Thursday, November 20, 2014

Anemia pt. 1

When Luke was born, they took him at 25 hours of age to do the newborn screening testing. I remember I fed him at 1am that morning and then called the nurse who took him down to the nursery to complete the newborn screening.  He was brought back to me and I was told several things including that he was not happy about the tests and therefore they could not finish the hearing test because he wouldn't stop crying.  Several hours later (around 7ish) day 2 of Luke's life it was discovered that he had a high bilirubin level and would need to be placed under phototherapy lights in the nursery.  Not only would they be able to get lights on his backside, but they could get lights on his frontside also.  We were told that he would have to be in the nursery for as long as possible and they would bring him to me for every feeding because I am breastfeeding. While I knew it was best for him to be under those lights as long as possible, I was also sad that I couldn't bond with my baby except for feedings.  Along with breastfeeding we had to introduce formula to Luke so that he wouldn't get dehydrated (since my milk hadn't officially come in, all I was producing was colostrum) and could grow a little more and keep the bilirubin at bay.  I would nurse him anywhere from 20-40 minutes and then give him a 2 ounce bottle.  At first he wouldn't take the bottle from me but then he became accustomed to it.

I was discharged from the hospital on Sunday, September 14th, but Luke was to stay another night. (Cue Momma tears)  The hospital was amazing and found a way for me to be able to stay at the hospital with him another night but in a smaller room.  My smaller room was right next to a stairway and some guy actually opened my door thinking I was someone else.  Needless to say I didn't sleep very well.  I was so grateful to the hospital for getting me that room though because there was no way that I could leave Luke like that.  I remember calling Andy that night and crying saying "I feel like I he isn't mine and I have to keep giving my baby back".  What an awful feeling!

You can see his raccoon eyes and the cute little goggles that he wears under the light.  
Poor kid had a high bilirubin level. :( 

Monday, September 15th we were finally able to go home with Luke but had to take home a portable bilirubin bed for him to sleep on.  We were to bring Luke back up on Tuesday for a blood draw to find out how his bilirubin level is.  His numbers jumped from a 12 to an 18! The pediatrician said he was looking for his number to be around 10 or lower for him to be off the light therapy. Luke's pediatrician was concerned that his level went up so high, but found another alternative in keeping him home.  The bili blanket was ordered for Luke to lie on.  We thought it was this thing like a blanket that you zipped him up in, but found out it was this rectangle shaped pad that we placed on his back.  It was much smaller blue light for him to lie on, but the light was much more concentrated.

The bili-bed in the hospital

The bili-bed at home

The bili-blanket

Luke had a blood test every 2 days to determine his bilirubin levels and was stuck using some sort of light therapy for 2 weeks of his life.  We went to visit the pediatrician 2 times in that 2 weeks to follow up on Luke's care.  The office visit on September 26th the pediatrician wanted us to get another blood test done on Sunday, the 28th to check his red and white blood cell counts.  While I wasn't happy about going to get blood drawn on a Sunday, I knew it had to get done.  The bad part about getting blood drawn from the hospital on a Sunday is that we had to go into the ER to register and have some random pheblotimist draw his blood.  When I say random, I really mean RANDOM!  It was pretty obvious she was not use to drawing blood from a newborn and it really was making me angry.  She was so frustrated and took so long to draw the blood (not to mention sticking him multiple times) that the blood clotted and was no longer useful to get labs from.  She told me she needed to step away and would be back in 15 minutes so that Luke could rest.  10 minutes later a new person arrives to draw his blood, THANK GOD!!!  

waiting to get our blood drawn on a Sunday,
we sent this photo to Grandma while we waited

