Lactation, circumcision, and discharge - oh my!

I apologize for today's title, my attempts at humor are somewhat hampered by sheer exhaustion.  The last 48 hours have been action-packed to say the least.  On Monday Josh and I were cleared to start breastfeeding which was wonderful news.  Josh has been bottle feeding from the beginning so the switch to nursing has been a little tough for him.  He's a champ, though, and trying hard at it.  Until he is up to speed, I have to nurse first, supplement with a bottle of my milk, and then pump so he has more milk for the next round of feeding.  This whole feeding process takes about an hour and a half and sometimes longer... and it occurs every three hours.  You can do the math - I spend over 12 hours a day making sure the little guy is getting enough milk, hence the sheer exhaustion.  Between feeding and all the other baby care, it leaves little time for sleeping, eating, and bathing myself.  I was completely unprepared for how physically, mentally, and emotionally spent I would feel throughout this process and I still have nurses to help out.  How do moms with multiple kids handle all of this and keep their sanity?  Inquiring minds want to know!

In fabulous news, Joshua is being prepared for discharge on Thursday or Friday!  He had his PICC line removed yesterday so the only thing he is connected to now are the leads for monitoring his heart and respiration rates.  Last night when I was giving him a bath was the first time I was able to carry him around the room completely untethered - it was amazing!  I could just pick him up and walk around wherever I wanted to.  It brought me to tears.  In preparation for discharge, I met with a lactation consultant this morning, attended infant CPR class, and consented for Josh to be circumcised (conveniently while I was in CPR class so I didn't have to witness it).  The poor little fellow is now resting as comfortably as possible after the procedure.  I am sure he is even more ready than his parents to get out of here after today's drama.  As long as he gains a little weight by tomorrow, he will be discharged Thursday afternoon.  Otherwise, it will be Friday.  And then our long-awaited journey at home begins...

In honor of Joshua's 4 week birthday yesterday, here is the first photo taken of him.  Josh has come so incredibly far in 4 weeks time, I am so proud of him!

Reflux be gone!

Josh has been keeping me on my sleep deprived  toes this week because of a bout with acid reflux that has turned him into a fussy monster at night.  Starting Tuesday night my sweet, laid back baby transformed into a screaming banshee from 1 am to 7 am.  I had no idea what was going on with him, but tried to convince nurses and anyone who would listen that this was not his usual personality.  I finally found out on Thursday afternoon that he had been taken off the Zantac he had been receiving and apparently has acid reflux.  Why he was taken off the Zantac I have yet to understand since reflux is a very common issue with gastroschisis babies.  The nurses and doctors tell me it is highly unusual for a gastroschisis baby to not have acid reflux.  All information that would have been good to know days ago!  Last night was the first night Josh slept at all between 1 and 7, but unfortunately we had a nurse that obviously doesn't care about parents getting sleep.  If I wasn't pumping or feeding Joshua, I was being wakened by the nurse to get vitals without regard to clustering care with Josh's feeding schedule.  Oh, I can't wait to get out of this hospital!  Now don't get me wrong, most all of the nurses are excellent, incredibly caring individuals.  Living in this interruption prone, alarm ridden environment wears you down, though. 

In good news, Josh is up to 50 cc's of milk and at this rate will be up to full feeds (2 oz.) on Tuesday which is a major step towards going home.  Hallelujah!  From my understanding, he needs to be at full feeds with no issues for several days before the doc will approve his discharge.  Could we possibly go home by Saturday?!  I can hardly let myself consider this prospect because I don't want to be crushed if it doesn't happen.  For now we wait and fervently hope we are watching Josh's first UGA game as a family at home on Saturday (GO DAWGS)!  What an awesome tailgating experience that would be!!  

The screaming banshee face (he was actually just yawning in this picture but this is what the fussy monster looks like)

Got milk?

