The big 1st birthday and the best news ever!!

Joshua had a very big week, indeed!  Not only did he turn one, we also received the best news ever at his GI appointment on Friday.  Joshua thoroughly impressed the doctors with his weight gain and they decided to come down on his rate of fluids and talked about him coming off the fluids entirely at his next appointment on September 20th!!  He could have the broviac line removed about a month later so he may be line-free by Halloween!!!  I was completely stunned by this news, my mouth hit the floor several times during the conversation with the docs.  I was prepared and expecting another possible 6+ months of the IV fluids so imagining we could be done NEXT MONTH is shocking.  I am finding it all hard to process and I also don't want to get my hopes up too much because things can change so quickly with Joshua's condition.  We will keep hoping and dreaming that September 20th is the day Joshua no longer needs an IV. 

Yesterday we celebrated Joshua turning one with a family birthday party.  The birthday boy took a two hour nap beforehand and was a happy, partying little guy for almost 7 hours straight!  He had a lot of fun being the center of attention and receiving so many new, fun toys to play with.  Joshua loves to figure out new things.  It was very special to have all four of Joshua's great grandmothers on hand to celebrate!  The picture shoot with those four was quite a hoot :)

I want to say a special thank you to everyone who sent Joshua well wishes, cards, and gifts on his birthday.  It is incredibly comforting to know what a big cheering section our amazing little guy has behind him!  We are so very excited to share our wonderful news with all of Joshua's supporters.

 

 

 

 

 

 

 

 

Smashing his cake with chicken and gravy frosting since he can't have icing.  Joshua didn't care!

 

The four great grandmothers!

 

 

Love this face when he first figures out he can move around on this new toy!

 

 

 

 

 

 

 

 

Joshua's Birthday week!!

I can hardly believe it, Joshua is turning 1 on Wednesday!  And what a year it has been.  The first part was filled with intense fear and uncertainty, but ultimately Joshua's year has been defined by joy, hope, and triumph over adversity.  We could not be any prouder of him!

Celebrating an early birthday with cousins last month at the lake.

Once again it has been a month since I last posted so let me catch everyone up on what has been happening with the Little Man.

We had an unfortunate ER visit and 30 hour hospital stay a few weeks ago due to a pinprick hole in Joshua's central line.  As always, it was a stressful, frustrating visit to the ER.  We sat there for almost 7 hours before being admitted to our room on the 4th floor.  Joshua was stuck 3 times for a temporary IV while his CVL was repaired, he had a vein blown in his hand, and his poor foot looked like a pincushion.  We finally had enough and refused the phlebotomy team coming down to try again for the IV.  It took me having multiple conversations with different doctors including the head ER doc, the attending physician, and our GI team over the phone and in person, but we finally agreed to a plan to check Joshua's blood sugar with a heel stick every 3-4 hours to monitor his blood glucose to make sure it didn't drop below 60.  I was satisfied with this plan because Joshua is not really bothered by the heel sticks since he was used to them from the NICU, however the IV process is very traumatic for him (mainly because he has to be restrained which he hates).  I wanted to do anything possible to spare him the discomfort of additional needle sticks. 

We finally got Joshua settled in our room for the night after an exhausting day where the little guy was up for 8 hours, not allowed to eat (for absolutely no good reason I might add), and held down multiple times against his will to be stuck by needles.  It was not a good day for any of us.  I realized around 10 pm that I hadn't eaten, drank, or gone to the bathroom in over 9 hours.  It's very strange, your body goes into a sort of hibernation where all of a sudden the usual bodily needs no longer interfere with your extreme concentration on what is happening with your child.  I have had this experience many times before in times of crisis, but never realize it while it is happening.  Only later once Joshua is peaceful do I reflect back on the day and realize my body should be dehydrated and famished.  He did not sleep well in the prison-like hospital crib so Joshua ended up curled next to me on the single bed while poor David had to sleep on the cold, hard hospital floor in a sleeping bag.  Every other room we have stayed in has had two sleep beds, but this floor apparently only supplies one.  Go figure.  Our nurse tried to tell me at one point in the middle of the night that it was against the rules for Joshua to be sleeping with me.  I must have given her some kind of warning look (I'm told I don't have a poker face) because she backed off pretty quickly.  This was the first and only night in my baby's entire life that he has not been hooked up to an IV.  Joshua and I were snuggling with abandon and loving every minute of it.  It was the most peaceful night we have ever spent in the hospital even though Joshua had to be woken up every 3 hours to have his heel pricked.  His line was repaired without incident and we were discharged the next afternoon.

