Feeding Cohen: How To Setup a Kangaroo Joey Feeding Pump

Our littlest bullfrog doesn't do things conventionally... so why should eating be any different.  For the past nine months he has required enteral feedings to survive.  He had a NG tube placed last September but was later switched to a gastronomy tube (G-tube) because he can't eat food and refuses to take in his formula orally.  Our little guy is on continuous feeds for 22 hours a day, which requires us to refill his formula every four hours around the clock.  

The idea that your child needs external resources to thrive is difficult to digest and can be very stressful at first.  We were just kind of thrust into this new life and given very little instruction on how to navigate through it.  Although, I was given a brief lesson on how to run our pump during our discharge, my sleep deprived overwhelmed mind was less than focused. So when an IV pole (which required setup) and a bag full of supplies finally arrived at my door at 11:00 at night I was feeling slightly defeated to say the least!    

I have created a video, which explains the basic steps of setting up an enteral feed.  I hope this information will become a resource for others that are trying to feel their way through this process.  

Just remember you are not alone and things will get easier as you become acclimated to this new way of feeding your little one. 

1 Peter 5:7 Casting all your anxieties on him, because he cares for you.

Life With An NG Tube

Our Little Puzzle: Cohen Update

Have you ever spent countless hours working on a puzzle only to find out as you neared the end there were valuable pieces missing?  Sections come together but without these key pieces the image is lost... and so the frustration sets in as you frantically search for those clues necessary for revealing the BIG picture.  Now hold that thought!

Meet our little puzzle....

And quite the complicated one I might add, but with every new appointment we learn more and more about our little superhero.  Our doctors are doing their best to help bring as much clarity as possible to our situation.

One of the most difficult things I have heard thus far is....."We may never know why."  I am a person who likes to research and find answers to problems and it is hard to except that sometimes there just aren't any.

I spend countless hours pouring over my sons's medical records, lab reports and searching for information on the computer, it is my job to keep looking!  When you are dealing with something rare and undereaserched you become the expert for your child!  I have learned some valuable lessons along this journey...

~Even with well-intended physicians you may not receive the best advice, in fact in our case it was quite dangerous.

~Although I don't posses a medical degree I am the expert on my child's illness, not discounting the valuable knowledge of medical professionals but every doctor can't be an expert on every illness.... so we searched for ones experienced with our disease.

~I must always listen to my instincts.... going against incorrect medical advice is not only acceptable but my responsibility.

~People aren't perfect and there are no exceptions in medicine, so I must be prepared for mistakes and have the courage to confront those making them (despite all that was written in Cohen's chart about NO FOOD and the allergy alert bracelet on his leg stating FOOD....they still tried to feed him).

~I have the most amazing support system of friends and family and I don't know where I would be without their love and generosity.

~God's grace is ALWAYS sufficient and will see me through!!

Our Newly Discovered Puzzle Pieces
We met with our new GI, Dr. Putnam at Cincinnati's Children Hospital and I found myself hearing some familiar words.  Much of what he said confirmed what our allergist at Johns Hopkins had stated, but he went a step further.  He was very honest in his explanation.  He discussed with us what is known about FPIES, there is far more that they don't know and may never know, and that they have theories that desperately need research.

Here is the break down on what he believes is going on with OUR superhero:

• Cohen is a severe reactor and we may never know why he reacts to so many foods.

• Refereed to him as a severe hypersensitive immune responder: 

So in other words... When we get sick our bodies respond by creating antibodies so that it will recognize the illness the next time and be able to fight it off easier (pretty awesome handy work God).  For some reason Cohen's immune system responds to food the same way and according to our GI the more we feed him the sicker we are making him.