I can't believe it has been almost a week since I posted the last update, Joshua has made significant progress in the last 6 days!  He had his stomach tube removed last Thursday and after doing well with that, the doctor approved him for feeds on Friday - we were very excited, but also nervous based on how the last attempt went.  Josh started drinking 5 cc's of milk every 3 hours starting at noon on Friday.  He seemed to catch on pretty quick and sucks it down unless he is sleeping (then he requires a little more prodding).  On Saturday, his ration was increased to 10 cc's and even more exciting, he started pooping on his own!  Previously he required a little help from glycerin suppositories, but he is now having "unassisted poops".  We are very enthusiastic about poop around these parts!  Joshua had plenty of visitors on Saturday to witness his milk drinking skills.  And Papa and Gigi came to relieve me on Sunday so I could go home for a few hours to get my car and more clothes, take a shower and a nap, and make sure my cats still know who I am.  The time at home was reinvigorating, but also tough because I wanted to be back here with Josh.  I also had a difficult time being in his room because all I could think about was bringing him home to sleep in his crib and try out his new swing (thank you Aunt Anne & Uncle Wes!).  We will get there and it will be SO sweet!  After being increased to 15 cc's of milk yesterday, this morning he was approved for 20 cc's.  Josh is enjoying adding more and more milk to his daily rations.  Before he was eating, Josh rarely fussed or got upset unless the nurses were poking at him.  Since he started eating, he has gotten a lot fussier because he now knows what he was missing out on and gets hungry before the three hours is up.  I welcome the fussiness (to some extent) because that is what a normal baby does.  Now if I could just convince Joshua to fuss during the day and let me sleep from midnight to 3 am, we would be in business!

Yawning - a frequent activity for Joshua

Oma enjoying time with her new grandson

Proud Daddy feeding the little guy

Keeping perspective

Things seemed to be looking up for Mr. Joshua yesterday morning.  He slept well during the night, managed to sleep right through a heel prick to test his hemoglobin levels, and - most importantly - had multiple significant poopy diapers (this is especially important for gastroschisis babies since it signals that things are making their way through the GI tract)!  Then came the afternoon and things started going downhill from there.  When I returned from lunch with my parents, the nurses told me Joshua's hematocrit level was low and he required a blood transfusion.  This means he had to have an IV inserted in his left hand and it is now taped up with a splint.  He doesn't like this one bit because he enjoys putting his fingers in his mouth.  The plan had been to remove his stomach tube again today because the output had been much less and light, almost clear, in color.  Then between 6-7 last evening, I noticed a large amount of dark green liquid coming out of the tube and alerted the nurse.  I could tell our nurse was really disappointed with this turn of events since it could mean Joshua has a blockage or some other issue in his upper GI.  Josh's stomach tube was put back on suction.  So just like the doctor's have told us from the beginning, recovery from gastroschisis is tricky and we can expect multiple setbacks along the way.  The doctor explained to me this morning that the poopy diapers mean the lower GI tract is working, but the green bile being pulled from his stomach means the upper GI tract has not caught up yet.  He will not be able to start on feeds until both parts of the GI tract are working in conjunction with one another.

I have met two remarkable women the last few days that have really helped me keep things in perspective.  I was feeling down and discouraged about Josh's lack of progress, but these ladies who happened to cross my path have me thinking about things in a new light.  I ran into a mother in the laundry room who was nice enough to throw my clothes in the dryer two nights ago.  We struck up a conversation after I thanked her for this courtesy and she told me about how her 4 year old son has been at Egleston since June waiting for his second heart transplant.  The first transplant only lasted a few months and now they are here waiting an unknown amount of time for a second suitable heart to appear.  I can't even imagine!  The second lady passed me in the NICU hall last night and asked if my last name was Folden.  She apparently had read my blog and was in NICU A with her son when Joshua was admitted.  Her son was born at 25 weeks in April and has had 11 surgeries with more still to come.  She is planning on being here until October or December.  Again, I was speechless and thought about how fortunate we are to be dealing with a treatable condition that will not affect Joshua for the rest of his life.  I know he will get better and it is just a matter of time.  It's time to count my blessings and quit feeling sorry for our situation.  I still feel heartbroken when I know Joshua is hurting and I can't do anything to help him feel better, but things could be so much worse. 

He does open his eyes every now and then

Our little fighter flexing his muscles

Two steps forward, one step back

Joshua has been through so much during these past few days.  To give you an idea of a day in the life of the little guy, on Friday Joshua had:

An X ray at 3 am to check his PICC line placement.

The usual vitals check at 4 am which consists of flushing his stomach tube, listening to heart and bowel sounds, temperature check, diaper change, glycerin suppository, and changing of TPN  fluids.

