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!

How you can help

Jesus said to them, “Suppose one of you has a friend, and goes to him at midnight and says to him, ‘Friend, lend me three loaves; for a friend of mine has come to me from a journey, and I have nothing to set before him’; and from inside he answers and says, ‘Do not bother me; the door has already been shut and my children and I are in bed; I cannot get up and give you anything.’ I tell you, even though he will not get up and give him anything because he is his friend, yet because of his persistence he will get up and give him as much as he needs.
 “So I say to you, ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks, receives; and he who seeks, finds; and to him who knocks, it will be opened. Now suppose one of you fathers is asked by his son for a fish; he will not give him a snake instead of a fish, will he? Or if he is asked for an egg, he will not give him a scorpion, will he? If you then, being evil, know how to give good gifts to your children, how much more will your heavenly Father give the Holy Spirit to those who ask Him?” - Luke 11:5-13

Trish and I are asked over and over, "How can we help?  What can I do?  What do you need?"  First, thank you!  Thank you!  THANK YOU!  We cannot express how awesome it is to feel so loved by so many people.  The gifts, flowers, encouragement in multiple forms mean so much to us.

We were being encouraged allow our friends and family to help.  I want to ask everyone to pray.  If you follow the blog, pray specifically, especially for the twins' lungs and kidneys and for God's comfort and peace for us.  Generically, my prayers typically sound something like this: "Father God, thank you for another day with these tiny miracles.  Selfishly I ask for a lifetime more.  Please strengthen Your children and continue to grow their little bodies.  Give the doctors and nurses strength and wisdom and use them as instruments showing your healing power.  Provide strength and comfort to all of us NICU parents.  We love You and are grateful for all that You do. In Your name we pray."

The second thing I might ask is for your understanding if we don't get back to you all the time.  Currently, our schedule is something like this:  After Trish gets up 3-4 times at night to pump (and I am roused to carry her milk to the fridge) we get up for the day.  Until she is cleared to go to work, my boss is surpassing any expectation I had and allowing me to work from home, but I try to spend my daytime working, except I take my "lunch" to visit the NICU to try and make the doctor's rounds.  After we get the lowdown we come home, eat a quick lunch, then Trish pumps and takes a nap, then pumps again.  Generally it is around 4:30, then Trish will make something for dinner so we can eat at 5 and then leave for the hospital.  We talk to the nurses to see how they did that day, then I try to listen in to the nurse shift change to see what they didn't tell me (although its tough because it is usually 2 different conversations I am listening to),  We can spend about 20 minutes of "Hand Containment" where we make a cupping shape and hold their legs and heads.  There is a "Hands-On Care" that we participate it where we change their diaper and clean their mouth/gums.  We will also watch the nurses check to see if there is anything in their stomachs (they call this residuals), feed them, and make any adjustments to their tube, IV, or sensor placements, position, or bedding, etc..  The rest of the time we are talking to them, praying for them, singing to them, or chatting with the nurses, all while watching the monitors, missing a heartbeat every time an alarm goes off.  Those 4.5ish hours both fly by and crawl.  I call it the NICU time warp.  Typically we only leave because we start yawning uncontrollably or our stomach starts grumbling (its hard to eat enough when that meal is keeping you from your kids!)  We come home and the cycle starts all over again.  Its very hard to differentiate Thursday from Monday, and it feels like we have been doing this for years, but has only been days.  So PLEASE don't be offended if we don't call you back.  We love you and again are very grateful that you are thinking of us, but the travel time to/from NICU is probably our only window that we can chat, and usually we are chatting (fun stuff like did the Breast Pump get ordered yet, or did this doctor get the insurance information or was it that doctor we filled that paperwork out for). 

Now, I know that most of you are already praying and want to do more, something tangible, an act of love.  Northwest Bible Church has spearheaded a "meal plan" (I have no idea what they are called, but I guess there is a website that people sign up on to bring us meals).  PS - thanks Tara Hart!  I believe this list will circulate beyond our NWB family and maybe Tara can post a link in the comments below???  Outside of that I don't know what else we need. I struggle with being self-reliant (I am being genuine here because I think it is a stumbling block sometimes) so it is not natural for me to think "Oh, this needs done, let me reach out to my dear friend to do it for me."  I will do my best to say yes if you ask specifically and its something that needs done (such as the meal thing that Tara asked to do for us).

So reach out often but understand if we can't get back to you right away.

And now, the reason you came here today, cute pictures and updates:

Grayson received more blood today.  His labs looked better but was still not where they wanted them.   He also received a PICC (pronounced like pick) line yesterday.  It stands for Peripherally Inserted Central Catheter and goes into his vein at his wrist and snakes through his vein to his heart.  This replaced one of the lines he had going into his umbilical line.  We knew this was a probability because the Umbilical lines typically don't last more than a week and they need the line to get IV fluids in.  Scarlett will need one but apparently they only had 1 catheter at the time the specially trained/certified nurse was there.  Grayson was still in the overhead billi-light but was able to shed the underside "pillow light."  Oh, and he had his first bowel movement!  This is huge and a sign that his systems are working and that he can process the billirubin our so he won't need the lights so often.  Otherwise there were no real changes.  There was a new doctor at rounds whose communication skills were different than the doc we had the last few days.  He made it clear that our kids are "critical" and right now we should be most concerned about their lungs, even more so with Grayson.  Next, we should worry about their kidneys.  Their high urine output means their kidney's aren't absorbing all of the nutrients they need so they are dumping it in their urine.  Then the team needs to give that back to them in addition to nutrients they needed initially.

We were able to get pictures of both of them with their eyes open around the "Hands on Caring" times:

Grayson peeking

Scarlett being a drama queen:

Scarlett wide awake: