Sunday, another fun day!

Fantastic day today!  There were no changes for Scarlett at all today.  She was between 30-35% oxygen most of the day while we were there.  When she was on her back she needed a little more oxygen but its important that she moves around so she doesn't get any flat areas on her head.  She gained weight and is now up to 2 pounds 14 ounces!

Grayson had another episode this afternoon where he needed bagged.  The nurse said he "clamped down," and explained his lungs just closed down on him and 100% oxygen wouldn't help, so they need to go to the bag to help him out.  Otherwise his day was pretty good.  They moved his Breaths Per Minute rate to 35 from 40.  He spends most of the day breathing more often anyway, but this setting makes him take at least that many breaths.  He received his last antibiotics by IV today.  Tomorrow he will start taking them orally.  They hadn't weighed him yet today but he was 2 pounds 12 ounces last night.

He was a little on the warm side again today but they think there was a bed issue.  These isolettes monitor the babies temperature, then warm the bed up to keep them at the desired temperature.  His bed seemed to know what his temp was, but instead kept heating him up.  They manually changed the bed temperature to the lowest it would go and found another one to change him into.  We get the Cadillac of beds because our kids have a high risk of needing intubated.  The Giraffe Omnibed has a roof that will rise straight up about 4 feet.  The other isolettes have a fixed ceiling, but they all have sides that fold down.

Tomorrow will be a big day as we do the weekly ultrasounds on Grayson's head and Scarlett's heart.  I am praying that God will supernaturally heal them both.

The highlight of our day was the Kangaroo Care.  Our nurses today let us set up two chairs in Scarlett's "room" (read approximately 16 square feet of tile separated from her neighbors and the hallway by curtains).  Trish held our little man while I held our princess.  Her machine is very loud and sounds like a white noise machine, so it was still a little tough to carry a conversation, but was possible, as opposed to when one of us is on the opposite side of Grayson's isolette.

4 weeks old

We had a great day celebrating their 4th week of life.  We held both kids this evening.  I held Grayson and Trish held Scarlett.  We'd like to alternate but its hard to coordinate.  We can only get them out around their care times, which is 8 times/day.  Trying to line that up with our life and Trish's pumping schedule (that was redundant because that pretty much is her life, haha) can be tough.

Grayson broke his fever around noon today.  Thankfully he was showing his personality again this evening.  The nurse put him on his belly and twice he dug his feet in and raised himself in the air, arching his back.

Scarlett had a dose of laxics yesterday and is losing a lot of the puffiness.  Her XRay showed that her lungs were not as inflated as they were before, but she is compensating for it with her breathing.  Today, they were able to significantly ween her oxygen.  Most of the day she was around 30%, whereas the day before she spent most of the day in the 40s and even up to 50%.

Grayson with a pacifier and his neoguard holding his ET tube in place. 

Scarlett wearing her SiPAP setup.  They alternate between nost prongs (which she is wearing now) and the mask that goes over top of her nose.  The dark strap is a chinstrap so she doesn't lose pressure keeping her mouth open.

Friday Nov 28

This morning Grayson looked pretty pale.  He had 2 Brady Destats (where his heart rate and oxygen dropped) that were bad enough that they bagged him.  On one occasion, they were about to start chest compressions before his heart rate came back.  However, he did get his 5th dose of blood this evening and started looking and acting like the rascal we love!  Hopefully he keeps responding well to the antibiotics.  He had a big gain today and currently weighs 2 pounds 11 ounces.

Scarlett had a head ultrasound and Xray today.  I haven't heard what the XRay results were but the head ultrasound revealed no changes.  They weren't expecting anything different but wanted to be safe because of the meningitis.  The Xray was for her chest and abdomen because her oxygen levels have been very high (40-50%) for long periods of time.  Also she has looked pretty bloated.  She weighed in at 2 pounds 14 ounces.

Both kids had pretty loud murmers when the doc checked early this morning.

I held Grayson for 2 hours and Trish held Scarlett for over an hour.  The entire time Scarlett was being held she was "High Statting,"  By the time they were done, her oxygen was down to 36%.

Grayson and Scarlett are ready for The Game!

Thanksgiving Day

Short update today because I am tired.  We had a wonderful dinner with family but started and ended the day in the NICU.  Trish held Grayson this morning while I held Scarlett.  As happy as I was to be able to do that, a large part of me was sad that we were there.

Scarlett is still doing well on SiPAP!  She finished her run of antibiotics.  She may need another unit of blood tomorrow so the night nurse wasn't planning on taking her IV out, but soon enough!  They are going to do another head ultrasound tomorrow because of her Meningitis.  Normally they would wait until she is near term.  She is up to 1315 grams which is about 2 pounds 14 ounces.  She looks bigger but is also a little puffy.

One of Grayson's labs came back and unfortunately came up with another infection.  UGH!  This time it is a UTI, so he is back on antibiotics.  I guess I am happy that we found a reason for him to be behaving the way that he is but I am SO tired of the I word!

Happy Thanksgiving

Happy Thanksgiving!