At 5 am, a member of the surgical team came to evaluate his closure site and palpate his tummy to check for signs of infection.

At 8 am he had another vitals check and a visit from the doc for an overall evaluation.

At 11 am he had his heel pricked for a blood gas analysis and a bag placed around his penis to catch a urine sample.

Another vitals check at 12 pm.

A cranial ultrasound around 12:30 pm to check for abnormalities in his brain (thankfully the ultrasound was normal).

More vitals checks at 4 pm, 8 pm, and midnight.  

And I may have forgotten about a few things in between.

These are exhausting days for both baby and mommy!  And throw in 6-8 pumping sessions per day for mommy, too.  Remember the movie Groundhog Day?  I now know how Bill Murray felt.

Today we received the much anticipated news that Joshua's stomach tube would be removed and we would try his first feeding.  David and I were pumped!  Unfortunately, the day did not turn out well.  Joshua's tummy showed signs of increased swelling which was alarming.  He slept right through my attempt to bottle feed him 5 cc's of my milk which was quite frustrating - I thought he would suck it right down.  It turns out Joshua was trying to tell us his little body wasn't ready.  This afternoon he vomited a yucky green substance during a vitals check.  His Anderson tube was immediately shoved back down his throat and a bunch of green liquid was drained from his poor stomach.  On the bright side, the swelling in his tummy subsided and that was a huge relief.  For now we will wait and see how things go with the drainage from his stomach and try feeds again in a few days.  Everyone tells us this is completely normal and not to be discouraged.  Easier said than done.  

On a happier note, Joshua and I have been practicing kangaroo care the last few days and that has been really rewarding.  The objective with kangaroo care is to provide maximum skin to skin contact with baby and mommy (or daddy) which "stimulates physiological and psychological warmth and bonding".  From Wikipedia: Kangaroo care arguably offers the most benefits for preterm and low birth weight infants, who experience more normalized temperature, heart rate, and respiratory rate, increased weight gain, fewer nosocomial infections and reduced incidence of respiratory tract disease.  Additionally, studies suggest that preterm infants who experience kangaroo care have improved cognitive development, decreased stress levels, reduced pain responses, normalized growth, and positive effects on motor development. Kangaroo care also helps to improve sleep patterns of infants, and may be a good intervention for colic. Earlier discharge from hospital is also a possible outcome.  Finally, kangaroo care helps to promote frequent breastfeeding, and can enhance mother-infant bonding.

Photos courtesy of my multi talented sister-in-law, Anne Manning.

Our amazing little champ!

It has been a whirlwind the last few days.  I really thought I would have more downtime to post updates, but I seem to stay busy from morning until night.  That's not a bad thing since I prefer for the time to go by fast.

The big reason I have had such little downtime is we were able to move from the intensive side of the NICU to the step down unit on Sunday.  This is excellent news because it means Joshua is making rapid progress (he completely skipped the "swing unit" which is the area most babies go to in between NICU A and B).  It also means we were able to get a private room so I am able to be with him 24/7.  While this has been a most welcome event, it has also taken some getting used to because sleeping is incredibly difficult.  There are bells and alarms going off most of the night and the nurse comes in multiple times a night to check Joshua's vitals, add fluids, and just generally disrupt our rest.  I had a minor meltdown after the first night due to the exhaustion and continued pain from the c section which was made worse because of the uncomfortable chairs we have to sleep in.  The next morning I was pumping, rocking back and forth, and crying uncontrollably as I blabbered about how I didn't think I could hack it.  I feel pretty silly about it now!  As he always does, David comforted me and then had me laughing about it a few hours later.  We have made friends with the parents that were next to us in NICU A.  When I discussed the incident with the mom, Cari, she replied "That's the only meltdown you've had?  You're doing a lot better than me, I have one every day!".  I realize I need to cut myself some slack and understand my raging hormones are contributing to how I feel.  I was much more prepared last night and was able to get 5-6 hours of sleep in hour increments.  Joshua also had a much better night - I think because we gave him his first bath right before bed and he really liked it.

