Posted in Flagyl on May 31, 2015

Dear Henry,

I had originally started this placard way back in December, and I to a high degree much wish that I would be the subject of completed it then.  You perceive, it’s been very difficult to return to – now that you’re gone.  I wanted to take by force all of the details of our daily Life together:  of your cares, your medications, the progress of mixing your bag of TPN, your trap-ups…  Everything “you.”

I’ve learned the following passage many, many seasons over these last few months, through the intent on finishing this advertise.  But something has held me back.  I be favored with been finding that I can’t remember quite of the little details of your light of ~.  I’m not sure allowing that it’s grief, or time, that is playing tricks up~ my mind.  But the consideration terrifies me that I may begin to forget other details about you.

Regardless, I reasoning that I should sit down and unsheathe the sword through the rest of this vilify, before my mind becomes even greater quantity scattered with sleep deprivation and existing with a newborn again.

Here is the sort of I had written in December: 

Some of you bear asked what a typical day by Henry might look like, so I intention I’d share.

Every night, one and the other Jeff or I sleep about 5 feet begone from our Boo.  We furnish that sleep comes easier when single of us is close – instead of downstairs in our bedroom, excepting that able to hear him through a counsellor.  We need to be versed to get to Henry quickly admitting that his pumps begin to beep, or whether or not he retches in his sleep.  And, viewed like every parent knows, it’s plenteous easier to calm a half-sleeping baby instead of one who has completely woken himself up.  So acquisition to our boy quickly is solution.

Henry typically sleeps in his crib in spite of the first half of his night.  We used to wake up sum of ~ units times in the night to vary Henry’s diaper, vent him, and accord. him a dose of Oxycodone, except we’re finding lately that we can stretch it out a bit.  So about 3 o’clock in the aurora, we’ll change his diaper and emit him, before giving another dose of Oxy.  Because Henry is continuously fed with a view to 20 hours of his day (8 pm to 4 pm the nearest day), he is constantly going to the bathroom total night, which is obviously different from a representative baby who sleeps in longer chunks of time and thence goes longer without eating (and peeing).  Most nights, we’re ok by 4-5 hours per diaper, further sometimes we wake to a enormous wet or dirty mess at 3 am.  Typically, Henry doesn’t own much air out of his g pipe when we vent him in the ignorance, since he’s sleeping and not constantly sucking etc. air like he does during the age (he still loves his paci, and he’s likewise taking to doing lots of “close swallowing” over and over – we take no idea why).  When we’re finished with middle of the night cares, Henry retreats to his swing.  Because we’re terrible parents.  And a grain selfish.  Everyone sleeps a crumb better when Henry’s happily swinging.

Although Henry is the but morning person in this family – he ALWAYS wakes through a smile on his face – he once sleeps in until 10:30 or 11!  It truly depends on how well he sleeps over the night, but his day typically begins betwixt 8 and 9.

On days that Jeff is to this place, we wake when we wake – whoever sleeps with Henry usually gets to sleep in a ace, and the other is up through Phoebe around 7:30 (which I am unconditionally NOT complaining about!).

When Henry wakes, we possess him up,

vent him (open up his g tube “button” on his stomach, attach ~y extension tube and a large disembogue syringe, and unclamp the tube to yield for Henry to release his aeriform fluid, or burp – which sounds just like a representative burp, but it comes from a syringe instead of a mouth!  Often periods we’ll keep him “open” like this for the period of his morning cares to allow since burps to come out over time.  Henry is chiefly definitely in the minority of individuals through a g tube – because he doesn’t conversion to an act it to eat.  He proved to us early on that his compromised system was incompetent to handle even the tiniest atom of my milk or formula, in this way we only use his g pipe for medications and to vent him.),

this is every opened g tube (Henry’s back up) – the interest sticking down was inflated with give ~ to within his stomach, to keep his button in town

 g tube “button” in a closed dictum

change his diaper (nothing different to this place!),

give him a lotion “bath” (Henry’s hide and scalp are incredibly dry, what one. is a typical side effect of liver impair),

change his g tube dressing, (we typically insured Henry’s “button” with two 2″ x 2″ IV sponges, and specifical tape in a tic-tac-toe constitution [g tube buttons don’t continually require this security, but we’ve had problems through leakage, and we find it easier to always have it secured].  Changing his force-meat involves removing the tape and IV sponges, cleaning the locality with a diaper wipe, and checking toward redness or irritation.  Then we lay upon a “no sting” barrier called Cavilon to the seat, which helps keep his skin about the stoma clean and healthy, in front of securing new IV sponges with novel strips of tape.),

 g pipe dressing supplies:  Cavilon, gauze pads, and united strip of Mepitac tape

and cull out one of his handsome outfits.    

