Griffin and Daddy!

Yawning Carter!

Our two little fighters have moved on to a whole new bag of stressors.  Take eating for example, Tim and I bottle feed them daily and they have done pretty well, but it is a bit stressful as I sit there and feed these tiny little babies with my untrained hand.   They don’t take a bottle every feed but they are learning the all important skill of eating and breathing at the same time quite well!  Griffin, true to form, is still having some digestion issues and brady spells.  Both of which we hope he grows out of in the next few weeks.  Carter is taking a little break from bottling at the moment as he showed some signs of sickness.  But all the tests say he is fine so we are hoping he was just tired and needed a break for a bit. Then there is the stress of making sure they keep their body heat as we hold them for hours and as they switched Carter over to a  crib last weekend!  He weighs 4 lbs. 10 ozs. already and has grown out of his “box”!!  Griffin will move soon too – he is getting close at 3 lbs 13 ozs.!  Then there is the stress of how low we can make their cannula settings and still keep them comfortable – there is a delicate balance that the respiratory therapists play with helping the boys learn to breathe on their own while still getting the support they need for their fragile lungs.  Both of them are doing remarkably well in this department.  Even Carter, with his chronic lung disease is thriving on his high flow cannula.  We went from two boys with three machines each next to their big clunky humidfying beds to Griffin with only a cannula that is connected to his wall and Carter with one small machine and in a crib!   I guess you could say that all of these stresses I don’t mind!!

Everyone asks so let me say on here, with this large audience – I don’t know when they will come home.  Yes, they are moving along quite well but if I have learned anything in the NICU it is that things can take a turn for the worse at any moment.  Today the boys are good, nearly great in fact, but there have been kids like them that have gotten sick and ended up back on the ventilator – adding months to their stay.  So…it is with a sense of trepidation and a large amount of cautious optimism that I say that the boys should have less than a month left until they come home if they continue to progress as they have been these past few weeks.  However, even then – one boy will most likely come home before the other, as is usually the case with twins.

Our family is busy getting ready for Christmas and as with most things in my life since the boys have been born I am careful not to take any moment for granted, and find myself grateful for everything.  Watching such fragile life everyday as I spend my days in the NICU provides a healthy dose of gratitude for all that I have and the love that surrounds my sons.   For no matter how difficult our struggle is at the moment I know it could be much worse.  God has made a way for us, from the lack of snow and easy driving to a free parking pass getting to the boys each day has been stress free.  In fact so many things have been better than we planned for, less stressful that I thought they would be since October 8th!  A scripture has been running through my mind lately that I want to share with you.  Psalm 50:15 And call upon me in times of trouble; I will deliver you, and you will honor me.  It sums up our journey with God this past two and a half months.  For we have called on Him, over and over – and he has come through for our family, over and over!

*The pictures in this post were taken by a friend of ours, and an amazing photographer Brian Battenfeld (www.brianbattenfeld.com) – thank you Brian for volunteering your time to capture our time in the NICU!!

This post comes at least a week before I thought it would, in fact this past week a lot of things have come before I thought they would…are you ready for it?   Carter is EXTUBATED!!!!  I know, I can’t believe it either!  It happened pretty fast on Tuesday as I stood there with my mouth open listening to his team of doctors discuss his care during rounds.  As we all know, Carter has pretty lousy lung xrays, but since they didn’t see this changing in the near future they thought it wouldn’t hurt to give him a chance off the ventilator.  It makes me nervous to even say it, for fear that I will jinx it but   –  so far it is working!!  I have a feeling that eventually he will go back on the ventilator since it takes most preemies a couple of attempts for a successful extubation but any day off a vent is a good day!  

So after 53 days, I was able to hold Carter!  Like Griffin, it was only for 15 minutes while they changed his bed but it was fantastic!  That was yesterday, and today I held him for a couple of hours as he wiggled, coughed, cried a little, held my finger and slept!  Tim was able to enjoy the same when he came for his daily visit after school.  We felt connected to our two little boys before as we touched them through their isolettes but being able to hold them and comfort them in our arms is an incredible feeling that makes our bonds that much stronger.   

We’re getting there…slowly but surely things are moving along! 

Keep those prayers coming that Griffin is able to eat and gain weight consistently, and that Carter is able maintain his breathing without a ventilator. 

So of course here are some pictures of my moments with Carter, and one of Griffin too! 