Joshua is now on his IV only 12 hours a day instead of the long-standing 16 hour a day routine we have had since January.  This extra 4 hours of freedom is fantastic since the little guy has started moving around pretty actively in recent times.  Now he can be free from the bed in the morning to roll around and army crawl to his heart's desire.  Joshua hasn't quite gotten the hang of crawling forward, yet, although he can move backwards quite effectively.  He also pivots around in circles and almost looks like he's break dancing - it's pretty hysterical.  This guy cannot WAIT to run around, I am starting to think he will skip crawling altogether and go right to walking.  He really enjoys standing up while hanging onto something for support.  Joshua is still seeing physical therapy twice a month and it is helping, but I think he is progressing more on his own from pure desire to move than anything. 

Besides the big first birthday, Joshua also has his one year pediatrician visit on Thursday and his next GI clinic on Friday along with his family party on Saturday.  He has no idea how busy his week is going to be!  Personally, I am looking forward to Sunday when we hunker down together at home to recuperate.

On the social side of things, Joshua has been on multiple trips to the lake to both Hartwell and Oconee.  He has also stayed with friends in Atlanta where he played with his 3 year old friend and laughed hysterically at a black Lab puppy.  It may be getting close to time for the Folden family to get a dog again.  Joshua is happiest when he is out and about discovering new adventures. 

 

 

A great report from CHOA! (and a visit to the zoo)

We received wonderful news at Joshua's visit to CHOA today!  The barium enema showed no obstructions, strictures, or narrowings - hallelujah!!  If the contrast study had shown any of these things, another invasive surgery would have been necessary which would be absolutely horrid.  The GI doc also cleared Joshua to eat veggies and he will be able to get off his IV fluids for an additional 4-6 hours starting next week!!  This is amazing for our daily routine - we will no longer have to keep Joshua occupied in bed or on the floor constantly keeping him untangled from his IV lines until noon.  It's a big change for us to receive all good news at one of these visits.  We are so very excited about his super progress! 

Pulling up grass while killing time in the CHOA garden.

And the highlight of our day at CHOA was meeting three of our favorite nurses for a long overdue visit!  We miss seeing these special ladies every day :)

 



Last week we took Joshua to the little Bear Hollow Zoo in Athens.  Although we have lived here for 14 years, we have never been to this free local landmark.  Joshua had a great time and we strolled around Memorial Park afterwards to extend our outside time. 

Happy to be out and about!

Watching the turkeys with Daddy

Prime candidate for the Ugliest Duckling. 
This guy had a hideous limp and everything, he was one jacked up duck.

Look at my split, Mom!

And now I'm ready for a nap.



Plodding along

I will start out with the typical apologies for the length of time between posts.  As usual, it has been a busy month with Joshua.  Let me catch everyone up on what we have been up to.

GI stuff - Joshua is scheduled to go back to CHOA on Friday, June 21 for a barium enema and GI clinic visit.  The barium enema will show us how things are moving through Joshua's system and whether he has any narrowings or strictures in his small intestine.  The flagyl antibiotic he is on has been helping reduce the number of bowel movements he has a day.  We still deal with really liquid stools which will, unfortunately, continue to be a problem for Joshua for some time. 

Feeds - Joshua is up to 85 mL of milk + hypoallergenic formula by mouth every three hours eight times a day.  If the clock is on a 12, 3, 6, or 9 (day or night), you know what I will be doing. He should be over 90 mL at this point if we followed the doctor's instructions, but we have to hold back if his stools get too loose - it is not good to push his system too hard.  You can end up taking steps backward.  Joshua is also getting chicken or beef baby food mixed with rice cereal twice a day.  He loves his baby food!  I hope we are able to start veggies with him soon. 