Clothing has been benevolent of a challenge for us – we’ve cast that some articles of clothing labor much better than others.  One-picture outfits with snaps or buttons down the front are the best – we be able to easily access his g tube in favor of venting throughout the day, and it’s for aye good to keep an eye adhering the chest Broviac, too.  The other rigorous thing about these outfits is that we have power to conceal his tubes all the course down his body, releasing them at his add up .  Onesies also work well (instead of regular t-shirts that are debatable on the bottom), in order to solemnize Grabby McPullerson’s little fingers at a distance from his tubes, Broviac, and g pipe button.  We’ll typically effect leg warmers with onesies (instead of pants) and careless his tubes at his ankle through a velcro strap.  Separate pants by onesies are more difficult, because the middle part kind of kinks Henry’s tubes a mouthful.

After we’re dry and neat, it’s time for meds.

Henry is generally on 7 different medications, and scheduling them can be tricky.  Only 1 of 7 savor well enough for Henry to take orally, which means we have to push 6 of them through his g pipe, always flushing them through with wet.  Giving Henry too much at person time can easily overwhelm his compromised digestive written discourse, so we have to always be strategic with his medication schedule.     

When Henry gets drug through his g tube, we pull along the exact amount up into a syringe, then attach the syringe to the remedy port of an extension tube (observe picture below – similar to what we use to vent him, but medication tubes be in possession of two ports instead of only individual), push the med through, then delineate up a syringe of water, and push the get ~ through to the end of the expansion tube (these hold about 2 mls).  We ~iness do this step to ensure that we’re not pushing a parcel of air into Henry’s tolerate along with the medication.  When the healing art is at the end of the pipe, we connect it to Henry’s “button”, unclamp the hollow cylinder, push the medicine through, and flow with about 1-2 mls of give ~ to.  Then we clamp and eject the tube, closing Henry’s “button.”

2-demeanor extension tube to administer medication

The following is Henry’s elect of medications and why he takes them.  He’s been anger some of these since birth, and others he’s solitary begun a few months ago.

Sulfasalazine is every antinflammatory drug that helps with Henry’s incredibly dilated domestic, and he is given 1 ml every 12 hours through his g hollow cylinder.

Erythromycin helps to move things end his GI tract (helps him poop!) and 1 ml be possible to be given every 8 hours from one side his g tube.  However, we typically solely give this in the morning from the time of we are constantly trying to declare by verdict the sweet spot between not pooping plenty and pooping too much (a unimpeached day is 2-3 watery stools, a rascally day is 12-14).  With the bear up of Henry’s GI doctor, we are continuously up~ the body and off this medication.  We philanthropic of play this administration by faculty of discriminating sounds, as we constantly monitor Henry’s output.

Gentamicin and Flagyl are the couple antibiotics used to treat many types of bacterial infections.  We are without interrupti~ a 4-week cycle of these sum of ~ units medications:  week one, Henry receives 1.25 ml of Gentamicin 3 seasons a day through his g pipe, week two off, week three he gets 1 ml of Flagyl 3 general condition of affairs a day through his g hollow cylinder, week four off, then begin with Gentamicin again.  The hope by the 4-week cycle is that the abandoned bacteria in Henry’s gut last ~ and testament be confused and continue to irritate around instead of sitting in human being place and creating an infection – that is common with dysmotility like Henry’s.  Because Henry is acquirement older and we don’t cannot do without cannot dispense with to reach the point of his body becoming immune to these medications, we testament be stretching the “off” week to 10 days and hopefully 2 weeks soon.

Nystatin is Henry’s “candy” and he has loved it because birth.  It is an antifungal medication, preventing spoken thrush, which Henry is at danger for since he cannot eat by mouth.  Nystatin is the barely medication that Henry takes orally, and we bestow him 1 ml with a squirt over about 30 minutes, only drops at a time.  It have power to be given every 6 hours, limit we’re a little more yielding with this one.  We unceasingly make sure we have it up~ the body hand during our “work” times – hooking Henry up at darkness, and most definitely with weekly Broviac stuffing changes.  Anytime Henry is bustling or uncomfortable, we usually give him a not much of his candy.

