Our Christmas miracle

I know it has been a long time since I have posted an update.  Every day seems busier than the next!  A good bit has happened in the last 13 days including a PICC line malfunction, a trip to the CHOA ER, a colonoscopy, a 48 hour stay in the hospital and, of course, Christmas.  Let me start by saying I hope everyone enjoyed a wonderful holiday with family and friends!  We were certainly ecstatic to be home to celebrate, especially given the close timing with our most recent hospital stay.  It was our little Christmas miracle!  And now to that story...

Last Thursday afternoon I was disconnecting Joshua from his tubing around 3 pm like I do every day.  I always check for blood return from the PICC line to verify the IV is working properly during the heparin lock procedure.  When I pulled back on the line, I felt a lot of pressure and did not get blood return.  I started making calls to the home health care company and eventually received a call from our GI nurse at Egleston advising us to take Joshua to the Egleston ER immediately.  Joshua is supposed to be off his fluids for 5 hours a day only so once he is disconnected the clock starts ticking.  Since I couldn't get blood return from the IV, I may not have been able to infuse fluids into it at 8 pm that night.  The nurse said our local ER would not know what to do with a pediatric PICC line in an infant and said it would be easier and faster to come to Egleston.  We arrived at the ER around 6 pm that evening which seemed like plenty of time to either resolve the issue with his PICC line or start a new IV so he could get clear fluids by 8 pm.  Boy was I wrong!

I have the highest regard for the CHOA Egleston NICU, surgical staff, and just about every other department, staff member, and volunteer I have encountered there so I was not worried about the care Josh would receive in the ER.  I had no idea how different our experience in the ER and overflow area on the 6th floor would be.  The admission process went quickly and we were promptly ushered into a triage room in  the ER where we would sit for over 5 hours trying to convince someone that Joshua needed to be put on fluids and admitted as soon as possible.  We received one visit from a doctor early on in the process and never saw her again.  Even after Joshua had a stool with a significant amount of blood in it and the nurse told us she would have the doctor come look at it, the doctor never stepped through the doorway again.  Finally around 10 pm I was getting frantic that Josh was still not on fluids and there did not seem to be a plan to work on his IV, I tracked down the doctor behind her computer screen and asked her what was going on.  She flippantly replied that yes, he was going to get a new IV and be admitted but she had not had time to tell me.  It still took another hour before fluids were administered and another two before we were moved to our room in the overflow area on the 6th floor.

We spent two uncomfortable nights in a tiny room waiting and waiting to have a doctor visit to tell us what was going on.  After not being able to get blood return in the ER, Josh's PICC line started functioning properly all of a sudden.  He had a chest x ray in the ER that we eventually discovered (with the help of a family friend and PICC nurse - thank you Suzi!) Josh's PICC line had moved 2-3 cm and is no longer considered "central".  It is now a peripheral line since it is in his shoulder instead of right near his heart.  The line is not out 2-3 cm at the insertion site in his arm, though, so that 2-3 cm of line is scrunched somewhere in his arm.  This is thought to be the cause of the line malfunction and the source of pain for Joshua when the line was being flushed - it is a positional issue with the line that could easily come back again.  Right now the line is working well, but I am so worried we are going to have the same problem again and there is no way to predict when that will happen.  I absolutely do not want to go through that terrible ER experience again!  At least this time I will know I have to be specific and forceful in my attempts to get what I know to be proper care for my son.

We have had multiple nurses and doctors recommend having Joshua go through surgery to have a broviac chest tube inserted.  The broviac is a more stable and better long term option for Josh since it is surgically implanted.  Once Josh starts crawling, the PICC line placement in his arm will be a real problem and subject to even more wear and tear.  The current plan is to wait until the next sign of trouble with the PICC line before scheduling the surgery for the broviac.  We have our first appointment with the GI clinic on January 4th where I will bring up the subject so we can try to make a plan (never an easy thing to do with Josh).  The surgery is relatively simple, but does require sedation and, therefore, another overnight stay.  Joshua was completely at ease being back in the hospital, the little turd :)  He was smiling and cooing at all the new nurses - just winning over more hearts!  He is a real ham and is accustomed to being the center of attention.  Many of our NICU nurses came to visit and that was a nice treat.

Now on to the other issue we have been dealing with for a few weeks - unexplained blood in Joshua's stool. The GI doctor had already suggested he have a colonoscopy and once Josh had a bad bloody stool in the ER, they decided to schedule it for the next morning.  I walked Joshua to the operating room again which was an eerie feeling.  The last time we waited in the same room was in October when we were devastated by his short gut diagnosis after his ostomy take down surgery.  I knew in my head that the colonoscopy was a simple, low risk procedure.  But it still made the hair on my arms stand on end to be in that room again and watch my baby be wheeled through the operating room doors.  I waited in our room for Joshua to be brought back after the surgery.  He returned in a few hours and in a very cranky mood (understandably).  Josh had missed two feedings by that time since he wasn't allowed to eat before the surgery.  Once they let me feed him he was my sweet, happy boy again.  The colonoscopy showed irritation in the lining of Josh's rectum.  A biopsy was taken and we are still waiting on the results.  I think the holiday really slowed things down because we expected to know something days ago.  The current thinking is Josh has developed a milk protein allergy which is very common in babies and especially common to short gut babies.  The dairy I ingest is passing through my breast milk and is causing irritation in the mucosal lining of Josh's colon.  This has not been confirmed by the histology report, however, the one GI doctor we saw is fairly certain dairy is the cause.  A bacterial infection was essentially ruled out because Josh's stool samples came back negative for bacteria two weeks in a row and he has no other clinical symptoms of an infection.  Josh was released on Saturday and we rapidly made our way out of the hospital and back home!

On Friday afternoon I reluctantly started on a non dairy diet.  So far I am stumbling through it and trying to figure out what I can still eat that I enjoy.  Removing milk, cheese, ice cream, and butter from my diet is a difficult pill to swallow.  The even tougher blow is not being able to use all of the stored milk I have in the freezer.  This is such a source of stress for me because I am not able to pump enough to keep up with Josh's needs on a daily basis so having the stored milk was a very reassuring resource.  Every hour of every day I constantly think about milk supply.  I live in 3 hour increments getting from one bottle to the next, patting my back that I had enough milk for that bottle and then immediately shifting to worrying about getting enough milk for the next.  It is physically and mentally exhausting!

Joshua continues to flourish at home so all of the above is rendered inconsequential in the big scheme of things.  He is growing rapidly, laughing and smiling all the time, and learning new things at a very quick pace.  We are overjoyed by having him with us at home and knowing he has adapted and is enjoying his new environment is incredibly comforting.  I will have to write about our Christmas in a separate post since this one is already pretty lengthy!

