Fundraiser!!

Please help our fundraiser!! Friday is the last day and we are far from our goal! http://www.booster.com/teamjojocarepackagedrive

Birthday!!!

Our miracle boy is 4!!!! I still can't believe how far we have come. Praise God for helping us make it this far. If you have read the previous post, you know that the next few days are the anniversary days of his most challenging days. It's hard to grasp that just 4 years ago he was fighting for his life and now he's fighting with his siblings!! I am in awe of this boy 😊 He is a survivor, and  I am blessed to be able to say that I'm his mommy😍

Now down to the facts: he weights 31.1 lbs , which puts him in the 10 percentile. He has only gained 1 pound since the last time he was at the pedi, 3 months ago. I'm still figuring out if I'm happy with that or not😔 He's still following his own curve and his dr didn't make a big deal about it. Plus he eats everything in sight so I guess we will just have to accept him being a skinny minnie 😉

He was 3feet 3 inches, 22 percentile!

He is doing really great😊

Now if we can just survive the winter without any major hiccups, we will be in great shape!

This is the story of Joseph's beginning:

   We found out we were pregnant with our 4^th child in February of 2010. We had not planned on having another child, so it came as quite a surprise. In March I had heavy bleeding and cramping. Turned out to be a blood clot above my cervix, and was put on partial bed rest. On May 20 we did a second sono to see if the clot had resolved itself. I tried for 3 days to get the doc on the phone to see what the results were. Finally the nurse told me just to come in, so he was forced to look at my sono. May 25 I went in to see my dr to get the results from the latest sono, our baby was going to be born with Congenital Diaphragmatic Hernia (CDH). He said to stay positive until we had seen a specialist. Before we had the diagnoses or even knew it was going to be a boy. I believe God wanted me to know that Jo was going to be born with challenges.  He sent me a dream, that our baby was a boy and we were in a hospital room and he wasn’t breathing. So when the dr said to stay positive, I already felt the truth in my heart.

  May 26, 2010 we met with a high risk ob specialist in Lubbock Tx, Dr Hales. He performed a 3D sono and it confirmed that our baby boy would be born with CDH.  We sat in the consultation room for what seemed like years going over what exactly CDH was. We left still not completely understanding. On our way home that day just as we were getting close to Seminole Tx, the tire on our Yukon just about blew, if not for that kind man seeing it and stopping us. He helped us get to the nearest tire place and stayed to make sure we got help. It was the icing on the cake. All I wanted to do was go home and shed the tears I had been fighting all day.

  June 15 we met with Dr Jane Goldthron, surgeon that would perform Jo’s surgery. She seemed very optimistic about the whole thing. The survival rates they had at their hospital were 40-60%, depending on the severity. She asked if we had a named picked out. She was very pleased with the name we had picked. These babies need strong names is what she told us. The summer pasted with lots of Dr visits for all, Getting our oldest ready for his first day of school ever and just hanging out. Before we knew it September had arrived.

   September 14, we had a visit with the Dr Hales and were checked in to the hospital. They placed a medicine in my cervix to start the process of thinning it out. On September 15, at 7:00 am they started the induction process. I was confined to my bed so they could monitor Jo’s heart rate very closely. When he started talking of breaking my water, I refused to let him until they gave me an epidural. I know from experience what happens when they break your water at not even 3 centimeters dilated, had that done with my first. It was not a fast moving labor like they all really wanted it to be. But it progressed a little each hour. We met not one, but 2 teams of NICU personnel while we waited for Jo to make his grand entrance. The day shift and the night shift. Dr Carroll was his neonatologist, who was there every step of the way until discharge.

  8:55 pm Joseph, all 7lbs 7oz of him, made his grand entrance into this world. For a brief moment they held him up so I could see and he let out the sweetest cry. They had told us to expect him not to but he showed them! They got him intubated and I got to see him for one more second before they whisked him away. His daddy went with them while I finished up in the delivery room. At 3 am Drs Carroll and Goldthron came to our room and said he’s not doing well at all. The only option left for him was ECMO. They said he’s to sick (blood gases were at a 230) for it, but we want to give him a chance anyway because he’s a fighter. He had to move to PICU for ECMO. When I went to see him for the first time, he looked like a beautiful healthy baby that just needed to be scooped up and held. September 22, they started trialing off ECMO, he only lasted 5 minutes at a time. They said he could no longer be on it due to having bleeding in his head. They wanted to do surgery to fix his PDA in hopes that it was the cause of him needing ECMO. We waited around all day for it but emergencies with other patient’s kept happening.