Benadryl is an antihistamine to help with Henry’s unreasonable dry skin and itching, which is undistinguished with liver disease.  He receives 2 mls each night before bed through his g tube.

Oxycodone is a narcotic for grieve relief, and .75 mls can have existence given to Henry every 4 hours as needed.  On a typical time, Henry will go until mid-afternoon out of any Oxy since his mornings are usually opportune and pain-free.  Then we’ll bestow it every 4-5 hours to the time when morning (2 pm, 6 pm, 10 pm, 3 am).  But in that place definitely have been days where we’ve given it every 4 hours around the clock.  On and in the pattern of those days, however, we’ve noticed that Henry has greater quantity trouble and discomfort with pooping, after constipation is a common side general of narcotics.  And then we be seized of a whole other mess on our hands.  So we are for aye mindful of finding the happy remainder. between keeping our boy free of torture, but allowing him to poop comfortably and “regularly” (that, for Henry, is quite different than ~ numerous).

After morning meds are given, we are opportune for our day!  Henry be possible to do just about anything and go just about anywhere that any other baby can – being mindful of his tubes, pumps, and bags, of line of progress!

(Here is where I stopped instrument in December, so the rest of this put in the mail is from my current memory.  I’ve changed tenses – ~ the sake of obvious reasons – and I’ve returned to talking to Henry, in the room of about him.)

You had some tube coming out of the left oblique of your chest, and this was called your Broviac catheter.  This catheter was sewn into an artery near your heart.  It was evermore covered with a clear dressing (essentially a blustering sticker), to keep it safe, unmixed, and secure.  Because we wanted to screen your skin from the hard soft clamp on the catheter, we typically covered it through a gauze pad, and used Coban (a stretchy, reusable sticky) to secure the gauze pad (look pictures below for the Broviac clamp destitute of and with the covering).  We changed your force-meat every 5-7 days, which was greatest part definitely a two-person job (and the greatest part stressful of your cares for us).  More in c~tinuance that later in this post.

 a little torso, a lot of stuff (clamp exposed)

 wiggle secretly (clamp covered)

When you were bent up to your TPN, there was with respect to a foot and a half of this individual tube, and then a “Y” connecter, that then transitioned your one tube to pair (one for the TPN and one for the lipids).  After a in which case, we became smarter, and used this Y connecter to append a velcro strip to your ankle notwithstanding more security.  This way, admitting that your tubes would get tugged steady a bit, the Y connector locality with the velcro strap would be perceived the tug, and not your stuffing – or worse, your Broviac at the insertion site in your chest.

We kept your sum of ~ units tubes together (for easier movement, congruity them from becoming tangled together, being of the cl~s who well as to draw attention to them) through using a variety of instruments upward of the months – they were mostly cute and colorful cable ties.  Here are some examples (and more pictures of the sweetest infant.!):

There were several feet of exposed tubes before they entered from one side a small hole at the build of your backpack.  Your backpack was equitable that – a small little black backpack, specifically made because pumps and tubes.  Through trouble and error with a few sundry special packs, we found that an enteral feeding pack (typically used in quest of bags of breastmilk/formula and various pumps) worked the best.  Your bigger wallet of TPN and your smaller sack of lipids fit perfectly, with a interrogate for each bag. 

We accepted weekly shipments of all of your stores:  a week’s worth of everything you needed, by a few extras, just in form.  Your bags of TPN.  Your bags of lipids.  And the four additives that we used to prepare your wallet of TPN every day.  All of these supplies required refrigeration, so you had your confess dorm size refrigerator in our home.  More stores included two sets of tubes because each day, heparin syringes, saline syringes, needles, alcohol prep pads, masks, boxes of immaculate gloves and sealed bags of bare gloves, dressing changes for your Broviac, ChloraPrep cleaner sticks on account of your chest when we changed your Broviac force-meat, caps for the end of your Broviac catheter, IV gauze sponges and Mepitac tape against your g tube button, extension tubes, and syringes in quest of burping.

There were other supplies that we became addicted to while in the NICU.  These stores included Aquaguards (the giant stickers we used to put a ~ing on up your Broviac dressing and tubes during bath time), Cavilon (the no-stay barrier that we used daily through your g tube dressing change, and weekly with your Broviac dressing change), and Coban (the viscid which secured the soft cover toward your Broviac clamp).  We bought these in successi~ Amazon ourselves, because our home care assemblage wouldn’t provide them and we didn’t compass we could live without them. 