• Dr. Putnam's theory:  Stop all food trials for as long as we can in an attempt to reset Cohen's immune system and hopefully reintroduce foods later without reactions.  There are no guarantees but we have nothing to loose.  He was very passionate about educating people that children like Cohen only get sicker the more we try to force food on them, which only supports why he is so resistant to eating food. To Cohen FOOD = Pain

• Then we asked the burning question: Are we dealing with an extremely severe case of FPIES or is there more going on?  His response was, "Yes, that is our big question and we will try to figure out more but unfortunately, we may never have all of the answers."

Where Does This Leave Us Now?  
It was determined that Cohen urgently needed a G-tube placed because of his increased risk of aspiration as well as other concerns.  After the surgery we were admitted into the hospital and began the daunting task of gradually increasing formula feed rates and concentrations.  Cohen didn't tolerate the faster rate at first and began to loose weight.  We finally managed to increase both and stop the weight loss, however we never regained any.  Since home he has lost a little more and is weighed weekly by his pediatrician and monitored for belly distention.  Our little man has also been having more issues with blood and mucus stools, which only leaves us with more unresolved questions.

In our FPIES world we are usually left with many uncertainties, filtering through symptoms as best we can.  This is very difficult for the type A in me (yes, I have a slight obsessive compulsive side.... there you go honey I admitted it).  I like concrete answers, written in black and white.... this living in grey is a struggle for me.

So I have learned to triage....deal with what needs attending to at that moment and not dwell on the unknowns of this illness.  I am a work in progress, learning to turn things over and worry less...

God, grant me the serenity
To accept the things I cannot change,
Courage to change the things I can,
and wisdom to know the difference.

We will continue to fight and advocate for our little superhero and diligently work to keep him thriving.  Life isn't easy but it isn't suppose to be.  Our situation makes us far more sensitive to others and what they are dealing with.  My older children look at life differently because of the strength that they see in their little brother.... what a beautiful reminder for all of us that true joy doesn't come from this world!!!

Devil May Have Scored But God's Still Ahead!

You could say that it has been a rough few months for our family.  If you have been following our story you know about our struggle with Cohen's FPIES and his surgery and hospital stays.  In addition to what has been going on with Cohen we have had two of our little butterflies undergo surgeries as well. Then....just to top things off my wonderful husband's car decided to end it's life, no worries though God provided for us once again..bigger and better than we could have imagined.  During that process our little bullfrogs, butterflies, and myself had been left to spend a lot of time together hanging out at home while daddy used our car to get back and forth to work, which made grocery shopping extremely difficult.
Even beyond the recent trials there were many, many visits to many different doctors throughout this past year (that's a lot of many(s)....right!).  Our list includes...  x-rays, ultrasounds, pulmonary test, scopes, blood work, I.Vs., echo cardiograms,

and...
hospitals stays. I lost count somewhere around 75 (seriously no exaggerating just ask my friends that graciously kept my other children so that I could make these appointments).   I think I forgot to mention that somewhere in the midst of all this my big bullfrog was shot by an air soft gun damaging his retina and drain in his eye, I think he just felt left out of all the doctor visits.  Thankfully he is almost fully recovered and doing well but he required two appointments a week for over a month and then every week for two more.  So I guess you could say we have been rather busy for awhile...... but hey let's be honest I really brought all of this on myself!

Yep...I am ready to accept responsibility, I have blatantly made myself a perfect target for trials.  I have been working hard on my relationship with God and digging into His word trying to figure out His will for my family.  So you see it stands to reason that I am going to be attacked....and attacked I have been!  But I refuse to let the devil win!!  Those who have encountered his attacks know that he doesn't fight fair and he loves to kick us when we were are down....in fact when we are down is his favorite time to strike us hard.

What the devil doesn't get is that I am never down by myself, and I am never without my greatest source of strength.  My God will never forsake me or leave me and in the midst of any trial I will always have my joy.  So I will choose to find joy in these trials as well...

I could be mad that my children are chronically ill..... but I will choose to be glad that they will survive their illness.

I could be frustrated with doctors appointments and hospital stays.... but I choose to be glad that they have brought us closer to managing my little ones illnesses.

