Sick Babies

I apologize this didn't go out sooner.  And that we don't have pictures.  This was started over the weekend, but I didn't finish it.  We will be posting pictures tomorrow for the kids 5 month mark.  We stopped doing the weekly pictures now that they are home.  There is something about counting up the weeks that I associate with institutionalization.  Obviously we did it every week in the hospital, but it also reminds me of when I was deployed.  We started our deployment without a come home date so we counted up the days, weeks, and months until we had been in country about 6 months.  Then we had a date to count down to, which only changed a couple times....  Anyway....,

This week we had the opportunity to experience sick babies.  Both kids have coughs, although Grayson's "hacking" is a little more impressive.  Scarlett also has a runny nose.  We took them to the BPD clinic on Thursday and they Nurse Practioner decided they aren't quite sick enough for steroids yet, but that we did the right thing by bringing them in.

I expect most parents would read this and have the thought that we overreacted, knowing they didn't have fevers.  I hope that most people reading this have been emotionally involved enough to understand.  We have 2 things working against us:

1. We know our kids better than most people should know their kids.  We know their heart and respiratory rates, baseline temperature.  Its like the gearhead that rides with you once and asks how long your transmission has been goofing up.  I wish I could say, "What do you mean?" but when it comes to our babies, we can say, "Well, the cough started on Sunday but Grayson's started getting worse Monday evening.  Both babies slept much longer than they normally do on Wednesday night.
2. We know how fragile life is, and what its like for our babies to rely on a machine to breathe for them.

 So we have to be the parents shown in the Luv's commercial with her first baby, and then overreact when they start to show signs of illness.

Since our doctor's visit on Thursday, neither baby has progressed much.  Poor Scarlett has the runny nose that makes it hard for her to eat.  That whole suck/swallow/breathe thing is a lot easier when your nose is available....  Also, the ends of nasal cannula looks great when its caked with boogers.  Oh the joys of parenthood!  I wish I was being sarcastic, but honestly I love taking care of my sick baby.  I wish she wasn't sick, and I have the advantage of leaving the situation for 40 hours/week, but I feel privileged to provide the support directly!

I do feel bad for Trish though.  She spends most of her day with a theoretical chain to her leg, going from the kitchen to the living room and very few other places.

I do want to take a minute to endorse the Nosefrida (pronounced Nose Freeda).  If you haven't heard of this thing and have young kids, you need to get one.  The idea is disgusting but the practice is actually more hygienic than bulb syringes.  Essentially you put a tube up against the baby's nose and then suck through a hose on the other end, with a filter in between.  You can suck as long and hard as you want, so you can really clear the passage ways for the baby.  Plus, the plastic is clear, so you can take it apart and wash it thoroughly.  I have heard horror stories of those bulb syringes getting cut open and having mold and stuff inside of them.  Plus, you are agitating the nostrils by continually putting the tip in and out of the nose.

Again, sorry for the lack of pictures.  We have put a few on Facebook but don't have them on the computer.  We will remedy this tomorrow!

1 week as a family

We survived a full week at home with both babies!  Both are over 10 pounds now!  As of Wednesday, Scarlett was 10 pounds, 4 ounces and Grayson was 10 pounds, 0.5 ounces.  Both are 20.67 inches long.  It is getting hard to squeeze them into 0-3 month clothes now so we are starting to wear 3-6 months.

I was off on Monday and we took both kids to the pediatrician's office so Grayson could get his "well baby" checkup.  Getting both kids, their infant car seats, oxygen tanks, and apnea monitors is no easy task.

On Tuesday, the home nurse came in and weighed both.  We learned that she will probably be out one more time, but apparently if the kids are doing well she won't stay on our case.  Trish's mom came in that morning to help so I could be at work.

Wednesday was another doctor's visit.  Scarlett had an ultrasound on her hip because during the delivery she went transverse and they want to be sure there was no damage.  Her hips look great!  They also had their first visit at the BPD clinic.  Again, both kids were given flying colors!  They also gave us permission to allow them to sleep through the night.  We are on a strict regiment to do care times (change and feed) every 3 hours, whether they are hungry early or too sleepy to wake up.  Scarlett was very bad at night, wanting to sleep and so those care times would last closer to an hour.  Then Trish would get about 90 minutes of sleep and try it again.  Grayson helped a little once he came home because his body knew when it was time to eat and has an extremely loud cry.

Speaking of crying, if I could translate their cries, it would sound a little like this:
Scarlett:  "Um, excuse me.  Is anyone there.  I have an unpleasant experience happening right now.  Hello?  If you wouldn't mind, I would love your help."

Where as Grayson's cry is more like: "HEY YOU, MILK PERSON.  GET OVER HERE AND FEED ME!  NOW!  THERE IS NO BOTTLE IN MY MOUTH YET!"