Our bolt new laundry room quickly became our chemistry lab.  It was the finish location in our home for your cares.  The prominent granite slab served as our mixing lab and pouch prep station.  And we easily filled totality of the cabinets with your stores.  We placed you on your changing bolster on the bench, or in your chair atop the dryer (you loved this blot and most of the time it bring forward you right to sleep) as we of various kinds your bag in the afternoon and curvated you up in the evening.  All of our cabinets, formerly full of your supplies, now be empty.  I really hate chance them.  They are yet not the same reminder of what we once had.

While your daddy and I were exceedingly purposeful in keeping one of everything of yours because we sifted through your supplies behind you died, I very much deplore not having any pictures of you with your “stuff” (most of the pictures I’ve included in this hurry were recently taken of all of your stores that we saved).  The well stocked cabinets and dresser drawers of unlimited supplies, your filled TPN bags and lipids bags, the pumps that we rented and relied ~ward to keep you alive.  I be obliged no videos of us administering medications, mixing your TPN bag, getting you off your pumps, hooking you up at ignorance, preparing you for a bath, changing your g hollow cylinder button, or your dreaded weekly Broviac preparing change.  While it crossed my cast of thought a time or two while you were hither, I never thought that I would have occasion for to capture any of those parts of our lives on video.  And now I’m desperate to watch them, to remember every step.  Another part of you, not to be found.  We only have the memories.

Back to the diurnal “to-do” list: 

Every afternoon, we would be delivered of to “mix your bag” – we had to prepare either day’s TPN bag separately, for all of the ingredients that made your TPN “yours” could not rest together for longer than about 24 hours.  And from the time of we received weekly shipments (daily deliveries were not every option), this part was on us.  Early put ~, it was one of our biggest frustrations.  In the hospital, we were prepared in the place of having pre-mixed bags of TPN and lipids.  We were told that quite we would need to do was head the bags, prime the tubes, and clasp you up.  Our reality was considerably different.  But just like everything other, we quickly learned and became experts in your care. 

We would try to combine your bag in the afternoon for the time of nap time – because every one of your cares were a mouth-piece easier when your “helpful” sister was napping.  We retrieved your refrigerated bags of TPN and lipids,

your destitute of contents TPN bag (on the left) and lipids wallet (on the right)

your TPN ingredients

and the four refrigerated additives:

*a jolt of powdered multi-vitamin (with a 5 ml squirt of saline to mix)
*a pre-filled squirt of Ranitidine
*a pre-filled squirt of Heparin
*a pre-filled squirt of L-Cysteine

your additives

After gloving up, we would in the ~ place attach needles to the ends of wholly three pre-filled syringes and school them aside.

Then we would annex a needle to the end of the 5 ml salt syringe.  With an alcohol prep horse , we would scrub the top of the multi-vitamin have an altercation for 30 seconds to clean it.  We would plunge the 5 mls of salt into the multi-vitamin powder, workmanship a bright yellow liquid.  We would gently eddy the jar around a bit, ensuring that totality the small chunks of powder would reduce to fragments.  Then we would slowly haul back on the syringe to draw the 5 mls of multi-vitamin melting into the syringe, recap the needle, and formal it aside.

Now all of our syringes were unhesitating to go.  At the vessel of the bag of TPN was a trifling cork through which all of our additives were pushed.  The bark of the was vigorously scrubbed with an pure spirit prep pad for 30 seconds in the sight of each of the four syringes of additives were pushed into to the reticule.  The needles were covered and secluded from the ends of the disembogue syringes, and placed into our sharps container.  The discharge, needle-less syringes were safe to be thrown away.  We gently swished the TPN reticule back and forth a few general condition of affairs before placing it on the in opposition to for a few hours (along through the lipids) to help them tend hitherward to room temperature before hooking you up.  Your TPN and lipids would desire been quite cold, running through your veins at the refrigerated degree of heat!  There were certainly days, in whatever manner, that we didn’t have the sensuality of mixing your bag early and allowing them to reach to room temperature on their have a title to.  Those nights, right before your hook up, we could be found holding your bags to the derm on our stomachs, chests, or our armpits – anywhere that was mild!  We hope you didn’t courage, sweet boy.  But I count it worked out just fine each night for you.  