Pictures my sister-in-law, Anne, took that I have been saving until after Christmas gifts were opened:

Home Sweet (BUSY) Home

Being discharged from the hospital on Tuesday went more or less as expected, it was super busy and quite stressful.  Joshua received his 4 month immunizations, David made multiple trips to the vehicles with all of the stuff we amassed in the hospital room, and I finished paperwork and trained on proper technique for administering Josh's fluids.  Josh was disconnected from his fluids at two and we said our goodbyes to the wonderful staff at Egleston. 

Saying goodbye to Nurse Brittney

 

 

Nurse Nancy & Nurse Brittney - two of Josh's favorites!

The ride home was uneventful - Joshua fell asleep almost immediately and stayed sleeping the whole way.  The night turned into a very stressful experience because our home healthcare nurse was late and Joshua ended up being off his fluids an extra hour and 20 minutes.  This was not the way the carefully laid plans were supposed to go.  I was frantic by the time the nurse got there claiming traffic and getting lost made her late.  Being at Egleston we received top notch medical care at the snap of a finger, being at home at the mercy of home health nurses is a completely different experience.  I kept saying I wanted to be in control and now that I am, I realize what a massive responsibility it is.  I was on the phone with our Egleston nurses multiple times that night.  On top of this, we were not able to find the type of Immodium Joshua is supposed to take.  After trying 3 different pharmacies, we decided to give up the search until the next day.  I was worried about how Joshua would accept sleeping in his new crib and room by himself.  The worry was unnecessary, as soon as I laid him down he rolled on  his side and went right to sleep.  It was like he knew he was where he was meant to be.  He slept for 12 hours straight besides feeding and diaper changes every 3 hours.

Now that we are at home the schedule seems to be as busy as ever.  There are almost as many things that need to happen here except now I am in charge of it all.  Every feeding, every bath, every fluid change, every temperature check, etc. I am getting about the same amount of sleep now as I was in the hospital, although it is a quieter environment to rest in.  We did not completely get rid of the beeps, Josh's two pumps for his fluids beep for the same reasons they did in the hospital - occlusion, air in line, low battery, and infusion complete. 

The home healthcare nurse came Tuesday, trained me on Wednesday, and I have been on my own hooking up Josh's fluids since Thursday.  It is a little nerve wracking.  I have to inject four different solutions into his TPN bag, set up and prime the tubing, set up the pumps, hook up the tubing to the pumps, and connect the tubing to Joshua all done in a sterile manner.  It takes about an hour from 7-8 every night. 

Today we went to Joshua's first pediatrician appointment.  It was a good thing, too.  Josh had a small amount of blood in a stool this morning which really had us worried.  This was the first sign when he had his malrotation episode so we have very bad memories about this particular symptom.  I was on the phone again with contacts in the NICU and short gut clinic at Egleston.  I emailed a picture of the blood and received the good news that the doctors were not very concerned because Josh was acting normal and did not have a fever.  We took a stool sample into our pediatrician and will follow up with Egleston next week if we see any more blood. 

Being at home with Joshua has been amazing!  The five hours that he is off the fluids is unbelievable, it is a little sad to hook him back up every night.  But, we are figuring things out and taking advantage of his freedom as much as possible.  Today was the first time we left the house with Joshua and it went well.  His pumps are in two pouches that can be carried pretty easily.  We can leave with Josh, but we are hesitant to bring him around too many people right now.  Maybe we are just enjoying our time together as a family too much right now to want to share him. 

Preparing for HOME

Our week started with the head neonatologist confirming we would be going home soon, just not this week.  She let us know it would take time to set up the home healthcare equipment we will need and get us trained on it so trying for this week was pushing it.  I understand what she means now because there has been so much back and forth between our insurance company, the nursing staff, and multiple home healthcare companies.  They had to find out what our insurance would cover then identify a company that could provide the supplies and nursing care we need.  In the end it sounds like we will receive weekly nursing visits to deliver our supplies, draw a blood sample, and help me with the PICC line dressing changes.  I will need to know how to properly change the dressing in case it comes off during the week since it has to remain sterile at all times.  I will also be responsible for disconnecting, reconnecting, and administering Josh's fluids every day.

Now that the doctors have decided we can go home, the flurry of activity this week has been at an all time high.  I have met so many new people I can hardly keep them all straight.  I saw the GI specialist, Dr. Romero, and his team including a social worker and the nurse coordinator I will be working closely with for Josh's outpatient care on Monday.  Dr. Romero confirmed my suspicion that Josh will most likely need the PICC line and the TPN nutrition until he is 12 to 18 months old and follow up visits will continue for many years.  The inpatient hospital portion of this ordeal is coming to a close, but we still have a long way to go to get Joshua to the finish line - a perfectly healthy vibrant child.

We had a few big developments at the end of last week.  Joshua was cleared from isolation and contact precautions since all three cultures last week came back negative for MRSA.  He is officially MRSA free!!  He can now go outside his room, but not outside of the unit because of RSV and flu season.  We'll take the small freedom.  Josh also started coming off the TPN, at first for two and now for four hours a day, which means he is disconnected from the PICC line tubing so I can carry him around.  I almost cried when I was able to hold Joshua and walk him up and down the halls of the NICU.  I have never been able to walk around and carry my baby freely outside of a 3 foot radius of his IV pole.  It was exhilarating.

The target date for Josh's discharge is Tuesday, December 11th.  It will be one busy, stressful, liberating, amazingly gratifying day.  Josh is scheduled to be discharged around 2 that afternoon and we will have a 4 hour window to get him packed in the car, drive to Athens, meet the home healthcare nurse, train on how to use his new equipment we have never laid eyes on before, and get his fluids administered by 6.  I would say I should sleep well that first night in my own bed, but it will also be the first night Joshua has spent without being hooked to a heart rate monitor with a doctor within arms reach.  I may not sleep a wink.

As we prepare to conclude our stay at Egleston, I have been reflecting on the things I will miss and the many other things I will not.

Things I will most certainly NOT miss (besides the glaringly obvious watching my child suffer, waiting in agony for surgery results, etc. etc.):

*The horrendous parking fiasco that is the CHOA parking deck.

*Briarcliff Road- oh, how I despise thee.  I cannot wait to get back Athens traffic where you only have to worry about it 6 days a year (and what a glorious 6 days they are). 

*ZERO privacy.  There is always, I mean always, someone coming in your room at all hours of the day and night. You have no personal space.

