NICUitis

I apologize for the delay this weekend.  Honestly there wasn't a whole lot to report before today.  And I am feeling done.  I don't want to drive downtown to see my kids anymore.  I don't want to leave them behind at the end of the day.  I am run down.  I ended up catching a cold that lead to strep throat and didn't get to see my kids on Sunday.

A nurse practioner told Trish on Sunday that we should be home by Easter.  When she passed that along, I almost lost it.

But enough of the downer...

...lets hear all of the positive updates!

First, we were able to get our own room last week!  Apparently there was an outbreak of Rhinovirus where 17 / 23 bedspots had been exposed or had the common cold.  We were fortunate enough to escape the virus so far, but we are getting in full gown, gloves, and mask until Thursday.  As micro-preemies, our babies are at a significant risk of severe lower respiratory track infections, bronchitis, and even pneumonia.  If they were to catch it while at home, we would need to be readmitted.  Our friend who went home on Monday had the virus and was back Wednesday night/Thursday morning and her son is now getting Albuterol treatments every 2 hours.

A new doctor came on the service today.  From what we've heard, she is pro-home.  She is new to our kids but I am hoping that both will come home before she moves off the service in 3 weeks.  She decided to lower Scarlett's oxygen flow to 0.2 from 0.3/liters per minute.

Grayson's next move is to have his Lasix taken away again.  That should be on Thursday after they redo his Esophogeal impedance-PH monitoring on Wednesday.  Last time, he scored a double 0 but he is clearly showing symptoms of acid reflux.  I pray that he acts "normal" this time and they see the same things that we have seen over the past couple weeks.

Scarlett is having the study done tomorrow for the first time.  She has showed symptoms to a lesser extend.  Right after they eat, we see them arching their backs, acting extremely fussy while laying down, and even having bradycardia (drops in heart rate).

If all goes well, Scarlett could be "going to the zoo" next week!  We'll start to use this terminology because if we throw around the H word, they may regress.  The NICU nurses have seen a ton of kids overcome huge hurdles, then start having bradys right before they get discharged.  Typically you need to go 7 days without an alarm.

We were a day late on our 16 week pictures so the twins were rooting for Aunt Becca to win a couple Oscars.  They were delighted to hear that Feast won Best Short and Big Hero 6 won best animated feature film!

41 Weeks

I really wanted to get a post out this weekend, but the news shifted like the snowdrifts that came through.  Our hearts palpitated over our love bugs as Friday discussions hinted about getting home as early as this week but Sunday revealing that would not be a possibility.

Grayson is 8 pounds, 0.5 ounces!  Scarlett is 7 pounds, 12 ounces!

Here are the updates in Chronological order:

Wednesday (2/11):

Was able to hold both my kids in skin-skin contact!  Grayson had an MRI and was eating like a champ on his first day off lasix.

Thursday (2/12):

Scarlett started struggling eating.  She loves her food but her body seems to be working too hard so she was sleeping through her care times and was being fed through her feeding tube.  This pushes her NICU departure further out because she needs to eat by mouth for 7 straight days.  

Friday:

Scarlett went back on lasix.  This puts the medical team in a tough spot about when we can eventually go home.  Generally when babies are on lasix, they need other nutrients supplemented because they pee out too much.  At a minimum, in the BPD unit they put them on Potassium Chloride.  The doctor doesn't like the idea of us having TWINS on OXYGEN needing LASIX and VITAMINS.  In addition to the logistics being tough, you also have to be extra careful and look for ANY sign that something is off.  The balancing act to get her to eat while off lasix can take months.  The only way they would send us home without her eating is to have a Gastrostomy Tube (G-tube) inserted.  This requires surgery and then there would basically be a port for us to poor formula (and blended foods if she needed it when she was older) directly into her stomach.  We are not there yet, but our options are basically:

1. Scarlett feeds appropriately off lasix.
2. They send her home on lasix (which it sounds like they don't want to)
3. They take her off lasix and send her home with a gtube so we feed her as much as possible and pour the rest into her stomach.

Also, we received Grayson's MRI results.  Unfortunately, he has Periventricular Leukomalacia (PVL) to go along with his Grades 3 and 4 Intraventricular hemorages (IVH).  Right now Grayson seems to act appropriately (comparing him to the milestones of a 1 week old well-baby) but the odds are he will have motor control issues and/or learning difficulties.