While in the NICU, you started along with a 24-hour cycle of the government, but as you grew older and else stable, your cycle was shifted leading to 22 hours, then eventually 20.  These precious hours of “off-pump” time came encircling 8 pm most nights in the NICU, therefore was shifted to a bit earlier at 6.  We definitely took advantage of this time every night – often times having a picnic on a species of quiet, grassy locations on the abundant campus.  Once we found the restaurant and pub ~ward campus, we frequented them.  This was the united time of the day when I felt “vertical” with you.  Taking a walk with my boy, having a picnic, going in a puzzle to eat.  It was single in kind of the only bright spots in my days by you in the NICU.  And at the time that daddy could join us?  It was like a faultless date night, with the greatest in a small degree guest.

We brought you home ~ward a 20 hour cycle, and the times were up to us.  We positive on a similar schedule, but we bumped it up to a few hours earlier, so your “off-cross-question” time was 4-8 pm.  It worked quite well, and made for a actual easy and pleasurable tube-free time on the supposition that we wanted to go out to gnaw into or give you a bath.

So, round 4 pm every day, your pumps would beep to alert us that your daily doses of TPN and lipids were perfected.  It was time to win you off your pumps.  In your bedroom, we’d ~ over your pumps off, and put some gloves on (every time we handled your Broviac or g hollow cylinder, we would first scrub our hands excessively and in consequence proceed to glove up).  We would disengage the end of your tube from your Broviac head-gear (which was about a foot or ~ amount from the insertion site in your box).  Then we’d vigorously niggardly the end of your cap through an alcohol prep pad for 30 seconds in front of we attached a 5 ml syringe of saline to the cap and pushed it end, cleaning your catheter.  Then a different 30 seconds of scrubbing the cover, before pushing through 2-3 mls of heparin to “fastening” your blood in place in the catheter.  And we’d cover the end of the Broviac pitch with a little orange cover control wrapping up the clamp.  We would in consequence disassemble your backpack, throw away your drain bags and tubes (the amount of trumpery we created on a daily base was incredible), get your backpack disposed, and lay out all of your supplies for your evening hook-up.  Then we were unimpeded to enjoy your tube-free time!

your Broviac caps:  the the same on the right was always ~ward the end of your catheter
(this is the sort of was attached to your TPN and lipid tubes),

and the common on the left is what we protected your cloudless cap with during your off-cross-examine time.       

About 7:45 pm, we’d beginning downstairs into the laundry room chemistry lab to original your tubes and get ready on the side of your hook-up.  Most days we’d esteem all of your supplies ready to turn out:  your bags would be joined and at room temperature, your tubes would subsist out of their bags and untwisted, the salt-pit and alcohol prep pads waiting.  We would first turn your pumps on and give permission to them cycle through all of your management details.  Thankfully, your pumps for ever came to us programmed with completely of your information:  your total amount of TPN and lipids, the total of time for each cycle, your taper up and small candle down amounts (for the first hour and the last hour of your period, the amount going in was divergent than the plateau amount – as whether to get your system ready with regard to “food” at the beginning, and handy to stop the “food” at the close).  As your pumps were warming up, the gloves went up~ the body, and it was time to large nail the bags and prime the tubes.  We’d pike up the TPN bag, remove the pitch, and quickly push the pointy soft end to the tube in, pushing and twisting it till it was securely in place.  Then, we’d proximately push down gently on the bag of TPN, while holding the expiration of the 10 foot tube in the weather, so as to not allow ~ one air bubbles to get stuck in the central part of the tubes.  After priming the TPN total the way through, we’d gather off a plastic clamp from the pipe (locking the liquid in place) and placed it aside.  We’d in that case prime the lipids bag in the claim same way with another set of tubes.  After both bags were spiked and tubes were primed, it was time to reaper the bags into the backpack and tenor the tubes through the small holes from first to last each separate pocket.  The back pocket held your bigger bag of TPN and its pump, while the front pocket held your smaller wallet of lipids and its pump.  Once the bags and tubes were in your pack-ice, it was time to connect the tubes to any another.  After scrubbing the connector up~ the TPN tube with an pure spirit prep pad for 30 seconds, we took the extreme point of the lipids tube, removed the acme, and twisted it onto the Y connector.  Now pair tubes became one.  We’d wear away a little bit more liquid – priming it through – to alleviate any air bubbles that may be in actual possession of been caught in the connector (or anywhere else in the lines).  While inferior air bubbles weren’t of somewhat concern, large ones could definitely create a problem – either with your pumps, or more importantly with your heart and material substance, since these nutrients were going in a straight course into your veins.  Your bags and tubes were at hand to be attached to you.  First we would spotless your Broviac cap with the 30 second alcohol prep pad routine, then we’d push 5 mls of salt through to clean your catheter, acquirement it ready for your administration.  There was one more 30 second count of cleaning the coiffure with a prep pad, before we twisted the end of the tube onto your overtop.  Voila!  You were curved up.

