Crazy hair and Sleepy girl

Squeaky clean with wild hair after my bath. (Josie)

Brynlee in my arms and Josie on my lap.  Odd angle as taking photo myself.

(Post may look goofy since from my phone)

The best week!

The day after Christmas, I was able to kangaroo with both girls at the same time for the first time.  It was quite the handful, but wonderful.  Grammy and Grampy Beekman came for a visit with Uncle Nate on their way home.  Thank goodness the girls are so sweet or I would even be more jealous of Nate's frequent trips to Breckenridge, etc to go skiing!

I kangaroo held both girls at the same time the next day as well.  On the 28th, I only kangaroo held Brynlee.  She just seemed like she wanted her mama to herself.  The day before she was restless while I wad holding both of them and didn't get her vapotherm pressure turned down like her sister that day. Maybe mom just wanted to feel like Brynlee needed her alone bonding time more than she really did!! Ty held Josie all swaddled when he got there.  He even got the luck of changing a stinky diaper. :)  I told him she might need changed since the nurse was busy.  He stuck his nose right in the arm hole and got blown away by stink!  Poor Josie doesn't have a chance of hiding the stink with her iron supplement. 

Yesterday, I kangarooed Josie while Ty held Brynlee swaddled.  Uncle Josh and Aunt Katie came for a visit.  The girls were dressed in their matching Pjs that they received from the Folkmanns for Christmas.   Even the doctor commented how cute they were in them!

Today (great) Grandma Beekman came for a visit.  She had great timing as she was able to watch me learn and give baths to both girls.  Simple things like baths are so amazing for the first time.  I was able to reposition the girls to their backs from tummys, undress them, get their butts wiped down, carry them and place them in the tub and wash them.  After washing them, I was able to pick them up and dry them while holding them against me.  Both girls were wide awake and just stared at me as I dried them off and cuddled before putting them back.  After putting them back, I wiped them down with Aquaphor, put their diapers and sleepers on.  It may seem like nothing, but that is a lot of work and control compared to the normal occasional diaper changes and having them always placed in our arms to hold.  Just seeing them in my arms, held like a normal baby and being able to stare at each other with no cords (other than oxygen and feeding tube) or plexiglass in the way, was great.

After both girls were bathed, they both were swaddled and I got to hold them at the same time.  Josie fought going to sleep and wanted her new bigger pacifier held in the majority of the time and Brynlee was lights out with a few occasional coos and squirms.  I think I listen to their coos all day!

Things that made this week great:
- Girls' first Christmas
- Mom was able to hold them both at same time kangarooed and swaddled
- Saw a lot of family - met new ones too!
- Josie is now 4 lb 1.5 oz!!
- Josie is on 2 liters vapotherm and more food! (May be going to 1.5 liters soon!)
- Brynlee is 1.1 oz away from 4 lbs.  3 lb and 14.9 oz currently
- Brynlee is now at 2 liters vapotherm and doing great on food
- Both girls now wear sleepers and regulating temperatures well (isolettes are now set to air temp instead of body temp)

Things looking forward to:
- Hopefully in next week or two can try nuzzling and possibly nursing.
- More cuddle time - alone and with both girls together
- Condensing feeding down to 45 min for Brynlee and 30 min for Josie
- Reduced vapotherm setting for Josie; and Brynlee once she gets her current rate practiced
- Josie's ROP to not get worse.  (Found out she wasn't quite clear on her eye exam, like I thought. For now just monitoring weekly.)
- New year and getting closer to coming home
- Grandpa and Grandma Walker feeling better from the flu and coming for a visit!

Not looking forward to:
- Work!!  I go back in 2 short days

Merry Christmas!

We had a great Christmas!  Friday night was Christmas at Grandma and Grandpa Walker's.  Everyone was there except Michael, who was on a business trip.  Sunday was Christmas at Ty's parents.  And today we had Christmas with my dad's side of the family.  We visited the girls each of these days with a little bit of cuddle time most days.