*The pathetic excuse of a bed that is the hospital "sleep" chair.  I have been sleeping on a hard 24" wide  surface for a third of a year.  I would pay good money to take an ax and a blow torch to it upon our departure.

*The incessant, sanity-jeopardizing beeping that happens all night long while you are trying to sleep on a hard 24" wide surface.  Sleep deprivation is a powerfully dangerous thing.

*Lack of control over basic things like when you give your child a bath and when milk is warmed for him.  I will be so glad to manage my own milk supply - it is my bodily fluid after all. 

*Cafeteria food.  You would think a hospital would have healthier options.  There is no baby weight being lost while eating this crap three times a day.

*Lack of exercise.  I cannot wait to say goodbye to this sedentary lifestyle and get back to the gym and taking the little guy on walks outside.

*Public showers.  I went from taking two showers a day at home to only three a week under a little trickle of water with my flip flops on.  Then I have to walk back through the hospital with wet hair and soaking shoes.  Not the enjoyable, stress relieving experience it used to be.

*The pitiful laundry room that started out with 4 washers and dryers, but now has only two working machines.  You have to take knobs from broken machines to start working ones and there is always a wait to put your wet clothes in a dryer.  And it turns out babies go through a lot of clothes so you need to do laundry all the time.

*Elevators.  I feel like an idiot standing around waiting for a mode of conveyance when my legs would do perfectly fine.  I am also so tired of the lack of elevator etiquette in this place.  Exception - for the month after my c-section elevators were definitely my friend.

*Having to call a receptionist to be admitted to see my son.  Anytime I leave the NICU, I must call to receive authorization to return to the unit.  It gets so old.

*Limited TV channels, no DVR (how did we survive before it), and no comfy couch to watch TV on.  

Things I will miss:

*The daily interaction with our wonderful team of primary and associate nurses.  They truly care about Joshua like one of their own family and I will dearly miss my comrades in arms.

*Having immediate access to skilled physicians and surgeons.

*Meeting other parents that can relate to your experience.  They help make the long days in the hospital a little easier to get through.

*Being wowed by the kindness of strangers.  There are so many volunteers and benefactors that make Egleston possible.

*Having frequent visits from family and friends.  Being closer to my loved ones has been incredible.

*Free late night frozen yogurt in the cafeteria.

*Having only to stick my head out the door to have someone bring me more diapers.  My sister-in-law asked where we bought our diapers and I had to answer that we haven't had to purchase any yet.

*Always knowing Joshua's heart rate.  I have come to depend on that feedback to know exactly what physical and emotional state he is in.  

I will leave the hospital knowing I did the best job that I could for Joshua under the circumstances.  There have been many bumps along the way, but I am proud of my willpower, endurance, and sheer determination to get through this ordeal.  I will not take the little things for granted and I will fully appreciate each and every day I spend at home with my family.

Pinch me - I must be dreaming!

I hope everyone enjoyed a wonderful Thanksgiving holiday!  We certainly have plenty to be thankful for this year and loved spending time with family.

Joshua has been doing well with his new PICC line and the original insertion site in his scalp has healed very nicely so no more concern with possible infection there.  The consistency of Josh's stools did not bounce back the way I expected after he was taken off the antibiotics for the wound infection.  The doctors now think we have hit a plateau with the amount of milk Josh's body is able to tolerate.  We have been stuck on a 45 cc for closing in on two weeks.  Instead of going up by 5 cc's every 4-5 days, it now seems we will be waiting at least two weeks for every increase to give Josh's intestines time to adjust.  Since at his current weight he needs to get well over 100 cc's to be considered full feeds, we have a long way to go.  David and I were getting very discouraged at the beginning of last week with our glacial progress and thinking about how many long months in the hospital were still ahead of us. 

On my way out the door to meet David to watch the Georgia/Georgia Tech game, one of the neonatologists stopped me to discuss how she thinks we need to move to the GI floor before going home so we can get to know them and vice versa since Josh will have follow up appointments with the GI specialists.  This is the first time I had heard about moving and it upset me.  We have become very close with our NICU nurses and doctors and have no desire to move to another floor where we would be forced to get to know a whole new staff and their policies.  I envisioned us finally leaving the NICU to a standing ovation with confetti falling all around as we wheeled Josh out of the unit.  (This is not likely to actually happen, but is fun to daydream about).  Our nurses were also upset by this suggestion and lobbied the other neonatologist, Dr. Piazza, to have us stay put.  It seems like we all got our way since we are staying put for the foreseeable future.  (For you Braves fans - every time I hear Dr. Piazza all I can think of is that scruffy Mets catcher that gave us fits for years, not the image you want for the person treating your child.)

Now comes the pinch me part - Dr. Piazza started talking to me about possibly going home by the end of next week!!  Seriously?!  Josh will definitely be going home with the PICC line and I will be responsible for providing most of his home healthcare including hanging his TPN fluids, changing his PICC line dressing, maintaining an infection free PICC line, and monitoring his progress as his milk and TPN levels fluctuate.  It is more than a little intimidating, but I would walk through fire to get home at this point so once again I say - bring it on, let's do this thing!  Josh will go home on fluids for 20 hours a day and off for 4 so in the beginning we will get 4 hours of freedom.  He will slowly work up over the course of months to being on for 12 hours and off for 12 hours.  And someday we will eventually get him off the fluids altogether.  I have no idea how long that will take, but it doesn't much matter as long as we can do it from home! 

I am not getting my hopes set on leaving next week.  Different doctors have different opinions and our head doctor is not returning until Monday.  She will be the one to make the final decision.  I have a hard time believing she will come back in the rotation on Monday and discharge us by Friday.  Just knowing our discharge is weeks, instead of months away, is intoxicating.  It really does not seem possible.  Now David and I are scrambling to get all of our ducks in a row at the house before the long awaited event actually happens.  It hardly seems real.   

Stay tuned for more details early next week!  

PICC line shenanigans

David arrived Friday evening for a much anticipated 10 day Thanksgiving vacation at the stately Chateau Egleston.  We were able to sneak out of the hospital for a late dinner at a nearby Chili's (thank you Katie Anguish for the thoughtful gift card!) and enjoyed a nice beginning to David's stay with us.  Then we arrived back in the NICU to a stomach clenching, but familiar sight - a hubbub of activity outside Joshua's room and the mobile x ray machine being rolled in.  What in the hell is going on now?  He was fine when we left less than two hours ago!  Unfortunately, we have been through this situation multiple times before so it was a very unpleasant deja vu for us.  Our nurse stopped us outside the room and explained there was concern Josh had a PICC line infection called phlebitis because the skin surrounding the PICC line insertion was red and irritated and a nodule had formed at the insertion site.  She had a very serious look on her face as she spoke to us and I knew an infection in the PICC line vein is a very dangerous thing since the PICC line is threaded all the way to his heart.  On top of this, she told us Josh was already on the antibiotic that would be prescribed for phlebitis.  This was extremely alarming news to me since the antibiotic that should work obviously was not preventing the infection from forming, if it really was an infection.  So what would we do if it was phlebitis and vancomycin was not effective against it?  Our nurse did not have an answer and panic started setting in. David took the news especially hard and had to sit down at the nurses desk before he passed out.  I rushed in to check on Joshua as two of our nurses took care of David getting him an apple juice and an ice pack for his neck.  He recovered quickly and we tackled this latest obstacle. 