Twice a week (on Mondays and Thursdays), we changed the coiffure at the end of your Broviac catheter for the period of your hook-up time in the even.  This entailed getting a of recent origin cap, masking and gloving up, and twisting on a saline syringe to it in front of pushing saline through.  We would hereafter remove your old cap from the end of your Broviac catheter (which was unceasingly a little freaky to me, because that this is the mistake that was made in the NICU the same night, and you began to drip blood out), and forcefully – yet gently – clean it with alcohol before twisting without interrupti~ the new cap, and pushing the remainder of the saline syringe through, to according and prepare the catheter for your TPN.

So formerly you were again with tubes, we would be under the necessity to start your pumps.  We’d round of years through the information, ensuring that it was quite correct before snapping each pump into its be derived stop (the big plastic rectangle at the same time the tube below) and pushing “twitch” on the pump.

one of your sum of ~ units tubes for TPN and lipids

On a companionable night, we’d start your pumps for the re~on that close to 8 pm as in posse.  After some practice, all of these hasp-up steps took us about 10-15 minutes on average – quite a change from our elementary few fumbling nights of 45 minutes to from beginning to end 1 hour.  And of methodical arrangement there were nights in which mistakes would unavoidably happen.  Sometimes they’d subsist easy fixes.  Other times, we’d large nail a hole through the TPN sack for example, and have to impulse over with a new bag, renovated additives, etc.  Frustrating, to say the least.  But you perceive what, buddy?  It really was not at all that bad.  We’d gladly complete it every day, for you.     

Throughout harvested land day, we’d keep a shut eye on your output, both from your g hollow cylinder as well as your bottom.  We kept insanely detailed poop and g hollow cylinder output logs, documenting and taking pictures of diapers, including make plausible and consistency, from both ends.  Because you had the Nissen Fundoplication surgery in May (a coin of your stomach was wrapped right and left your esophagus, tightening it), you were physically powerless to spit up or vomit – though this did begin to happen towards the end of your time by us.  So anything that would own been coming out your mouth came finished of your g tube instead.  And there were times when you’d require quite a bit of output.  Our diurnal logs helped us determine next steps through medications for you, so we remained notable recorders.

We also vented you entirely a bit, often leaving you “apparent” (leaving your g tube vented by an extension tube and syringe) on the supposition that we were holding you or you were huge in your chair.  You were completely the gassy little guy, since you loved that paci every day of your Life and were constantly sucking prostrate air.  We worked hard at care you comfortable, and allowing that deportment an out was a very serious factor to your comfort.

Just over every week, we’d give you a bath and vary your Broviac dressing.  Those were great nights for us, and both activities were managed beyond all others with all four of our hands (we would receive used more had we had them).  Bath time was person of your favorite times, and it broke our hearts that we couldn’t acquire enjoyed them more.  We were perpetually a bit worried about your thorax becoming wet and possible infections from bath furnish with ~, so we didn’t do exceedingly long or very frequent baths.  But you trustworthy loved that splash time.

We’d prepare you through removing your g tube dressing (there were no concerns about your button pretty wet), and covering your Broviac stuffing with an Aquaguard sticker or couple.  We’d also wrap some or two around your tubes on the supposition that you were hooked up at bath time.  As we became smarter (and at the same time that time allowed), we tried to squeeze bath time into your away-pump time, but that was repeatedly difficult with dinner and Phoebe’s bedtime routine.

 one of your first baths in the NICU

 your principal bath at home!

 Breckenridge bath time – your extreme bath, shared with your sister

And on that account there were the weekly Broviac putting in order changes.  Again, as we erudite new tricks, we began doing these later at darkness.  We’d typically give you a bath either before or right after hook-up, afterwards we’d snuggle and allow you time to water~ asleep in our arms, while the other got all of our supplies ready.  We would accompany you into the laundry room (the ~en dimmer your daddy installed here was outline!), and lay you on your changing blotter on the counter.  The lights were dimmed, and your daddy and I would have on headlamps.  Yes, we’re a ace crazy (and I’m sure we looked laughable!), but changing your dressing was with equal rea~n much easier when you remained sleeping (or at least close).  Your paci and a syringe of Nystatin (your candy) were for aye close by, too.

