In the Middle of Difficulty Lies Opportunity

Today was a big day for Andrew.

Here he is during our morning visit:

Hi!  I'm cute even asleep!

And here he is during our evening visit:

Notice a difference?

That's right...he's on the nasal cannula and not on CPAP anymore!!!  We think he is a little confused to not have all that head gear on, but we think he likes it!  No more tubes in the mouth, (replogle is gone, feeding tube is in the nose) no more elephant nose, and finally time to shape that head so it's not so square!

Look at me!

We are thrilled, to say the least, and hopeful that he can handle this reduction in breathing assistance.  The high flow nasal cannula still provides him a flow of oxygen, but doesn't provide as much pressure assistance to help him keep his lungs inflated.  He'll have to do more work, but hopefully his lungs are at a stage where this doesn't affect him too much.  He's on a flow of 5 liters per minute right now (I was told he could go up to 8.  Increased flow gives more pressure), and has been able to keep is oxygen requirements about the same as with the CPAP machine - 20's and 30%'s.

Of course, with Andrew these changes can never be easy.  In fact, just like with his move from the ventilator to the CPAP machine, the change basically occurred after some difficulties.  This morning, J had a nice long holding session with Andrew and things were going great.  He desatted a bit, but nothing he couldn't bring himself out of.  Well, then there was a change.  Andrew began to have difficulties breathing, and even began to turn blue!  Of course, the nurses were right there to help, but they did have to use the bag on him to get him back up.  He's had a bunch of these severe desats lately "sporadic, but severe" is the way the doctor put it.  They are not sure really why they happen...it could be excess secretions causing issues or just a preemie issue (or a host of other things).  It is horrible to witness, but once he recovers he is fine.  After today's episode he laid there just looking up at us with these eyes that said, "What?  I'm fine.  Why are you so upset?"  And he was...oxygen back at 30% and high-satting away.

Well, J and I left soon after that episode.  The whole thing really freaked J out (understandably), it was the first time he's been there when they've had to bag him.  I was actually out of the room pumping when it happened, but still was a bit shaken by it all.  It's so hard when he is fine one minute, and not breathing the next.  Scary.  We went home and did some more work in the nursery and got a phone call from the hospital around 5:00.

It was Nurse M.  She said she and Dr. B had a long chat, and they wanted to get the replogle (tube into the stomach) out.  You remember that it causes him a lot of secretions, he tends to pull it out, and it seems to irritate him.  So...they decided to give the high flow nasal cannula a try (and take out the replogle)!  She told us to not be surprised if he tires and needs to go back on CPAP, but we'll see.  Last night when we visited he was doing great.  Hopefully it will last!  And, if he would stop having episodes, that would be great too! (Nurses have warned us that if it is just a "preemie thing" that they will continue for several more weeks as his brain continues to mature.  Grrrreaaat.  Can we at least not need the bag again?  Please, Andrew?)

Cuteness!

Yesterday was Andrew's 2 month birthday, so we took a bunch of pictures.  See if you can tell two new things we discovered about him when we went to visit in the morning!

Also, his oxygen requirement was down in the 20%'s yesterday - mostly right around 25%!  Oh yeah!  Now if we could just get his pressure requirements down more we'd be getting somewhere...

Yup! I'm two months old!

Although I may think I'm five months.
I'm an overachiever, you know!

Why are you taking my temp again, mommy??

I think my shirt is a little too big!

This one is MUCH better!
(and adorable - thanks Kerry!)

One more birthday picture, and I'm done!

Love you little man!

I love you too, Mommy!

In care you couldn't tell, here is what's new:

1. He was wearing his first shirt when we got there!  It was a hospital shirt, sized Newborn.  It went down to his knees!  It was like Andrew found Daddy's sweatshirt and put it on.  We brought in the other shirt with the frog and it's Preemie sized.  Much better!
2. They finally moved the feeding tube from his mouth to his nose!  Until now, his nose was too small to pass the tube through.  You might think this looks worse, but it doesn't bother him, has helped immensely with secretions, and is much, much harder for him to get out on his own.  Progress, and one more visible sign he is growing!