Friday we put them in preemie Christmas sleepers and got them out to take their pictures together and with us.  Brynlee cried the whole time and sneezed in Josie's face.  Finally Josie opened her eyes slightly to see who it was in her face.  After we got done with pictures, we held them for a couple hours in their sleepers for the first time.  We have only done kangaroo holding before, so it was nice to actually cradle hold them.

Brynlee and Josie

Saturday afternoon they switched them over to vapotherm from CPAP so I was unable to hold either of them due to the large change.  They didn't do that well that night, so they increased the pressure and concentration slightly and they did much better.  Sunday we got there bright and early, so I could hold Brynlee (it was her turn) before we headed to Boone for lunch.  The girls has their pictures taken this night by a former NICU parent (CNicholl photography) who volunteered for The Preemie Project.  (The Preemie Project donates hats, booties, blankets to the NICUs in Iowa).

Yesterday, we got there around noon or 1 pm.  Supposedly they had been ringing off every 10 or 20 minutes up until we got there and then were fine once we arrived.  It's hard to say if its a coincidence or not.  We kangarooed both girls for 2-3 hours and talked with my dad and Marje, as they just got into town.   The CD with their pictures was waiting on the couch when we arrived, but we didn't have our computer.  Along with the CD were a few other gifts from previous NICU families.   Brynlee had a girl gingerbread hat and Josie had a Christmas tree hat in their beds that they used to take their pictures.  The first thing I did when we got home was look at the photos.  They turned out great considering all the equipment, cords, etc you have to wrangle!

Josie and Brynlee

Josie

Brynlee

Today we arrived at the NICU a little later than we wanted due to Ty having to fix my car.  The couch in our room was filled with little goodies from previous NICU families.  It was so heart warming to walk into that surprise and read all of the little stories attached to the gifts.  I would love to continue on with this next year in some form.  I want to write on each tag what they received and put the stories in with their baby books for when they get older.  The girls were dressed in their sleepers when we got there.  After they had a quick diaper change, we got them out for a quick family photo (and a few kisses from mom!).  We then headed to Ames for Christmas at (Great) Grandma Beekmans.

Christmas day

Brynlee smiling

Josie wide awake

The girls were definitely spoiled this year.  I think its going to take me a while to find homes for all of their presents and toys they have received!  It's great to know that when they come home, they have such great family members waiting for them!

The girls are almost 2 pounds over their birth weight.  Josie is 3 lbs 9 oz and Brynlee is 3 lbs 8 oz.

Snow day

Santa came today, despite the snow.  Hopefully I'll get the picture they took next to the beds soon since I just missed him.  He even brought them some useful goodies for when we get home! 

Today I cuddled with Josie and Ty with Brynlee.  Brynlee was a little of a fusser.  She could have been getting hungry.  She didn't tolerate all her food coming in over 1 hour yesterday so they expanded it go 1.5 hours.  Poor girl burped and then threw up her food yesterday.  Luckily I heard her so I could clean her up until the nurse was back from another room.  Josie loves her food but is being a little slower on breathing. Brynlee is doing great on breathing and keeping her oxygen up.

Picture below is of Josie and me.  I love hearing her suck her pacifier and wiggle and coo against me.  Everyday they are more and more awake.

3 pounds

Both girls are now 3 pounds (as of yesterday).  They turned down their cpap yesterday to the lowest setting it can go, which is great.  Their next step for breathing is vapotherm.
Today their feedings increased and now are bolus feedings.  They get their food over the course of one hour and have a break of 2 hours after that.  Previously they had their food given over two hours with one hour break.
Santa is coming tomorrow with some goodies for the kids and pizza for the parents.
One of the primary nurses snagged them some Christmas sleepers so we can take pictures. 
Sounds like they may be close to graduating to clothes and having to work to maintain their body temperature.  That will be a fun day, but they are cute with just diapers too.
Their eye exam went well.  It was for retinopathy of prematurity (ROP) rather than for vision.  It was pretty gruesome to watch as they pull back the skin around the eye and push their eye ball around to look at the development of blood vessels.  Josie was kicking and pretty mad, but both girls quickly forgot.