Grayson:

Scarlett:

 Scarlett; the picture is grainy but I was trying to be fast so we could put her mask back on.

We don't have many updates today, but in honor of the holiday, I wanted to share some of our gratitude.  The past 3.5 weeks have been hard but it could of been impossible.

We are thankful for Grayson and Scarlett.  They don't do a whole lot but still they have little personalities that you can see in their faces.  They get annoyed and they get happy.  This week we heard them cry.  They were sad little whimpers and as much as I don't want them to be angry, I am thankful that they were well enough to cry!

We are thankful for our employers.  Trish has been at Oakstone for several years, and it warms my heart that they really are a part of our family.  There are so many people there that love her and our kids!  I started working for Fast Switch 2 months ago.  My boss let me start 2 business days after I accepted the offer so I could start Sept 30th and be on their insurance Oct. 1st.  I was worried about the doctor's appointments we would have.  Little did I know that we would be checking into the hospital before October was over.  I was excited to come work here for a guy that I had admired for many years, but I am pleasantly surprised to see how empathetic and accommodating he is.

We are thankful for the NICU and their staff.  Check out this article about the NICU.  As she mention, this place is hard, scary, noisy, overwhelming yet wonderful.  There are many daunting statistics surrounding our micro preemies that we can't dwell on. All I know is that without the NICU, they wouldn't be here today.

We are extremely thankful for our family and friends.  You have supported us physically and spiritually.  I am amazed at how many people have come along side us through this ordeal.  We have received gifts from strangers and heard from friends of friends across the world.  I know that God hears are prayers and is here with us!

Lastly, we are thankful for our relationship with God. At 20 years old I made the decision to accept Jesus Christ as my personal savior, and would love to share that story with you one day.  But what happened that day is God came to live inside of me.  Without Him, I would be a broken down mess.  Don't get me wrong, there have been nights where I lay in bed sobbing uncontrollably, worried that my phone will ring and a Nurse Practitioner will be on the other side, informing me they are doing CPR but are past the point they believe it will make a difference.  BUT God is the ultimate healer and comforter.  Romans 8:28 promises that God will work this situation for the good.  Selfishly I hope it is a miraculous situation and I can come along other parents showing pictures of my twins who played sports, made honor roll, married someone that we love, bought houses, had kids of their own,,,,,,  but if my journey is harder, I will lean on him to be my comfort and strength!

UPDATES:

Scarlett's temperature was lower today so she is being monitored closely, but so far the labs are not showing anything we should be concerned with.  She had a large gain today and is up to 2 pounds, 13 ounces!

Grayson started getting apneic last night.  This morning he had a couple spells in a row that the nurse couldn't bring him back from so he was intubated again around 10am.  He was doing pretty well this afternoon/evening, but is much more lethargic than normal.  They are running labs on him to see if it could be an infection.  Its not uncommon for someone in his condition to go back and forth, and the good news is he has a bigger tube now so there is less of an air leak.

The day I held Scarlett

Grayson had a good day today.  He wasn't weighed today but was 2 pounds 5 ounces last night.  He remains on the CPAP, even though he did give us a couple scares today where he decided to stop breathing.  The nurses were able to stem him each time but I worry that it will happen at a time that no one is around.  I am confident that would not be the case because the staff at our NICU is amazing!

Scarlett's day was much more tempestuous as she had our emotions bouncing around all over the place.  Early this morning, they changed her Mean Airway Pressure on the Oscilaltor to 10.5 GOOD! but noticed her temperatures were running high.  BAD!  They decided to change her bed to see if that was contributing to the readings or if she was really feverish.  This opened the door for Kangaroo Care!  GREAT!  So Trish held her on the Oscillator for the second time, and this time lasted more than an hour!!!  However, early this afternoon they were drawing blood to run labs and see if they can figure out why her temperature was high.  She became agitated which led to her needing her mouth suctioned.  While the nurse was doing that, Scarlett coughed and somehow extubated herself.  VERY BAD.  They kept her breathing using the bag for a while before decided to try her on the SiPAP around 4:30 this afternoon.  They called us to let us know just after 5pm.  I swear my heart stopped for a couple seconds as I listened in to Trish's phone and heard, "Trish, its Mary Beth from the Riverside NICU.  Everything is OK..." I missed the next couple words because I was catching my breath but she explained what happened.  We were discussing dinner plans and Trish was about to do her motherly duty and pump, but instead we jumped in the car and headed to the hospital.

When we arrived, she was there, on the same machine as brother!  GREAT!  She was still pretty stressed from the ordeal so Trish did hand containment with her to calm her down.  She had a chest X-ray done around 8pm and her lungs looked well inflated, and she didn't see any PIE!  GREAT!  Shortly after that, I was able to hold my baby girl for the first time!!!!!!!!!!!!!!  I held her for about 2 hours before the fatigue started settling in.

Scarlett

 Trish holding Scarlett

Close-up of Trish holding Scarlett

Holdling my daughter

29 weeks

Today the twins are 29 weeks "corrected.'  We are still getting emails from "What to Expect" every week and it would be comical if it wasn't so heartbreaking.  When I can bring myself to open the messages and read how big the babies are supposed to be and what is being developed I am amazed that I have bona fide human beings.