We have a plan to try and wean their oxygen.  We will go to the BPD clinic in 1 month and will try them on a flow of 0.1 liters/minute (they are currently on 0.3).  If that goes well, then they will try them on room air during the May visit.  We are hopeful to have them off oxygen by then but are prepared to spend the summer tied to the house so we aren't too upset if it is delayed.

The last thing we learned in the BPD unit was we should have a puls-ox machine too.  I am not sure who dropped the ball on that but we should have had that when we came home.  It was terrifying to go without it.  A couple times we walked past the oxygen machines and the tubing had popped off.  We would have no idea how long they weren't getting their oxygen and the alarm doesn't sound unless their heart rate dropped below 80 or their breath rates are really high.  I personally hold the person at Children's responsible because she should know better, but apparently the Medical Supply company told her that our insurance wouldn't cover both an apnea machine and a puls-ox.  The BPD clinic said they like for us to have both but some parents are overwhelmed.  Anyway, our wonderful Case Manager with Anthem is on it.  She spoke with the DME company and we should have one soon.

I don't know how useful they will be now, but transitioning home was hard.  We were rockstars in the NICU, involved in as much as possible.  BUT we weren't responsible for anything.  Anytime we thought we saw something different, we had a trained professional that we could check with.  At home, we are the only ones determining if they were working harder to breathe, if that cough is concerning, or if they were sleeping too much.  Plus we have newborn twins, and they have doctor's orders to feed them every 3 hours.  They can't eat until they fill up, but they have to eat a certain amount.  And there is two of them!

The start of this chapter is harder than we thought it was, but easier than the beginning of the book.  We are extremely grateful to have both our babies home.  We couldn't imagine life without them.  They are showing more personality every day, and we love them SO much.

Happy St. Patrick's Day!

Reunited

We did it!  We did it!  We brought both kids home!  After 132 days in the NICU, MSSA and Ecoli in his lungs, BPD, Pulmonary Hypertension, double hernias, Grade 3 and 4 IVH, and PVL, Grayson came home and completed our family!

I apologize this took 2 days to get posted.  Uncle Phil and Aunt Kaila came over to hold/feed the kids so Trish and I could shower and I finally had time to upload the photos and post.  Thanks guys!

Scarlett's Homecoming

WOW!  Just titling this post made me breakout in tears 48 hours later.  I thank God that His will was for my kids to come home!  We are so fortunate.  I cannot thank you enough for your prayers the past  18 weeks

This song has been in my head for the past couple weeks, and in my opinion makes an excellent soundtrack when looking at the pictures below.

I am currently typing with my baby girl on my chest, sitting in my recliner. *Most of this was written on Sunday afternoon, but I didn't have a chance to add pictures so I didn't publish*

At home, we are adjusting.  Brutus is happy we are home but jealous that he is not getting much attention.  Nana Vallera came in Friday night and stayed through Sunday afternoon.  She is planning on taking some time off once Grayson comes home, but we already miss her immensely.

For now, Scarlett is sleeping in a bassinet in the living room.  The oxygen compressor weighs about 30 pounds so it is movable but cumbersome.  In the future, I may take it up and down the stairs so they can sleep in their cribs.  For now, Trish is sleeping downstairs and breast feeding.  As long as she eats enough, it is easier to feed the baby than pump and wash all of the pump parts.

Here are the rest of the highlights from this week:
Thursday: Grayson had surgery to repair his groinal hernia.  While in there, they confirmed it was a double hernia and repaired both.  The surgery went well.  The only down side was that he was an add-on, and they didn't get to him until 6:30pm.  His last meal was at 11pm on Wednesday night, but he was able to get some Pedialyte at 2am.  Otherwise he relied on an IV until Friday at noon.

He is recovering well.  One of my worries was about his fluid intake.  The surgery team pumped him full of fluids (at least 140ml when he normally is limited to 20mls/hr) and the jury is still undecided about how his body is handling the lack of diuretics (lasix).  But he seems to be doing really well getting rid of everything so far!  On Sunday, he returned back to his pre-surgery weight of 9 pounds, 3 ounces.

Friday: We  spent the morning at the hospital meeting with several people discussing life at home with Scarlett.  Our "village" will have a Pediatrician (We decided to go with Melissa Parsons from Emerald Pediatrics after referrals and reading reviews) as well as other Neonatologists with the BPD clinic. We will also have home visits from Respiratory Therapists and Occupational Therapists.

We were discharged around 1:30 and drove our daughter home!

My two beauties! 

Our parade.  I think we would have had a lot more fan fair being discharged from Riverside but we broke out and that's all that matters.

Hopefully we don't spend too much time at Children's but I want to take their pictures with the owl to show them growing. 