Josh had to have the PICC line redressed three days in a row starting on Wednesday which is a very unusual circumstance.  Typically a PICC line dressing lasts at least a week and sometimes several weeks before redressing is necessary.  Josh has very sensitive skin and I suspected all the dressing changes which require pulling up on sticky steri strips and tegaderm irritated Josh's skin.  His heart rate, temperature, and temperament were normal.  Placement of the PICC line is almost just as important as keeping it infection free since only proper placement insures Josh is receiving his nutrition and medicines.  The PICC line had continued to inch out with every dressing change so now the placement was in question, too.  It was looking like Josh was going to need a new PICC line which is a bit of a production.  We ended up sticking it out until Sunday morning then there was blood coming out of the insertion site under the dressing and the day got really interesting.  A pediatric PICC nurse was brought to put in a bigger, stronger pediatric PICC line.  I discussed with the PICC nurse which option: scalp, arm, or leg made the most sense for Josh's new line.  Arm was her preference since the vein was big and easily accessible.  I was either for another scalp since this seemed to stay out of the way or leg since then at least we would still be able to fully dress him.  With the PICC line in his arm, we are not able to get his sleeve on and off that arm.  In the end, it wasn't really my decision so when we were allowed back in the room a few hours later, Josh had a new pediatric PICC line in his right arm.

Sporting my new PICC line and a bandage over my old insertion site.

The old scalp PICC line was pulled after confirmation that the new line was properly placed.  We are still getting used to handling Josh with the arm PICC instead of the scalp PICC.  It is a much sturdier line so you don't have to be as worried about how fragile it is.  A big downside is the fact that he has to wear his clothes with his right arm out.  Know anyone that makes baby togas? 

Watching the UGA game in my new jersey on Saturday before the PICC line shenanigans.

In very positive news, Josh's wound seems to be healing nicely and he was finally pulled off the antibiotics after the fear about the phlebitis infection subsided.  He is currently taking 40 cc of milk every 3 hours and we are hoping for 45 cc tomorrow.  Joshua is a big growing boy up to 11 lbs 10 oz and over 24" long.  He is talking up a storm and really showing his adorable personality. 

Our favorite doctor, who happens to be the head of the whole NICU, is working this week (she has been off the rest of November).  I am hoping to corner her to pepper her with questions and what if scenarios in an attempt to figure out when Josh might possibly be allowed out of here.  Is there any chance we could make it home by Christmas?  Please, please, please, please let it be so!!!!

Josh hamming it up for the camera during his bath last night.  Our nurses gave him his first mohawk!

Infections really really suck

After Joshua had the procedure last Tuesday to open up the right side of his wound to allow the infected pus to drain out, we expected that would be the last step to finally get rid of his persistent MRSA infection.  Everything seemed to be going according to plan the rest of the week as the wound cleared up and no more pus came out.  Then came the weekend and the opposite side of the wound, the left side, started looking suspiciously red and a little shiny.  We were immediately concerned, especially since Josh seems to prefer to get sick at night or on the weekend when the doctors are not available, but his temperature and heart rate remained stable so we were cautiously optimistic it was just a skin irritation like the nurses suggested.  Of course this was not the case since our little family cannot catch a break like that, it always seems to be a worst case scenario with us.  When the surgeon saw his wound on Monday, she was shocked how different it looked from Friday.  She promptly squeezed pus out of the right side of the wound then called for her surgical kit so she could open Josh up on that side.  The procedure was much worse on Josh this time around for some reason.  I was forced to hold his legs down so he couldn't kick while the surgeon was cutting.  Despite the pain medicine, he screamed the whole time and his heart rate skyrocketed.  And all the while I had to keep his legs pinned down with blood running everywhere so the surgeon could see what she was doing.  It was awful.

The wound looked better on Tuesday so our surgeon just repacked the wound and no additional cutting or squeezing was required.   Joshua watched her like a hawk the entire time, it was pretty funny because it seemed to disconcert her.  He just stared at her face as if to say "come on lady, just try to poke at me today".  We again desperately hope this is the last procedure required to FINALLY get rid of this miserable infection.  Josh is back on the antibiotics for at least 48 hours and then their need will be reassessed.

On the feeding side, things continue to go well so we remain very thankful for this.  Josh is up to 35 cc's every three hours and the doctor plans on going up to 40 soon.  He accepts each new amount readily, he is a hungry little fella.  Still no word on when we could possibly skip this joint.  Thanksgiving decorations went up last week. 

The photos below were taken by my sister-in-law, Anne.  The pictures are very precious to me since they accurately portray Joshua's sweet spirit and how incredibly essential he is in my life.  I am smitten with him.

Having beautiful pictures of Joshua taken is just one of the many, many things I will miss with my brother's family moving to Texas next week.  Many happy memories have been made at the Decatur Manning house so it was a little sad to go there Sunday for a last dinner of delicious chili and cornbread.  I will miss you guys so very much!  I wish you the best as you start your new life in Texas (and you better visit often)!!

Infections really suck

Joshua has continued to have daily visits from our surgeon to squeeze on his belly and apply silver nitrate to the over granulating tissue that is preventing the wound from healing properly.  We were excited on Monday because Dr. Bhatia decided she did not need to take Josh to the A side to open the wound up more.  Unfortunately, our excitement was short lived since he ended up having the wound reopened on Tuesday after more pus came out when the wound was poked and prodded.  Josh received a dose of morphine and a topical anaesthetic before the doctor cut open the left part of the wound.  She cut out a stitch that she thinks may have been a source of irritation and searched for any remaining pockets of pus.  Dr. Bhatia is hopeful allowing the left side of the wound to drain for several more days and continuing the silver nitrate process will be sufficient to finally heal his stubborn wound.  She also collected a wound culture so we are waiting on the results from that.  We may hear something today about the culture since it will have been 48 hours.  Josh is currently on isolation because of the MRSA which means he cannot leave the room.  I am so hoping we can get him off isolation soon so he can go back outside and to the play area.  Two negative wound cultures are necessary in order for him to gain a small amount of freedom back.  I am so tired of fighting this sneaky infection and even more tired of hearing our surgeon call this the peskiest wound infection she has ever dealt with.  Please, please, please let this be the end of our relationship with MRSA. 