Scarlett had her PICC removed today.  They tried to adjust it but couldn't get it to settle in the right place.  Hopefully she'll finish her antibiotics on Thursday night and won't need any more IV fluids.  In the meantime, she will get them through a tradtional IV, so hopefully her IV site(s) and veigns will hold up so she won't need poked too often.  There was some confusion about her echo results, but it sounds like her PDA has not gotten worse.  It is either better or the same, but i will take that!  Otherwise nothing else really changed for her today.

We took turns holding Grayson again for a total of 3 hours.  It's hard to go longer because of their "care" times when the nurses need to get in with them to inspect them and change their diaper.  He is still on SiPAP and has had some periods where he struggled, but we are hoping he keeps pushing through.  The biggest news today was his head ultrasound.  The good news is that his brain bleeds have not become worse.  The blood has not absorbed yet but there is not more bleeding. Unfortunately they diagnosed him with an encephalomalacia on his left side.  This is a softening of his brain matter.  The outcome of the condition can be tragic but medicine still doesn't understand the human brain so it is possible that a few years from now he could run around without any symptoms.

Thank you for your prayers!

SiPap Success

As I entered the NICU this morning, I felt like a young child on Christmas morning, hopeful that Grayson would still be on the SiPAP but trying to temper my expectations.  I arrived at our area and peered behind the curtain to see we WERE STILL ON IT!  The nurse said he seemed to need higher oxygen (55%) over night, but she seemed to have him in a position where he was really comfortable and had his oxygen down to 37%.  He stayed on it all day and this evening, we were able to hear him cry a little bit.  The ET tubes sit on their vocal cords and do not allow them to make noise, so we were very excited to hear him whimper, even though it was a pretty pathetic attempt!  We ended our night with Trish holding him for about 2 hours then transitioning him to me when she needed to pump for about another hour.

Scarlett's day was mundane but they did change her Mean Airway Pressure down to 11 from 11.5.  The highest MAP on the CPAP/SiPAP machine is 8, so our goal is to get her there.  Tomorrow will be a big day for her as she will get a new Echo done to see if her PDA and/or heart has changed at all.  Grayson will get his brain scan tomorrow too.
 

Grayson without his mask.

Scarlett smiling.

Grayson holding my hand.  Based on his eyes I believe he is thinking "Dad!  Dad!  Do you see what is happening here?  This blue octopus creature keeps touching me!!!"

3 weeks

3 weeks?  3 weeks!  3 weeks...

The past 21 days have felt like multiple years, but also feels like a few hours.  I can't believe how much I've learned, although I wish I was blissfully ignorant ;-)  But I also can't believe how much I've loved.  These kids haven't done anything but fight for their life (and stress me out in the process), but my heart breaks every time I leave them.

Neither kid gained weight today, probably because of the laxis.  Scarlett had a minor change on her vent, having her Mean Airway Pressure lowered to 11.5 from 12.  Otherwise her day was thankfully uneventful.

Grayson spent most of his day being weened on his vent to be ready for the SiPAP, and around 5:30pm, made the switch!  He wasn't as excited about it as we were, and doesn't seem to like the tubing in his nose, but otherwise is doing OK.


Here are pics of Grayson's SiPAP mask and machine:

Friday Try Day

NICUs are an interesting place.  We have a team of awesome nurses, practitioners, doctors, social workers, respiratory therapists, nutritionists, occupational therapists, and others.  Unfortunately, all the babies in the NICU require care 24 hours/day, 7 days/week, 365 days/year.  Most of the staff works three 12 hour shifts/week so it is almost impossible to have a consistent "Continuity of Care." 

This is the largest reason why parents should be involved in their kids care, especially when they are more critical.  I see myself as the person responsible for their care, even though I don't get to make many of the decisions. 

This is also why Primary nurses are so important.  Primary nurses have "dibs" on a patient, so they will work with the same kids every time they are on.

The toughest part of the deal is the doctors.  They work three days in a row, and then you don't see them again for a long time (I'm still not 100% sure of the rotation).  For instance, Doctor 1 started our week with an idea of "Plan A" for Scarlett's PDA based on what we expected to see on Monday morning's X-Rays.  We saw what we expected on Monday morning, but Doctor 2 had started their three day rotation that day and in their mind, that plan wasn't worth trying.  Then on Thursday, Doctor 3 came on and wasnted to try Plan A again!  The good news is that this doctor has already made an effort to talk to the next doctor to make sure they are on the same page (probably because I brought this situation up on Thursday).

With all that said, I really like this doctors approach in a number of areas.  He would like to get the kids off the ventilators ASAP so they don't end up with chronic lung issues.  We changed Grayson's pressure setting and might try him on the SIPAP tomorrow if he does well overnight.  We are also trying Grayson on LASIKS which is a diuretic and we are hoping will  help clear out the haziness in his lungs.