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What a great few days the Camp boys have had!!  So I wanted to share a quick update with everyone.  Here is the rundown of all the great things that have happened since my last update, so much to be thankful for…

1. Griffin is now on a nasal cannula!  (A little tube in his nose blowing oxygen – the actual breathing he does on his own now!)
2. Carter is off the oscillator!!!!!  For the first time in 6 weeks he isn’t shaking…and he is loving it!
3. Griffin is eating (and pooping for that matter) like a champ and is almost up to full feeds!
4. Carter is doing so well on the regular vent they are hoping to have him off of it in the next week!
5. Both Tim and I have held Griffin, and for very long periods of time! My record is 3 hours!! 
6. Hopefully I will hold Carter on Monday since his nurse thinks he is stable enough to be held while on the ventilator.  That will be amazing but I know not to plan too far ahead in the NICU world so we will see if it happens ;).
7. Carter weighs 3 lbs 6 ozs and Griffin weighs 3 lbs 4 ozs!

And in case that list wasn’t exciting enough here are some pictures that we have taken with our phones! The little one is of Carter after his bath (quite the dramatic little boy already!) The rest are of Griffin and his new equipment-free face and new favorite position…our arms! 

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When we first arrived in the NICU we were the neediest babies there.  We got lots of attention – our boys had teams around them most of the time.  Everyone was so nice, and bent over backwards to make sure we felt secure and comfortable with the treatment given to our tiny, tiny 25 weekers.  Today the boys are 31 weekers andhave doubled their weight!  And while still attentive, the doctors aren’t ever-present at the bedside’s of “the Camp boys” as the staff calls them.  They don’t run in every time one of them has a spell and they don’t come in everday to give me a thorough report.  At first, this was a tough transition for me.  I had become accustomed to the attention and extra time the doctors spent with my boys.  But as I sat today, next to Griffin and chatted with the nurses about this change I came to a realization.  This change is a positive for the boys.  This shift from a staff of doctors with a sense of urgency to a staff of doctors who stroll in, wave and walk on to another baby in the room means that my boys are better, stronger, more stable and healthier than they were before.  They are clearly no longer the neediest babies in the NICU.  So it was in that moment today that I got over missing the ever-present team of doctors and breathed a sigh of relief. 

Griffin and Carter still have a long way to go but we are moving along in many ways.  Both of the boys have broken the 3 pound mark!!  Carter weighs 3 lbs. 4 ounces and Griffin weighs 3 lbs. 2 ounces.  Even though Carter still has some pretty lousy looking lungs his P.I.E. (emphysema in preemies) is gone and they have been able to wean his oscillator settings over the past few days.  Hopefully he will be infection free with this latest set of cultures (tests) so he can receive a round of steroids to strengthen his lungs and they will be able to move him off of the oscillator sooner than later.  Griffin is doing much better in the lung department than his little (by 7 minutes) brother.  He was extubated last week and it seems to be working.  He is on a SiPap machine which is similar to a CPap machine for someone with sleep apnea.  His little mask over his nose gives him oxygen at a rate of 15 – which means that on top of what Griffin breathes on his own the machine gives him 15 breaths per minute.  Our goal for him is to be weaned down to a rate of zero – then he can move to a nasal cannula and on the track to doing it all by himself.   We’ll get there – I’m in no rush! 

And something wonderful happened today – I was able to hold Griffin!  And when I say hold, I don’t mean two inches above his bed while the nurse changes his bedding type of holding, I mean sit in the rocking chair, wrap him in a blanket, sing to him, kiss him on the head type of holding!  And it was amazing!  It was only 15 minutes since he can’t maintain his own body temperature for long but it was the best 15 minutes I have had in the last six weeks.  The next time I will have such a wonderful 15 minutes will be when I get to hold Carter, which hopefully will be in the a couple of weeks.

Over the past few days I have received a lot of feedback from people about how my blog is a blessing to them, a bright spot in their day.  I am so glad to hear this, and humbled to know that my thoughts touch people.  For me, this blog has been a blessing, a therapeutic great outlet.  I love sharing my story with people, and this blog helps me to feel connected and surrounded by support and prayer.  As many of you know (and I think that I referenced this in a previous post) Tim and I have had a rough few years.  However, we agree that our love for each other and the bond within in our family unit has never been stronger.  We often talk about “next year” and the plans that we have and then stop and laugh.  Call it cynicism or maybe call it living in reality but we have learned in the past three years not to plan for a “good year”, instead we wait and take what we get.  Funny thing is, when we look back, or on the days we are feeling sorry for ourselves and dare to compare our trials to those of people around us we still can look back and be grateful for what we have.  I guess you learn to do that quickly when faced with so many life lessons out of your control. 

So I wanted to take a moment to share a song with you that a friend of mine shared with me.  Keeping this message in mind, in the midst of a difficult time has helped me to keep things in perspective.