Josh's last dose of antibiotic was earlier in the week.  As expected, his poops are getting much better now that he has been off the vancomycin for a few days.  This is great news and is part of the reason his feeds were increased to 30 cc's yesterday - a whole ounce of milk every 3 hours!  And we finally got the much anticipated news that the rate of Josh's IV nutrition is being dropped.  This is also a necessary part of the equation for bringing Josh home.  We won't know how much of the milk Josh is actually absorbing until the IV nutrition is lessened and we see whether he still continues gaining weight.  He is currently up to 10 lbs 8 oz and stretching out like a weed!  He is long and lean like his Daddy.

Josh's diaper rash is still a problem since he had to go back on the antibiotics.  We are continuing to do the "oxygen therapy" with him and it is working well.  He finally managed to poop in the oxygen mask the other night and it was quite a production to get him and the crib cleaned up afterwards.  A few towels, blankets, and the oxygen mask were trashed by the time we were done.  I snapped a few pictures with him laying in the crib with his little robe on, but I will not post the image showing everything since I don't want Josh to be embarrassed ten years from now.  I do have the full length shot, though, and will use it to bribe Josh once he gets older!  

Josh celebrated his 3 month birthday on Halloween.  It is hard to believe he is already 1/4 of a year old (and that we have been in the hospital that long).  Since he is on isolation he was not able to parade around the hospital showing off his adorable bat costume.  Plenty of nurses came to see him, though.  Apparently he was the talk of the NICU!

One of the most frequent questions I get asked is when we are going home.  The only estimate I have been given was by our surgeon the day of Josh's last surgery when she was giving us the short gut diagnosis.  At the time she estimated another 2-6 months before we can go home.  Now that we are a month out from the reconnection surgery, I have started quizzing the neonatologists about where in this 2-6 month range our homecoming will fall.  I am not receiving any good answers.  It is simply too early for the doctors to estimate so they are very hesitant to give me any kind of date.  I had a dream one of our doctors told me Josh could not go home until he got teeth, but I have been assured teeth are not a requirement for discharge - thank God!  So for now we keep taking things one day at a time which turns into one week at a time and eventually one month at a time.  The seasons just keep changing outside our small hospital room window.

Josh in his first Halloween outfit.

 

Good riddance to you, October!

I know I have not posted in a while and I apologize for that.  I tire of writing bad news about Joshua.  We had a few good days at the beginning of last week... then we started from scratch with the MRSA infection in the wound.  Last Wednesday evening when I arrived back from a one day trip home, I learned Josh had pus squeezed out of his wound that afternoon.  I was immediately concerned because there had not been pus in the wound for a week since the antibiotics should have cleared up the infection already.  Josh's heart rate was higher than usual which is a dead giveaway something is not right and he felt warm to me.  Turns out he had a fever of 37.9 C.  Here we go again.  Since it was night shift, I had to go through a nurse practitioner to get an order for vancomycin.  She initially resisted and wanted to wait until the morning for the doctor to order the antibiotic.  Um, no thank you, I am not interested in watching my son's vitals get progressively worse over the next 12 hours until the doctor orders the same medicine I know he needs right now.  Get the kid some antibiotics now, please.  I cannot stress how important it is for the parents to be aware of what is happening and to speak up when they disagree with a nurse/nurse practitioner/doctor/surgeon's opinion.  Only you have the unique overall knowledge of your child's baseline and tendencies.  Josh was given the vancomycin that night and had two doses in him before the doctor ordered the same course of antibiotics for him the next morning.  By then his fever had come down and his heart rate was closer to normal.  Getting the antibiotics in him quickly was crucial in preventing an episode like the first time when he was so ill for 48 hours.

Unfortunately, this time around the wound continues to have pus that needs to be squeezed out almost every day.  Our surgeon started making daily visits to open up the wound more, cauterize parts of the granulating tissue with silver nitrate, squeeze pus out of the wound, and redress it.  These visits are terribly painful and upsetting to Josh and, therefore, to me.  Since he is still not allowed any kind of sweet pain reliever because they can cause diarrhea, I requested he get a half dose of morphine before the wound care.  Our doctor agreed, but most of the time they only get it in him 5 minutes before the surgeon shows up and it hasn't taken effect yet.  Our surgeon is concerned about why the wound is not healing and the antibiotics have still not cleared up the pus after 5 days.  Her plan is to continue the bedside wound care through the end of the week and if that does not clear it up, Josh will have to go back to the operating room to find the source of the pus. The surgeon suspects it could be an internal stitch that is causing an inflammatory response, although she hasn't seen any evidence of that during her recent squeezing, cutting, and poking sessions.  I just really want the bedside care and antibiotics to work so he doesn't have to be opened up in the operating room again.  Then we literally do start over with the wound healing process and that would be a major setback.  But, setbacks are commonplace around these parts and never more so than in the month of October.  I enthusiastically welcome November's arrival.

This latest round of infection has necessitated countless needle sticks and blood draws.  These are always a source of stress and pain for Josh.  He required a venous blood draw for the blood culture, another blood culture from his PICC line, a wound culture, and multiple rounds of heel sticks for testing samples.  His hematocrit level has continued to fall so he needed two blood transfusions on Saturday which of course required a new IV and, thus, another needle stick.  My poor pincushion baby.

Despite all of the negative side of the wound and infection, Josh's feeding has continued progressing well and he is now up to 20 cc's of milk every 3 hours.  The doctors are very pleased with his progress even through the multiple infection episodes.  This is the incredibly important aspect of Joshua's overall healing process so we are very thankful the feeding is going well so far.  I never had any doubt Josh would excel at eating, he is always hungry like his Mama!  Now we have to get the infection under control and the wound healed this week.

Throughout all of this, Joshua has continued to exhibit the strong and sweet spirit so many people have come to admire and love him for.  Josh is such a tough kid and I am so very proud of him.  I feel very blessed to be his Mom.

Life on the B Side

On Sunday evening we received the much anticipated news that Joshua was moving back to the B side of the NICU.  I was able to select our room out of the available three and chose our old room #2240.  This is the same private room we have been our two previous stays on the B side.  I was ecstatic to be back in the room with Joshua!  I sure have missed our cuddle time and we are definitely making up for all the lost opportunities to snuggle during the last two weeks.