Scarlett is also getting treated with LASIKS but in her case it is to help her PDA.  Her echo showed that her left atrium is slightly enlarged, so we need to get the duct closed ASAP before it causes a bigger issue.  Its a tough situation with her taking antibiotics right now, because one of the best ways to treat it is limiting fluids.  Our hope is the LASIKS fix it, but if not, we may be talking surgery :-/

The only other update is we are talking about a steroid treatment for both of them to help their lungs.  If we can't get them off ventilators soon that will probably be the next step.

Coming down off the IV Tower

Grayson had a huge day today!  His PICC line was taken out around 4ish but then Trish did Kangaroo Care from 6-9pm!  It was our longest skin-to-skin session to date.  His breathing tube placement is tricky so we needed nurse help a couple times, but when he wasn't moving his head and causing himself to destat he was loving it!  They want to get him off the ventilator ASAP so they ordered an X-ray for tomorrow to see his lungs, but decided to move his settings down to 25 Breaths Per Minute.  Grayson spends most of his time "breathing over the vent" or taking in extra breaths, but if he gets tired, the machine will make sure he gets 25 breaths.  I am praying that his lungs look good enough that we can ween the pressure settings down and get him on a CPAP.  The longer the babies stay on ventilators the more likely they will have respiratory issues later on in life.  Also, he gained some weight today and was up to 2 pounds 9 ounces!

Scarlett's day was more stable.  The X-ray revealed her PICC is in a good position now.  Her most recent blood cultures remain negative.  Her current X-rays show her left lung more dense so she is back to laying with her left side down.  She spent a couple days on her other side as they try to position her on her most affected side.

In "Care Time" some of the nurses let me lift the babies off the bed.  The bed has a built in scale that zeroes itself and then tells us the weight once we replace the baby.

Hopefully, we are all done with his IV tower for Grayson.  They took out his PICC because they don't need to run any IVs or antibiotics.  We unplugged it and were able to move it out of the way.

Wednesday

Sign you see when walking into the NICU

Another good day today.  The highlight was Scarlett coming off her oscillator... for another oscillator.  The one she was on was not correlating well and seemed to be changing the oxygen levels on its own.  She currently weighs 2 pounds, 7 ounces and is eating 16 mls of breastmilk per feeding.  We kept hearing that they would increase the feeds quickly and they were not lying.  Her chest X-rays are improving but she still has a lot of dense areas, now more on her right side.  The last time they checked, her blood culture from the 17th was still negative.

Grayson is now up to 2 pounds, 6 ounces and is also taking in 16 mls.  They decreased the Breaths per Minute setting on the vent to 30 and for most of the time I could see he was still breathing over it!  He had his last antibiotics this morning and should get his PICC line out tomorrow!

28.1 or 2.3

Today was a good day!  It was mostly uneventful and most of the updates are positive.

They are discussing moving Grayson to a CPAP.  Of course, because you can never trust a preemie, he started relying on the vent a lot more.  This morning they had to give him a little more pressure, but if he extubates himself they will probably try the CPAP.  Otherwise, we will just hope he keeps doing well enough that they can plan the transition.  We think one of the biggest issues for him is that his tube is not quite large enough, so there is space around it they call a "leak."  It sounds like he is snoring and we don't know how much of the pressure and oxygen is really making it into his lungs.  But the next size up may be too big for him and could possibly damage his vocal cords, but if he goes on the CPAP, there is no tube into his lungs.

They are running the culture on his spinal fluid but it looked clean at first glance!

The doctor confirmed his head ultrasounds were not changed.

Grayson is moving to complete breast milk with fortifications and is finishing his final IV of "Total Parental Nutrition" (TPN).  Because our babies spent the first 2-ish weeks eating 2 mls of breast milk, they weren't getting most of their nutrition from their food. They analyzed their blood and gave them all the nutrients they needed through an IV.

He will also finish his antibiotics at 4 am, so unless something changes, he should have his PICC line taken out on Thursday.  PICC lines are similar to IVs but thread through the vein to the heart.  They are more durable then IVs so they last much longer.

Scarlett's PICC situation is trickier.  They took hers out when her blood tested positive for E coli because bacteria can stick to the plastic.  They had the team come in to put a new one in yesterday, then 30 minutes later found out her 11/14 blood culture was growing E coli still.  Because a normal IV line goes bad so quickly, they are hoping to leave it in, but if the 11/17 culture also tests positive they will need to take it out.  Based on the other cultures, we should know on Wednesday.  To complicate things, her PICC wasn't positioned where they wanted it.  They tried to make a few minor adjustments, but it takes a specially trained person to really move it.  Based on the blood culture they will either remove it or fix it tomorrow.  Ideally she would have a PICC through her antibiotic treatment, which would finish 14 days from when the blood was drawn from a negative culture (Dec 1st if the 11/17 blood culture remains negative).

The doctor did tell us her PDA has grown.  This condition is pretty typical in preemies and they won't do anything with it right now.  If it doesn't fix itself though, she will require surgery.

Scarlett was slightly ahead of Grayson on the diet plan, so she was already off TPN today.  However her milk wasn't fortified until late today.  Being on less fluids could help the PDA close.