In all, a great day!

A Clear Head

This has been a good week for clearing my head.  J convinced me to take some time off from the hospital the last few days so I could have some "me" time, and to give me a break.  So, instead of my usual twice daily visits, I cut them down to once a day for Wed, Thurs, and Friday.  I got some work done around the house (we've been making some progress on the nursery - pics of that to come soon!), paid some bills (whoops...is that due!??!), washed some baby clothes, and even got some work done for my job.  I didn't find time for the massage or pedicure that I was hoping for, but there's always next week, right?

It did give me time to reflect on our experience so far, and to be thankful for what we have.  We have a beautiful, strong son who is two months old already!  He is progressing so well, and continues to show signs that he is alert with all internal systems working as expected.  Although this journey is a roller coaster for sure, we've had a fairly smooth ride, and he hasn't had any major setbacks so far.  We've never been sat down by doctors to say that his prognosis is grim, and we've never had a middle of the night call from the NICU.  In fact, the only calls we've gotten from the NICU have been the nurses letting us know that we need to bring in more blankets or milk.  In addition, we've met some amazing people.  I've raved about the doctors and nurses before and we mean it - they are incredible.  Andrew's primary nurses (and some "quasi-primaries") truly love him, and make our days better when they are working.  We owe them so much; he wouldn't be here without them.  In addition, the other NICU parents we've met - they have been the lifesaver for me and J.  While no two NICU journeys are the same, we've found kinship and solace in talking to others who are going through this too.  I know we will be friends with these families for years to come.

He's drooling on my chest!

This time off to reflect has given me much perspective, and the energy to push on. Our visits the last few days have been good ones, and we've gotten some good news too.  Yesterday, we found out that Andrew had a repeat head ultrasound, and the brain bleed he had (level 2 IVH) has completely resolved and is now gone!  Thank you, thank you!  We are so relieved to hear this great news. Also, his oxygen requirements have been down lower than ever the past few days - in the low 30% range, and yesterday he was even at 25% for awhile!  (You and I breathe 21% oxygen, so he is doing great!).  A few days ago they started him on a mild diuretic which they thought would help pull excess fluid from him - including his lungs - and help his breathing.  I'm not sure if it is that, or just that he is getting bigger, but something is working! J and I both had the chance to kangaroo with him the past few days and he did really well.  I think J had his official first "OH SH!T" moment when he did it, where it really sank in that he was a father and we weren't just visiting a baby in the NICU!  I picture many a Sunday afternoon with them in the same position - reclined, with Andrew on his chest - as they take in a Redskin's game on the couch!  I can't wait!

Apparently he's not bothered by chest hair!
He slept the entire time.

Andrew does continue to have a few "spells" a day where he desats significantly.  One possible thought as to the reason for the spells is reflux.  They are going to begin him on Prilosec to see if that helps at all.  Almost all preemies have issues with reflux, so this medicine was bound to happen sooner or later.  It's kind of funny, they add all these medicines to various feeds throughout the day, so rarely does he get just breast milk at a feeding.  He's getting additional calories through a fortifier (every feed), caffeine, vitamin D, the diuretic (can't remember the name right now) and prilosec.  I'm probably forgetting something too!  Most of these should be weaned away by the time he comes home.

We both enjoyed the time together!
Don't mind my fly-away hair.

In all, it's been a good week - and I have a much clearer head (and apparently so does Andrew!)  You keep fighting, little man!  We're so proud of you!

3 Pounds!

Today after his bath. Is his hair getting lighter, or is it just me?

We haven't updated in a few days; things are chugging along.

We've hit a few new milestones:

• 3 pounds!
• 8 weeks old!
• 32 weeks! 