David installed a 32" flat screen TV and I decorated the room for Halloween to make it feel more like home.  We have a stocked "pantry", a handmade afghan on my sleep chair courtesy of MawMaw, and original artwork from my nieces on the wall.  Josh now has the best looking, most inviting room in the NICU!

Joshua had a few mediocre days at the beginning of the week because of his tender belly and bad diaper rash.  Every diaper change was a very stressful event, but a strict diaper care regimen and oxygen therapy have helped his rash tremendously.  His "oxygen therapy" consists of having an oxygen mask blow air on his bare bum for an hour or so.  It has worked wonders and Josh is so much more comfortable now.

The MRSA infection is responding well to the vancomycin antibiotic, thank heavens.  The infection is in the wound only and is not systemic - another piece of good news.  Our surgeon had to reopen his wound on Wednesday (again with no pain killers) to squeeze out more pus.  We were pretty concerned, but the wound looks much better today and the doctor even ordered for Josh to come off the antibiotics tomorrow so she must be confident the infection is under control.

Joshua is up to 8 lbs. 12 oz. and 22.5" long.  He is stretching out like his daddy!

I finally heard the comment I have been waiting to hear from the doctor - they are talking about increasing his feeds in the next few days.  I am SO ready for Josh to receive more than 5 cc's of milk and I know he is, too.  He cries every time you take the bottle out of his mouth after his paltry ration.

Now that we have the infection under control, we need to get his diarrhea in check.  I am quite sure it is due to the antibiotics he's on and very hopeful once he gets off these his poops will be back to normal.  Then we can show these doctors what a good little eater he is and work our way back up to full feeds so we can go HOME!

Two very important people in Joshua's life are celebrating birthdays this week.  A very big Happy Birthday to Oma & Uncle Wes!!

 

Trials and tribulations

Just when we thought we could finally be on the road to recovery, a four letter word stopped us in our tracks and is scaring the living daylights out of us - MRSA.  Joshua started acting differently Tuesday night.  His temperature was up a bit, he was crying more, couldn't be consoled, and didn't want his pacifier.  The most alarming sign was the bloody discharge oozing from both sides of his wound.  Our nurse and nurse practitioner that night checked him out and told us it was nothing to worry about.  Yeah, right.

By Wednesday afternoon Joshua had spiked a high fever, his heart rate was over 200, and his incision was oozing pus.  When our surgeon arrived she seemed pretty upset that no one had told her Josh's wound had changed from the day before.  She immediately cut through a few stitches to release the pressure on the wound and squeezed out a bunch of pus.  Josh was not on any pain meds at the time and it was awful to watch him go through this.  He was started on antibiotics, given a bolus of fluids to try and bring his heart rate down, and tylenol to bring his fever down.  The fluids helped temporarily, but his heart rate stayed between 215-230 and even got as high as 242 during the late afternoon and early evening.  I was (and still am) completely freaked out by how sick he was.  Cultures were sent to the lab and we anxiously waited to learn what type of infection he had.  This morning we got the answer and it was the last thing we wanted to hear.  MRSA is an antibiotic resistant staph infection that is common in hospitals and can be a real bitch to get rid of since it does not respond to certain antibiotics.

Josh has been on two antibiotics - Vancomycin and Meropenem - since Wednesday and the Vancomycin seems to be working.  His heart rate is back to normal and his fever has subsided for the most part.  Our surgeon told us yesterday that his wound looks "100 times better" than it did on Wednesday.  The problem now is managing Josh's pain.

Joshua is in significant pain just about any time he moves and especially during diaper changes when you have to lift his legs towards his belly.  The antibiotics gave Josh diarrhea which is causing a bad diaper rash and is also uncomfortable to him so he needs frequent diaper changes.  It's a vicious, painful circle for him and it's driving us mad.

He was on a combination of morphine, tylenol, and ativan, but was still in pain today.  Josh responded well to toradol after his surgery so I requested this non-opiate pain killer be added to his regimen.  He received his first dose a few hours ago and has been resting more comfortably since.

Watching and listening to your child suffer and being powerless to do anything about it is life's greatest agony.  It is simply dreadful.

Joshua is still continuing to drink his measly 5 cc ration of milk even through his infection.  He will not be allowed more milk until his diarrhea clears up, but his diarrhea will not get better until he gets off the antibiotics which can't happen until the infection is gone.  So we are once again in purgatory not moving forward until we can get past this latest obstacle.

Joshua the way we want to see him these days - asleep so he is not in pain.

Regroup: Take 3

We had to regroup after Joshua's malrotation incident, we had to regroup after his first bowel resection surgery, now we have to regroup after his second bowel resection surgery.  You go through shock and denial, you grieve for what you lost, you drastically lower your expectations, and you regroup and move on.  There is no other option. But, this time has been much, much more difficult for me.  I am sick and tired of seeing my sweet son suffer.  He has had enough tubes shoved down his throat, trachea, and stomach.  He has had enough IV's, blood transfusions, X rays, and heel sticks.  And now we are in for many more months of just that.  It is hard for me to wrap my head around it. 

I have shelled myself off so I can avoid questions I don't have answers to.  I am already frustrated I don't have solid answers and it's even more frustrating to try and explain this to others.  It is also depressing to verbalize what is ahead of us.  This is something David and I need to process and face together and we are.

We were able to speak with our surgeon today about the specifics of Joshua's surgery and his progress so far.  She told us Joshua has 52 cm of small bowel left along with his duodenum and his entire colon besides the ileocecal valve.  Apparently Joshua had less small bowel to begin with because of his gastroschisis condition.  He also lost approximately 52 cm of small bowel which in his case is half his small intestines, but would only be 30% in an average infant.  On the scale of severity for short bowel syndrome, Joshua is somewhere in the middle.  His long term prognosis after many months of continuous feeds and IV nutrition is good.

Our surgeon said his incision site looks great, his belly is nice and soft, and he is progressing really quickly from a post surgery perspective.  She even said Joshua had the best looking tummy in the NICU!  His Anderson stomach tube has already been removed and he is pooping with almost every diaper - good signs.  The fly in the ointment is upper airway inflammation causing him to have difficulty breathing.  It is expected that the steroids he is getting will kick in and he will be able to get off the ventilator tomorrow.   I can't wait for him to get off the ventilator since he hates that tube more than any other.  He gags on it, his head turns red, and his face contorts in pain.  It is agonizing to watch.  Besides a few gagging incidents, Joshua looked relatively comfortable tonight.

Worry, fear, anxiety, and heartbreak.  I know every parent goes through these emotions, our situation just amplifies the feelings.  It is all so worth it for our against the odds warrior, our strong son, our little hero - Joshua "Tough Guy" Folden.
 