Grayson doing Kangaroo Care with me:

Scarlett with a big yawn:

Eyes Open

We are thankful for another day of the status quo.  Today's win is that both kids seemed to be stooling regularly!  What parent gets happy about their kids poop, haha?!?!  Otherwise, there are no other changes to report.

The results of Scarlett's echocardiagram came back, and she still has the PDA and PFO.  Grayson's head ultrasound revealed he still has Grade 3 and 4 IVH.  We are very grateful that neither situations digressed!  At rounds, we had a new doctor who we will have through Wednesday.  She said that we won't be able to treat Scarlett's heart with medication any longer, so if we decide we need to take action she will require surgery.  However, yesterday's doctor didn't take that option so I don't know what to think...  

Scarlett's spinal fluid labs have not shown bacteria, but based on the evidence at hand they are saying she has Meningitis.  I don't know if its an official diagnosis or not, but the treatment plan is to take blood daily, and give her antibiotics for 14 days from a negative blood culture.  Her most recent blood culture was taken on the 14th and today tested positive :-/

This new doctor decided to draw spinal fluid from Grayson to see if he also has/had Meningitis.  Even though his blood cultures have come back negative, they shared the same womb and they found E coli in their placentas.  I protested some, and asked if we could treat him with 14 days of antibiotics to be safe, without drawing spinal fluid.  The doctor said she was going to try, but if she had trouble, she would go with that plan.  I'm not sure if I should have put my foot down or not. I guess its better to know than not know, and this doctor didn't seem like she cared if I consented.  And the bottom line is its done now...

Their other health issues are hindering their breathing so we have not been able to make any adjustments on the ventilator over the last couple days so there has not been any progress there.

Trish did Kangaroo Care with Grayson for about 90 minutes.  I had the chance to get more involved in their Care and Feeding times, learning how to "clean" their eyes, which is basically just wiping it down from the nose out.  I can add that to my repertoire of changing their diapers (harder than you think trying to reach into those portlets with these tiny diapers and all the wires!) and cleaning their mouths.

We were able to get pictures of both kiddoes with their eyes open!

Grayson:

Scarlett:

28 Weeks

We have nothing significant to report today.  Yay!  By the time I publish this, our twins will be 28 weeks old corrected.

The most eventful part of our day was this evening.  Scarlett needed a new IV and it took a couple tries on her hand and then her foot which really upset her.  They had to have her oxygen turned up as high as it would go, but then re-positioned her and she settled down.  Trish and I had left the hospital for a few hours, and walked in at the tail end of the event.  We turned the corner and there were 6 nurses at her bedside.  As much as I wanted it to be because they were peering at how cute she was, I walked over to the group, mustered up as much courage as I could, and said, "What's up?"

With her evening being so stressful, we had to stay hands off the rest of the evening.

The best news of the day is it seems Grayson is stooling regularly.  Scarlett hasn't stooled since 11/12 but seems to be digesting well so no one is concerned yet, and we hope the increased feedings will help that process.  They are both at 9 mls now.  1 Teaspoon is 5mls.

Tomorrow will be a big day for them with Grayson getting a follow-up head ultrasound and Scarlett getting a follow up echocardiagram.  There seems to be plenty of evidence that her PDA has become larger such as pulse readings and a loud heart murmur.

Grayson:

Scarlett:

2 Weeks

Today was awesome.  Not in the over-used way either.  I sat in a chair holding my son for at least 90 minutes, marveling at how small he is, staring at his face and occasionally into his eyes, letting my mind meditate on the moment, and not worried at all about tomorrow.  The only time I let something else captivate my attention is when Trish was getting Scarlett out to hold.  That's right, Scarlett was held by her mother tonight!

I want to share this back-story in hope that other micro-preemie parents may stumble across these pages some day.  The twins are 27 weeks 5 days corrected.  Yesterday, her blood culture came back after 48 hours showing it contains E coli.  The put a needle in her back and took spinal fluid to analyze to see if it contains bacteria. We most likely won't hear on that culture until tomorrow night, but they did not see bacteria present when they examined it under the microscope.  However, due to the levels of white blood cells, sugar, and protein in her fluid, they are going to treat her as if she had meningitis.  It is very possible that the tests don't find anything even if it was there because she has already been on antibiotics.  Last night, I researched "Bacteria in the Blood" and Meningitis (which I highly recommend against for those that are reading this to follow our story), and learned that this can have some very serious consequences.  There are many documented benefits to Kangaroo Care citing babies do better when they have more skin-to-skin contact.  However, their first week the hospital staff was more concerned about getting infections in their umbilical lines and since then Scarlett has been on the High Frequency Oscillator.  They don't like to do KC on the Oscillators.  I have asked around to try and get the specifics, and I think the reasons include:

1. They've never done it before.  Not a good enough reason for me.
2. Babies on Oscillators are generally too sick to "jostle" around.  Wouldn't they benefit the most?
3. The tubing from the Oscillator to the Trach Tube is much shorter and less flexible then the conventional ventilator.  We'll be flexible.  In this case Trish sat in a desk /swivel chair instead of the more comfortable chairs so she could be higher up.
4. The change in pressure to Scarlett's lungs if her tube were to come out could be very harmful.  Valid concern, and unfortunately this has already happened twice.  Lets be very careful.