I could say why them, why me.... but I choose to say "how can we be used for Your kingdom through these experiences?"

I could complain about how much easier life should be... but I choose to be thankful that it isn't more difficult.

I could be angry that I can't do more to help my little ones... but I choose to be grateful that the One that loves them even more than me..... can!

I could be hurt that difficult times seem to continuously fall upon our family... but I choose to be thankful that I have been given the opportunity to be a part of this beautiful family.

I could hide behind my insecurities of being different from others and give into my fear of being a lesser mother than my peers... but I choose to shout to the world about what God is doing through these trials and accept my inequities, embracing my lessons in humility.

I could blame my God for all of this... but I choose to believe that He never wanted this world to contain sin and it is that same sin that causes trials in our lives. Once sin entered this world we all became destined to face trials in our lives (we can thank Adam and Eve for that one).

If I give into every "I could" I will be allowing the devil to score, so I will stick with the "I chooses" and give my God the upper hand, while I watch in astonishment as once again He defeats the enemy.  Unfortunately, these attacks will never cease and I know that the devil will not give up, so I will shield myself as best I can with the Words of my God.  It is through His strength that I can get back up and prepare myself for the next battle, knowing that something greater is at stake.  The devil will never stop....but he will never win!

Thank you God for never giving up on this imperfect person that I have become, one day I will once again be the perfect creation that you molded into existence.

Ephesians 6:10-18

The Armor of God                                                                                                            Finally, be strong in the Lord and in his mighty power. 11 Put on the full armor of God, so that you can take your stand against the devil’s schemes. 12 For our struggle is not against flesh and blood,but against the rulers, against the authorities, against the powers of this dark world and against the spiritual forces of evil in the heavenly realms. 13 Therefore put on the full armor of God, so that when the day of evil comes, you may be able to stand your ground, and after you have done everything, to stand. 14 Stand firm then, with the belt of truth buckled around your waist, with the breastplate of righteousness in place, 15 and with your feet fitted with the readiness that comes from the gospel of peace. 16 In addition to all this, take up the shield of faith, with which you can extinguish all the flaming arrows of the evil one. 17 Take the helmet of salvation and the sword of the Spirit, which is the word of God.18 And pray in the Spirit on all occasions with all kinds of prayers and requests. With this in mind, be alert and always keep on praying for all the Lord’s people.                                        

Life With a NG Tube

Dawn hadn't finished making it's debut when somewhere out of the ten pairs of eyes peering my way came the question.... "Are you okay with him going home with a NG tube?"    This was a brand new place in life for me and I wasn't sure what to say, but then I heard the words "I will do whatever is best for Cohen", leave my mouth.  The room became a sea of nodding heads and voices that murmured in agreement, "We feel this is necessary for your baby to thrive properly".  

The next question that came through the crowd of white coats was, "Do you have any questions?"  Do I have any questions????   I looked around the room and suddenly I had immense compassion for the zoo animals that find themselves gawked at through cages on a daily basis.  Confusion raced through my mind... how did we end up at this place in life?  I gave birth to a beautiful healthy baby boy and now somehow we are in a hospital room surrounded by well intended individuals that appear to have as much concern over my child's well being as I do.  The long week in that small sterile room was beginning to take a toll on me and I was ready to get my family home. 

Just a boy and his pole!

It was pitch black outside and quickly approaching midnight when the headlights finally pulled into my driveway. As I opened the door the man handed me a large bag of supplies and an I.V. pole then he disappeared as quickly as he came.  I stood there in my living room staring at these foreign objects that were left in my care.  I opened the bag and began to fumble through the instruction for putting together this vaguely familiar equipment. It resembled the hospital machines that I spent day after day with... but this was different, now I am the one responsible for these beeps and buzzes.

When I reflect back on all of those faces and the questions that they posed I realize now.... that in all of my educational experience there was nothing that had prepared me for this part of our journey.  I have cared for the needs of four other little ones and thought that I had seen or experienced most everything.... until now.