This last one is kind of bittersweet.  He's 8 weeks old, and has 8 weeks until his "due date" of October 20.  It's still sometimes hard to believe the start this boy has had to his life.  We were supposed to have my NJ shower this past weekend.  I was supposed to be sporting a big baby belly, and be excited to meet him in a few months.  Instead, I have a drawer full of maternity clothes (many never worn) and a son whose been in the NICU for eight weeks.  With another 8 to go (at least.)  While many preemies go home around their due date, there is really no telling yet whether this will be true for Andrew.  Right now, he seems on-track, but there is so much more developing and growing he needs to do before then - respiration, nutrition, and regulating body temperature being the main ones.  We can only hope that this NICU journey is about half over - since mom and dad are running on empty already!

Cubby cheeks, chin, legs and arms!  Love it!

The past week has brought more of the same regarding his progress.  A few changes up/down with his CPAP machine pressure.  Fairly steady oxygen requirements of around 30 - 40%.  More tubes pulled and/or tongued and/or slimed out.  Desats and some A's & B's - mostly small, but a few larger spells that continue to scare mom and dad when they are there for them.  Feeds are up to 7.4 ml/hour, and they've increased the calories to 26 cal/oz.  They really want this boy to grow!  A few more fat rolls are developing...even beginning to see a double chin on the boy! 

One possibly concerning thing is that in his eye exam yesterday, his ROP had progressed to stage 2 (from stage 1 last week).  This means the eye blood vessels are continuing to develop abnormally.  They will monitor him again next week, and hopefully it will stop progressing.  If necessary, they can do laser eye surgery, but we are hoping it doesn't lead to that.

In fun news, J got to help give Andrew a bath this morning!  Too bad all this baby stuff doesn't come with directions!  Luckily, Nurse L was there to help and to provide the QA (quality assurance) J wanted to ensure he was doing everything correctly.  Andrew did great during the bath - high-satting the whole time.  We left soon afterwards, but we're sure he'll be out like a light for most of the afternoon in a deep, clean sleep!

Budda belly and even some fat rolls on his legs!

I mentioned in the last post how much more alert Andrew has been.  For the past few days, he's stayed awake for almost an hour after hands-on.  He mostly just looks around, taking it all in.  Sometimes, he does his best to pull off his CPAP headgear (but he's not that dexterous yet, thank goodness!)  And, sometimes when we are not looking, he pulls on his tubes.  We can't wait until he gets bigger and all that comes off!  He'll be a lot happier too.  The other cute thing is that he's begun to smile.  We know they are not directed at anything/anyone but they melt our hearts.  We tried to grab some on video today, but he wouldn't perform for us.  Here is a quick clip, though.  One nurse commented yesterday that he is looking more and more like J everyday.  I'm still not so sure (behind all that gear, who knows who he looks like!)  What do you think?

Do You See What I See?

Look closely...at the base of the neck.  Do you see it?  Yes, my friends, Andrew officially has a fat roll! (FYI, the white thing sticking up in the picture is a thermometer taking his temperature during hands on.)

Look how long he is now!

We never thought we would be so excited about weight gain!  He's really beginning to grow, and the change is just amazing.  Each day we go in and it seems like he is bigger.  He is just under DOUBLE his birth weight - he came into this world at 640 grams, and now 55 days later he is 1270 grams (2 pounds, 13 oz).  We are so happy about this, because weight gain is so critical to him coming home. 

Gaining weight will help lungs get stronger, which will let them reduce the pressure in the CPAP.  Once that is down, and the dreaded replogle (suction to the stomach) comes out, they can begin to work his belly.  Right now, the feeding tube goes right to his intestines, and he gets a constant drip of food throughout the day (right now, 7 ml/hour - so about 1 oz every 4 hours).  They will pull the tube back into the stomach and see how he handles the feed into his stomach.  Then they will begin to compress the feeds into shorter time frames, since ideally he will take an entire feed in about 30 minutes.  This will get him ready for bottle feeding!