IV - Joshua continues to be hooked up to his TPN and lipids for sixteen hours a day seven days a week.  His rate is 24 mL an hour for those sixteen hours.  I am really hopeful we can go down to 12 or 14 hours a day at our next visit.  We learned recently that the suture reinforcing Joshua's broviac CVL has torn loose so his line is even more prone to being pulled out of position.  Joshua has become interested in the sterile dressing and has started to pull at it in addition to his IV lines.  It is so difficult to keep his little grabbing hands off of things on his own body.  We live in constant fear that his line will get broken or pulled loose and we will be on our way to the ER for a 2 day visit. 

Physical Therapy - we finally got Joshua started with physical therapy through the Babies Can't Wait program.  Our PT has been here twice and will be back this week.  Joshua is making really good progress with sitting up, pushing up, pivoting, and moving backwards.  He is so close to crawling and you can tell he wants to move very badly!  I think it will be any day now.  Joshua had an appointment at the Emory Children's Center Developmental Progress Clinic last week to check up on his development and delayed motor skills.  The therapist was impressed with how far he has come since we were there in January.  The next appointment in October will be focused on assessing his cognitive abilities. 

 



 

Playtime - Joshua continues to love playing with all of his toys (and he has a lot of them!).  He especially likes things with lights, sounds, and colors. One of his favorite pastimes is watching cartoons on BabyFirst TV (this is a sanity saving baby channel on DirecTV).  We let him watch TV while he is still hooked up to his IV in the morning and I think it is one of his favorite times of the day.  His favorite show is actually not a cartoon, but a British show called Tec The Tractor.  That little red tractor keeps him entertained every day while he is immobile - we are huge Tec fans around here!  Joshua loves riding in anything that moves including his stroller and definitely his new swing. 

  

 

 

 

 

Talking - Joshua started talking a few weeks ago.  His first word was DaDa and he wore it out for about a week before the next word came... MaMa.  Now any time he wants anything he starts saying mamamamamama over and over again.  Now that he is vocal, he is able to vocalize his displeasure about many things.  The little man has started showing a bit of an attitude.  I staunchly maintain I have no idea where this attitude could have come from!

 

Travels - Joshua has been up to Oma & Papa Pete's lake house at Hartwell several times.  He does wonderful on the boat, lying in the cuddy cabin sleeping or playing.  He does not do well at night in a different environment.  We went through several nights where we considered driving home at 3 am.  This does not bode well for our lake trip next week with Papa & GiGi at Lake Oconee.  I am bringing plenty of ear plugs with me for the family - they don't seem to believe me about how loud he can be when he's upset at night.

 

Bills - I haven't written much about the mountain of medical bills we have amassed over the last 10 months.  Although we have insurance, it certainly does not cover everything.  I have been working diligently for six months to get Joshua approved for Medicaid through the Katie Beckett program.  This is a special medical exemption program that does not consider your finances for eligibility.  You have to prove that without the parent or guardian's care at home, the child would have to be institutionalized to receive the proper medical care.  It has been a ridiculously frustrating, bureaucratic nightmare of a process.  But, a few weeks ago we finally received Joshua's all important Medicaid card!  This allows us to file Medicaid as a secondary insurance retroactive to 10/1/2012 so it will cover most of the bills United Healthcare does not (although we still have August and September to worry about).  Now that Joshua has his Medicaid card, he is eligible for other programs that I have to start researching.  The first one is the WIC program that will help us pay for the expensive hypoallergenic formula Joshua needs.  To apply for this, the first step is I have to take Joshua to the county Health Department for an assessment.  So today Joshua is making his first visit to Nellie B - otherwise known as the ghetto in Athens.  Should be interesting...



 

A night in the life of a Mom

The last few weeks Joshua has been having less of the painful bowel movements he had been experiencing.  He has been on antibiotics to help control bacterial growth in his intestines.  I do not know if the antibiotics are the reason the bowel movements have been less painful for Josh, I am just so happy he has had some relief from the daily painful poops.  Less pooping does not necessarily equal more sleep for Mom, however. 

To give you an idea of what I mean, last night went like this:

1:00 AM - I make it to bed an hour later than normal because I decided to spend some much needed time with David.  Some days it seems like we are strangers passing in the hallway since our schedules are so different.  We hang out on the couch talking and I reward myself with a few glasses of my favorite wine.