I have been left to my own devices  for figuring out this new way of feeding my sweet boy.  Prior to leaving the hospital I was given a brief lesson on how to run the feeding pump but that was the extent of my tutorial on the matter.  I am teaching myself as we go and much to my surprise there is more to it than I had imagined.  I'm not sure what I thought it would be like... to be honest I couldn't see that far down the road at the time.

I am grateful for a wonderful on-line community of parents that are walking this very similar journey with us.  It has been through their direction that I have been able to learn how to care for my child and his feeding tube.  When we began this FPIES adventure I frequently saw the enduring term "tubies" used in reference to children with severe feeding issues, but there was a line of separation for me.  Feeding tubes happened to other unfortunate children with FPIES and I rested comfortably knowing that this would never be a reality for our little guy (those things happen to other people).  It was never on my child-rearing radar that I would find myself with the unique challenge of caring for my own little "tubie".  

I am learning something new every day about properly caring for Cohen and his tube.  With the help of some very experienced mothers I was able to learn a new way of taping his tube against his face.  Cohen has been wearing his "no-no's" since he left the hospital, my little opportunist would seize every chance he could to rip that plastic nuisance off his face.  Although, it broke my heart to keep him in those arm guards I knew that it was a necessity, the pain from ripping out his tube would be far greater than the discomfort of the restraints.

   

Last night was the first time in two weeks that my sweet little man was able to enjoy the freedom of sleeping without his "no-no"s"...   his mama finally learned how to properly tape the NG tube so that he can't pull it out.   My on-line research also opened my eyes to the possibility of allowing my little guy the ability to be mobile during his HOUR long feeds.  His new back-pack arrived today in a highly anticipated, much-like-a-Christmas package shipment excitement (seriously there were shouts of fanfare as the truck pulled up and a greeting committee of four little package ushers).  We are all a little excited at the opportunity for freedom that this gives our newly waddling toddler.

Not quite digging the back pack yet!

Apparently someone has been watching his
doctors and has learned a thing or two!

Finally, just as I am beginning to feel like I am getting a handle on all of this... the UPS shipments begin to roll in.  Big Brown has been quite the frequent visitor at our home lately.  Once again I am hit with a whole spectrum of emotions as the huge pile of supplies and equipment create a new realization for me.... turns out that we aren't exempt from this reality after all!

2 Corinthians 4:8-9  We are hard pressed on every side, but not crushed; perplexed, but not in despair; 9 persecuted, but not abandoned; struck down, but not destroyed.                                                                                  

http://www.feedingtubeawareness.org/index.htmlhttp://www.feedingtubeawareness.org/index.html

How I Meet the Boogie Man: Cohen's Journey With FPIES

As parents we have all done the routine check.... under the bed, in the closet, behind the toy bin... No Boogie Man, we say.  

I have always been able to reassure my little ones that there is no monster lurking in the night.... But that was BEFORE I met the Boogie Man! 

He isn't at all what I would have expected, he isn't 10 feet tall with gnarling teeth and green eyes. In fact he is quite the opposite, invisible and silent and he doesn't fight fair! He doesn't hide in closets or dark spaces, or even in the dead of night.  

We have now entered into a world that two months ago I knew nothing about... and now it consumes my thoughts. Our Boogie Man has a name, it's FPIES~ Food Protein Induced Enterocolitis Syndrome

How do you protect your sweet child from something you can't see? How do you pick up a spoon and put it in your child's mouth, not knowing if it will put him in the hospital? How do you live in fear of crumbs? How do you go anywhere scared that someone will offer your child something without asking you?

Not knowing the answers to these question is not only frustrating but frightening.  

