Friday, October 3, 2008

Joshua's Story... REALLY LONG! (Graphic pictures at the end)

Hi guys I decided to write the entry about Josh's surgeries today since I am sitting at home and sick, my hubby is sick, and Josh is sick. We all have either really bad colds or sinus infections. I just got done taking antibiotics two days ago for a really bad sinus infection and now I feel just as bad as I did 10 days ago. Sigh....... Seems when school starts up again we just pass stuff around. Plus it is getting cooler here in Minnesota really fast!

Everytime I rant or rave about the same daily routines, day in and day out I always add in there I am not complaining I just get tired. When Joshua was born our world was turned upside down in the blink of an eye.

For those who haven't read my whole journal "Daily Life of Mother of a child who has Craniosynostosis" you may not know the whole story. I am not telling the whole story today because it is to long but I will try to give the short version.

I took many home pregnancy tests when I thought I was pregnant with him. They were all negative. One day hubby and I were laying on the living room floor and he got kicked in the head. He said "I don't care what those tests say, your pregnant!".

So I made an appointment and found out that yes I was. We had NO idea how far along so we were told that was the reason we were being sent immediately for a level 2 ultrasound to get a better look. We got to Fairview Riverside Hospital at the scheduled time to have the doctor come in after I got changed and ask "So do you know what's wrong with your baby?".

That was the beginning of my world being changed overnight. We were shocked, sad, angry, confused just to name a few that we were NOT forewarned that thought anything was wrong. We felt sideswiped. She clearly could see we had NO IDEA what she was talking about so after taking the images she needed she let me get dressed and met us in a meeting room. She narrowed it down to 3 things it could be.

(I am copy and pasting from my AOL main journal here to not have to retype it)

1. Acrondysplasia

2. Something Chromosome related, like downs syndrome and

3. Craniosynostosis.

His limbs were shorter then normal in the ultrasound. She asked if I wanted to do an Amniocentesis that they could then tell me if it were genetic or chromosomal abnormalities. But I am a very high risk pregnancy, I have never carried full term. And doing the Amnio could have sent me into early labor, so we told her " Its not going to change anything, nor help us to know right now, so no I am absolutely not going to take the risk of bringing him into this world any sooner then he needs to be.

We left the doctors, crying and feeling all the same emotions I wrote a little bit up. We went home and did searches on the internet for all 3 things it could be. No text books, nor internet sites can prepare you for what your life is going to be like when your child is born especially when we were not sure what he really had.

Well 4 weeks (yep thats it from the time of that ultrasound, so 5 weeks total) he decided he was ready to come into this world 2 months early. I delivered him at Abbott Hospital in Minneapolis, Mn because Children's Hospital is right across the street. I actually went to Methodist Hospital first, where my Obgyn was after my water broke, but he sent me by ambulance downtown because he said they were not equipped to deal with my son.

He was born on October 19th, 1998 and thats the day my whole life changed! The first two years seemed like a whirlwind! When Joshua was delivered they had a team of PICU (Pediatric Intensive Care Unit) docs there who wisked him away as fast as I could blink it seemed. We still at this point had absolutely no idea what was wrong with him! What a helpless feeling!I never knew it was possible for your heart to hurt SO DEEPLY and BADLY! I wanted to crawl in his body and take it all away!

Joshua was born and taken to PICU (pediatric intensive care unit) immediately. He weighed 3 pounds 13 ounces, and his chest cavity was not developed all the way yet, so his chest looked like it sank in. I got a very quick glimpse of him before they left the delivery room with him. Within an hour I was in my room, and had his dad wheel me down to the PICU to see him (to get to the PICU there is a underground tunnel from Abbott to Childrens), and find out how he was doing. Man was I tired, but I learned really quickly how little bit of sleep or rest you need to be able to function half way. The first day was mostly curiousity and questions that were not yet able to be answered. Then on the 2nd day a world renowned retired Gynetisist Dr. Robert Gorlin came off the bench so to speak and met us at the hospital and he is the one who diagnosed him for us.

That day we found out he had the 3rd thing on the list that we had during that ultrasound. Craniosynostosis, and the rarest form of it called Kleeblatschaedel, and the easier way to say it is Clover-Leaf Skull. Craniosynostosis is the premature closing of the sutures in your head. Now the reason his form was rarer then the others, is that alot of the children born with this have one or two sutures closed together, and Josh had all but one closed before birth. The only one not closed is the Squamosal. You may wonder what I am talking about, a good example is the soft spot on the top of all babies heads, if you feel it it is soft, and does not completely close for quite awhile, well that spot and more in my sons head were already closed when he was born. Dr. Gorlin then explained to us that there were 2 surgeons he felt were qualified to begin the process of helping my son survive.