  September 23, is a day forever burned in my mind. The casual and unhurriedness of yesterday seemed gone and I had not gotten the memo. I arrived thinking Jo will go into surgery get his PDA fixed and be one step closer to repair surgery. Boy was there a big shock waiting for me!! His surgery, that was not top priority yesterday, had become an emergency. My husband was not there and for some reason the severity of the situation was not registering with me. So I told him he didn’t need to be there all should be fine. He went back for surgery and the kindest, tell you like it is, nurse came to the waiting room and tore my world apart. She asked if my husband was on his way, confused I replied no should he be. She took me by the shoulders and said “Susie Joseph might not make it out of surgery or be able to survive without ECMO” For the first time in 7 days the reality of how sever the situation was hit me and I broke down. The nurse called my husband and he got to the hospital as fast as he could. I remember my mom taking me in her arms and telling me maybe it would be best if God called him home. Those where not the words I wanted to hear but the very ones I needed. All throughout my pregnancy when the bad days came, I would ask God if your will is not for Joseph to live please take him now, before he has to suffer. So in that waiting room, with my momma holding me tears rolling down both our faces, I told God he is your child and if it’s your will to take him home, I will find a way to accept it. When surgery was over my husband, my mom, my sister and I all went to his room to sit with him. The PICU Dr on call that night said “we will do everything we can for him but ECMO is off the table.”  All I could do was sit at the head of his bed, rub the top of his beautiful head, whisper sweet loving and encouraging words to him and wait. 1, 2, 3, 4, 5………… the minutes turned to hours and though he was not out of the woods, he was stable. His surgeon came by and told us they would be doing his repair surgery the next morning.

   September 24, they did his hernia repair. They had to use a gortex patch to patch his hole.  His surgeon said everything looked good inside of him and he had more lung then they thought. He did relatively well those hours after the surgery. The next day as we were heading home, they called and said he was having seizures. They immediately put him on meds, and ran tests to see what was causing them. He continued to have them off and on for the next couple of days. One seizure he had was so severe that his heart stopped and they had to do chest compressions. They were finally able to get them under control. He hasn’t had any problems with it since then. They said it was most like just a side effect of ECMO and they never showed up on the EEG machine’s readings.

  October 4, Was the first day I got to hold him. It was one of the best days of my life. I held him for 4 hours and I was even able to change his diaper for the first time. On the 9 he required his 3^rd surgery for a bowel obstruction. On the 13 he was finally stable enough to be moved back to the NICU, he was almost 1 month old. On the 14 they tried for the 2^nd time to feed him, the first attempt he got a bowel obstruction, this time it only lasted a little while. On the 22^nd I gave him his first bath. On the 27, they put him on c-pap, he hated it with a passion, only lasted for 24 hours. Dr Carroll said he had never seen a baby fail so miserable in his life. He went on the conventional vent. He gradually got worse as the days progressed. They tried one transfusion and it seemed to help. On the 31^st he seemed to be declining by the hour. They started another transfusion but he just kept getting worse. This was one of the many days that we saw what an excellent team we had behind us. It was as hard on the Dr to see him struggling, as it was on us. Dr Carroll did everything he could think of to get him better. They called in to the other hospital for a drug that was an attempt to get his pulmonary hypertension better controlled. Then he was placed back on the oscillator vent, his lungs had went back to the way they had been when he was born. All that and a night of rest seemed to be just what he needed.

   November, third time was finally the charm on feeds. He finally was able to stay on feeds for more than a few days at a time. Most of the month was spent getting bigger and weaning his vent, meds and increasing feeds. On the 26 Dr Carroll started talk of extubating him. The following day as the nurse was putting him in a new position he pulled out his tube. Since that was the plan for the day anyway, they left it out and put him on high flow nasal canulas. With the tube gone we got to try bottle feeding, he did not appreciate it the first time.