Blessings by Laura Story – She wrote this song while her husband was going through the long recovery process from a brain tumor. 

 Click here to listen to the song 😉

Each day is a blur,  so when people ask me “How are the boys today?”  I am never quite sure how to respond.  I could give the long version – the version where I include their O2 rates, pressure level changes on the oscillator, change in antibiotics, feed mls, number of “spells” they have had in the last 12 hours, CO2 levels in their blood compared to the last blood gas they had three hours before, saturation levels… or I could just tell you that “they are okay”.  I know that my long version, while to me seems easy to understand and not really alarming, is a lot to handle for people who don’t sit in the NICU everyday for five hours.  But I feel like just saying “they’re okay” minimizes the hours I spend talking to nurses, doctors as well as the fighting the boys are doing just to get to where they are.  I don’t mean to sound ungrateful for the question – I like that people ask how they are doing.  I just wish I had an answer that would give a clear idea about how they are doing, without making it sound like a day at the park or a house of horrors.  It is a fine faint line!  So prepare yourself, today I am giving the long version.  So for some, you may read the paragraphs below and think “poor boys/Camps…” but remember, we have been doing this for over a month, and we are neither freaked out nor overwhelmed by what for us is the daily report on the boys.

Carter

Carter has had a hard road in the respiratory department.  Last Wednesday at one point they thought both of his lungs collapsed, and they couldn’t get his saturation levels (amount of O2 in his blood, which should be between 88 – 95%) above 70.  A team of doctors, nurses, respiratory therapists and Tim and I stood around him as he “desatted” (dropped his saturation levels) over and over again into the 50s.  They turned up his percentage of O2 to 100% (we breathe room air at 21%), increased his pressure (the pressure amount inflating his lungs by machine) and still he continued to desat.  I spoke up and asked if they checked the placement of his tube, because I know that he moves a lot and the tube moves with him.  Sure enough, the tube had slipped and needed adjusting.  (You know you have been around medical things too much when you can help diagnose the problem)  After awhile Carter stabilized again but not before the drs. thought up many different reasons for his multiple spells.  In the end, it was yeast growing in his trachea…yes, a yeast infection of sorts.  Gross, I know.  Since then Carter has improved. 

• He is tolerating 20ccs of food every three hours (although sometimes he pushes 10ccs or so back up in his tube.)
• He weighed 1190 kgs yesterday.  (About 2lbs 10 ozs.) but weighed 1270 (2 lbs. 13 oz)  two days ago – he lost some weight fighting his oscillator, but I am sure it will come back soon!
• He is at 35% O2 last time I talked with a nurse.  This is amazing considering last week he was always between 60 – 70%!  On Thursday he even made it down to 28% and was in less O2 than his brother – this never happens!
• They removed his PICC line (like an IV that goes far into his body and can last for a long time) which was clotted and now was two IVs (these will need to be changed often). 
• He was weaned off of the fentynol (an addictive sedation drug) yesterday and is now on methadone to help with the withdrawal from the fentynol.  This will take about a month but will go home no longer addicted to drugs 🙂 In the meantime, if he needs sedation  he will be given morphine.
• We were told this week that it is very likely that he will go home on oxygen and monitors, given that he has chronic lung disease.  But this is pretty common and still a long way off for him.
• He was given two rounds of steroids to help his lungs before they found out about the infection and so had to stop them. 
• He was given a clean “giraffe” bed and trach tube to get rid of any germs hanging around.
• His blood gasses are getting better.  Instead of 56% CO2 output he is at 48%.  (the lower the better)
• Yesterday he had “the best lung xray” his doctor had ever seen for him!
• So…he’s okay!

Griffin

Griffin was off of the ventilator for about a week.  It was amazing!  I saw his face, touched him, held him (above his bed) and was only days away from really holding him while I sat in a rocking chair.  But then he started having Brady spells (bradycardia is when his heartrate drops really low and he often needs stimulation and on rare occasion bagging to get him breathing again).  At the same time as Carter was desatting Griffin was having Bradys that dropped his heart into the high 40s – low 60s.  Over and over again his heart would drop then come up.  It was terrifying to watch his nurse tap his bottom, lift him up, adjust his O2 levels and wait for his heart rate to go back up.  Like Carter, the doctors came up with many reasons as to why this could be happening.  In the end, Griffin tested positive for an infection in his blood.  So he is on a couple of antibiotics and his spells have subsided.  But not before he was intubated (put on a ventilator), gagged out the tube and extubated (taken off the ventilator by taking out the tube) himself, and then re-intubated 10 hours later.  Since then though, Griffin too has improved!