2:15 AM - I am rudely awakened by one of Joshua's pumps alarming.  There is air in the line so I need to remove the tubing from the pump and thump it until the air bubbles go back up into the bag of fluids. 

2:30 AM - The pump is working again.  Now it is time to warm Josh's 3 AM bottle.  I climb into bed and drift off while I wait for him to wake up.

3:00 AM - Josh wakes up promptly for his bottle.  He poops while I am feeding him.  When I go to move him back to his side of the bed, I realize there is poop everywhere.  I scrub Josh's back, change his diaper, his whole outfit, and the blanket he is sleeping on. 

3:30 AM - I have Josh settled back to sleep, but it still is not time for me to lay back down.  I have to pump for half an hour. 

4:00 AM - After putting my milk up and making a feeble attempt to wipe the poop off my sheet, I crawl back in bed and think about the fact that Josh will be waking up in less than two hours for his next bottle.  It's 4 in the morning and I have only had an hour of sleep, this is not shaping up to be a good night.

5:25 AM - Josh wakes up crying and I jump up to get his bottle warming.  I fall down next to him and try to console him while the bottle warms.

6:00 AM - Josh has eaten, but now he is babbling up a storm and not ready to go back to sleep.  I plop him on my chest and hold him still for 15 minutes until he finally passes out. 

7:35 AM - Another piercing beeping rockets me out of a deep sleep.  Josh's lipids have run out early because it took me too much fluid to prime his tubing last night.  Sometimes it is really difficult to get all of the air bubbles out of the line.  I slide Josh off my chest without waking him somehow and get out of bed to turn the pump off and clamp Josh's line. 

8:25 AM - Josh begins to squirm in his sleep and I know I need to get his 9 AM bottle warming.  I drift off while I wait for him to wake up to eat.

9:00 AM - Josh is once again punctual with wanting his bottle.  I change his diaper before I feed him hoping that getting rid of the pee pee diaper will help keep the poop in the next time.  He poops while he is taking the bottle.  Son of a ...!  The poop escaped from the diaper again so it's time for another full outfit change. 

9:30 AM - I have Josh settled, but he is not going back to sleep.  I realize it is time for me to pump again so I couldn't go back to sleep anyway, no matter how badly my body needs more rest. 

9:45 AM - While I am pumping, Joshua lays next to me babbling sweetly away.  He rolls over to hug my leg and looks up at me with the biggest Joshua smile.  My heart melts.  I play peek a boo with him and he squeals with delight.  I marvel at this precious gift I have been entrusted to care for and protect. 

10:15 AM - Time to shake off the cobwebs, strip the sheets, and get ready to soldier through the day knowing I will be doing the repeat of above 12 hours from now.  Because that's what moms do.

I would like to wish an early Happy Mother's Day to all the dedicated mothers of the world.  I consider myself privileged to count myself among you this year.

Visiting Egleston

Joshua had a follow up appointment at the GI clinic on Friday.  We were so happy to learn he gained 12 ounces and is now up to 17 lbs 2 oz.  Joshua also grew almost 2 inches in the last six weeks and measures in at a lengthy 28 and 1/4".  I think that puts him around the 10th percentile for weight and 75th for height so we are continuing the tall and slender trend.   

Joshua at Easter

As usual our appointment started out with the nurse coordinator.  After bringing up the issue with Joshua's painful bowel movements, the doctors made the same assumption everyone else does - that Josh must be constipated if he is having trouble getting poop out.  I understand this is the case with most children, but not with Joshua.  He has chronic diarrhea because of his condition so stools being too formed is never the problem.  Joshua takes imodium four times a day to slow down the natural movement of his intestines to try and reduce his diarrhea.  The doctors suggested we cut his imodium in half to see if it helps his painful BM's.  While this may seem like a valid suggestion, I knew it was a terrible idea since coming off the imodium will lead to Joshua having completely watery stools.  I tried to patiently explain to them like I do with everyone else that he is the furthest from constipated and cutting down on the imodium will only lead to worse diarrhea and immediate diaper rash. 