  December 3^rd we tried again and he took 15 cc from the bottle. He continued to do well with feeding. On the 9^th he got his first big boy bath. The NICU is not exactly equipped for big babies like him. They had to search for awhile before they were able to find one big enough for him. He graduated to the floor this month and that marked the end of bottle feeding. On the 29^th they did an MRI and placed in a g-tube for feeding. The following months were spent lowering meds, lowering oxygen and flow, getting feeds up and trying to get him over his very severe oral aversion. On Feb. 22^nd he was placed on low flow nasal canula’s. I was finally able to find a pacifier that worked great for him. It was thinner then regular ones and I think that made a big difference for him. His primary nurse finally figured out a way to get him to be interested in bottle feeding. We would leave him in his bed to keep stimulation as low as possible. Prop him up high and he would at least latch on, which was more than he had done in months.

    March 2^nd he got really sick, I was not with him on that day. The next day when I arrived, he was to the point where he had needed an I.V. because he was not even able to keep clear liquids down. Dr Carroll called for an upper GI study. We went down to the lab and got the dye and first sets of X-rays done. We got to his room and settled in. They came for another X-ray, at this point Jo was miserable nothing we did eased his pain. Kelly helped me get situated in the rocking chair with him. She then went to see the results of the latest X-ray. I sat there rocking Jo and wondering what was taking her so long to return. When you’ve been in the NICU as long as I had at this point, you know they get caught up helping others or sharing stories. But this time it was not one of the above mentioned things that was keeping her. No this time she was working on composing herself. You see when you’re in the NICU you become family and when one hurts, they all hurt. As I sat there rocking Jo and hoping he would feel better soon. I watched as first Kelly appeared through the door, then Dr Carroll and finally by Shelly the charge nurse of the day. My heart began to sink as they approached us and pulled the curtain. Dr Carroll knelt down beside us and placed his hand on Jo’s back. While rubbing his back he said “Jo has re-herniated and he will have surgery first thing in the morning.” All I could see in my mind was that precious baby from 5 months ago, laying so helpless and all the struggle’s he had faced. We were in the home stretch and now we would be here for months, maybe even years. I was devastated to say the least. He had surgery bright and early the next day. His patch had come undone from where she had sewed it the first time. She was very surprised with how healthy he looked on the inside.

     Those feelings and thoughts I had when they said he would require another surgery, proved to be incorrect. 16 days after that surgery and 187 days since his birth, Joseph finally came HOME on March 20, 2011. His journey after coming home has not been smooth sailing, we have faced many ups and downs, and probably will face many more.  But today, as we have just finished celebrating his 4^th birthday, I can say that for a child living with CDH he is doing AMAZINGLY AWESOMEJ

 

 

 

 

 

 

Long time no post!

Hello there😊 I figured since its been forever since I updated. I'd use snap shots of what I had posted on Facebook. So here goes:

To bad that's not the case anymore😔

He Loves his uncle Isaac😊 This is from July 4th weekend 2013.

I jinked it😔

He Loved that puppy, he ran away😔

Pictures aren't to clear but I wanted the caption more then the picture.

He was sick once a month all winter long😢😷

This Kid😂😂

That day is hard to forget😔

He had to have his G-Tube site surgically closed😔 this ended our 21 month stretch of being hospital stay free😔

We did a T-Shirt fundraiser with these shirts😊

He loves Trucks😃

😂😂😂

😳😁

So we had a little scare with Jo😔 He was sick, his lips turned purple, and while he napped his left hand went purple. So we took him to the ER, had an early visit with his cardiologist, and got a final opinion from his pedi. He checked out great😍 My fear was his lungs and we would need to add another specialist😳 Blessed that wasn't the case, hope it never comes to that but only God knows the future!!

He loves outside!