Joshua resting tonight.  He is getting so long his little feet won't fit in the blanket.

The end to a really crappy week

Where do I begin?  It's been another week from hell as we struggle to get Joshua on the path to healing from his gastrointestinal issues.  With his reconnection surgery scheduled on Thursday, preparations began on Wednesday to get him ready.  He was taken off milk at 9 am and was only allowed 10 mL of Pedialyte every 3 hours up until midnight.  Then he was not allowed anything besides his IV fluids.  Josh's blood was drawn and tested okay for surgery without any additional transfusions.  On the morning of the big day, I comforted Josh as his isolette was readied for transport.

During the surgery, Josh's intestines would be reconnected, the doctor would check for and clear any strictures formed from scar tissue, and his original gastroschisis closure site would be inspected.  We had been told to expect a 1-2 hour surgery.  We received a call from the OR an hour into surgery and were told that everything was going according to plan.  I started to get a queasy feeling in my stomach when the clock ticked off hour 3, something did not feel right.  When the surgeon came to take us to the family consult room, I was both relieved and terrified by what she might say.  The news hit me like a ton of bricks - all of the small intestine below Josh's ostomy up to his colon was strictured scar tissue and had to be removed.  An additional 27 cm of small bowel gone plus the 25 cm he lost in the resection surgery last month mean Josh is now considered "short gut".  Short gut is a term that strikes crazy fear in the parents of NICU infants.  Short gut usually happens because of a perforated bowel caused by NEC (necrotizing enterocolitis) due to premature delivery or by malrotation with volvulus as is the case with Josh.  While the cause may differ, the result does not: the body is in jeopardy of not being capable of absorbing the nutrients required to thrive due to the decreased intestinal surface area experienced with loss of bowel.  Like most conditions, there is a range of severity based on how much healthy bowel is left (measured in cm).  We are still unclear how much healthy small bowel Joshua has left.  We know he has lost 52 cm including part of his jejunum, the entire ileum, and the ileocecal valve.  What we aren't clear on and what we hope to clarify with the surgeon very soon is what the measurement of his healthy small bowel is.  We know he was able to retain his entire large intestine including the important ascending colon section which will slowly adapt to take the place of the missing ileum.  This is one small piece of good news in a whole world of craptastic revelations. 

Since the surgery we have been trying to process this latest disaster and I have found it to be the most difficult part of this whole hellacious journey.  We are doing everything the doctors tell us to and each surgery seems to bring a worse prognosis.  For the millionth time I think about how unbelievably unfair this all is to Joshua.  Instead of being reconnected and working back up to full feeds in six weeks, we are now facing up to another six months in the NICU as Josh's intestines slowly adapt to absorbing enough nutrients to grow and go home.  He will more than likely go home on continuous feeds through a feeding tube down his nose and may even come home with a central line in his chest to continue delivering IV nutrition.  It all depends on how well Josh's remaining bowel responds to feeds and we will not know this for a long time. 

People keep asking me, "How are YOU doing?".  The answer is I have no idea.  I am trying to emotionally numb myself from the pain, fear, and panic that keeps getting worse with each passing month since Joshua's birth.  We now have to worry about the long term effects of his current condition and doctors are no longer quick to point out that you will never know he had an issue a year from now.  The truth is I am tired of trying to answer the same questions over and over when I don't feel like I have any answers at all. 

For now we focus on Joshua's recovery from the surgery.  He was extubated yesterday, but his breathing was very labored and he was eventually reintubated.  Watching and listening to Josh struggle to breathe was terribly upsetting.  He was given an epinephrine breathing treatment and a steroid injection to bring down the swelling in his airway.  Josh is older and stronger this time around and seems to be more aware of what is happening to him and how uncomfortable he is.  The nurses have had trouble managing his pain, but finally found the right combination of morphine, Ativan, and Toradol.  He seems to be resting comfortably since yesterday evening.  We should be moving back to the B side of the NICU by the end of the week so I will be able to live with Josh again.  I miss holding and taking care of him so much! 

The beginning of a very big week

David and I are preparing for a very big week with Joshua's recnonnection surgery scheduled for Thursday.  These last few weeks have been a little bit like purgatory as we have been basically treading water keeping Joshua as comfortable as possible as his intestines heal from the last round of surgeries.  He is constantly hungry since he is only allowed a third of an ounce of milk every 3 hours.  Despite the challenging circumstances, Joshua is an incredibly sweet little boy and is developing a laid back and tolerant personality that I know will serve him well in life.  

A huge bright spot in the last few weeks was our physical therapist getting approval for me to take Joshua outside once a day!  I can't explain how satisfying it has been to put Joshua in a stroller for the first time and leave our hospital room.  The sun is way too bright for his eyes, but he has slowly adapted to it as our trips have become more frequent.  I am trying to savor this freedom since Josh will not be allowed to do this for a long time after his next surgery.

Today was a very special day because Joshua was able to meet his cousins for the first time!  Since the weather did not comply, we had to hang out in the lobby of the hospital rather than the garden.  But, I don't think anyone cared.  Ella, Michael, and Henry  (well at least Ella & Henry) were very interested in seeing Baby Joshua and I am quite certain the feeling was mutual.  It was absolutely adorable to see Henry reach out and touch Josh's arm - I have a feeling those two are going to be best buds.

Joshua had a little bit of a rough week since last Monday started off poorly.  On Monday he required a bunch of procedures including two heel pricks, two ostomy bag changes, his PICC line had to be redressed, and he had a blood transfusion that required an IV which took four sticks to get in.  All in all, it was a really tough day for an exhausted little guy who was so agitated he couldn't go to sleep.  It wasn't a walk in the park for mommy either.

The incision sites on Josh's belly have been a cause for concern to the doctors in recent days.  One site is herniated and red and his original gastroschisis closure site has opened up even though it has been healed for weeks.  The doctors do not think anything is infected, but they are anxious to get him to surgery.  During the surgery on Thursday, Josh will have his intestines examined from top to bottom to look for and remove any blockages formed from scar tissue.  The surgeon will also examine his original closure site to determine what is causing the wound to reopen.  And the last, most important step, Josh will have his intestines reconnected. We will then start from scratch with allowing his bowels to heal before very gradually introducing feeds.  I can't wait to be able to give Joshua more than 10 milliliters of milk!

We will need to move out of our private room in the hospital and back into the Ronald McDonald house while Josh is back on the critical side of the NICU.  Although I will miss being with Josh 24/7, I am hoping a few days in the Ronald McDonald house will allow me to recharge and recuperate before taking on the last stint in the hospital.  It has been a long haul so far and we still have a ways to go, but we will be making really exciting progress this week!  Please keep Joshua and our surgical staff in your thoughts and prayers on Thursday.