Thankfully Joshua needed to go while we were at the appointment so I stuck my head out the door and called for the doctors to come observe a poop in progress.  Just like he always does, he turned bright red as he struggled to get the poop out.  If you didn't know any better, it looks like he has a terrible rash all over his body during and right after a poop.  The doctors asked if he always turned that red and I explained that he does. Once the doctors saw the consistency of his stool, they backed off the idea of cutting his imodium in half (I wasn't going to do it anyway no matter what they said).  I know I'm not a doctor, but I have a Ph.D. in Joshology and I am confident I know more about what is going on with my son than they do.

I again explain my theory that it is the building up to the poop that causes all the discomfort for Josh and not the actual pooping process itself.  I think it has to do with the contents of his intestines rushing through his system too quickly because of how short his bowels are and because of the missing ileocecal valve.  The surgeon seems to believe me by this point, but the GI doc still seems skeptical for some reason.  
He thinks it could be bacterial overgrowth causing the painful bowel movements so Joshua will start on two rounds of antibiotics this week to see if that helps.  I was just relieved to hear him say that this is not normal for a kid with Joshua's condition because I was starting to believe Joshua was just going to have to learn to live with the discomfort.

The GI doc also thinks Joshua could be allergic to more things than just dairy because there is still traces of blood in his stool despite my extreme avoidance of all things dairy.  He turned me to and said "No eggs, No peanuts, No shellfish, and No citrus."  I look around in wide-eyed bewilderment as I try and comprehend what is coming out of his mouth.  I already struggle with finding things I can eat with no dairy,  now I am supposed to cut four more categories out of my diet, too?!  I start to hyperventilate as I mentally tick off all the things now off limits to me - all breads, anything with mayo, shrimp, and FRUIT for goodness sake!  I am totally freaked out by this point and even more disconcerted as I look around the room and no one else seems the least bit concerned.  Finally I mumble something about being able to find something to eat and the doctor laughs and says he wasn't talking about me, it's Joshua that can't eat those things.  Um - HELLO - Josh is on an all milk/formula diet for the foreseeable future.  Of course he isn't going to be shucking oysters any time soon.  Good grief!  Are you trying to give a girl a heart attack?!

If the antibiotics do not clear up the bloody stools and painful bowel movements, Joshua will go back to the hospital for an upper GI endoscopy and another colonoscopy to see what is going on structurally and to determine how inflamed the interior lining of his intestines are which will give us an idea about other potential allergies.  For now, the doctors are holding off on increasing his milk levels until we can figure out what is going on so he is stuck at 75 mL for a while.  Besides the bacteria theory, the GI doc also suggested Josh's bowels could have reached the limit with the amount of sugar they can process currently which could be causing his painful poops and chronic diarrhea.  Let's hope this is not the case because the only thing that will make this circumstance better is time.  And more time on his IV fluids is not what I want to hear.       

Joshua meeting his Great Aunt Cindi

Rough nights in Joshua land

For about three weeks now Joshua has been having multiple painful pooping sessions a night which make for a very unpleasant nocturnal experience for both mommy and son.  This coincided with Josh's introduction to rice cereal so we stopped the rice cereal for 10 days, but unfortunately things have not improved.  He will wake up screaming sometimes 45 minutes prior to actually pooping with what I can only assume is terrible cramping.  I can hear and feel his little tummy building up to the poop and I just wish so badly that I could make it happen sooner and relieve his discomfort.  There is little I can do to console Joshua during one of these episodes.  I stroke his head, sing softly to him, rub his belly - anything I can think of that might distract him from the unpleasantness, but nothing really helps.  He gets so worked up that even after the number two is over and done with, he is still so upset and can't go back to sleep without significant effort on my part.  Some episodes involve hysterical crying to the point he struggles to catch his breath and I have to whack him on the back.  We made the somewhat difficult decision to put Joshua in the bed with me so I can simply roll over when these episodes occur.  I did not want to start the bad habit of having Joshua sleep with me, but it has been the only way all three of us are able to get any sleep.  The absolute best sleep we get is when I pull Joshua on my chest to calm him down.  I haven't been able to get that kind of deep sleep since July so bad habit or not, I'm going with it - this is survival folks.   