Maybe I offer a fresh perspective.  Maybe 99/100 nurses will read this and slap their foreheads because of my ignorance.

Once the doctor shared that Scarlett may have/had Meningitis and would be treating her as such, I asked if Mom could Kangaroo today.  I was ready with a rebuttal for every objection I could think of, but the doctor said, "We should be able to do that."  Wow!  So at 9pm, Scarlett was held by her mother for the first time!  She lasted about 45 minutes before she was consistently destatting and letting us know that it was time for her to go back into the Isolette.

Grayson:

Scarlett:

Grateful for today

Today, a young man named Liam left this earth for Heaven.  I can't imagine how hard it is for my buddy Justin, his wife Katie, their older son or the rest of their family to deal with this.  I am truly grateful for ever day with my tiny miracles.

Trish was able to hold Grayson again today.  He was not on lights so the kangaroo care lasted about 90 minutes.  They identified bacteria in his throat culture as staph and E coli.  They were able to put him on antibiotics that would treat these specifically.

Scarlett had a busy day today.  Her tube culture also showed E coli so she was put on a new antibiotic.  The liver ultrasound that was conducted yesterday only had her right side, so they wanted to see her left side.  She also had an X-Ray done to see her tube placement and condition of her lungs.  She also had blood drawn which needed two pokes.  The worst part of her day was getting spinal fluid drawn.  I wasn't able to be in the area but from what I heard, she did great.  What makes it bad is the reason it was drawn.  Her blood culture showed bacteria :-(  When I asked the doctor what we should be worried about, she said first we should worry about whether it is in her spinal fluid.  I don't want to share "out loud" what kinds of consequences that could lead to.  So right now, please pray that the bacteria is not in the spinal fluid and that the antibiotics quickly take it out of her blood.

Looks like they put Grayson's "glasses" on his turkey hat:

With all the attention sister needed, we only took 1 picture of Grayson today:

And here are all the pictures of my little princess:

Day 12

Today was a good day!  Trish was able to hold Grayson for 1 hour 45 minutes and clean his dirty diaper!  He was off the phototherapy today so he could do go as long as wanted.  Trish also picked Grayson up out of his bed and put him back into the bed.  Little things that we never thought about are now celebrated events and make us feel like parents.

Another piece of good news is that Scarlett had a huge bowel movement over night.  Hopefully both kids will be regular from here on out.  She also move up to 4ml feeding today as she lags brother by about a day.  He moved up to 7mls.  Chances are good that Grayson will need blood again soon so she will hopefully catch up then!

The lab results came back from their throat tube cultures and Grayon has an infection.  They need to continue the tests to see what bacteria it is but will plan on keeping both kids on anti-biotics.  Scarlett's C-RP numbers came down significantly to a number we would like to see but we are going to assume they both have infections unless we find out differently.

Lastly, the doctor decided to do an ultrasound on Scarlett's liver.  She said no one else seemed to pick up on it, but her liver looked a little strange and enlarged.  We should get those results tomorrow.

I am incredibly thankful for the staff we have taking care of them.  Many of these checks are done very early and they catch things before they get bad.

Hump Day

On the way in, we told ourselves we wouldn't stay late.  We want to spend time with our kids but we also want to go to bed at a decent time and possibly do an errand or chore even.  We've said this multiple times before, but typically its still after 11pm when we leave.  Today it was close to midnight.  If you've never had a NICU baby, you might find it surprising to learn they are on a very strict schedule.  Ours get "care" every 3 hours.  Care includes feeding, changing diaper, oral care, suctioning their lungs and mouth to get "goobers" repositioning sensors and anything else they may need to do.  Logistical issues prevented Trish from doing Kangaroo Care until the 10pm care but was supposed to be limited to 1 hour.  When that time came though, Scarlett was hogging all the attention, because shortly before 10, her neo-bar came off her face and the intubation tube was pulled out, essentially extubating herself.  I was sitting in a chair talking with Trish when the alarm sounded and showed her having a bradycardia and a destat (her heart beat slowing down significantly, in her case from around 155 to 60 or 80s AND her oxygen levels dipping).  I don't remember what her exact numbers were because I've learned that its OK to panic when both alarms are going off, so I jumped up and moved to her area.  Unfortunately, these episodes have become a little old hat for me, so I asked if I could stay by her side and when the nurse said it was up to me, I knew I was ready for it.  I did my best to cheer her on and coach her up to stay strong and to be a big girl and breathe for me.  There was an entire team in there, including the NNP (Neonatal Nurse Practioner), Respiratory Therapist, Scarlett's nurse, and 2 other nurses.  One of those nurses roles was to record the event, what time things happened. Afterwards, the nurse showed me where these events matched up with her heart rate and oxygen levels.  She did AWESOME!  After the extubation, she quickly rebounded to an oxygen level more than 85 and stayed like that through the whole process until she was reintubated.

