Happy Mother's Day!

I am so blessed to wake up to these sweeties every morning!

RSV update and Rules

Yesterday morning was rough for Josie.  They added a paralyzing sedative so they could do all the breathing for her.  They also had to take her down and put an IV in her neck under imaging to make sure it was going the correct direction.  She wasn't breathing well and they noticed her breathing tube didn't look right so they pulled it out and put a different type of tube in.  When she was down getting her IV in, they noticed she was having issues with breathing.  They took her in the next room over and found she had a collapsed lung.  Currently she is intubated and on a ventilator but we may have to go to an oscillator to get the carbon dioxide out of her body and to a reasonable percent.  Hopefully she is fiesty enough to keep her where she is at ventilator-wise.  She had a catheter yesterday as she was retaining urine.  They were also giving her eye drops, I assume, to keep her eyes moist.  We may be in the hospital a couple more weeks, but there is no way of knowing at this point.

Yesterday afternoon, she was a bit messy looking from all of the pokes and proding, but was resting nicely.   I spoke with the PICU doctor,  who I liked immediately, about numerous things.  She told me things we need to do to protect our girls, especially after having RSV.

New rules:
- We will be limiting and possibly restricting young children around the babies until around the end of April.
- Visitors who smoke will need to shower and change before holding the girls.  Clothing will need to be from smoke free home or washed at our home.  We are willing to keep a change of clothing.
- If you have had any illness in the last week, please wait a week before visiting.

The first two years of our girls' lives sets up their immunity for their whole lives and we really think these precautions are worth it.  A common cold can be life threatening for our girls.  Their lungs are extremely underdeveloped due to being micropreemies.  It's tough hearing and comprehending, even for myself, but seeing our child lifeless in intensive care isn't what we want to ever see again.

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. 

Learning new things

Surgery for Josie went well.  She was in and out in less than an hour.  She stayed pretty sleepy the whole day.  At midnight, the extubated her.  I was surprises at how well she did off the vent.  She did have an issue around 11:30 am, but I think she was getting hungry and in pain.  Her first two meals were pedialyte. Then tonight, she moved milk without fortifier at half volume increasing each feeding. 

The girls are up to 59 mL of milk or 1 mL short of 2 ounces every 3 hours.  They are both about 7 lb 5 oz.

Brynlee's job has been working on eating.   We started out once per day getting about 20 mL.  They increased to twice a day, which was hard to do with work and sometimes she just wasn't as awake as she needed to be.  She was increasing each time to about 30-35 mL.   Today we nursed at noon with about 35.  Then I went back at 9:00pm and she did 30 or 35, burped and switched sides and did 15 or 20 more to get 50 total.  She was only short by 9 mL of goal feedings so they counted it as a full feeding in case the scale was wrong.  :)  Tomorrow we are allowed three times non-consecutively so it will either be 6am, 12pm, 6pm or 9am, 3pm, 9pm.  I could always move up the 9am or move back the 6 pm feeding if I needed to go home.  She would just fed via her pump like normal.  I hope she does well and we continue to learn as we go.

It's a whole new world now.  We don't miss the beginning days but they did seem to move faster.  Now its just a waiting game.

Busy

The girls are now 6 lbs 7 oz.  They have been teetering around 0-10 gram difference between each other the last couple days.  Brynlee has yet to beat Josie for weight, but did equal her the other night.

We had the baby shower for the girls back on the 19th.  It was so great to see almost everyone I love be there for such a special time.  It took a few days to get everything put away and I still have some organizing to do, but its slowly getting there.  I think we have almost everything that we need for when the girls get to come home.

Brynlee tested her first bottle back on the 21st.  She did great and was able to get 7 mL.  She did drop her stats, so we stopped.  We waited and waited for her to be awake enough for the speech therapist to observe her in the following days and she never would be in the mood to eat when she was around.  She tried this morning and only took two sucks and decided she was done by dropping her oxygen and heart rate.

They took the girls off of vapotherm yesterday, but ended up putting Brynlee back on a cannula last night.  She kept dropping her stats and running lower in oxygen.  The cannula is straight from the wall and doesn't have the huge tubing attached, so its easier to get her out of bed.  It also goes down to .5 liters where vapotherm only goes to 1.0 liters for pressure.  Josie is still rocking on breathing on her own.  She surprises me all the time by making such big improvements so quickly!

The girls' eyes are looking better.  It sounded like Brynlee's retinopathy of prematurity was almost gone.  I am not sure how it works other than excessive blood vessels can grow - so maybe there isn't any additional vessels on this last exam since the previous exam?  Josie's is showing improvement from last time, so both girls will see her in two weeks.  It should be Brynlee's last time and hopefully next time they will say only one more time for Josie.  Wishful thinking doesn't hurt!

The girls had a hearing exam today that they passed.  I wasn't there for it, which I would have loved to see. :(

The girls had a head ultrasound last week.  Brynlee's was fine and Josie's showed a few issues.  They did a MRI for a closer look and it didn't show anything different than the ultrasound.  I still need to find out what exactly they found or if there will be follow-ups, since I kept missing the doctors regarding this.  It sounded similar to a light bruise and nothing major.