One was a surgeon is Kansas, and the other was Dr. Jeff Posnick..... in Chevy Chase Maryland, he does all surgeries out of Georgetown Hospital in DC. We within a week of Josh being born, made a call to both doctors, the first one we called in Kansas (which would have been way closer to drive, as I am afraid to fly, lol) had a receptionist get back to us and was real impersonal. We were not comfortable with the feelings we got dealing with them. So we then called Dr.Posnicks office and within a couple hours he called us back personally and we talked to him for over an hour. He happened to be from Minnesota and he said everything that needed to be said to his father and I that made us 200% sure this is the man we wanted to entrust our sons life with. Josh was nowhere near strong enough nor healthy enough to make that trip, so we just stayed in contact with him, and had all doctors notes, and CT's and MRI's and any other test done in the hospital sent to him, so he knew exactly what was going on with him at all times.

I am not going to put every little detail of the years of Joshua's life just a little of lots of things. Josh was in the hospital for two months the first time he came home for the first time ever on Dec. 19, 1998 and was only home for 24 hours and got readmitted with pneumonia and was again there for another month. The first year of his life was spent like this. He was never home longer then a week.

When he was about 3 days old, we had a social worker from Childrens request to meet with us. She wanted to know how his father and I were doing and handling everything. I will never ever forget what she said to us " That our son was either going to make or break us, there would be no middle ground." I did not take this as an insult but really did not like hearing that. But trust me over the last 9 years I learned quickly what she meant by that. The feelings of sadness, anger, resent, confusion, hopelessness, pain, anticipation, happiness, and more all can really get to you and make it very hard to stay on the same page with your loved one! We swore to each other that we would never get so lost we could not find our way back to one another and its been tough but we are still going!

Joshua is extremely lucky to have Bill as his father you should see the two of them together! Man does he love his daddy! Almost from the beginning it seemed everytime we turned around there was something else wrong with our son. It seemed everytime they tested something it was bad news. After about a month of that I broke down one night worse then I had ever I seem to recall and was almost afraid to see his doctors everyday because I was so afraid it was going to be more bad news. We were told "IF" he did make it that he would never do anything, like walk, talk, see, hear, I could not believe that and did not want to believe that. In the first few months I will name some of the things that were told to us by doctors by different tests done. We were told that he was almost all the way deaf, that he could only hear a whisper in one ear, and nothing in the other. We were told he was partially blind. We were told he had a hole in his heart, we were told that he was aspirating his own bodily fluids and was getting pneumonia as a cause of it (sometimes so bad his lungs would be completely whited out, and they would have to intubate him for different periods of times), as a result of this we were told he would not be able to eat by mouth and put a G-tube in his stomach to feed him, they also sat us down one day and told us they wanted to do a Trach on him, neither I nor his father were okay with that. Call it parents instinct but we did not believe it needed to be done. And this was the first time we challenged what a doctor said needed to be done. They were not real happy with us. We did research and found out all we could about it and still agreed we would not let them do that. So we ended up doing a Nissen Fundoplication, which is when they wrap the top portion of your stomach around your esophagus.Click here for a much better explanation and images