We are still waiting on the signs we need to see before Joshua is able to start on feeds.  I am anxious to get there because I can tell Joshua is hungry.  He started taking a pacifier two days ago so he will have the sucking instinct down by the time we can start bottle feeding.  The closure site on Joshua's tummy is looking great and is no longer infected.  We found out yesterday that Joshua may need a blood transfusion tomorrow which is disappointing news.  He will have a blood test in the middle of the night (4 am is a favorite time for tests around here for reasons I have yet to understand) and we will know by tomorrow morning if he needs the transfusion.  Even if he does need it, it should not be that big of a deal considering all the other things he has already been through.  So for now we just watch and wait for him to be ready to eat which will be an incredibly exciting event!!

Our little bulldog!

David holding Joshua for the first time.  Does he look a little scared?

  

No more breathing tube and other great progress!

I apologize for not posting an update before now.  The time has flown by these last few days between visiting the NICU, pumping every three hours, and trying to find time to get some rest.  Joshua has made so much progress since Wednesday - we could not be happier with how well he is doing!  I was discharged from the hospital Friday afternoon (finally) and we made our way to Decatur after packing up stuff at home for our extended stay.  I was so anxious to get to Egleston to see Joshua!  Being able to see and and touch Joshua again was unbelievable!!  David said the swelling and redness around his tummy had improved quite a bit since the morning. Unfortunately, he still looked quite uncomfortable with the breathing tube in and he kept trying to pull at it with his little hands.  This morning David and I walked into the NICU to see Joshua with his eyes open and without his breathing tube in!  He looked like he felt so much better without that pesky breathing tube in. 

And then the best part about no breathing tube - Nurse Nancy told me I could hold him!!  I was giddy with excitement!  I held Joshua in my lap for over an hour and it was amazing.

Things just kept getting better today.  When we went to visit with Joshua this evening, I was able to change his diaper for the first time!  He is such an agreeable little baby, even with all the unpleasantness he's going through.  I can't wait to visit Joshua tomorrow and see what progress he's made!

Joshua's first full day - and it was an eventful one!

After Joshua left my hospital room at 2 am, I received a call from a nurse at CHOA around 4 am letting me know he had arrived safely and she needed my verbal consent for him to be evaluated and have surgery.  I quickly agreed and anxiously waited for the next call.  The call came at 5:15 from the pediatric surgeon - Joshua was doing great and she had been able to perform a primary closure!!  There are two options for gastroschisis patients: primary closure which involves tucking the intestines back into the abdominal cavity and surgically closing up the hole, or a silo where the intestines are packed inside a sterile bag and hung above the hole in the baby's abdomen so they can slowly be reintroduced into the abdominal cavity over the course of several days to a week.  Primary closure is preferred, but is often not possible because the abdominal cavity is not large enough to fit everything and it puts pressure on the baby's already strained lungs.  We were hoping for a primary closure, but expected a silo since that is the necessary option more often than not.  I was thrilled to hear the surgeon say that Joshua was an excellent candidate for a primary closure since he did not have too much of the intestines out and his lungs were nice and healthy.  Our little boy was already put back together and whole!!  I am dumbstruck and elated at how fortunate we are with this outcome!  Don't get me wrong, I know there is still an incredibly long journey ahead of us since the real issue with gastroschisis babies is getting the intestines to have healthy activity and absorb nutrients the way they are supposed to.  Joshua will still be intubated for several days since he is on morphine to control the pain and the ventilator is necessary to keep his breathing at a normal level.  He has a PICC line for IV nutrition, a catheter for emptying his bladder, a tube for emptying his stomach contents since his intestines aren't working yet, and a long way to go before he can start on feeds.  The feeding process is the trickiest part of recovering from gastroschisis and can take anywhere from a few weeks to a few months.  In about two weeks, Joshua will be introduced to his first real food - 1 milliliter of my breast milk.  From there the amount of milk will be slowly increased if his body is able to process it.  Often times babies take two steps forward, then one step back.  Since the intestines have never functioned properly, it can be a very arduous process.  But, so far Joshua has exceeded all of our expectations and I cannot doubt our little champ - he will fully recover and I strongly believe it will be more quickly than usual.  I am so proud to be this extraordinary child's mother! 

Joshua after his successful closure surgery

First page of the journal David and our excellent nurse, Nancy, started together