We found out a couple weeks ago that Josie has a paralyzed left vocal cord.  Our primary nurse and I were talking about the differences between the girls.  Somehow I brought up that she used to cry before her PDA surgery and no longer cries.  They had an ENT come in and he found the left vocal cord was paralyzed.  Luckily it is parallel with the other vocal cord so hopefully it will make up for it or maybe the nerves will regenerate/heal itself.  It's a waiting game on what all this injury will entail.  Her poor little cry is so quiet and raspy.  This also put a halt on nursing as it can affect her airway and make aspirating easier.  They wanted to do a swallow study on her before trying a bottle and nursing, but wanted to wait for her to mature a week or so.

Today we did the swallow study on Josie with breast milk, formula and formula with rice cereal.  She took a bottle with breast milk mixed with barium first.  She tried it three times as they imaged where it was going.  It was pooling and then going near her airway.  As she got to the third try and became more tired, it was getting closer to going down the wrong tube and did have a little aspiration.  Next they did 3 tries with formula, which is thicker; and then formula with rice cereal.  As she became more tired on the 3rd tries, it was entering her airway even with the rice cereal mixed in.  Her vocal cord and another flap is what keeps fluid from entering the opening and going into her lungs.  With chronic lung disease, it is even more risky to allow particles into the lungs to irritate them.  The speech therapist said she did great on the coordination for sucking, swallowing and breathing; but anatomically, she just can't take a bottle safely.  She thinks neurologically, she is fine, though.  At this point, we are looking at going the G tube route.  The issue isn't going to change anytime soon, so we can't really wait it out.  We can always revisit it all in a few months if we feel her voice is getting stronger, signalling that her vocal cords are strengthening, but at this time its about getting her home.  We have yet to hear what the neonatologist says since it came up pretty late in the day.  It looks like physical and occupational therapy will also go into play by working with positioning, tummy time, neck strength.  We may be allowed to do 5 mL to 10 mL once or twice a day depending on how much risk they think is there.  This would allow her to still have the taste, sensation, movement, etc.  She will need an upper GI scan and a digestive test for positioning and to see how she is digesting her food before they can put the G tube in.  It was quite the shocker and overwhelming today, so hopefully we get more answers and timelines in the next few days on what to expect.

Brynlee's swallow study should be coming up soon and she definitely has the vocal cords working.  She is a little quiet (which may be from smaller, immature lungs), but I think she is still trying to get the hang of breathing and eating as she matures.  She doesn't ever miss out on the chance to voice her opinion and grunt at you if she isn't liking something.

Now for fun stuff- pictures!

Josie

Brynlee

Brynlee

Brynlee's tongue appears frequently - usually in a not so peaceful expression!

Brynlee

Josie

Brynlee, Ty, Josie

Brynlee

Brynlee

Josie

Josie getting her face cleaned up

Can you see me better?

We are breathing on our own!  More updates to follow!

Big girls

The girls will be 35 weeks gestational tomorrow.  The girls received their two month immunizations today.  Brynlee appeared to be a little grumpy when we got there tonight.  I tried to help sooth her by holding her hands in close to her face and chest, holding her head in my hand and giving her a pacifier.  It seemed to work.  Ty held her while I held Josie.  Brynlee got pretty cranky towards the end and calmed down by holding onto his finger.  She sounds like a cat in a fight when she gets to crying.  Her foot also was vibrating to the vibration of her cry.  She probably doesn't think its funny that I think its cute.  Josie seemed to be pretty content in my arms.  She did fuss a little, but she tends to be a quieter of the two now.

Josie is 2 oz away from 5 lbs.  She is receiving Lasix for 3 days, so we may have a decrease in weight or slower weight gain the next couple days.  The girls' vapotherm was turned back up to 1.5 liters as they didn't tolerate the 1 liter very well (couldn't keep their oxygen up and would stop breathing a little more frequently).  They are now on 37 and 39 mL of food over 45 minutes and 30 minutes (down from 1 hour and 45 minutes).  Both girls are now receiving the same fortifier as of today.  This will be nice for when they go home, so we don't have 2 different formulas to add to their milk.  Brynlee also has ROP (retinopothy of prematurity), so both girls will continue to get their weekly eye exams.  The both also have chronic lung disease, which they have had for a while.  I have been trying to do some research to make sure we protect them from getting RSV and other illnesses due to their low immune system and under developed lungs. Nursing is going okay.  At this point, they aren't really getting much and its more skin to skin time they get next to me in the evenings.  I try to hold them against my chest the majority of the feeding, so they associate a fully tummy with me.

This is my second week back to work.  I still visit over lunch and head there after work until 7:30-8pm or so.  It's quite a juggle trying to do everything and right now everything seems to only get a small percentage of time and effort of what it really needs.

Link to see what premature babies lungs look like compared to full term.
RSV prevention letter

Brynlee

Josie

Josie

Brynlee

Josie