• He is still on a vent but only at 25% oxygen with a low pressure.
• He was taken off three of his antibiotics and put on two different ones that would provide better coverage.
• He had a lumbar puncture (like a spinal tap) to make sure that his repeat infections were not meningitis (we should get results in a few days).
• He is eating 2ccs each hour and only giving back some aspirates (things in his feeding tube) but they are not green – just undigested.
• He has had a couple more blood transfusions to replace all the blood they have taken out of him to make sure that his medication levels are correct.
• His blood gasses look great so they will be doing them less frequently.
• He weighs 1170 kgs (about 2 lbs 9 oz).
• He was moved to an isolette instead of “giraffe” bed since they wanted him in a clean bed and he is stable enough to be taken out of his bed to be weighed!
• While he still isn’t regular, his belly xrays look good and don’t show any intestinal issues.
• His lung xrays look better and show less fluid – so the antibiotics are working pnuemonia -like symptoms!
• So…he’s okay!

Most importantly, both boys had their repeat head ultrasounds which were clear!  At one month neither boy has a brain bleed.  From what we are told, this is amazing in babies that were born at 25 weeks.  One nurse said that she is shocked that they are clear of bleeds – and at this point they are basically out of the woods of getting one!  A bleed could have been devastating – even if their lungs and nutrition was perfect, without the brain it wouldn’t have mattered.  We feel so blessed that they both have “good heads” as their doctors say! 

I hope the last 1,000 words haven’t left you depressed.  I know it is a lot to take in – but for us, this is what we get each time we call or visit the boys.  While there are set backs to report at times we see progress everyday in their growing bodies and expressive faces.  The NICU staff has become like a second family to us, the routine of the security desk, waiting for the elevator, hand washing, bells and alarms, feeds, xrays and ultrasounds is now our normal day – and not one that seems sad, difficult or troubling to us.  Of course, there are days which cause our blood pressure to rise (like last Wednesday) but overall there is more joy than sorrow when we look at our tiny little fighters lying in their beds.  We feel blessed that God has given us the tools and ability to deal with each daily report with confidence and understanding.  And especially blessed to have Griffin and Carter in our lives (even in they don’t live in our house…yet!).

As I have been reporting in previous posts while Griffin and Carter are doing relatively well, they each have some issues that are slowing their progress.   Carter has lung issues which affect his ability to breath and maintain the appropriate levels of oxygen in his blood.  His lungs collapse often and require a jet machine to reinflate them and keep them functioning.  Griffin’s lungs on the other hand look great and he was taken off the ventilator and is now doing really well with just a tube in his nose providing a low-level of constant oxygen.  However, Griffin hasn’t eaten consistently since birth and has only had a bowel movement with the help of medicines.  They have run lots of tests and are now consulting with surgery to be sure that there isn’t an obstruction of some kind in his intestines stopping him from being able to process his feeds.  The good news is that so far none of the tests show any obstruction or serious concern.   So while Carter is up to 2.5 lbs Griffin gains and loses weight on a daily basis and is just brushing 2 lbs. 

A couple of days ago during  our “amens” (prayers before dinner, which we refer to as “amens”) we prayed for both Griffin and Carter and their different situations.  It was after we said amen that Kennedy erupted with a smile and exclaimed “It is so great, they both have their own talents! Carter is a good eater and Griffin is a good breather!”  Her enthusiasm and pride for her brothers was apparent and there wasn’t a sign of concern anywhere on her face.  Here I was praying for God to fix their problems where Kennedy sat thankful for their “talents” as she put it.  

I have thought a lot about Kennedy’s point of view in the past couple days as I stood next to the boys’ isolettes, watching them wiggle, breath, open their eyes, cry, sleep.  As I talked with the doctors and nurses about the plan of action, test results, medications, future tests, breathing rates, xrays.   What an easy change in point of view to make one’s outlook brighter and easier to handle. 

Choosing a mindset of positivity and gratitude instead of pessimism and needs came so easily to Kennedy.  So from now on I am going to try to follow her example.  What a nice way to walk through life, let alone a difficult time!

Since my last post the boys have been holding their own (I feel like I say that a lot,  forgive me if you have read this statement a million times – but it is the best way to explain their status)  and remain stable.  Our slow climb has been pretty positive over the last couple of days.   Both boys are a whopping 2 lbs now!!  When I walked into their room on Monday I was greeted with open eyes from both boys.  Seeing them awake more often is so wonderful for me to witness.  I just want to pick them up and snuggle!  In time, I will!