Six weeks

Six weeks old means only two more weeks home.  I don't even want to think how I will juggle everything with work included.  The days go way too fast as it is.
Josie is 3 lbs, 1 oz.
Brynlee is 2 lbs, 14 oz.
Great-grandma Katie and Great-aunt Kay came for their first visit.  The girls did some entertaining for them yesterday. 

Kicked Out

Today we were kicked out of the big twin room.  I guess that means we aren't as sick anymore.  That is a good thing but I definitely wasn't ready to move so quickly and without warning.   There were twins being born that needed the room more.

Josie managed to push her feeding tube out on the move.  And then later had her nasal prongs moved up and pushing into her eye.  No wonder her oxygen alarm kept ringing a little low.

Both girls are now on a feeding schedule of on for 2 hours and off 1 hour.  This gives them more food per hour during those 2 hours than they had previously. They will eventually wean them to normal spaced out feedings like a full term baby as they grow and tolerate the changes.

The picture is Josie getting ready to move after being kangarooed.

One month

The girls turned a month old on Tuesday, December 4th.

Josie was 2 lbs, 7.7 oz, 13.8 in.   Brynlee was 2 lbs, 3.9 oz, 13.4 in.
They started out at 1 lb 14.3 oz, 12.5 inches and 1 lb, 9.3 oz, 12.25 in.

I bought monkeys to take their picture with to document their size as they grow.  They make double chins look good!

Josie before

Josie now

Josie

Brynlee before

Brynlee now

Brynlee

Good Saturday

Snuggling with Brynlee for over 3 hours makes for a good Saturday night!

We are 2 lb 1.5 oz (Brynlee) and 2 lb 6.5 oz (Josie).  We are thinking a few explosive diapers caused the weight drop for Josie.  She was weighed 3 times at 2 different care times to make sure it was correct.

Over 2 lbs

Both girls are now over 2 pounds.  Josie is 2 lbs 10 oz and Brynlee is 1 lb .9 oz.  They both received Lasix yesterday, so I was surprised to see they both gained weight (especially Josie).  Lasix is supposed to relieve the extra fluid from their body (due to their kidneys being premature).  It helps reduce the pressure and extra work their lungs are doing trying to keep up.

Josie is on a nebulizer treatment.  This hopefully will ease her inflamed lungs and help her have less apnea and Brady episodes.  They just hook it up to her CPAP machine and she breathes it in during certain times of the day.  She is up to 9 mL/hour for 3 hours and 1 hour off.  Or 27 mL every 4 hours, which would be 1.826 tablespoons.

Brynlee is more laid back.  She is gaining weight - slowly.  It is nice to see her over the 2 lb mark.  She is at 7.5 mL/hour (1/2 tablespoon) every 3 hours with 1 hour off. 

Both girls are opening their eyes much more.  They also keep them open a longer period of time or until you shut their blankets to make them go back to sleep.  Josie typically gets hiccups about 1/2 hour after her cares, which could be stress from being moved around.  Josie stopped her TPN (IV nutrition) yesterday, so they took out her PICC line.  One less cord!

I'll try to take more pictures tomorrow!  Poor, sweet Brynlee has been left out lately!

Growing

Girls are doing great on feedings.  Josie is 2 lb 5 oz and Brynlee is 1 lb 15 oz.  They are both on 24 calorie formula to supplement their milk.  Brynlee is getting 7.2 mL and Josie 7 mL. Up from 6.9 and 6 yesterday.  Josie will be off of her IV nutrition tomorrow.
Apnea and Brady spells are still occurring at an expected amount due to their prematurity.  The nurse said it could take up until a year for their lungs to be as mature as a full term baby.  They are both more stable so labs are now spaced out to once and twice per week.  Some were daily and some were two times per week.
Tomorrow they will be 29 weeks gestational.  I love the growing but I wish I could slow down time!  Only one month left off from work.

3 weeks, 1 day old; 28 weeks 5 days CGA

The girls turned 3 weeks old on Sunday.  They are 28 weeks, 5 days for corrected gestational age.  Their weights are: 2 lb, 1.6 oz - Josie.  1 lb, 14.5 oz for Brynlee.  They were born at 1 lb 14 oz and 1 lb 9 oz.