I have spoken to the GI doctors before about the painful bowel movements, but they kind of blew it off and said all babies experience discomfort while pooping as they learn to use new muscles.  That answer is a bunch of crap if you ask me, no pun intended.  I think it boils down to the fact that the doctors don't know what babies with short bowel syndrome and missing their ileocecal valves actually feel like and they don't want to admit it.  All the emphasis is put on knowing the exact combination of nutrients required for growth, the exact length of healthy bowel left, the precise amounts of weight gain and so on.  How about the questions like what is my little boy going through when he screams and writhes in agony during multiple stools a day and how will my son's quality of life be affected long term?  The doctors have stressed that Joshua's intestines will continue to grow and adapt in time so he will no longer require the IV fluids.  However, his ileocecal valve was permanently removed and I am just beginning to understand the possible implications of this unfortunate occurrence.  The ileocecal valve (ICV) is the only portion of the GI tract that absorbs Vitamin B12 and it regulates the flow of stool from the small intestine into the colon, as well as prevents backflow of bacteria from the colon into the small bowel.  People who lost their ICV's as adults report severe lethargy in addition to persistent diarrhea and lack of warning prior to bowel movements.  We just don't know what the consequences for Joshua will be in the long run and for now he can't tell us what he is feeling.  My worries for Joshua are intense and constant, I just want him to be able to experience a normal healthy life. 

The prince on his throne in our bed.

 
Needless to say, I have been struggling lately to keep an optimistic spirit.  I am so friggin' tired of watching my son suffer night after night.  I have witnessed him suffer every single day of his life and I am starting to feel like it will never end.  I know people don't want to hear this type of news.  People want to think that because we are home and Joshua is getting bigger and smiles a lot that he is all better.  I wish this were the case, but the reality is we are still so far from Joshua being a healthy child.  On Friday we will go up on feeds to 70 mm of milk every 3 hours.  This was the landmark Joshua reached at the end of August the day of his tragic malrotation incident.  For seven months we have been battling to get back up to the same amount of milk Josh was able to take when he was a month old.  It's pretty depressing to think about.  To top if off, I weighed Joshua yesterday because it has been about a month since his last weigh in and we are not scheduled to go back to Egleston until April 12th.  According to our scale at home Joshua was 16 pounds even the first time and 16.2 pounds the second which means he has lost weight in the last month.  This is very disturbing news since it means the drop in the rate of his IV fluids last month has resulted in a halt in his growth.  Now I question whether we will make any progress at all at his next doctor's visit since they base everything on weight gain. 


And don't even get me started on the bureaucratic nightmare I am in the middle of trying to get Joshua government benefits and physical therapy.  I have been attempting to accomplish both these things since January and the process is maddening.  A nurse practitioner visited our home in January to assess Joshua for acceptance into the Babies Can't Wait program that will provide hin with physical therapy and also occupational and speech therapies if he needs them.  They have a 45 day admission period so Joshua should have started the program at the beginning of March since the nurse practitioner told me he would definitely qualify for services based on his medical condition and gross motor delays.  I started making noises in mid March when I hadn't heard from anyone at Babies Can't Wait and I eventually learned that the nurse practitioner never turned in the referral from her evaluation so no one at the program had ever heard of Joshua.  What?!  My child has been waiting for two months to get therapy he desperately needs and you are telling me he has to wait another two months because someone forgot to turn in paperwork?  [Insert foul language here] Joshua is behind on just about every aspect of his gross motor development including sitting up, crawling, bearing weight on his feet, etc.  He is now slated to start therapy in late April, much to my dismay. 

Despite all my fears for him, the rough nights, and my negativity surrounding his recovery process, Joshua continues to wake up with a smile on his face every morning and brightens every aspect of my day.  He is such a trooper and I am fiercely proud of him.  Joshua had his first visit to a park last week when the weather was nice and we am so looking forward to more outdoor activities once spring finally settles in.

Adventures with cereal!

I know I have been terribly negligent in keeping the blog updated recently.  Happily, this is because things have been status quo around here - no major news to report.  And that is just the way we like it! 

