Sick babies

Back on Valentine's Day, the girls did their car seat test.  They had to sit in their car seat for one hour and keep their oxygen and heart rate up.  Josie passed and Brynlee failed, which was surprising.  Later that evening, Brynlee stopped breathing as I was holding her and needed stimulation, which wasn't normal for her.  We got her settled back in and I headed home for the night since it was around 8pm.  The next day, she was having a few coughs here and there and also bringing down her stats.  We kangarooed and cuddled for a while.  A nurse we didn't have too often thought it was reflux.  But tt wasn't how she normally acted and we already knew she had refulx.  The nurse only had her and another child that day and felt it was meant to be and for a reason.  She contacted the doctor on call and told him what was going on and that she should probably be looked at a little more.  He decided to send in a whole panel of tests to see what was going on.  It could have been a virus, urinary tract infection, etc.  Their primary nurse got in at 7pm that night and was given the lovely job of taking blood, getting a urine sample through a catheter, taking lung secretion samples, etc.  Poor Brynlee cried the entire time they were picking on her, but quickly forgot.  The first set came back pretty quickly and had slightly higher levels than they would like to see, but they weren't horrible.  They still had to wait for another panel to come back to see if Brynlee had any viruses.  The next morning they called to see when the panel would be back and found out it was only ran once a day unless otherwise requested.  They ran the panel and found out she had RSV. 

RSV can often be a cold in an adult, but for a preemie can cause severe sickness and be life threatening.  Josie was still acting normal, but they wanted to see if she had it and she tested negative.  They put the room in isolation that Saturday, so we had to wear special gowns between the girls, had wash our hands so much our hands bled.  Josie was supposed to be going home that Sunday or Monday, but they kept her in to make sure she didn't get RSV or start showing symptoms.  Brynlee continued to get worse (supposedly it's supposed to peak around day 4 or 5 and then get better).  She had to be hooked back up the oxygen (vapotherm) with nebulizers to help open her airway and then treat her.  She also got deep suctioned as needed and a therapist would come in and tap on her chest to break up the junk in her lungs. 

Josie stayed a little longer to make sure no symptoms arose and came home on Wednesday, February 20th after Tyler and I took the CPR class.  Brynlee stayed in isolation for about a week after that just to be safe.  She had tested negative for RSV for about the last 4 days of isolation, though. 

Josie did really well adjusting to be at home.  Some evenings were a little difficult as she would cry when being fed or have general evening fussiness.  She had surgery to place a G - tube in her belly about 2 weeks prior to coming home.  She aspirates food into her lungs so were are unable to give her any food orally unless small amounts for comfort.  That plus having a baby at home and one in the hospital did present us with a little bit of an extra challenge.  After being home for a few days, she spit up a couple times after feedings.  We had been changing her diaper if she dirtied it again while eating, so we thought it was from moving her around too much or feeding her too fast through her g tube.  We tried slowing it down, not moving her after feeding, burping her and she was still throwing up atleast 2 feedings per day and it increased on Monday or Tuesday of last week. 

Late Tuesday night, she was very fussy and wanted to be held so we sat in the rocker for a few hours since she wouldn't let me put her down.  Wednesday morning, Ty got up with her around 3am for her feeding.  All of a sudden he yelled for me, so I ran around the house like a crazy lady and eventually found them in the kitchen.  Poor Josie had bubbles coming out of her mouth and nose and was pretty lifeless.  I got her cleaned up and was thinking about calling the doctor.  She went to the bathroom, which she hadn't done in about 48 hours, and was fine again.  Ty stayed downstairs with her until her next feeding.  We got her fed and went to take her to her follow up doctors appointment.  The doctor thought she probably had refux, a cold, or feeding her too fast.  She told us to keep an eye on her and let her know if anything was ever different with her and to trust our judgment.  Our next appointment was a month from then, because she looked great considering she was born so prematurely.

Wednesday night she still didn't feel well and I was worried about her.  I stayed up until midnight watching her and then layed down until 1 am to feed her.  She seemed a little blue at one point, but I thought it was just the nightlight and she didn't seem different.  My grandparents came to watch her on Thursday from about 10 am until around 4pm so I could go down and try to nurse Brynlee.  I left the phone next to my grandma, gave her some instructions in case she acted funny and left the pediatrician's number on the counter.  Ty and I got home at 4pm and my grandparents probably left at 4:30. 