I will end this post with two of my favorite pictures of Josh that my sister-in-law, Anne, took tonight.  She is so good at capturing how freaking cute he is!!

Where we've been and where we're going

I have completely neglected this blog for the last two weeks as we have been going through one of the worst situations I can imagine.  Be warned this will have to be a long post in order for me to bring the blog up to date.  Let me summarize Joshua's story for those that are just learning of our circumstances.  Josh was born on July 31st with a condition called gastroschisis which is an abdominal wall defect that caused, in his case, a portion of his intestines to be free floating outside the abdominal cavity.  He was transported to Children's Healthcare of Atlanta immediately after birth for surgery and treatment.  The initial closure surgery went extremely well and he was recovering in record time.  We were set to be discharged from the hospital on August 31st and we were thrilled to be going home before the Labor Day weekend (and in time for the first UGA football game).  On Thursday evening (8/30) David and I went out for a celebratory dinner while my parents stayed with Josh in the hospital.  We were enjoying talking about everything we were going to do at home with Josh that weekend when I received a call from a doctor I had never met.  She told me Josh had blood in his stool which caused them to believe he had an infection called necrotizing enterocolitis (NEC) which is a very serious infection that leads to necrosis or death of intestinal tissue.  I had heard of this before and knew it was a very serious situation.  David and I dashed out of the restaurant and made it back to Josh's room in 10 minutes.  He was immediately put on powerful antibiotics and had his stomach tube reinserted.  The rest of that night is a blur of fear, panic, and heartbreak as I watched my poor baby go from bad to worse as each minute painfully ticked by.  His heart rate was abnormally high and he was inconsolably crying in pain.  He eventually started moaning and twitching as his suffering worsened.  What no one knew at the time was his bowels had twisted inside his little body and blood flow was being cut off to portions of his intestine causing them to slowly die.  As his condition worsened, more nurses and doctors were brought in to try and assess what was happening.  An X ray was taken and showed free air in his abdominal cavity.  This is typically seen when a perforation in the bowel has occurred which is a very serious, life threatening situation.  Joshua was immediately transferred back to the critical side of the NICU as the doctors determined what the next course of action would be.  As this was all happening in the middle of the night, David and I were deliriously exhausted by the time a surgeon came to get our consent for an emergency exploratory laparotomy to fix the presumed perforated bowel.  After a grueling 90 minute wait Friday morning, the surgeon came back to explain she had not found a perforation, but instead found a malrotation with volvulus.  His intestines had twisted and three sections of bowel looked questionable.  The surgeon decided to leave everything intact in the hopes that the tissue reperfused and healed on its own.  Josh's appendix was also removed during the procedure so at least we never have to worry about him having appendicitis.  Another surgery to check the three questionable sections of bowel was scheduled for the next day (9/1).  Joshua was in very critical condition on Friday as his vitals steadily became more unstable.  He could no longer maintain a normal blood pressure and as his body shifted his blood supply to his core and major organs in a survival effort, he took on a frightening ghostly white pallor.  A doctor sat us down Friday night to frankly discuss how serious the situation was.  She basically said they were doing everything they could to keep his vitals stable with fluids, medications, and blood products, but there were limitations to what they could do and it would be up to his little body to keep fighting.  I slowly and unwillingly came to the horrifying realization that she was preparing me for the worst possible outcome.  I never knew the level of desolation I felt was possible.  This was the worst nightmare imaginable! 

Joshua after his first exploratory surgery.  His bowel was untwisted and his appendix was removed.

 Joshua was scheduled for the next exploratory surgery on Saturday morning.  We anxiously awaited when he would be taken back for the surgery because the anaesthesiologist was not happy with his blood clotting factors.  After multiple plasma and platelet infusions, Josh was eventually cleared for the surgery around 1:30 pm.  We strongly hoped the surgeon would find that all of his bowel could be saved, but unfortunately that was not the case.  The three sections of questionable bowel were gangrenous and needed to be removed immediately because the byproducts from the dying tissue were making Josh very sick.  A 10 inch section of small intestine was removed and an ostomy was created in his jejunum.  In a nutshell, this means Joshua's intestines are not currently connected in a continuous tract.  The two ends of free intestine (called a stoma) are brought through the abdominal wall and temporarily attached there.  An ostomy bag covers the upper stoma to collect all of the gastric juices and the lower stoma is simply covered with a sterile dressing.  Josh will continue living like this until a reconnection surgery takes place on October 4th.  This gives his intestines time to heal before the reconnection process takes place.  The healing phase is crucial to a successful reconnection.  After the next surgery, Joshua will need at least another 6 weeks to rest his intestines and get up to full feeds again.  He is only allowed a third of an ounce of milk every 3 hours currently and the rest of his nutrition comes from IV fluids.   

Joshua after his second surgery to remove 10" of gangrenous bowel.  You will notice how swollen he is from all of the fluids and inflammation from the surgery.  He was almost unrecognizable.

After a few days the swelling has started to go down and he is able to open his eyes again. 

 So instead of going home on August 31, we are facing another 3 months of living in the NICU with our little fighter.  We were naturally crushed, but so relieved Josh was going to recover, that it seemed a very small price to pay.  In learning more about the twisted bowel, we were told it only happens in less than 0.25% of gastroschisis babies.  Our odds of the original gastroschisis diagnosis were 1:10,000.  Now multiply that by 0.25% and we are talking about getting struck by lightning while being eaten by a shark kind of odds.  You can't help but ask yourself why.  Why did this happen to us?  What have we done to deserve this?  It doesn't help of course to ask these questions, but you still do.  I quickly came to realize the much more important questions are where do we go from here and how do we get there?  The answer is we are moving towards a completely healthy, normal infant.  We have the surgery ahead of us on 10/4, then we will have a 1-2 week period of letting Josh's intestines rest and heal after the surgery, and then we will work back up again to full feeds.  Then we will go to our personal Four Seasons resort - HOME.  Until then I will be living with Josh in the NICU while I attempt to keep a positive attitude about these confined living arrangements.  It should not be too difficult given the alternative - not having Joshua in our lives at all.

The first time I was able to hold Joshua after his surgeries.  I could not wait to get my hands on him again!

David and I have the support of so many during this unfortunate situation.  We can never thank our family and friends enough for the well wishes, prayers, positive thoughts, notes of encouragement, calls, and visits.  We could never make it through this without you all.  Thank you!
    

Joshua back in his big boy crib on the B side - our home for awhile.