There you have it, the last year all wrapped into one post😊
(-: Susie22 :-)

June 12, 2013

Hi:) we have been doing good, Jo's being a troublemaking, stinker of a boy. He's walking, running and talking up storms. He's 27 pounds of pure ornery BOY. Sometimes it's wonderful and others, like today, It's tiring! We are enjoying summer break:) Hoping to get some good quality time in with my kiddos, to heal and enjoy each other a little more then we have been lately. I wanted to share something I read today,   "The normal response to trauma is first to freeze, then to try to run, then to fight, and finally, to submit." thought it was interesting, many  CDH families deal with PTSD, my family included. My thought on it is we did it backwards, we submitted, we fought, were still in freeze mode and not sure if we will ever run from it. Though I wish I could, I'm not sure how you could run away from such a little person who depends on you so much. Is it overwhelming, absolutely. Is it hard, definitely. But it's the most rewarding thing I have ever done, to see him do things drs said he wouldn't, he couldn't and shouldn't, makes every moment in this INCREDIBLY rocky roller coaster of a ride, worth it:) 

We have an appointment with his cardiologist tomorrow, I'm a nervous wreck and then some. We also have an NICU graduate reunion at the end of the month, which I'm very much looking forward to:) Love showing off my little miracle boy!! 

January 3, 2013

Hi all:) It is the start of a new year once again. Before I go any further let me just say how fabulous Joseph is doing this winter. Granted he is sick every other week,it feels like it any way, we have not had to be admitted to the hospital:) We have had to go to the ER twice!! I'm so grateful for how strong he has become. He's talking up a storm and learning new things everyday. Finally broke the 20 lb mark and holding steady @ 23 lbs, even with being sick so often, hope to have him at 25 maybe even 30 by his 3rd birthday!! Also it's time to start potty training or work on getting rid of his pacifier, not sure yet which one to do first. The other kids are all doing great too. The boys are enjoying winter break. They are having lots of fun playing with their new toys.

  At the moment I'm feeling as though our life is on hold not moving forward, just plain old stuck. I have spent the past 2+ years living moment to moment, giving in to easily, not being the woman, wife or mother they need me to be. I have not disciplined like I should, have not let my experiences mold me into a new person. I feel lost and alone. I know God is with me, but I don't feel him. He has proven time and again how much he loves us, yet we only call on Him when we have a need. Not everyday like we should. I have witnessed so many miracles since I found all these families with babies like mine. Yet I can't shake the feelings of anger, hurt, loss, and guilt, I have my son when so many have to say goodbye to theirs. I'm tired of it all and come to my friends to ask for prayers as I try to not only grow my relationship with God, but mend the hearts of my husband and children. I see the toll these years have taken on them and its time for the healing to begin. 

 

  I have many things I want to do this year, but only when I feel our family is mended will I start. Please pray for us as we embark on the road to a happier and maybe a little healthier family. 

  

October 2, 2012

Hi all:) hope your having a fantastic start to this fall season!! We are enjoying the cooler temps for sure:) Joseph is doing wonderful so far, hoping it will continue!! Anyway I'm sure your wondering what the title is meaning;) Well (please be seated for this) WE ARE MOVING BACK TO WELLINGTON!!!!!! Yes we have lost our minds, and we can't find them anywhere!!!! Maybe there in Wellington;) so that's what my life will consist of once again, I just wish we knew when it was going to happen and where we are going to live. Hopefully by this weekend we know something!!

That's all for now:)

August 28, 2012

Hi all:) We have been extremly busy these last few weeks. We decided to move back home:) Boy did i forget what a dreaded task that was:P Between finding a place to live, the hundred upon hundred's of phone calls i had to make, getting the boys registered for school, the move itself and in all the comotion all 4 of the kids decided to get sick on me one after another. It was enough to drive me bonkers 8P And it ain't over yet:/ This week or weekend we get to move again8P But i will be glad to be in our own space again:)Now to go through and get rid of things, hopefully once zack is in school all day i will like i have more time. Really looking forward to our apartment, it will be totally remodeled, wonderful for joseph. God took care of us once again:) He is a wonderful provider:) Update on Joseph: he is doing fantastic:) Being a very unruly little boy!!! He walks, runs and try's to go backwards:) Hard to believe he's going to be 2 in a couple of weeks. I have lot's of idea's floating in my head, so stay tuned for a more in depth post about that. Right now my focus is on getting us situated once again. One thing i will say is there is a T-Shirt involved. So let me know if you'd be interested in one:) Have a blessed day and I'll be back soon:)