This is Cohen's story...
Our sweet boy has had such a hard beginning. His first 8 months of life have been filled with medications, needles, IV's, x-rays, hospital stays, and doctor appointments. He has an arm list of diagnoses and has had more medications then I care to mention, but he still smiles and laughs at all of those blue gloves that come his way. Our medical team of caregivers consists of a pediatrician, pediatric pulmonologist, and a pediatric gastroenterologist. It is a bit overwhelming to say the least but we are trying to get a grip on our new normal (which for some reason keeps getting redefined for us!)

Cohen spent the winter fighting RSV, Pneumonia and Asthma.  He was in the hospital on oxygen for about 10 days, it is only now that we had finally started to feel like we were winning the battle... And then we meet the Boogie Man!

It was time to start introducing solids, so we did like all parents do, we started with the basics. We decided to begin with oats. We offered several diluted servings and just like most little ones he wasn't so much eating as just learning to eat.  

And then it happened....
I thought I would try to give him some oats before bed to see if he would sleep better. About two hours later he began to vomit, it was one of the most violent vomits that I had ever seen. It only lasted a couple hours and then he seemed to just go limp and fall asleep. I thought he must have caught a nasty virus and prayed that no one else in the house would get it.  That night he seemed to sleep so deeply that it scared me. So I laid beside him all night watching him breath. The next morning he was fine, no sign of illness and we went on with our life. In the back of my mind I began to question the oats, but I would chase the thought away with another, "No one has allergies to oats."  

I decided to avoid food for about a week to let him fully recover. When it was time to eat again I whipped up some oats.  My little one was all smiles that day and obviously feeling well. He finished eating his oats, nursed and then went down for his morning nap. About two hours later my daughter comes in and tells me that Cohen is crying and all wet. I found my sweet boy all covered in vomit and his bed flooded. I picked him up and he continued to empty the entire contents of his stomach until he went limp in my arms (a very familiar sight after the last episode). He continued to gag and choke up green bile, I called his pediatrician because I knew that babies weren't supposed to vomit bile.  I was instructed to immediately take him to the emergency room,  I knew that the biggest concern for them was an obstructed bowel.   

After blood work and x-rays they decided it was necessary to start an IV and give him Zofran. His x-ray revealed an ileus but according to the physician that wouldn't have been unusual for an infant with a virus. I couldn't shake the oats, so I asked if they thought it could have been the culprit but I was told that Cohen didn't present with a rash and it didn't act like a typical allergy. They really felt it was just the nasty bug that they had seen in so many other children that week. 

I wasn't convinced, for one when you have five little ones and only one of them gets a vomit bug (twice in two weeks), well lets just say that doesn't happen!!!  Once again he was perfectly fine the next morning.

At this point my mama instincts had kicked in and I had decided we weren't going to be eating oats anytime soon. So after about two weeks of avoiding everything we moved on to sweet potatoes, but he refused to eat. We tried peas, but he refused to eat. We tried apples and strawberries, but he refused to eat.

Discouraged and frustrated we decided to try the organic apple puffs that we had on hand, thinking maybe he didn't care for the liquid texture. I managed to manipulate a few through his gums and he seemed to not mind them, he actually ate a few.  Two hours later he was playing in his little car and I heard a strange and familiar cough.  Moments later it happened... the same violent vomiting that I had seen twice before. Once again I held him as he and completely emptied his stomach and then began to gag up bile and go limp in my arms. I immediately scanned the ingredient list and confirmed my suspicion, there it was in black ink... OATS!  

This time I turned to the Google search engine, "Why does my child vomit after eating oats?" I found myself on baby center with a list of helpful mothers suggesting Celiac disease but one mother mentioned something I had never heard of....FPIES. I did a quick search on it and found some information but I didn't have time to read through it all, my husband felt that I needed to get Cohen to the ER. On the way there I called a dear friend who is a PA and told her about what was happening, she agreed that we needed to have him seen right away. This time when we got there I told them that I KNEW this was caused by the oats (three times is enough to confirm that) but what I didn't know was WHY?