Carter

He is up to 8 ccs of breastmilk and is taking it well.  He is still having some issues with his oxygen levels but he corrects himself so we aren’t worried.  They continue to adjust his jet settings to keep reinflating his lungs and keeping the onset of an issue similar to emphysema at bay.  His cultures show that less bacteria is growing in his trachea and lungs so this is promising in terms of his infections.  Of course, our wiggly little guy continues to try to escape as he kicks, stretches, arches and squirms all while on a sedation drip.  I’m thinking this is an indicator of his feisty personality!

Griffin

He was taken off the jet machine last night and returned to a regular ventilator. And as of 9 am Thursday morning they took him off the regular ventilator and is now only on a nose cannula!  Lets hope it sticks!  Today we heard him cry – what a beautiful sound!!!  A sign that his P.I.E. (the emphysema like issue) has subsided.  He hasn’t pooped without the help of medicine yet and we think that is affecting his eating abilities.  They hope to continue feeding him soon but he needs to have clear belly xrays, no nasty green suff in his feeding tube and some signs of bowel movement.  They conitnued his feeds this afternoon while I was there – we won’t know if this will continue for a few days to see how he handles it.  But it is a step in the right direction!!! He has had a few spells (O2 and heart rate decrease) but he self corrected during his last one.  Hopefully his brain is catching on that he needs to keep breathing regularly!  He is definitely filling out, and hopefully settling into a routine of rest and growth!

The rest of the family

We are gearing up for Halloween, and continue to weave our NICU life with our home life.  We have been overwhelmed with the support from our friends, coworkers and relatives.  It isn’t until you are in a place such as this that you truly realize what great people surround you.  Everyday someone gives us support either financially, with food, prayers and or kindness that brings us to tears of gratitude.   We truly feel blessed and are filled with appreciation.

This weekend was really hard for Griffin.  And in turn, very hard for us.  We had gotten used to him being “stable” – mistake #1.  It turns out that his issues were normal for the staff and while they were concerned and attentive, Griffin’s issues were nothing they hadn’t dealt with before for babies his size.  As I write this, he is back to stable (for now) with some adjustments in medications and ventilators. 

Beginning on Friday afternoon, only hours after discussing whether or not to take him off the ventilator because he was doing so well, he started having spells where his heart rate and oxygen levels would drop dramatically.  The nurse or doctor would have to attach a bag to his ventilator to physically get his numbers back to safe levels.  A spell usually resulted in a team of staff around Griffin to check his status and rebound time.  This repeatedly happened on Friday and it is an understatement when I say it is very difficult to watch.  They conducted head ultrasounds, echo cardiograms and xrays to rule out serious issues like seizures, brain bleeds, heart defects…  all of these tests came back clear and yet he continued to have spells.  He was taken off the respiratory study because of all his issues and then somewhere in the midst of all of this his stomach stopped working and so they stopped his feeds.  Just the day before the Dr. had said, “the good thing is that we are giving him nutrition.” The next day – no nutrition.    On our way to a rugby game on Saturday, Tim and I prepared to spend a relaxing day together while my dad had the girls, we called the hospital for an update.  Not liking what we heard we bypassed the game to visit the boys.   40 minutes into our visit we had counted three major spells from Griffin.  What a reminder of how helpless Tim and I are, and how great the NICU staff is at doing their jobs!  That was Saturday afternoon and by the night the spells had subsided significantly.  Thank God!  Since then he has only had a couple more spells.   

During all of this Carter’s saturation levels (levels of oxygen in his blood) were dropping and rising, as they have been all week.  Both he and Griffin have sprouted infections in their respiratory system and have some signs of lung damage and so now both are on the jet machine.  This machine inflates the lungs gently and keeps them inflated.  Their lungs are described to me to be like rubber bands; the more they stretch and shrink the weaker they become.   So a jet machine can be helpful in reducing some of the damage that their lungs have from struggling to breath. 

Suffice it to say, we learned these past few days what it felt like to be on top of the rollercoaster, on the brink of the peak and then come racing down.  Like a rollercoaster our hearts were in our throats, and our hands in the air – truly letting go of any control we thought we had to let God and those equipped to do so take care of our boys. 

Today we slowly climbed back up the hill to the next peak…praying for a plateau at the top – I’d like to skip the hurling to the bottom if we can, I don’t mind just coasting slowly at the top for a while!

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I think I mentioned that our first hurdle was making it through the first 10 days of the boys’ lives without any brain bleeds.   Well today they are 10 days old, and their head ultrasounds showed no signs of brain bleeds!!  They can still suffer from bleeds at this young age but the risk diminishes greatly after 10 days.  So we were very relieved and celebrated with their nurses this hurdle jumped today! 

On another note, they also had another success this afternoon…both boys pooped!!!  Yea for working digestive systems! 

So today was a good day.  Your prayers are working!