Thursday, October 31, 2013

Happy Halloween!

 How am I supposed to lose the baby weight with all THIS in my house?  Gotta find some self control, I guess...

Sunday, October 27, 2013

Thank Goodness Babies Don't Have Memories (Part Two)

We were transferred from Children's to HSC on Friday afternoon, October 11 by ambulance.  As I walked into the wing my heart dropped.  The facility seemed old.  Our room was right near the entrance wing and it had 2 HUGE windows- one in the wall which I discovered I could cover with a curtain, the other on the door, with no way to cover.  My needed privacy for breastfeeding was gone.  There were two cribs in the room and I feared a roommate.  The charge nurse was male and I did not want to have to cover up to nurse.  I didn't see a bathroom from where I stood.  And worst of all, I did not sense the same competence I had come to expect from the nurses at Children's.  I was alone, in a new place, with no privacy, with people I didn't trust.  As soon as everyone left the room I broke down in tears.  The social worker found me like that, but I didn't feel like talking so I blamed it on being overwhelmed.

Things weren't as bad as I first thought.  The staff informed me that Luca would not have a roommate and then allowed me to rearrange the room to my liking.  We pulled the bed between the two cribs and I usually nursed there where I was hidden.  They also put a sign on my door asking people to knock before entering so I'd have some warning to cover up.  Hidden around a corner was a bathroom with a shower just for us.  And all but one of our nurses were female, so I didn't have to worry about that either.  And the food was cheaper- when I could make it to the cafeteria in the small window of time it was open.       

Kaylon and the girls came to visit on weekends- replenishing my wardrobe and giving me some company, even if it was just a couple hours.  They all seemed to grow in that small amount of time.  I felt bad for Kaylon who was missing so much of Luca's life and let him snuggle his son as much as possible while I cuddled the girls and listened to their stories.

Weekdays were long and monotonous: lots of TV, facebook, and reading.  Lucky for me I had two books come out that I had preordered on my Nook, so I got to read those without guilt.  Luca continued to improve and gain at least an ounce a day.  He freaked all the nurses out with his angry, which he used pretty much every time I changed his diaper since he had a rash from the antibiotics.  Seriously they'd run in with this look on their face like they expected me to be beating him.  And then over his screams I would explain that, no, I was just changing him.  At least once a day, no lie.  Our big excitement came on Friday when we got transferred to Children's for a few more tests to make sure everything was progressing as expected.  His head u/s was perfect and his VCOG (where they take lots of xrays while he is urinating to see if there is backflow) showed a slight problem, but not big enough to correct surgery.  This could have been the cause of the infection- no one will ever know- but most likely it will correct it self completely over time.  That same day the infectious disease doctor okayed us going home Saturday night after his last dose at 8pm.

At his noon dose I noticed his bandage was wet, but I assumed it was from him spitting up.  When it happened again at 8pm, I mentioned it to his nurse.  She said they would check it when they took it out.  Kaylon arrived as they were about to pull out the central line.  We decided to step out since Kaylon gets queesy and I was tired of watching him cry.  The nurse almost immediately came back out to get us.  The doctor informed us that the line had broken at the juncture with the plastic piece that was stitched to his arm.  An xray confirmed what I knew in my heart, even as the doctor told me was a small chance of happening: the line was still in his arm and it would have to be removed by doctors at Children's.  I burst into tears.

Kaylon followed the NICU ambulance back to the hospital.  This time I did not get to ride in the back.  Because he was still less than 4 kilos he was in an isolette; because of the PICC line in a vein to his heart he was back on the monitors.  We were in the ER for a few hours till we learned that again the HSC doctor had been wrong- no team was ready for us at the hospital and we would have to be admitted again.  I sent Kaylon home to relieve the babysitter and Luca and I got a room on the 4th floor (short stay patients).

In hopes that Luca could get the procedure first thing in the morning, they asked me to stop nursing him at 4am.  Unlike the morning when they put the line in, they did not get to him right away.  That was one of the hardest days of the whole experience as I sat there next to him, unable to hold him knowing that he would smell the milk and start to cry.  I kept giving him his sugar water dipped pacifier and miraculously he slept most of the day.  They did another xray and u/s to make sure the line had not moved.  And then finally a surgeon came to the room to discuss options and get consent.  At 4pm- 12 hours without food- Luca went under general anesthesia while I, and our whole family prayed.  They had warned me that it could take up to 2 hours, so I headed to the cafeteria to get food while I could.  When I came back to the waiting room a doctor came out immediately to tell me that it was over in record time and all was well- he compared it to taking a splinter out of a finger it was so easy.  When he had recovered enough they let me back to hold him- what a relief it was to see with my own eyes that he really was ok!

They let me nurse him when he finally woke up, but he threw most of it back up- which they told me was normal.  After seeing that side effect along with his drowsiness, I decided to stay the night instead of trying to break out that night.  So we settled in for the night back upstairs and got a fairly good night's sleep.  They released us as soon as Kaylon and the girls arrived.  We were finally, after 15 days in the hospital, going home!

I am so grateful for all the people who helped us through- great nurses and doctors of course, but also those who watched my children, filled in for our church callings, and prayed for us.  It was an awful two weeks, but in the end I got to bring my boy home, and I know not everyone gets to do that.     Luca is healthy now and I will forever be grateful to my Heavenly Father for that.