After they did this surgery he seemed to do much better as far as the reflux went, but there were still some hard times. As a result of the Nissen he will never be able to vomit (if his body absolutely needed to he could as far as I have understood) he wretches instead. Jumping way ahead in time now years later I am SO glad I did not let them do the Tracheostomy because he would have had it for the rest of his life and there would have been nothing we could have done about it, and we were right he did not need it! One of the times that Josh was home for almost a week he got really sick again. When he was at home he was on a routine that was repeated about every hour and a half period 24 hours a day, with the neb treatments, the apnea monitor, the G-tube feedings, the meds (man there were so many). Well his father took him to the emergency room around 10 PM and I'm not sure what happened exactly but my guess would be the doctor in the ER that night was new and not familar with our son. His father told them if they did not admit him we would be back in the morning and he would be way worse then he was now. Well the ER doc at Childrens seemed to believe he should go home and not be admitted. So they came home, neither one of us slept, his apnea monitor was dropping low all night so in the morning, I dropped Bill off at work and had made a call to Joshua's regular doctor and was told to bring him in at 9, I dropped Bill off, then dropped my daughter off at grandmas and headed downtown to Children's, I got into the clinic and his peds doctor was just getting in and looked at Josh, and went right back to the nurse and told her to get him right away back and to check his oxygen level and pulse (which I found out later). Well we sat there for what seemed like forever it was about 25 minutes and I kept rubbing Joshua's face and talking to him. He was all bundled up in his infant seat. I could see tho that his breathing was getting shallow looking. Well this nurse FINALLY calls us back and we took him out of his car seat and she panicked she put him on the monitor to check his oxygen level and it was so low his body was in the process of shutting down, she ran out of our room and banged on his dr's door to come quick, and that moment I knew this situation was really bad! Well in the midst of the nurses panic she stopped and asked me "Do you want to revive your son? I was pissed! I looked at her and said "Do we REALLY have the time to be talking about this?" I have not spent months doing everything I can in order for my son to survive and be okay for it to be taken away from me in an instant when we REALLY DO NOT have even 1 extra minute right now to be talking!" Well once they had him in the ER again and intubated and I called his father and grandma, grandma decided to call the heads of Childrens to talk to them about what had happened that day. They sent a few different people randomly thru out the day to talk to us and apparently my sons doctor asked this nurse "If Josh had been a normal looking child would you have taken the time out to ask if he should be revived?" and her answer was "no"! She tried to come and talk to his father and I later on in the afternoon and apologized repeatedly but my son was laying in critical condition in the Intensive Care I really did not care what she had to say. The whole situation was scary and horrible! I wondered for weeks, "Was is my fault?" "Could I have done something different?" After talking to all my family I accepted that I did everything I should have and handled the whole thing just right.I don't know all of this was so new to me, I had never in my life been trained to know how you would or would not or the do's and the don't at a time like that. Needless to say it was that day that we decided yes Children's Hospital is a wonderful hospital for certain children but our son was not one of them. They were not experienced enough to handle him, and it seemed at times when they really should have said "we do not know, we will send you to someone that is better qualified" they never did. Instead they took text book guesses and mislead us in so many ways. Once my son was strong enough to travel we headed to Washington DC for his first Cranial Reconstruction. My mother, and Bills mother and sister, and Josh's godfather and his girlfriend and another family friend all flew out there to support Joshua and us. This was the scariest thing I have ever experienced, I have never felt so helpless in my life! The night before my sons surgery we all went out to eat, and them came back to our extended stay hotel we were staying at and we got a call at 9:30 at night from Josh's cranio surgeon. He was calling us from his home. He started by saying "I have never made a call like this in all my years of being a doctor, but I had to call you two and tell you that I have the experience as a surgeon to do exactly what needs to be done. But the rest is in gods hands." He was worried if Josh was strong enough to make it thru such a severe surgery. We respected him for the honesty, but let me tell you hearing that the night 6 hours before we were due to be at Georgetown made it even harder!

OK guys I am sorry I told you this would be long even with the shortened version. So I will leave it at that. My son is the strongest person I have met! He is my little miracle. So even when there are days I get so tired, everything we do is worth it because Josh is here and he survived and even though he doesn't live a typical normal life he has beaten so many odds!

These pictures coming up are so graphic so if you have a weak stomach you can close the entry here. This set of pictures if from his second surgery. Each surgery takes around 12 hours. There have been complications each surgery and a long hospital stay and recovery but he has always came out of it alive and better! Without these surgeries he would not be here today. They did a series of them to keep making room for his brain to grow. He has literally changed in appearance all 3 surgeries. This little boy is what keeps me going. He needs his dad, sister, and I more than anything. And he has all of us for life!

Right before surgery..... So cute ;)



Right after surgery....



These pictures break my heart no matter how many times I look at them. He cannot see temporarily after surgery. Within about 48-72 hours his face swells so bad!



So sweet!!


This is the first time we took him out of his bed and took him for a walk. He was so sad, he hurt so bad!

So there it is...My sweet baby boy's story. The 2nd and 3rd surgery his father and I were the ones who ended up taking over 140 industrial size staples out of head. He would not tolerate his Cranial Surgeon to do it. He asked if we comfortable doing it and comfortable or not we did it. I may write another entry another time about other stuff I have learned and been through since the day he was born but I will end this for now since it is so long~

Hugs, Robyn


  1. Oh boy!!! I don't know where to start. Well first off thanks so much for sharing that with us! I love reading about medical struggles with happy endings! Joshua's Birthday is soon eh?

    Being a mom i don't know how you did this! Such an amazing mom you are.


  2. Being a mom of a child with some major health problems, I felt your pain looking at those pictures. Poor guy.

  3. I remember reading this before and being so moved by your story of your beautiful boy. Bless his little heart, he has been through so much, as have you. I just thank God that he was blessed with a Mom who treasures each breath he takes and does everything in her power to make his life better. I admire you so much Robyn, and pray for you & Josh daily.

    Love & Pooh Hugs,

  4. He is a lucky little boy to have you and damn he was cute as a baby

  5. I have read this before in your AOL journal and reading it again, I just cry and cry. I'm so glad he chose you for parents. I think he did. We are all the better as people that he made it this far. He sure has touched my life. What a sweet loving little boy! Wish I knew him personally.

    Love, Nelishia