Oh, and Grayson started acting a little more tired off his lasix, but was eating well still.

Sunday:

Grayson went back on lasix.  See Friday's comments about Scarlett and apply them here.

Today (Monday): 

Scarlett's lasix were discontinued because her electrolytes were way out of whack.  We did an echocardiagram because Trish asked at rounds when the next one would be and they realized the last one was exactly a month ago.  And the echo revealed that....  HER HEART IS HEALED!  Her PDA is closed and she no longer has any enlargements!!!  She does still have a Patent Foramen Ovale (PFO) but so does about 25% of the population.  Praise God!!!

So where does that leave us?  We are doing our Infant CPR and NICU discharge classes on Saturday.  Both are pre-requisites for us going home.  The conversation has shifted from "next week or so" to "in a few weeks."

Grayson before eating,

 and after.

 Scarlett before eating.

and after.

Valentine's Day

I will post an update later but wanted to wish everyone a Happy Valentine's Day!

14 Weeks

Yesterday the kids turned 14 weeks old.  That means they will be 100 days old tomorrow on their due date!  We are incredibly thankful to report they are both doing well!

Today has been an especially good day as both miracles have eaten by bottle or breast every single time!  We don't get our hopes too high because 1 day is not 7 days, but we are proud because 8 feeds in a row is more than 4!

Both kids are more than 7 pounds!

They have both done well on nasal cannula and the team has talked about weaning their flow.  We will most likely wean Scarlett on Tuesday, the same day we take Grayson's lasix away.

Tomorrow they will have follow up ROP/eye exams.  As mentioned before, they are uncomfortable which is why we have asked the team to hold off on making changes until Tuesday. 

Friday, they had their first play dates with mom.  Trish swaddle held them together for a couple hours!  They did not seem too into it though.

They are both spending a lot of time awake in between cares.  The good news is they stay pretty calm and quiet save for a couple grunts here and there if they want their pacifier.

We can't remember the last "spell" we've had where the heart rate or oxygen number drops.  Even Scarlett's tachycardia hasn't shown up.  She has had a couple times when her heart rate rose above 200 but it would be low (200-210) and she was obviously angry.

The only other real update we have is that they are going to run a scope through Scarlett's throat.  She occasionally makes a squeaky noise that sounds like a bicycle chain that needs oil.  They want to be sure that everything is OK.

We do have 2 opportunities to share with people who want to help.  If you would like to bring us a meal there are plenty of opportunities to sign up.  We typically get home after 9pm and some nights it is after midnight.  We love the meals because it keeps us from eating drive-through items.  We are not very picky but I will ask that you cook your meal beforehand so we can warm it up quickly, devour it, then get to bed so we can do it again the next day.  The link is http://www.takethemameal.com/meals.php?t=RGOC1538

Also, Trish and I have decided to walk in the March of Dimes "March for Babies" this year.  I was not very familiar with the organization before but they are the leading group devoted to preventing and helping premature deliveries.  Without their research, our kids would probably not even be here today.  You can join our team, walk with us, or donate to our team.  Our webpage is www.marchforbabies.com/keepthosebunsintheoven.

And here are the pictures!
Grayson

 

Scarlett

 The G on her badge means Grandparent.  This is Sue, or Nonna as we like to call her.  Nonna is the Italian word for Grandmother.  Trish's mom is half Italian, despite the red hair, but married a full blooded Italian so we have our Italian grandparents and Irish grandparents.

 

I'm too tired to caption all the pics, but HAVE to point this one out.  Trish checked the webcam early Sunday morning to see our daughter staring at the camera.  I am going to be in trouble as she gets older!

Wednesday Updates

Quick Updates:
I meant to publish this last night but didn't finish it.

Scarlett:
Yesterday evening Scarlett pulled her feeding tube out.  I asked the nurse if we could leave it out unless it NEEDS to be put back in and after consulting with the practitioner, we moved forward with that plan.  Scarlett took 2 full bottles and then all but 10 MLs of the last one.  We hope that her hunger will take over next time (9am Thursday) and she will finish her bottle.  As long as she gets most of her bottles they will leave the tube out.