Both girls are doing great on feedings.  Brynlee has remained on 6.9 mL every hour for 3 hours with 1 hour off.  Josie increased from 5 mL to 6 mL today for every 3 hours with 1 hour off.  She went off of lipids today and will go off her TPN (IV nutrition) tomorrow or the day after.  They also added 22 calorie formula to enhance the milk.  Brynlee has been on 24 calorie formula fortifier for a while.  The formula also contains extra protein and other nutrients.

They added the 22 calorie formula for Josie due to her having Osteopenia.  The doctor explained it as having brittle bones due to not having enough nutrition.  He said she would grow out of it in the next few weeks as she gets more milk and calories.

Both girls has their forced breaths on their vents turned down today.  They were very good at breathing while I was there today, which is great.  Josie is back off her phototherapy light and hopefully will stay that way with increased feedings.

Josie a couple days ago with her sunglasses ready for her phototherapy light

6 am wake up call

This morning, we received a call regarding Josie.  The nurse practitioner wanted to let us know she had a rough night and needed her vent settings changed.  She was having breathing issues during the night so they did lab draws to check for infection.  So far they have came back okay, but she is on antibiotics.
Brynlee is still doing good.  She slipped back on her breathing.  They turned back on forced breathing on the ventilator.

The doctor told us the breathing issue for Josie is most likely caused from increased feeding.  So I would assume the same issue for Brynlee.  She compared it to eating a Thanksgiving dinner every meal.
Josie had a new IV put in today. 

Ty and I were able to hold the girls on Thanksgiving.  I held squirmy Josie and he held laid back Brynlee.  The nurse even moved Brynlee's bed so Ty and Brynlee could watch football together.

Josie all laid back.

Cuddling

Cuddling with Brynlee

Feedings update

Brynlee is now on 1.9 mL per hour continuous feeding (previously 1 mL every hour).  She weighed 1 lb 10 oz today - over her birth weight by one ounce.

Little Brynlee

Josie was increased to 2 mL every 3 hours (from 1 mL every 6 hours), but she seemed to not be digesting her food.  They did an x-ray, which came back okay. They will give her an enema and see how she is after that to decide what to do on feedings.  Josie was at 2 lb at last night's weighing.  They gave her blood and will give her some Lasix tonight.  Sunday's night weighing will give us a more accurate weight once the Lasix has done it's job.  She has a little double chin right now!

Chunker Josie

Just last week Josie was looking tiny with Brynlee looking huge.  It's amazing what a little bit of fluid after surgery can do to tiny babies.

1 week old!

The girls were one week old on Sunday morning!  Time flies - especially with the holidays approaching!

Saturday was a good day for Brynlee.  Her Grandma Marje came to visit her.  She decided to open her eyes and keep them open for 45 minutes.  Finally the nurse had to cover her eyes so she would go to sleep and rest.  Previously, I had only seen her eyes a few seconds here and there.  I think she was showing off!

Josie had a good day.  She was a little cranky.  I was able to hold her legs still and hold her pacifier in her mouth until she calmed down.  She has been sliding backwards on her breathing.  She will have spells where she stops breathing and her heart rate drops.  If she doesn't bring it back up within 20 seconds, they rub her feet or back to remind her to breath.

Ty, Marje and I went out to eat Saturday night for a quick break before going back to the hospital one last time.  When we got back, they were taking Brynlee off her oscillator and put her on a CPAP.  She has been doing great since then.  Today they took the arterial line out of her belly button.  This means she can go to an isolette and get kangarooed.  (Which actually happend during the time I typed and pressed publish for this post!)

Josie had a rough morning with her breathing on Sunday.  Today they did an echo on Josie due to her breathing and now hearing a heart murmur.  They checked to see if she has PDA and needs it fixed via surgery or a drug called Indocin.  They also did a head ultrasound to make sure there was no bleeding issues.  The ultrasounds came back as having a moderate sized PDA and no brain bleeds.  They are going to try to do 3 rounds of Indocin (spaced out based on testing).  they started that tonight.