Around 4:45pm, Ty heard Josie make a sound so he looked down to give her some attention and see what she was doing.  He thought Josie's hands were cold.  I told him it was because her hands weren't covered.  He felt her head and thought it was a little cool.  He lifted her hand and it fell as he let go and her lips started to turn blue.  I tried to stimulate her like we did at the hospital but she wasn't responding at all.  My brain went out the window, but Ty stayed calm and told me to lay her on a hard surface.  We hurried and got her clothes away from her body and kept trying to flick her hands and feet to tick her off and make her breath again.  Nothing was working, so Ty gave her CPR and brought her back to breathing on her own.  It took her four sets of 2 breaths and a couple chest compressions for her to really come to.  After that, he kept beating her on the back to keep her going and making sure she wasn't choking. 

I called the doctor's office and the nurse sent us to the ER.  We got there around 5:30.  They ran tests to see what was wrong and admitted her into the pediatrics floor due to her apnea spell.  I didn't want to take her home and worry about her stopping breathing, so I wasn't disagreeing at all.  Finally around 10:30 or so, we found out she had RSV.  She seemed to be doing much better than Brynlee did with RSV so I figured she would just need to continue with the oxygen cannula until we rode out the virus.  We fed her at 11:30pm and then headed home to eat and get to bed.  Friday Ty went to work and I stayed at the hospital for a good portion of the day.  The girls' wonderful primary nurses came to visit Josie when they found out she was sick.  We are so lucky to have such great friends at the hospital and at home!

Yesterday, Grammy and Grampy made the 4 hour trip to come visit for the afternoon/evening.  It had been a long time and it was the first time Grampy had held them!  Great Grandpa had also came down too.  Unfortunately, Josie decided she was going to have a breathing spell while being held by him.  I think she had about 7 spells during the day and around 10 during the night.

This morning, they put her on vapotherm, which gives humidity and increased oxygen support.  She continued to have spells so they gave her food via continuous feeding rather than every three hours.  At around 10:45am, they said that if she continued to have spells they might move her to the pedatrics intensive care unit (PICU).  I was more than ready to move to the PICU as going from the NICU to pediatrics floor was a major difference in care.  I went down to nurse Brynlee and said I would be back to Josie's room at 12:30.  I got a call shortly before 12:30 from the doctor, so I went back up and they decided they were going to move her to the PICU.  They moved her down to the PICU around 2pm and put her on a radiant warmer rather than a crib for easier access.  They had to call the NICU girls to get an IV in her due to her viens being so small.  After about an hour, they finally got one in her head.  They also decided to put her on cycled CPAP, which forces breaths reminding her to breath and gives her more oxygen support (via a nose cannula).  At 4:45pm, they called to let us know they were going to intubate her since she continued to have more spells.  When we got there, she was pretty restless, so they gave her a couple drugs to calm her down so they could do lung treatments and make her feel better.  Right now there isn't much we can do except wait for her to get better.  Hopefully we are on day 4-6 and will start to be getting better rather than worse from here on out.  I am sure it will be a long recovery to get her back to where she needs to come home.  Luckily they gave Josie her shot to reduce RSV symptoms back when Brynlee was sick.

Brynlee is currently working on feedings.  The ENT looked at her a couple days ago and said her throat was still a little swollen from RSV, but is pretty normal looking.  She isn't on any oxygen, but probably still doesn't have the lung capacity and energy to take more than 4 feedings per day on her own.  She tends to do good at 2-3 of those feedings, though.  I try to nurse 1-2 times per day and then she takes her bottle the other 2-3 times.  What she doesn't take via nursing or bottle, gets put through her NG tube (feeding tube through nose to stomach).  The other 4 feedings per day (has 8 total/day), she doesn't get to attempt to eat on her own but will eventually as she gets more strength and takes more of her.

Josie is about 8 lbs, 11 oz and Brynlee is 8 lbs, 15.3 oz.  Brynlee's eyes are turning light blue and Josie's eyes are still dark blue probably going to turn brown.  Both girls have lost alot of their longer hair and but still have shorter hair that is coming in.  Josie's is now a lighter redish brown and Brynlee is still redish blonde.  Pictures to come as I have time.  They will be 4 months tomorrow!

**Please take a CPR class or atleast watch a video in the meantime if you plan on watching any children**  We never thought we would need it especially only being home 7 or 8 days!  The American Heart Association disagrees with a majority of the world on how to perform CPR for infants.  We were taught to give children breaths first rather than compressions as you want to give the person what they are unable to do for themselves.  In alot of cases for children, it's breathing and for adults, its heart issues.  Please take a class to learn more about this and remember to do for the person what they aren't doing for themselves.