July 3, 2012

We have had a busy 2 weeks in our house. Joseph decided he wanted to heat things up around here, as if the weather wasn't doing a good enough job at that. He had a gagging episode on June 22, he really needs to learn to give mama better present's:( That's how i ended my B-day, jumping out of bed, dashing into his room, to help him get the stuff out:/ Went to our buddie's 2nd b-day the next day in the evening. Sunday he had a runny nose with a cough here and there, tried my best to keep mama bear at bay, but by 11 that night he was just getting worse by the minute. So a little after midnight, I decided to take him to the E.R here in town. They did a great job at taking care of him, he was admitted on monday morning and got home on tuesday. The doc said it was his reactive airway's. He loved being home so much that he started walking big distance's with out falling down:) Then this past weekend he started running a fever. He was already on antibiotic's, so i knew it had to be a virus, and the dr confirmed it today when they did a CBC, and it came back perfect:) He also wants him on breathing treatment's twice a day from now until who know's when:( and to see him every 3 month's. I didn't want this for him, but i'm thankful to God for it being something we can manage:)

I'm without my oldest 3 this week, they went to spend the week at grandmas. It's nice to have this quality time with joseph, especially since he hasn't been feeling very well. But I do miss my kids a great deal. They are a handful most of the time, but i sure do enjoy there company and the busyness that they bring.

Well that's all for now:)

June 23, 2012

Well it feels like we have been extremly busy since school let out, but looking back on it we haven't done much. I think it just feels that way, cause having all 4 kids around 24/7 is a madhouse, especially when zack and chloe fight like cats and dogs. I'm trying my hardest to enjoy them, but when theres those days that it feels like they fought before they even woke up, it's overwhelming and exhausting8} Then theres Joseph:) I love all the new thing's he's doing: Climbing thing's, Standing up in the middle of the room, Walking short distances and of course the growing vocabulary: But at the same time it makes me sad:( He's my baby:( We went to his eye dr and cardiologist on 6-12. His eye's are the same as last time and he's got the right prescription, now i just need to get the nose piece fixed and maybe new lenses cause his are pretty scratched and he should be good to go. We go back in december for his eye's. His cardiologist was very pleased with everything, said it looks great, see ya next year, Love it:) We also got to stop by the hospital and see our extend family, love to see there reaction, especially when it's someone who hasn't seen him in a while. Dr Carroll told me he had a conversation with the dr who trained him. Told him how very sick joseph had been that he was to sick to even go on ECMO, but dr G and Dr Carroll wanted to give him a chance anyway, the guy was amazed that they had done it. We will be forever greatful to those 2 for giving joseph a chance, not many dr's out there would have. Boy has Joseph proven to them what a great decision it was. We also had lunch with some of the ladies from my side of the family:) It was a lot of fun but way to rushed for me, having 2 dr visit's in one day is a headache. To top it off we spent 3 hours at his cardiologist because they needed proof that his insurance would cover the visit. His pedi office said they didn't need it and it took forever to get it. But it was a great day, even if we spent more time in lubbock then we wanted to. I hope next time we can at least squeaze in some shopping, I can not remember the last time i was in an actual store, which means it's been to long. There is Wal-mart, but to me it's not a fun store to shop in, probably because it's connected to groceries and i despise grocery shopping!!! Sorry for the rambling:P Well that's all for now hope you enjoyed peeking in, until next time:) Have a blessed weekend:)

May 19,2012

I cannot believe i haven't updated since january!!!! So let's get started:)

  February: We went to seminole to hear our brother-in-law preach for the first time. We are very proud of him and he did an awesome job:) We left Joseph at home and one of my wonderful sister's from seminole, made the trip up to stay with him for us. We wanted to protect him from getting sick. It was difficult to leave him, even though i had done it countless times before, when he was in the hospital, and he was in great hands. He did better then i expected, which made it easier for me to be away. When my sister left, she left in tears and said" I don't know how you do it, I don't think i would be able too." My reply was simple, " i just do." To me Joseph was easier to take care of now, even on his tube feeds, then when we first brought him home. I remember those first few day's, I would have brought him back to the nicu in a heartbeat if i could have. But that wasn't an option, I finally had my "healthy" baby, that i had been wanting home so bad for six months, that i had to power through. That's what i did, so much so that i isolated myself from the people that come into my home to help me. They have not been consistent, so i try to be superwoman even when given a sidekick. It is a struggle to release the care of my child to someone, when that is all i waited for all those months.