Last night, Tyler got to kangaroo Josie and tonight I was able to kangaroo Brynlee for the first time.  It seems like they are growing up so fast. 

Me and Brynlee tonight with Marje

Brynlee

Josie and her pacifier

Josie and Ty

 

Brynlee before oscillator removal

 

Brynlee with pacifier now that oscillator is gone

Brynlee showing sad eyes on Sunday after getting tube out of throat and new CPAP

 

Josie sleeping away

Tomorrow I'll try to get a good picture of Brynlee with her new bed and no sunglasses.  Up until now she has been on phototherapy with tubes and sunglasses blocking her whole face.  They are getting ready for Grandpa's first visit tomorrow!

PDA surgery

Surgery for Brynlee's PDA was on Friday.  They went in on her left side under her arm.  The procedure consisted of separating the ribs, moving her lung and 2 nerves, and then clamping the hole shut.  Here is a link about PDA.  The surgery didn't take long at all and was in her room.  After the surgery, she was sleeping the whole time I was there.  The nurses did say she opened her eyes a little.  Friday night they closely watched her levels and made sure she was continuing to pee.  I believe they gave her a little lasix to help out.  Her potassium levels were high, so she received nutrition with no potassium in it.

Josie was fussy all day.  Either she was liking to voice her opinion about her phototherapy lights coming back on or she had sympathy pain for Brynlee.  After going to bed late and waking up early, I was exhausted so I slept on the couch in the room for a couple hours.  When we left to go home for supper and a longer nap, the nurse promised to call if anything changed.  A couple hours later when we getting ready to eat, I got a call regarding Josie's PICC line.  It had gotten twisted so they had to remove it and place it on her head.  The nurse didn't want to break my trust by not calling, so had to call even for something minor like that.  When we got the hospital, she explained that she didn't want me walking in the room and seeing six people surrounding Josie and getting scared.  For now she looks like she has a little hat on her head.  They moved the PICC line, but are currently using the line in her head for blood (transfusions and testing).  

Tomorrow I will post pictures and give some more news regarding the girls from Saturday.

Surgery

Wednesday night at home went okay.  It was rough in the morning not having any pain medicine and having to get up to pump every couple hours.  Ty made 2 trips to Walgreens (they couldn't figure out my insurance and he forgot his phone) to try to get my prescriptions filled since Walmart didn't open for another hour and I was in quite a bit of pain.

We stopped to get new phones before heading the hospital.  I was a nervous wreck since my phone had just died and we had to wait our turn (which took forever).  All I could think about was something going wrong and only my number was written on the board in the girls' room.  Finally a customer left the service counter, so I was able to use their charger and get the scoop on what to get for a phone when it was finally our turn.

When we got to the hospital, it was pretty quiet.  Josie had a new blanket to cover her bed and keep it nice and dark.  Brynlee had just received her echo on her heart and also an x-ray on her lungs.  They are x-raying her lungs every 12 hours to make sure they aren't getting too stimulated from the oscillator.  The results from the echo weren't coming back until around 5pm.  Ty napped and I called to add them to insurance and played with my phone a little.  We went down to the home medical supply store to exchange something and waste a little time.  By the time we got back, the doctor was back with the results of Josie's echo on her heart.

The duct that normally closes a little later on had not closed.  It closes the two ventricles of the heart.  The doctor explained it as it being like a fire hydrant that is open and pushing out water, but still trying to use the water pressure in your home.  They were hoping it closed with the medicine she took to prevent brain bleeds, but it didn't happen.  We had the option of giving her more medicine, which could cause clotting issues, heart failure and other a whole line of other things; or surgery to clamp the opening.  We were told by the nurses and doctor that surgery is 2 hours prep work and 10 minutes actual surgery.  The doctor had been with Blank for 20 years and hadn't seen an issue and really felt this was the best way to go and hopefully will help her other issues.  We had been told about this issue a couple other times when they were going to do the echo and decided to wait due to issues.