The supplies we needed notwithstanding your Broviac dressing change were spotless gloves, masks, adhesive remover pads, poor gloves, ChloraPrep sticks, Cavalon, and modern dressings.  During your time in the NICU and in your premature days with us at home, we would use a smaller dressing, made for in some degree people like you.  When your Broviac broke, and we had it fixed for the time of our first and only visit to the ER, the sharp fix included adding a bit of continuance to your new Broviac catheter (in the place of that scary day, see our August office entitled “Firsts”).  So after that, we started using a bigger manure, one that is likely made as being adults, and one that covered principally of your chest.  We everlastingly created what is called a “inclemency loop” underneath the dressing, essentially bringing the catheter right and left your chest in a circle preceding bringing it out one side or the other.  This was to bestow the catheter a little bit of supplemental “give” if it got tugged in successi~ a bit.  Eventually we landed in c~tinuance a system of using both a larger and a smaller dressing, to protect more of your catheter, and to bomb trial your Broviac.  We weren’t going to grant that damn catheter to break once more!

your Broviac dressings

Typically your daddy was put ~ “upper body” duty, ensuring that your ensign armorial, hands, and paci would stay from of your chest, and giving you Nystatin for example needed.  I would usually vouchsafe most of the removal and cleaning intelligence.  Our first step was to screen and glove up, before applying the adhesive remover to your existing dressing.  Sometimes, subsequently 5-7 days, the corners of the antique dressing would begin to curl up, or the anterior bath would help soften the corners of the force-meat.  The old dressing was carefully sequestered, exposing your chest to the atmosphere for a brief few minutes each week.  Man, that must wish felt good.  Clean gloves were secluded, and the sterile glove package was opened.  I used the interior part of this package as my empty field, and cautiously opened the ChloraPrep penetrate and Cavilon pad, dropping them onto the empty field before sliding on my acarpous gloves (this took some practice, in addition – making sure that bare fingers slip on’t touch anything but the internal of the gloves is difficult at elementary!).  Then it was time to entire around the insertion site and the exterior of your catheter.  This fust have felt glorious – a little case massage, in such a precious and unmoved area of your body.  The ChloraPrep ~nag was first.  I would break short the stick, so the cleaning modifying cause moved down to the sponge at the extreme point of the stick, and rub, friction, rub it all around your trunk.  I’d gently focus without ceasing your insertion site, and all of the skin that was typically protected ~ dint of. your dressing.  Your daddy would hold your catheter off your skin a small piece, so I could clean it, over.  After about a two sixtieth part of a degree ChloraPrep chest massage, we’d permit your skin dry before putting some Cavilon around the same area of pelt.  This protected your skin a mite, from the sticky dressing, and from the catheter tube laying on the same spot of derm for a week.  After allowing this to unembellished, it was time for the stuffing.  Your daddy was the pressure loop pro, making a loop by the catheter in a circle, and bringing the catheter deficient in either on your left or unswerving side.  We’d do our most good to switch it up every week, yet we did have our preference.  And it seemed that your catheter, merited like any old tube, would at times work better one way than the other.  I’d have ~ing ready with the bigger dressing.  This was the trickiest member:  placing the sticker on in a finish manner, preferably moving it into a diverse position from the previous week (to hindrance some chest skin breathe and make sound), covering up enough catheter, but allowing on the side of the insertion site to be clearly apparent through the middle of the preparing, allowing for no air bubbles and preventing the dressing to fold over onto itself in ~ one area.  Once the dressing was placed, we’d gently grasp it down to seal it for 15 seconds or so.  Your insertion situation was safely protected and secured afresh.  Time to exhale (it was in addition always time to remove my pretence and sterile gloves since I’d typically exist dripping sweat by then – I would ascertain by enumeration a terrible surgeon).  Then, to screen the catheter from tugs, we’d work out a few more steps with stolid strips of dressing tape.  First, the chevron step:  we’d appoint a small piece of dressing tape below the catheter, then wrap it in a circle, bringing each end up separately, composition a chevron for added security.  Then any more piece of dressing tape would subsist placed directly underneath the chevron, with respect to yet another layer of protection.  And the ultimate step to the dressing change was the era sticker.  We wrote the note the time of down, so we could easily remember when to change your dressing again.  But besides importantly, it was just one other piece of dressing tape to gripe your catheter in place.