My friend called me back while we were there, Cohen was already on IV's at this point.  She told me, "I found something you need to ask the doctors about, it sounds exactly like what is happening to Cohen, it's called FPIES!"  I had just read something about that... we both agreed that I needed to share this with our doctors.  No one in the ER had heard of it, after researching it on their own they confirmed that they too felt that this is what our son was experiencing.   When I read what other families went through with acute episodes it was eerie just how well it fit, it was as if someone had been watching us and documenting everything.

We went into see our pediatrician the next day. Knowing just how rare this condition was I brought her journal articles and other information. She had never heard of it either but felt like this was a very strong possibility and she made us an appointment with a Pediatric GI.  We were fortunate (thank God for good friends) we were diagnosed quickly compared to so many others.  Because this is such a rare conditions sometimes families struggle for months and months before finding a physician that properly diagnosis their little ones.

Unfortunately, there isn't a test for FPIES and it doesn't appear on scratch or blood tests because it is not an IgE allergy like peanuts or eggs. It is only after ruling out other possibilities that a child receives a definitive diagnosis. This allergic reaction takes place in my sons small intestines, which is why it takes so long to react after eating the offending food. For that reason there isn't a good way to learn what he is allergic to so we must conduct food challenges. It is frighting to think that everything that goes into my child's mouth may put his life at risk.  Children have to eat, so we have no choice but to experiment with foods, praying that we don't need to hospitalize him two hours later.

This is only the beginning of our journey, as of right now Cohen doesn't have any known safe foods. We are starting food challenges but it takes at least ten days of exposure and no reaction before we can deem a food safe.   I am hopeful that we will find food that will nourish my little bullfrog and that we will learn how to navigate through our "New Normal". Until then we will continue to hold off the Boogie Man as best we can knowing that every battle with him will bring us knowledge and little closer to winning the war. 

Philippians 4:13

I can do all things through Christ[a] who strengthens me.

For more information on FPIES please visit The FPIES Foundation or IAFFPE

Cohen 6 Months Old

Cohen Isaac Bramlee

Well little man it has been a rough start to the new year but things are starting to improve.

You have had quite the 6 months, full of growing and learning new tricks.  We are so happy that you are part of this family.  We love you so much little bullfrog.

You turned 6 moths old on March 14, 2013.  

Things you have learned to do so far:

~Laugh at everyone
~Roll from your back to front and front to back                                                                  

~ Sit up on your own

~Out grow the mow-hawk you were born with...I miss it already

                                         
                   

~Eat oatmeal (but we had to stop because it was giving you tummy problems)

~Jump in your jumpy chair (probably one of your favorite things to do....it also puts you to sleep)!

Add caption

~Your starting to get the hang of cruising around in your GT

 You have have already been diagnosed with Laryngomalacia and Asthma and have been in the hospital twice.  Unfortunately, by this age you have already had a few medications.... Zantac, Steroids, Albuterol, Antibiotics, and two maintenance drugs (Prevacid and Pulmicort).   We have deemed you our "Little Volcano"  because you spit up all the time.....and everywhere! 

From your 6 month check-up (you were finally well enough to get your vaccinations) :

Weight: 17 lbs. 9 oz.   50%          

Height: 26 in.              25%

Head: 18 in.               90%

The first 6 months with you have brought so much joy to our family.  It is exciting to see your little personality starting to emerge.  You are a patient and easy going little boy and you love to sit back and watch all of the commotion in our house.  It isn't very often that you are left to yourself, you are constantly being showered with love and attention.  I look forward to watching you find your place this crazy but wonderfully happy family that God has given us. 

 I love you with all of my heart littlest bullfrog.....  Happy 6 Months!

James 1:17a "Every good and perfect gift is from above, 

coming down from the Father of the heavenly lights"

Hospital Tour #1

Unfortunately, since Cohen's birth our house has been filled with illnesses.  It has been since September since we have not had someone on any type of medication, Asthma is mostly to blame but viruses have also taken their toll.  Everyone but my big bullfrog have been through the trenches of sickness....especially our newbie! 