That afternoon Andy, Luke and I spent some time with my family over at my brother's house.  My brother had just purchased a pop-up camper and they were opening it up and checking it out.  Around 5pm we received a phone call from our pediatrician.  He told us that Luke's bill-rubin levels were down enough to for-go the light therapy but his hemoglobin levels were at a dangerous level and we would need to head to the nearest ER as soon as possible for further testing.  Talk about making a mama cry and freak out!!  So back to the ER again while we wait in a room with sick people...ugh!  Eventually we were brought back to the pediatric ER room and waited for a nurse to come draw blood from Luke.  This time the blood was to be drawn from his hand and not his foot.  Mama tears once more!  I held Luke while a nurse and a tech tried to get the blood and they had no luck.  Tears were flowing down my face while I watched my poor baby cry and cry!  They determined that they would need the nursery nurse to come down and draw the blood.  The nursery nurse was able to get the blood right away and we waited for the results.  I lied with Luke in the bed and we watched the end of "Dirty Dancing" and the beginning of "The Blind Side".  I was not about to put my baby down and he received lots of snuggles.  

10pm that evening it was determined that we needed to be transferred to Cardinal Glennon Children's Hospital that night!  We didn't have to take an ambulance there (thank god, can you imagine the cost of that ride!) but we needed to be there as soon as possible.  We ran home and grabbed some clothes and snacks.  We had no idea what was going to happen and just wanted to get him there as soon as we could.  

11:30pm we arrive in downtown St Louis at Cardinal Glennon Children's Hospital.  We have to go through the ER (awesome....) and get admitted.  At one point and ER doctor comes in and says "So I hear we can't stop vomiting".  I say, "Uh no, he has a high hemoglobin level and we were transferred from another hospital".  He says, "Yeah because he won't stop vomiting"  I say, "No" and then we were saved by a nurse who says they have a room waiting for us at the second floor.  

1am we arrive in our room and Luke is screaming because he is tired and has a poopy diaper and this doctor and nurse comes in and asks a million questions.  Andy and I were getting annoyed because all we wanted to do was change his diaper real quick and calm him down and they just kept talking to us.  We then find out that they won't be doing anything to Luke until around 6am to draw his blood.....Andy and I were not happy but there was nothing we could do.  Luke ended up sleeping on my chest that night.  He wasn't happy and that was the only way we could calm him down.  I got maybe 3 hours of sleep that night and I know Andy didn't get any.  The fold out recliner was an awful option to sleep on for him and I felt so bad for him but I knew he wasn't about to leave Luke and I alone at the hospital.

6am his blood was drawn.  7am the doctors and nurses start to come in the room asking the same questions over and over again but never telling us what is going on.  It was really frustrating but I had to just stay quiet until they could find out what is going on.  At one point we had 10 doctors in our room at one time.  I kid you not.  I felt like I was on an episode of "ER" or "Grey's Anatomy".  There were student doctors, 3rd year doctors, the head of pediatrics, dietitians (yes you read that right), you name it that doctor was in our room at one point.  FINALLY around 2pm a doctor came in our room and explained what he was thinking was wrong with Luke.  He said he couldn't determine exactly what blood condition Luke has because of his age, but he would be taking over Luke's care from the time being.  He said that Luke could very easily grow out of his blood condition also around 6 months of age but its really just a waiting game.  We were to get weekly blood draws and the hematologists office would be in contact with us.  The scary thing about this doctor is his title, "Hematology and Oncology".  

We were thankful for some explanations and answers from our doctor and learned that we could go home that evening.  So from 11:30pm on the 28th to 5pm on the 29th we stayed at the hospital for really no reason and were charged a whopping $500 to sleep in that room that night....I never spend that much on a hotel room!  I had wished that they handled us a little bit differently because there really was no reason for us to rush to the ER that night at Cardinal Glennon.  They knew they wouldn't be testing him until that morning and we could have easily brought him up to the hospital at 6am, but they didn't want to do it that way.  While I understand why they did what they did, I also wish it had been handled differently.

The first ER of the night

Daddy cuddles, see his poor hand bandaged up

The way too big gown at Cardinal Glennon

Sleeping in the crib at Cardinal Glennon

The morning at Cardinal Glennon sleeping on Mommy again

Leaving Cardinal Glennon with a road bottle!



Jen said...

Oh goodness...what a journey.

StephTheBookworm said...

So sorry you have had to endure all this. He is one tough little dude and you are one tough mama!

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