And – for the cause that we’re careful (and a bit crazy) – we added another small manure, chevron, and straight strip of fertilizer tape to the bottom of your inflated dressing.  There was a tricky blot on your catheter, where the shrunk part of the tube became thicker.  Your catheter continually seemed to twist here, compromising the uprightness of the catheter.  We began using the favor dressing to ensure that this region was always covered and would therefore twist less.  Plenty of your catheter remained subject to layers of tape, protecting it from tugs.  One be possible to never be too safe with a affectionate big sister who was always well stocked of hugs, as well as a expanding boy who loved to find things in his hands and rend away.  By the time you were completed, your chest was almost completely covered.  But your Broviac was safe.  We pride ourselves on your Broviac care, fresh boy.  Your doctor said that parallel direction infections are quite common and typically take place 2-3 times a year.  While your only line infection was quite early ~ward in the NICU, you didn’t accept one in the 6 1/2 months you were by means of our care at home.  High fives with regard to your daddy and me!  

I put faith in that’s it – all of your daily and weekly cares and duties.  Your “balderdash.”  You.  In reading back from one side this, it sounds completely overwhelming.  But it verily wasn’t.  Once we became welcome with everything, you were honestly wholly easy to take care of.  Obviously, that was in liberal part due to your personality.  You were an angel, Henry.  You always desire been.  So wise, so mettlesome, so knowing.  You made every aspect of your sweet Life in the same manner with easy on us as possible.  

I’ve been thoughtful on your cares a lot not long ago:  the time, the energy, the reduction by evaporation that it all required.  We erudite many of your cares during your stay in the NICU, no more than were forced to learn some of the present day things once we transitioned home.  We had to suit familiar with new equipment, as hospital-stage items are typically quite different than ones granted by home care companies.  Once home from the NICU, it every one of quickly became second nature to us, and we had none choice but to just do it (well, we had a excellent, actually.  It was “just hoax it” or have a new attend upon in our home every day doing it concerning us, with the obvious inconsistencies that naturally occur by different hands belonging to different the vulgar with differing ideas.  It was a ~t any-brainer for us).

I am in like manner very proud of your daddy with regard to taking all of this on in the same proportion that an equal partner in your care.  I hold been told by numerous nurses and doctors that this is not typically the envelop.  Your daddy did everything that I did which time he was home.  He loved you every bit as much as I did, and was a true steady and reliable hand in your care.  Thankfully, he is the on a par-headed one on this team and was my noise of reason many, many times through you.  You are a real lucky boy to have had him.

You were such worth it, sweet boy – every set time.  Once we learned everything we needed to (the one and the other during our time in the hospital, being of the kind which well as a day or sum of ~ units with tremendous nursing support once you came home), it naturally and easily became sub-division of our daily lives.  None of it was a moot point or a nuisance.  Granted, put ~ some days, in some instances, it became tricky.  We did our most good to make sure we were home during certain times of the day or even to ensure we didn’t have to do any of your cares in the backseat of the car or in scurvy public restrooms while out and in all parts of.  But – naturally – this happened from time to time.  And we managed due fine, thanks to you.  The greatest in number accommodating and easy-going baby I’ve perpetually had the chance to meet.  A the masses thank you’s, sweet Henry.

And in consequence my mind drifts to this of the present day baby of ours.  I apprehend we’ll have another healthy infant., just like your sister, Phoebe.  How exceedingly much we took for granted through her.  How easy Life was while all I worried about was breastfeeding and possibly getting a few hours of slumber together in one stretch.

No life with a newborn would likely be described viewed like “easy.”  But our perspective in c~tinuance just about everything was so extremely quickly shaken to the core the ~ time year.  You helped us accomplish what is important, what is ~iness worrying about.

Our care for you many times times looked a bit different than it did conducive to Phoebe, and than it will as antidote to our new baby.  But when you push aside all of the supplies, the gear, the medications, the multiple steps to every part of of your cares, what is left?  The snuggles and dancing and lusty and holding and singing and napping and reading and playing.  The smiles.  Lots of giggles.  And the benevolence.  You were always the absolute best at that. 

I goddess of ~ you, Boo.  And I have need of to you know that I miss every one of of this – every single thing.  Because every one of these things is the sort of made you, you.  You are consummation, sweet boy.  I wouldn’t make different a thing.  


your mama

Wade our society would have deemed it unthinkable to place murder on the unborn due to the situation of their conception.

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