Joshua has been enjoying lunches out with friends and seems to really be stimulated by being out and about.  He charms the ladies wherever we go!   People love it when he smiles at them.  They turn to the person next to them and excitedly report - "he smiled at me!".  I think it makes them feel special so I hate to burst their bubble and let them know he smiles at everyone.  Literally everyone.  He is such a sweet, sociable baby.

On Friday we went back to Egleston for a follow up appointment at the GI clinic.  Joshua had gained one pound since our last visit 4 weeks ago.  He is up to 16 lbs. 6 oz.  The doctors were very pleased with this rate of weight gain since they only expected him to gain half a pound based on the calories he is getting.  I interpret this to mean his body is absorbing more of the nutrients from his milk than expected which is wonderful news!  The doctors reduced the rate of his IV fluids so Joshua is now at a 50/50 ratio of calories from milk vs. fluids.  We have to work this down to 100/0 before he can have the central line removed.  We are making progress.  The big news of the visit was the approval to start giving Joshua as much rice cereal as he wants.  Woohoo - semi solid food!   For now Joshua is getting 2 oz. of breastmilk + hypoallergenic formula mixture eight times a day with rice cereal mixed into two bottles and fed in solid form twice a day. 

The big rice cereal introduction was yesterday.  It was the first time for Joshua to sit in his highchair and eat solid food!  Just like everything so far, he was willing to give it a try.  I still can't tell if he really likes it.  He opens his mouth readily enough, but the faces he makes when the rice cereal goes in are quite unpleasant.  It will be fun to start introducing the good baby food when he is ready.
 

 

  

Getting good news - finally!

Although we made the huge step of coming home in December, Joshua's progress with his GI issues has been very very slow.  He has been at the same level of feeds since mid November and we have not made any progress with lowering his rate of IV fluids.  My number one focus is getting Joshua off his IV fluids as soon as humanly possible so the last few months have been very frustrating for me from that standpoint.  Joshua had his second follow up at the GI Clinic at Egleston last Friday.  I was very hopeful we would make some step forward no matter how tiny. 

When the nutritionist told us his recommendations I was pleasantly shocked: increase Joshua's feeds by 5 cc every two weeks,  reduce his daily total fluid intake from 650 ml to 570 ml, and reduce his time on the IV fluids from 19 hours to 16 hours a day.  We get an extra three hours of freedom for Joshua every day - that is huge!  We can finally see light at the end of the tunnel with a real plan for progressing his feeds and reducing his IV fluids.  I knew it would happen eventually, but in my mind it was always a far off "someday".  Now we can say it is actually happening!

In other news, Joshua had his 6 month check up at our pediatrician on Monday.  These appointments seem so trivial after the GI clinic where we see multiple highly regarded specialists in an hour.  The nurses at our pediatrician's office do not know what to do with Joshua's lines.  They ask questions like "what is wrong with him?" and "will he get better?".  Our doctor is great, however.  I can tell he reads every addition to Joshua's file very carefully.  He is always up to date on the latest news from Egleston.  Joshua was in the 20th percentile for weight (up from the 10th percentile at birth), 70th percentile for height, and 50th percentile for head circumference.  So he is tall and lean with an average sized head - pretty good proportions considering his mom is short, not terribly lean, and has a much larger than average sized head.  (It's a trait I get from my maiden side, luckily along with thick hair to cover the aforementioned bulbous skull.)   

Joshua and I continue to enjoy each others company at home!  We go on walks as often as the weather allows.  He always rocks his sunglasses and I just know he feels so cool in them :)

Happy 6th month birthday, Joshua!

Joshua turns 6 months old today.  I can hardly believe it!  The first six months have been the most intense emotional roller coaster I could ever imagine, but here we are today with a happy, vibrant, thriving infant.  We are truly fortunate!  There are so many people that have helped us get to this point - literally too many to personally thank.  From the nurses, doctors, and other medical staff that tend to Joshua's health needs, to our family and friends that have showered us with visits, love, gifts, and food to the complete strangers that have donated money to help with Joshua's medical expenses, we would like to express our profound gratitude.  We can never adequately convey our appreciation.