Tomorrow morning, we are meeting with the surgeon and then having the surgery a little bit after that.  They will be doing it in their room as it's a sterile environment and doesn't require them to move everything.  I overheard a nurse offering to come in and take care of Brynlee so someone new didn't have to watch her with everything she is/will be going through tomorrow.  Waking up after surgery could take 2 hours to 24 hours.  The doctor thinks she is pretty fiesty so he could see her waking up in 2 hours.

Josie had a little bit of green residual on her feeding tube on Wednesday.  This means her stomach isn't tolerating breast milk very well.  I think they are holding off on it for a while.  The doctor said she is doing well and won't worry about doing a echo for her heart as it sounds good and can close on its own.  So unless anything changes with her, they won't do any ultrasounds.

Here are some pictures of Josie from today (click on them to make them bigger).  You can finally see her face without her sunglasses and her little furry back.  I'll have to get more pictures tomorrow or take the ones from Ty's phone for Brynlee.

Josie sleeping with pacifier

All curled up

Tummy time

Opening her eyes

 

 

 

Kangarooing and activities from 11/7

On Wednesday, Brynlee had a rough day with her blood pressure, breathing and heart rate.  They have her on Dopomine to keep the blood pressure regulated.  Once she is able to keep her blood pressure at a certain rate, they will wean her off of it.  She was supposed to have a echo on her heart but they postponed it due to everything going on that day.  They also gave her 1 mL (1/5 of a tablespoon) breastmilk, but she didn't take it very well.  Breast milk is supposed to have good bacteria in it to help with their stomachs, but their stomachs often can't handle it.  Both girls are on caffeine to help with remind them to breath.

Brynlee under her tent and blue phototherapy light

 

Brynlee getting her temperature taken

 

Josie had a pretty good day.  When we went to visit in the evening, the nurse had us help with her cares.  Cares are done every 4 hours (4 am, 8am, 12p, 4pm, 8pm, 12am).  Cares consist of taking their temperature, changing diapers, checking blood sugar, rubbing their body with Aquaphor and other items they may need taken care of).  They are done pretty quickly as to not overstimulate them.  I did the temperature and Ty and I both did changing of Josie's diaper.  Ty also took a little sponge and cleaned her mouth and cheeks.  It was pretty stressful helping and watching her heart rate increase.  I think I would rather just do the temperature and let the nurses do the rest because they are so quick!

Josie just done getting her blood sugar tested

Ty holding in Josie's pacifier

The girls had 3 visitors.  Our neighbors, Sarah and Krista, stopped by and so did Jen, my friend from work.  As we were doing the cares, Josie's nurse decided that she was doing well enough that she could probably switch to a new bed, an isolette.  After confirming with the doctor, she brought it in and allowed me to Kangaroo hold Josie while they switched everything out.  Kangaroo holding consists of skin to skin contact with the parent and the baby.  The new bed isolette creates a better environment for babies as its completely closed, temperature and humidity controlled.  Previously she was on a bed that had a warmer with a humidity tent.  Each time they would open the tent, it creates a breeze of colder air and you aren't able to keep it dark like the isolette. 

Josie's new bed

Kangaroo holding went well.  It was a little stressful as the monitor was above me so I couldn't keep checking her numbers to make sure she was okay.  The nurse left for a while and Ty left to let Jen out of the building and load the car, so I was all alone!

Kangarooing

After Josie was tucked in for the night, we went down the to maternity ward to officially check out.  I got my last dose of pain medicine before leaving at 10:00pm since I wouldn't be able to get my prescription filled until the morning.  Coming home was weird, it didn't feel like home.  It was the first time seeing my other girls, Mya and Allie, for 2 weeks. 

Mondays update delayed

Monday during the day we had aunt Abby come to visit.  Monday evening we had aunt Katie and uncle Josh visit.  Katie got a little teary eyed when seeing the girls.

