally normal. Normal freaked me out...bad. I didn't know what to do with a typical life. We just spent 15 months with a child that we almost lost 3 times. We couldn't keep him healthy for more than 3 weeks at a time. The smallest illness would land him on a vent, or at least a few weeks at Children's getting some kind of treatment. Life had been crazy for 15 months, and then it just stopped. I found myself having palpitations, and anxiety waiting for the "ball to drop". Because it always did. The ball ALWAYS dropped. I was getting to the point where I felt like I needed to see a therapist to help work this out of me. I needed to find a way to live life again without the fear of the ball dropping. I looked back and realized that I handled the stresses of Jake's illnesses by writing about them, and what we were going thru. A lot of you thought I was doing it to update you, and I was...a little. But it was mostly therapy for me. This is why I started this blog. I wanted to see if I could write my way thru it again. And I did. We are finally living life again. I'm not going to lie...The ball is still lingering around me, but Jake has proven that he is stronger and healthier and can handle some of these little bugs that are going around. So do I think the ball will never drop again...NO. Do I think that our days of Seattle Children's are over? No. Do I keep Jake in a bubble out of fear? No, never have, never will. Do I pay very close attention to him when he gets the sniffles? Yes, but I don't HAVE to pack him up and take him to the ER. So this is were we are in Jake's life story. I will post to this page with updates on him. Thank you for following us on our journey!

Jake 16 months

Our Family