Brutus meeting Scarlett for the first time! 

In her bassinet. 

Aunt Kaila and Uncle Phil came to visit on Friday evening!

Saturday: We started trying to figure out the logistics for the immediate future.  Trish and her mom went to visit Grayson in the morning.  I fed Scarlett her 9am bottle and barely put her down again until her 6pm bottle.  Then I went to the hospital to visit my little guy.  While I was there, we found out we were moving rooms again.  Now that the Rhinovirus break out has run its course they decided to switch up room assignments again.  We are in another quad but still have a window.  By the time I was there, Grayson was definitely recovered from his surgery.  He woke up "hangry" (anger due to hunger) about an hour before his care times.

Scarlett showed her personality again Saturday night/Sunday morning.  She likes to sleep and did not eat very well for Trish.  So poor momma struggled to get her to eat for a while then ended up pumping anyway.

Our first bath at home. 

Sunday: Ethan was at his mom's this weekend but she brought him over to visit.  He hasn't seen Scarlett in person since the last weekend of November due to visitor restrictions at Nationwide Children's Hospital.  The schedule caught up with Trish and she is currently taking a nap.  Once she wakes up we will probably play paper-rock-scissors to see who gets to visit Grayson.

Monday: Scarlett had her first Pediatric appointment!  I believe this is so the pediatrician can get a baseline.  Trish did a great job getting her and the equipment in the car.  The doctor's office is directly next door to my office so I met her there and helped unload.  We liked the doctor but I am not sure if this will be the right home for us.  We were supposed to be able to wait in the exam room but spent more than 30 minutes in the lobbys, one of them with sick kids all over the place.  I am hoping it was a mistake made because we had to fill out new patient paperwork and one of the doctors called in sick so our doctor was double booked.  We will give them another chance with Grayson's initial well-baby appointment then make a decision from there.

At this point, Grayson is mostly on observation mode.  If he is doing well off lasix and post-surgery on Wednesday/Thursday, they should make the decision to set him up for his Saturation Study, Car Seat test, and desat test.  I don't know if we will need to meet with everyone else this time around.  We will need a second oxygen compressor delivered but we already have his Apnea monitor.

If all goes well, Grayson's trip to the zoo could be as early as Friday/Saturday and we are hopeful that it won't be later than the 17th/18th.

4 months

The kids are doing well but we have started a busy week.

Scarlett is struggling with taking her feeds.  I think she may have heard the H word being tossed around and was worried she might have to leave her brother behind.  She took all of her feeds last night and is doing ok today so far, but over the weekend she missed a couple and took an hour to eat a few others.  On a positive note, she is gaining weight so the medical team isn't worried about her nutrition, only her behavior being different.  She doesn't have any symptoms of an illness (fever, bradicardia, desaturations, etc.).  As of this evening, my best guess is that she doesn't want to be on our schedule (3, 6, 9, and 12s), she wants to be on her own.  She will wake up and cue early or late, but the doctor won't let us go "ad lib."  I am very happy to announce she is now 9 pounds 4 ounces!

Grayson's lasix were discontinued today, after he had already had his daily dose.  He is at 8 pounds 12 ounces!  Hopefully he will be OK off the lasix and be able to follow his sister to the zoo this weekend or early next week.

Both kids had their Retinopathy of Prematurity (ROP) exams today and their eyes are "complete!"  This means their eyes have developed normally!  They won't need another exam until 1 year from now.

Scarlett passed her SAT test last night.  They hooked her up to a higher accuracy monitor and did well.  She will have her car seat test tomorrow.

Both kids are getting their 4 month immunizations tomorrow.  We will have them do it in the evening after we are both there.  I am not looking forward to that...

In other sad news, Grayson has a hernia and will need surgery before he checks out.  We didn't schedule it yet but hopefully they can get him in late this week.  They will want him to spend the night of his surgery in the hospital for monitoring.

And lastly, on a bittersweet note, Trish will be working her last day for a while tomorrow.  The Practioner asked her to be available more often to make sure Scarlett's eating OK.  We assume she is eating better directly from Trish because she is still gaining weight even when she's not taking her other feeds as well.  Oakstone has been an amazing place for her.  She has had challenging days but loves what she does and the impact she has.  She also has an incredible work family that loves and supports her.  I have had the privilege of seeing that care in action the last couple months and can't imagine how hard tomorrow will be on her.  Of course we don't anticipate that tomorrow will be a "Goodbye" but a "See you soon."  

So here we are, on day 121.  The elasticity of time is playing a cruel joke as each day now seems to last forever.

Here are pictures.  Saturday was week 17 and Sunday was 4 months.

And a couple bonus:

 Her sleeping positions crack me up!