I was able to hold Josie while they changed her sheets.  Her tiny diaper had moved and she peed on her fleece blanket.  I had just asked a few minutes earlier if I could touch her and they showed me how to apply constant pressure since their nerves are so sensitive/under developed.  Then they allowed me to hold her as two nurses arranged new bedding.  Maybe Josie knew what I wanted or what she wanted.  :)

Josie

Josie

Brynlee, our blonde haired girl, under her tent that holds humidity

Unfortunately, I didn't have my camera with me today when the nurse took off Josie's sunglasses so we could see her sweet face.  We saw her open her tiny eyes quite a bit.  The right one is still fused shut in couple places, but she is still able to open it.

Election Day

Being in at the hospital, I forgot what almost everyone else around the country was paying attention to for the day.  I did turn on the TV when I got back to my room, so I wasn't completely oblivious!

Here are a couple pictures to visualize how small the girls are.  They had quite a few visitors today: cousin Amy, (great) Grandma and (great) Grandpa Walker, (great) Grandma Beekman and my mom, who we can now also call Grandma or Grammy.

Amy and Brynlee

Us with Brynlee

Us with Josie

The girls did great today.  Josie is on a CPAP for breathing since yesterday morning.  Its set at room level concentration with level 7 for pressure.  It sounds they will reduce the pressure as she gets used to it and doesn't need the pressure to remind her to breath.  She also is getting 1 mL of breast milk every six hours.  Now that she doesn't have anything except for a tiny feeding tube down her throat, you can hear her cry.  She is not afraid to tell you when she is unhappy!  Tonight all it took was the nurses to adjust her legs and feet to be tighter to her body and she was happy.

Brynlee is on an oscillator for breathing.  This is a little less stressful than ventilator, from what I understand.  It basically keeps the lungs full of air and has tiny vibrations rather than inflating and deflating the lungs like a ventilator would.  Yesterday morning they were going to remove her tube from her throat and found blood.  She was having air loss into the tissue surrounding her lungs.  The neonatologist came down to my room to tell me about it as it could be life threatening and an issue.  They did ultrasounds on both babies brains to make sure there was no bleeding as lung issues and brain bleeds can be connected.  Luckily the ultrasounds came back looking good.  Ever since finding that out yesterday morning and putting her on the oscillator, Brynlee has been doing great.

Both girls are on phototherapy lights for their bilirubin.  Sounds like they will be under them for the next 5 days or so, but its nothing alarming.  I went back up to see them tonight and walked in to see a bright blue satellite looking light over Brynlee's bed.  It scared me, so I immediately went up the the nurse to ask if she was ok and what it was.  It was her new phototherapy light.  Earlier in the day when I asked why her phototherapy light hooked above her bed wasn't bright as Josie's, they found out some of her lights were out so it wasn't doing as good as it could have so they brought in the additional machine during the time I was gone. 

Tomorrow they are having echos, heart ultrasounds, to make sure certain valves are closed.  They both have received 3 installments of medicine to help close the valves that would normally close a little later in gestation.    If they aren't closed, it sounds like they would have a short surgery where they would go in and close it for them.  Brynlee is also getting an ultrasound again on her brain to make sure there is still no bleeding.

They both have received blood transfusions already, which is really common for preemies.  By the time they do all the testing on them, they need blood to fill them back up!  They only use O- blood and the candidates who provide the blood are screened for 2 years before they are allowed to donate to the NICU.  

The nurse Brynlee had tonight said she watched Brynlee on Sunday night and requested to be part of the team or group to provide the girls' care.  All the nurses and doctors are so caring, but its especially comforting to hear that someone asked to be part of the team to take care of our girls after just taking care them one time. She was so sweet giving her mouth swabs of steralized water with Q-tips to make sure her mouth wasn't dry, putting aquaphor on her lips and body to keep her moisturized.  I asked her about the Q-tips and she told me that because if her mouth was opened all day, it would be dry; so she thought Brynlee's would be too.

I meant for this to be short and sweet since I am a little tired tonight, but as I started writing, I didn't want to forget anything!

 

Thank you for your thoughts and prayers. Hopefully tomorrow is a good day like today and the honeymoon period they refer to continues even longer!

Tabitha