The only other news from today is that Scarlett is showing signs of an infection.  Her white blood and immature cells are elevated, and her CRP levels are really high.  They are doing a blood culture but put both babies on more antibiotics.

Here is a pic where Trish held Grayon tonight:

 And here is a picture the nurses took of him wearing a hat that one of the nurses made:

And here is a picture of Scarlett wearing a second hat:

Veteran's Day

It's hard to keep the days straight anymore.  Today seems more like Day 11 than it does Tuesday or Veteran's Day.  After digesting yesterday's news we decided to spend most of the day in the NICU today.  When we arrived, Scarlett was on the High Frequency Oscillator again.  She didn't tolerate the vent settings last night so they had to change out the machines.  Grayson was back under the Phototherapy light for his billirubin levels (8.8).  We weren't able to hold either of them today :-/

At Rounds, I asked the doctor which baby we should worry about more.  She replied, "Both.  Your babies are both extremely fragile.  They are having different issues but you should worry about them equally."

In times like this, I lean on God who made promises such as:

Do not fear, for I am with you; Do not anxiously look about you, for I am your God.  I will strengthen you, surely I will help you, Surely I will uphold you with My righteous right hand. - Isaiah 41:10

They both had echocardiograms conducted today to look for PDA - Patent Ductus Arteriosus, In the womb, babies have a blood vessel connecting the two major arteries connected to the heart (aorta and pulmonary).  Typically, this duct closes shortly after birth, but when it doesn't it is called PDA.  It is a fairly common issue.  Both kids had very small openings left.  Technically Grayson's is smaller but neither of them are very concerning to the doctors.

We left them in great hands as they both have their Primary Nurses tonight, Kristy (Grayson) and  Kelsey (Scarlett).  At the time we left, there were some concerns about Scarlett's blood pressure, 55/18.  They were OK with the mean, but did not like how far apart those numbers are.

Here are pics from today.  Grayson hanging out under the lights:

Trish doing hand containment with Scarlett:

And here is a video from yesterday with Grayson's eyes wide open and sucking on the tube:

Never Trust a Preemie

Earlier today I read a blog where a woman recounted her doctor always said "Never trust a preemie," and recount scenarios where kids had very easy NICU stays but had significant issues the rest of their life, then others who had challenging issues but went on to live completely typical lives.

Yesterday we had our family baby shower.  It was such a joy to see everyone!  Before that, Trish and I were in the NICU before the shower and Trish was able to do Kangaroo Care with Grayson!  This activity is where the baby has skin on skin contact.  Check the video out here:

You will notice that they taped his tubes to make sure they don't move.  They both did fantastic!  Later that night I was able to hold him!  We both held him this evening again too!

At Sunday rounds, they laid out a plan to get Scarlett on a normal vent.  That plan was escalated today when the nurse noticed her guard had shifted on her face.  When they tried to reposition it, the tube came out.  They bagged her and decided to reintubate her and put her on the normal vent.  She was doing pretty well after that, but the nurses are only doing 4 "hands-on" cares per day with her because she does not like being jostled and her stats dip when they are messing with her.  I decided to try hand containment, and watched her stats rise until the alarms were dinging the she was above the alarm limits (95) for O2!

The team did head ultrasounds last night, and unfortunately Grayson has a grade 3 IVH, Intraventricular Hemmorrhage (brain bleed) on his left side and a grade 4 on his right.  Scarlett's scans were clear.  Preemies who have these conditions have significantly greater chances of physical and psychological issues including Cerebral Palsy and ADHD.  Just when I started to trust him....

We know that God has a plan but this is the most afraid I have been since the morning they were born.  I trust Him and pray that he heals them both super naturally  I would also ask for prayers for Trish and I, to stay close to God and feel his comfort.

Sunday, fun day

Today was a great day!  Trish and I just came home from the NICU.  I'm worn out and don't want to leave anything out, so I will tell you all about it tomorrow.  In the meantime, please pray for Scarlett's lungs.  They don't seem to be getting stronger and she has struggled breathing/absorbing oxygen all weekend.  Otherwise, everything is awesome and I can't wait to share tomorrow!