The practitioner said she may be getting close to "ad lib" where they feed her when she wants and as much as she wants!  We need to be somewhat cautious because the extra fluid may make her work harder.

EDIT: Just checked the webcam at 9:50am and it looks likes Scarlett slept through her 9am feeding so she has the tube back in.  She went more than 12 hours without the irritant so I am extremely proud of her!

Grayson:
Grayson had a follow-up echo yesterday and he is still clear of Pulmonary Hypertension!  At this point, he will get an echo in a month/before he leaves, whichever comes first, and then will be followed up by the cardio team as an outpatient.  As long as he stays well oxygenated, this issue should not affect him too much.

The only thing they reported on the echo was an Atrial Septal Defect (ASD), which is a small hole in the wall that separates the two chambers in the heart.  I think this was first seen on his echo that showed the Pulmonary Hypertension (PH), but an ASD by itself is not a big deal.  This can lead to PH and parts of his heart getting larger from working too hard to get blood into his body (which could then lead to heart failure).  ASDs are not uncommon and many people don't discover them until adult hood.  The treatment plan right now is to watch for signs that he is having clinical issues such as needing more oxygen.  We will continue to try and wean him off.  The "hole" can close on its own at some point.  Because the heart is a muscle it would basically "grow" until the hole is no longer visible.   If it is still present when he is older and/or causing other issues, they would conduct heart surgery to try and patch it.  If they did that now they would need to do it again when he grew more.

The Checklist

3 months

13 weeks

91 days

I believe we are more than halfway through our rendition of Groundhog Day.  It's hard to imagine what it will be like when we are home.  Our poor dog won't know what to do with himself.  He loves small people already, and won't spend as much time wondering if we abandoned him. 

 

We have a new checklist for the twins to accomplish.  It is similar to the old one, but different.

 

1) Be on Nasal Cannula.

• Scarlett is staying strong!
• Grayson moved to it today!!

2) Have their oxygen on a flow of 0.1 or 0.2.

• They will allow babies to be on a higher flow based on their weight.  Our weights allow them to be on a flow of 0.3 but that flow needs to come down before they will send them home.

3) Be off their Lasix treatment.

• They have been on this diuretic since their birth, or very near it.  Theoretically, removing excess fluid may help their PDAs to close.  (Grayson's is closed but Scarlett's is still open).  The extra fluid also makes their bodies work harder to do things they weren't supposed to be responsible for yet, like breathing.
• When we arrived at the BPD unit, they were getting Lasix every other day, but twice/day.  In the BPD unit, they primarily give that level of dosage once/day every day.  They feel it accomplishes the same goal but takes the variables out.  If a condition shows up or gets better/worse they don't have to decide if the fact they were on or off Lasix that day made a difference.  Especially with growth, but I will touch on that later.
• Scarlett will not have a dose tomorrow.  The earliest Grayson will come off is Thursday, per our request (we want him to have the best chance on Cannula so we don't want him working too hard.)

4) Feed by mouth, every time.

• This may look differently when its all said and done, but theoretically, both kids will:
• Cue every 3 hours.  When they are getting messed with for diaper changes and vitals, they will wake up (if they were asleep) and look interested in eating.
• Stay awake and feed by bottle (eat the whole bottle) or by breast (actively suck for the time determined by the medical team (right now it is 15 minutes for Scarlett).
• Do this while keeping their heart rate in normal range and oxygen levels up.
• Right now Scarlett is feeding about once/day and then she sleeps through her next care time.  Grayson will be allowed to try eating on Thursday after he has had a couple days to acclimate to the cannula.

5) Gain weight, everyday, for at least a week.  They will be working hard to accomplish the items listed above, but if they are burning more calories than they are taking in, it means they aren't ready.

 

Saturday:

On Saturday we put the twins together and took Grayson's CPAP mask off for the photo shoot.   

Nana was in town for a visit.  The OSU alumni shirts were not planned, but if you know either of them, this combo was highly probably.

Sleeping Beauty!  (Scarlett) 

Sunday:

Can you tell she is feeding by mouth by the fact that she is passed out in EVERY picture??? 

 Our Super Bowl party!

 

I think she is dreaming of eating and making sure we know where the food goes.

So technically these were a day late, but we decided to retake them with his nasal cannula on!

OMG!