Sunday, October 20, 2013

Thank Goodness Babies Don't Have Memories (Part One)

Early last Saturday morning I realized that Luca had a fever.  Any mom will tell you that the hospital drills into you before you leave with your newborn that any fever 100.4 degrees or higher needs immediate medical attention.  I woke Kaylon up to tell him I was going to the ER and headed out.

Luca's fever was up to 102.5 at the ER.  I informed them also of his doctor appointment 2 days earlier where we had discovered he had not gained weight as he should- he was still below his birth weight at two weeks old.  They started to do what I knew they would- a full work up.  They ordered blood- both counts (heel sticks) and cultures (IV), a urine catch by catheter, and the dreaded spinal tap.  Everything but the catheter they had to do twice because they didn't get it right the first time.  They eventually gave him an IV as well, which also took two attempts.  It was absolute torture to sit there with him as he screamed and know there was nothing I could do.  I left the room for the spinal tap, but couldn't bring myself to move farther than the hall outside his room- it felt like abandonment.  That's how I found out that they did the procedure twice, because I saw the nurse leave and come back with another kit.  His blood results came back with a high white blood cell count, so they started him on two different antibiotics, knowing there was an infection, just not what kind.

Our insurance made the decision to send him to National Children's Hospital,in DC, where he would be admitted.  Kaylon and our home teacher made it to the hospital before we left and gave him a blessing, which said that the doctors would be able to help him and that he'd be ok.  I didn't worry about him from that point till 2 weeks later.  Kaylon waited with us till the ambulance arrived and then took the van which I had driven back home.

Once we arrived at Children's we were ushered into a huge room on the 7th floor (extended stay wing).  Our favorite nurse- Anna- was there to greet us.  They ordered yet another spinal tap which they did in a procedure room without me (fine by me- I didn't hear him cry and I got to eat the first real meal that day).  They managed to get a small sample, just enough to check for meningitis.  They had to then fix his IV, but luckily they have a fantastic IV team at Children's who just do IVs all day long, so the process was quicker and less painful than at the ER.  Finally the tests were done and we were allowed to rest, well, as much as is possible with a fluid IV in the arm, 3 leads to the heart monitor on the chest, a blood pressure cuff on the leg, and an oxygen monitor on the foot.  Nursing him was tangled to say the least.

Slowly doctors and results started to trickle in, as well as explanations.  The spinal taps were hard because Luca was dehydrated- not from lack of nursing, trust me, but because the infection and fever were burning it all off.  The third one, while a sample was procured, could not be trusted because the ER had already given him antibiotics.   No one really thought he had meningitis, but since he was so little and they couldn't rule it out, they had to treat it.  At first news came that it was not a UTI, but the next day word came that it was a confirmed UTI- e-coli bacteria.  A doctor warned me Sunday that we might be looking at a week's stay.  An u/s of his abdomen was ordered since it was uncommon for boys this young to have uti's to make sure his anatomy was correct, which showed he was fine.  Infectious Disease doctors were given the power to decide treatment and on Monday they handed down their verdict: two weeks of IV antibiotics in the hospital.

Kaylon had to scramble.  He went to work on Monday with many friends' help with childcare.  He got a work laptop and permission to work from home for two weeks with the exceptions of Fridays and the conference the next Tuesday.  More friends offered to take the younger two during those days, and the older two after school.  My dad and his wife graciously agreed to take the full day Tuesday, so Kaylon could go to his conference that ran early morning till late at night.  I feel so blessed to have so many people love us enough to sacrifice like that, and for Kaylon's work to agree to such measures after Kaylon had taken off 2 weeks for Luca's birth.  Truly these people were angels on earth.       

Life for Luca and me consisted of round the clock vitals, three antibiotic treatments per day, doctor's rounds, and lots of nursing.  I had a reclining rocking chair, as well as a couch bed for sleeping.  In the interest of looking on the bright side of things, I can appreciate the one on one time I was getting with my fifth child- something near impossible at home.  I got to bond with him with no distractions (ok, maybe different distractions).  I got through those early sleepless nights, normal for any newborn, in a place where people offered to take him so I could get some sleep and where I was only expected to feed him the next day if we had a rough night- not take care of 5 other people as well.  By the time we got home 15 days later, Luca's sleep schedule was more consistent (though not perfect by any stretch of the imagination).  I even had other people cooking for me, though I did have to pay for it.  True it was exhausting mentally, emotionally, and physically, but seeing these positives makes things slightly better.

A central line, or PICC line was placed in his arm the Wednesday after we arrived to avoid constant IV insertion as veins gave out after a few days.  That procedure only took an hour or so and they just gave him a medicine to make him sleepy and a sugar water coated pacifier.  With that placed, his fever gone, and his weight increasing, insurance decided to send us to a transitional (read:cheaper) facility for the rest of his treatment.  They chose HSC (House for Sick Children, very original :/) and we were slated to leave on Friday.  I was excited, being told it was a more home-like enviroment, and that is had cheaper food (our food budget was already blown).  If only I had known what I was in for, I might have fought to stay there... tbc