Cohen became sick sometime after New Years and spent 7 days on breathing treatments.  I thought he had RSV and took him to the doctor.  I was shocked to find out that it was just a random cold, because of how sick he was and how hard it was for him to get over it.  When we went in for his well visit a few days later....he wasn't so well.  He had x-rays and was swabbed for Pertussis.  During this visit our pediatrician called in "our" pulmonologist to have a look at our sweet little guy.  After listening to Cohen the pulmonologist diagnosed him with two separate health concern; the first was Layrngomalasia (loose tissue in his larynx which can cause noisy breathing and other issues).   He informed us that it was important to get his reflux under control because it causes more inflammation in the esophagus making the LM worse. Then he paused and took a deep breath and said the "A" word, which made chills run down my spine.  He is very familiar with our family history (they call us their family of wheezers).   He knew how hard it would be for me to hear that our newest addition didn't get left out of our gene pool.  I didn't want to believe that he could have Asthma too....and so early!!!

A week later Cohen started getting sick again, in fact all three girls were sick as well.  I had four children on breathing treatments every four hours, which makes for very little sleep if any.  It didn't take long for Kayla's Asthma to completely spin out of control and by now the little ones were pretty sick too.  After taking the girls and Cohen back to the doctor we learned that the two littles had indeed come down with RSV. 

Little did I know this was just going to be the beginning of a difficult two weeks.  Since daddy had to be in Charleston for a convention we decided to pack up the sickies and stay in a hotel so that mama wasn't on all night rotating nebulizer duty by herself.  So, I loaded up the gang and began what turned out to be a very long stressful drive.

Not long after we were on the road Kayla started into a very scary Asthma attack.  I had Todd on the phone preparing to meet me at the ER in Charleston.  After two attempts with the inhaler I decided to break out the nebulizer,  which finally gave her some relief.  It is so hard to watch your child struggle, knowing that there is nothing you can do to help them.

We decided that she was out of danger and I proceeded to check into the hotel....me, and five little ones.  Yes, it was quite comical to say the least.  After I had everyone settled in I noticed that my littlest was breathing extremely heavy and realized that for the first time in my life I was watching one of my children experience retracting (when the abdomen pulls away from the ribs in attempt to breath in more air).
I sent a video to Todd (who thought I had just sent him a YouTube video of retracting).  When I assured him that it was his son he sent me straight to the ER (apparently we were destined for that place).

We soon learned that Cohen's RSV had progressed into pneumonia.  My poor baby had to endure 5 grueling iv attempts, one of which ended with blood all over me.  It was so hard to watch my poor sweet little man go through so much.  I had been in that same ER so many times when I was pregnant with him, I never would have imagined that I would wish that suffering back on myself, but I would have gladly traded places with him in an instant!

Spending time with all my bullfrogs and butterflies!
So technology isn't all that bad...lol!

Cohen was admitted into Women & Children's Hospital on Saturday.  His treatment consisted of  iv antibiotics and breathing treatments, as well as oxygen.  He stopped eating entirely for a few days and then could only tolerate a few ounces from a bottle (he only had a bottle once before this), nursing and breathing was still to hard for him.

It didn't take me long to figure out just how severely understaffed the hospital was for the immediate need of caring for all of these sick little ones.  I will save you the agony of hearing a frustrated mother rant, but needless to say it was far from a positive experience...much to my surprise!  Not being able to be treated by our regular physicians only compounded the matter for us because of Cohen's other health issues.  I had a difficult time having my concerns addressed during our stay and despite his dropping oxygen levels the decided to discharge us from the hospital.

Going home... or so we thought!

So on  Tuesday afternoon we headed for home...

Psalms 34:19 Many are the afflictions of the righteous, but the Lord delivers him out of them all.