1 Week Old

26.5 weeks gestation (the .5 is five days, not half).  Today was a good day, although Scarlett decided to stress us out for the first 90 minutes or so.  The NICU team was trying to wean the kiddoes off of the high frequency oscillator.  Around 9:30am Scarlett was consistently "destatting" or registering oxygen levels in the range of mid-60s to mid-70s or less.  We want those numbers to be between 80-95.  I can't remember a time I've ever been so frustrated, frightened, and angry.  I asked the nurse if Scarlett's tube could have moved.  The oxygen mixture she was breathing in was in the mid 50s or 60s (which was already among the highest I've seen her on) but she was still destatting.  This particular nurse was the coldest personality I've met at Riverside to date.  I am sure she is a great person and fantastic nurse, but was not feeling it at the moment.  She later told the Nurse Practioner that she only says "Morning" because there's no such thing as a "Good Morning," so maybe at that point she was still having the grumpies.  Honestly, I don't know how a non-morning person could survive starting at 7am without being allowed to drink coffee at their "desk."  Anyway, she said "No, the tube is in the right position" and seemed to ignore my panic.  I decided to do "Hand Containment" where you reach in, and firmly hold them.  I tucked her legs in to try and simulate how she would be positioned in the womb.  It didn't help at all and the nurse sort of spit at me that Scarlett doesn't like being messed with.  Like a kid caught breaking the rules in school, I sheepishly pulled my hands out and closed the portlets.  A minute later, the nurse goes in and starts suctioning her mouth, then adjusting other things on her body.  I realize how immature it is, but I couldn't help but resent the fact that this woman who knew my daughter for 2.5 hours was slapping my hand out of the candy jar while scooping out delicious, soft, chocolate chunk cookies.  Did she not know that I've been there for hours at a time, multiple times a day this past week?  How did she not hear how annoying I've been, pestering the doctors, nurse practitioners, respiratory therapists, and innocent bystanders with question after question?  No, I've never held, fed, or burped my child but I know her.  This isn't normal for my child.  Something needs to be changed, and it needs to be changed now because I'm freaking out!  Well, I didn't say any of that, I just tried to pray and remember to breathe, and paced, and looked around to see who I could call over if things became worse.  But nothing changed.  Eventually the team came through doing rounds.  We went over Grayson first and because of that we were standing in his "room" (I'll describe the space another day and you will know why I used quotes).  Once they were done, I suggested we move next door for Scarlett's rundown.  A couple people said, "That's OK, we can stay here to make it easy on mom."  I replied, "No, I think the nurse needs to be involved.  Scarlett's been destatting all morning so the nurse is more important this morning."  I felt vindicated when the doctor and nurse practitioner asked the nurse if that was correct with concerned looks on their faces, then ordered an x-ray to check the tube placement (see that?!) and discussed a way to troubleshoot if the tube was indeed in a good place.  The x-ray revealed the tube was indeed in the right place, so we shifted her position a little and she rebounded.  Whew!

In their rounds, they ordered a 3pm enima which helped her give her first bowel movement!  Grayson gave his second this afternoon!  Both kids had their second/final umbilical lines removed.

The rockstar of the day was Grayson.  He accepted the changes in the High Frequency Oscillator and graduated to a SIPAP machine.  Unfortunately he only lasted about 3 hours before they put him on a normal ventilator.  So he has a tube again but ended the day ahead of where he started.  And if the night goes well, Trish will be able to do Kangaroo Care with him tomorrow morning!  It will be such a treat the first time we get to hold our kids.  Of course mom gets to go first, but I am so excited for both of them to have that experience.

Here are the obligatory "First Week" pictures.  I didn't want to ask the nurse to help us make Scarlett's a better picture, so we may cheat and retake them tomorrow!

Friday Night Lights

Grayson holding Trish's hand:

Scarlett sunbathing:

Tomorrow the twins will be a week old.  I don't know if there has ever been a week that has gone so fast or so slow.  Today's updates are mostly around our favorite diva, Scarlett.  She received her PICC line today.  She was given her first blood transfusion and seemed to take it well.  She started Phototherapy again.

She also seems to be digesting her food better than Grayson.  They measure this by hooking an empty syringe up to the feeding tube and opening it up, vacuuming the stomach contents out into the syringe.  Then they measure/record their findings and decide whether they want to "feed on top" of it.  For instance, at one of Grayson's feedings today, they pulled out 5 mls.  They only feed 1, so this shows evidence that he is breaking the food down in his belly, but isn't really digesting it.  With a "residual" that high, they might decide to give it back to him but not give him more.  With a smaller residual, they might give that back then give a new 1 ml feeding on top of it.

In rounds today, the doctor laid out a plan to get them off the oscillator.  This would be huge because we have a better chance of being allowed to hold them when they aren't using a tube for breathing.    If they can tolerate a 9 Mean Area Pressure they will be able to move to another device.  I will have to ask at rounds what that device is called because right now, my "daddy brain" is kicking in.  Can I use that or are women the only ones allowed to have "mommy brains?"

I did grab the respiratory therapist and was given a crash course on the Oscillator this evening.  One of the reasons this machine works so well on micro-preemies is because it uses negative pressure.  In our bodies, the reason we inhale is our diaphragm lowers and creates a negative pressure, so air rushes in to fill that area.  Then the diaphragm raises and forces the air out.  Most breathing machines only have positive pressure, sending the air in but not helping it escape.  The oscillator has a piston inside of it that forces air in then pulls it out.  The frequency can be adjusted.  Both kids are currently on 10 Hz.  They get 6 breaths/minute per Hz, so currently they are getting 600 breaths/minute.  They can also change the flow rate but I'm not sure what that does yet.  But the setting we are working on right now is Mean Area Pressure (MAP).  The RT couldn't explain how it works but printed off some documentation that I haven't had a chance to look at yet.  But the machine we need to move them to seems to have a MAP of 9, so if we can get them to 9 and they do well, we should be able to transition them.  It feels good to have a goal, even if there is nothing we can do to help except pray.

Grayson doing leg presses:

Grayson hanging out under the lights.  She has a big belly but all she needs is a bowel movement!