Joshua has stolen so many hearts and I know he will continue to do so with his charming personality and eager smile.  I am often asked by people if Joshua is "always this happy".  And the answer is Yes, unless he is tired, hungry, or pooping, he is a joyful little boy.  My pride and love for him are overwhelming.  Six months ago today we had the immense fortune of meeting our amazing, beat the odds, Superman of a son.  Our lives will never be the same.       

A terrible scare and another ER visit

Just when I thought we were settling into a comfortable routine, I was slapped in the face with the reality of Joshua's situation on Wednesday evening.  David and I were moving Josh to the back of the house (it's much easier to do with two people when the IV pole is involved) and into bed when I heard a snap, Joshua cried out, and I saw blood pooling underneath his outfit.  My immediate thought was the worst possible scenario was happening - Joshua's chest tube had ripped out and he was spurting blood from the entry site.  [Insert objectionable language here]  I had been taught emergency procedures before leaving the hospital for just this situation although at the time I thought it was quite unlikely to happen.  I knew I had to stop the bleeding first and foremost.  I ripped Joshua's pants and onesie off in a complete panic trying to brace myself for what I was about to see.  To my immense relief the chest tube was still sutured in place, but the sterile line had snapped in half making it impossible for Joshua to receive the life sustaining nutrients he needs.  Even though it was not the worst case scenario, it was still very bad. 

Joshua's central line snapped in half below the clamp.

Luckily the snap occurred below the clamp so I was able to immediately clamp off the line before completely freaking out.  I called our home nurse, but I knew the whole time that we had to take Joshua to the ER.  He simply cannot go for more than a few hours without being on his fluids.  I was incredibly upset with myself and understandably distraught by the situation. I still have yet to figure out what the line caught on that caused the snap.  I have been reassured by countless doctors and nurses that this happens all the time and is just one of those things you have to deal with when you are raising a baby on long term IV fluids. 

We arrived at the Egleston ER around 1 am and Joshua had his line repaired within a few hours.  This was wonderful news since we were not sure if the line could be repaired or if it would have to be replaced which would require another surgery.  The bad news - after a line repair you have to stay in the hospital at least 24 hours to confirm proper performance before going home.  Joshua is expected to be released Friday morning.  One of the most disturbing things we have heard from both nurses and doctors is that this will more than likely happen again and may happen several times while Josh is still on the fluids.  Say what!?  We were told to be prepared to have more ER visits and overnight stays in the future.  This is terribly difficult for me to accept.  We have to live our lives in constant fear of having to pack up our stuff and rush to Egleston on any given day.   A rather unpleasant way to exist for sure.

Joshua, on the other hand, does not seem to mind coming back to the hospital at all.  He is a total ham in front of the nurses and loves socializing with all the different people that come in his room.  Josh is constantly winning over the hearts of new staff members.  Below is a short video of Joshua chattering away as a nurse searches for a vein to put an IV in.  He has tourniquets on multiple appendages and the nurse is thumping away on his skin looking for the best vein, but Josh doesn't seem to mind.

 We waited in the ER for around 5 hours before being admitted to our room on the 6th floor.  The line repair occurred at the bedside in the ER which was a good thing, because I pointed out three different mistakes to the surgery resident who was performing the repair solo - no other nurses or doctors were present so I was the only one observing what was happening,  This is highly abnormal for Egleston since it is a teaching hospital, there are always multiple people observing/learning/teaching.  I ended up lodging a formal complaint against the surgery resident and was strongly backed by our nurses once they saw his handiwork.  The dressing that is critical to maintain a sterile field around the line insertion site in Joshua's chest was done completely wrong and exposed Joshua to all sorts of nasty hospital bacteria that can easily cause a serious line infection.  I am now watching Josh like a hawk for any signs of infection.  I will hunt down that resident and beat him to a bloody pulp if Joshua comes down with a line infection.  Forget complaints and lawsuits, I will go for blood.  I was already forced to watch Joshua have the dressing changed again once we got up to the 6th floor.  He was absolutely exhausted by this point and the second dressing change threw him into a tailspin.  If looks could kill, that resident would have collapsed on our floor during that process.

I want to see Joshua happy and smiling again in his Bumbo chair at home!  We are so hopeful this can happen by Friday afternoon.  I guess we will have to navigate our way through this freezing rain event first.  Stay safe out there folks!