  March: Brought back so many memories, heartbreaking and wonderful, all within the first 20 days. Early march we thought back on that day when joe's patch had come undone and he had his 6th surgery, Then just a few days later we celebrated the one year anniversary of his "breaking out of the NICU day." We also went back for his swallow study update and he passed with flying colors:) Back to solids we went and he did awesome. He did catch a 24hr bug, but handled it like a pro.

   April: We got to go spend easter with the family in seminole. Had an awesome time and Joseph learned to pull upto standing:) Also had another 24hr bug. His yearly evaluation with ECI, which he did great in all, except physical, which he continues to improve in daily. We had field trips for the boys, which made for a few busy day's.

   Now for this month, i can't believe it's already may, and that it's almost over. We have had a busy month, doctor visits, therapy visits, school things and best of all the company has been great:) Joseph has learned to cruise and climb on things, right about now i regret always calling him monkey, he is turning into my most daring child. I believe he thinks he has over come so much that he is invinceable to any and all things:) He's been sick again, i'm thinking with strep, although his blood work came back negative. He had high fever with throwing up(Or severe gagging because his nissen, resulting in me using his button to get it out) followed by refusing to eat or drink anything by mouth for 2 day's. Thankful we still have his mickey, or we would have ended up in the hospital. The dr want's to leave in his mickey till he's 2 since they had to put it back in a second time. Frankly i don't care if they leave it in longer, i don't know how i will get through next winter without it. He started standing by himself for 5 seconds in the middle of the room today, so walking is just around the corner. I'm so ready for him to do it, but at the same time it makes me sad:( He's blowing me away with how far he has come, so many day's we wondered if he would ever make it this far. I know we are in a quiet place right now with his CDH, that he could in the blink of an eye take a turn for the worse, but i'm enjoying it and taking one day at a time.

  It's hard for me to believe that Isaiah is going to be 7 in a few days:( I feel so unconnected with my kids since joseph was born, i spent so much time away from them, it breaks my heart to see the pain it's caused them. I see it most in chloe, she was a baby when joseph was born and by the time he came home she had grown up so much. I'm hoping this summer we can do alot of bonding and one on one time with mommy, as you can see on my pinterest page, i've got lots of ideas:) Until next time:)

January 28, 2012

Joseph has been doing wonderful lately and we are enjoying it:) We have to do the occasional breathing treatment, especially when i forget to turn the humidifier on at night. He is scooting all over the house and will kick and squirm to get down when being held. Physical therapy is coming 3 times a month and every visit is getting better then the last. She said this past week that he is getting stronger everytime she comes:) He likes to tease me by making it look like he's going to get in the crawling position, but then quickly pushes back to sitting, tilts his head and gives me a smile while clapping his hand's. He love's attention and praise for something he does, can't recall if my other kid's did or didn't. I find myself constently having to go search for him, he's getting pretty fast at scooting, and he loves it. His speech is getting good too, he say's mamma, dadda, ball and waves bye-bye, and almost say's it too. He blow's kisses and gives hug's:) He gets mad and either growls or screams when his brothers or sister tell him no or take something away when they are playing. He is still loving music and listening to us read. His dietician was here yesterday and he weighs 20 lbs 13 oz, he sure feels it to. He had gained a whole pound from her last visit. She also gave the go ahead to give him some solid food's, which joseph is very appreciative of. Making appointments for him on monday, hopefully his dr won't be to mad for not waiting on him. I feel like he's good with it and am watching him closely when he does eat. She also say's that the drs he had in amarillo are big pushers for feeding tubes. She also think's that the swallow study they did was not accurate, cause he had just been intubated and was still on some sedation med's. It upset me yesterday and had me second guessing if the surgery was something that he would have needed. But it's in the past, no sense in wasting away my time worrying about thing's that can not be changed. I have come to the conclusion that i'm going to look into the cost of optaining all his medical record's and hopefully understand more about how his inside's work and look, to be better prepared next time he goes into the hospital. Thanks for reading and Know that no news means good or great news. Until Next Time:)

Shutting down share site.

Shutting down shutterfly share site. I will be posting all the updates from there to here. Also making changes to this one.