All of these milestones have us thinking back to when Andrew was first born.  We remember looking around the NICU in our first weeks and realizing ours was the smallest baby in our room.  It was hard to find hope.  Across the way was a family who often visited around the same times as us.  Their little girl seemed so big, and the mom was holding her baby often, doing kangaroo care, able to kiss and cuddle her child.  I admit I had a huge lump of jealousy as I watched them interact with their child, as I sat next to our isolette touching Andrew tentatively with a hand or finger.  Well, as days and weeks went on, we got to know the family and wouldn't you know it, C & L had a similar story to ours.  Their daughter was under 2 lbs at birth too - she's about 10 weeks older than Andrew.  Just knowing that allowed me to shift from jealousy to inspiration - if she could look so big and strong, then so could Andrew! 

We were able to pay this inspiration forward this week.  J & I have attended several NICU support group meetings, which they hold each Friday.  We enjoy meeting other parents who are going through the same experience, and to give hope to new families who have just arrived to the NICU to a world of uncertainty, fear, and the roller coaster.  This week we met another family whose son is about 2 weeks old, and was about the same gestational age as Andrew when born.  He only weighed 1 lb, 1 oz at birth, but is doing well so far.  The parents are still in shock, as you could expect.  Yesterday, we invited them to come over to our isolette to see Andrew - and to see what 8 weeks could do to a micropreemie.  They thought he was a giant!  But it gave them hope.  They then invited us over to their isolette, to meet their son Nathanial.  It brought back lots of memories...he was so tiny.  Tiny, and perfect in form.  Peacefully asleep, wrapped up in a little nest.  Pictures don't do it justice, just how small Andrew was at birth...but here are a few to remember.

Dad's hand next to Andrew

Andrew at one day old

We are continually amazed.  And blessed.  And can't wait until the day we bring him home!

"I'll have one of everything, thanks!"

After Andrew was born, we bought a book about premature babies to give us some idea what we were in for.  It's been helpful for us both to have something to reference as doctors and nurses throw out acronyms galore...IVH, ART, PAL, TPN, etc.  In the book's introduction, the author warns not to read the whole thing, but to reference various sections as they apply to your baby.  Those that know me, understand that I read the entire thing, cover to cover, in the first week.

One of the chapters covers top heath concerns for preemies of different gestational ages.  Remember, Andrew was born at 23week, 5 days so he's one of the smallest, right on the edge of viability.  I was reading back through the list for 23 - 25 weekers the other day and mentally checking off what he has been through already.  Wouldn't you know, that he's hit almost all of them?

• RDS - Respiratory distress syndrome; needed ventilator support at birth (almost all at his age need this)  CHECK!
• BPD - Bronchopulmonary dysplasia (also called Chronic Lung disease); damage to the lungs, usually resolves by age 2 (65% of babies his age have this.) CHECK!  His is mild, yet still causing breathing issues.
• Apnea - forgetting to breathe, should resolve by 38 weeks.  CHECK!
• PDA - pulmonary ductus arteriousus valve does not close on own after birth, causes too much blood flow to lungs (40 -50%.) CHECK!  Andrew had PDA ligation surgery at 10 days old to clamp the valve.
• IVH - interventricular hemorrhages; bleeding on the brain caused by small blood vessels rupturing (50 - 60%.)  CHECK!  He had a level 2 bleed, which is resolving on it's own and shouldn't cause any long-term damage, thankfully. 
• ROP - retinopathy of prematurity; abnormal blood vessel development in his eyes (almost all at his age.)  CHECK!  Right now his is at stage 1 (out of 5) but could progress or resolve.  Long-term effects TBD.
• Hernia - loop of intestines slides into the groin from the abdomen (15%, mostly males) CHECK!  He'll need surgery at some point to correct this, it's not an issue now unless it gets trapped.
• NEC - necrotizing enterocolitis; inflammation of intestinal tract (5 - 10%.)  He's avoided this one so far, luckily, but still could occur later in his stay.  It sounds pretty harmless, but can be very serious, requiring surgery and removing part of the intestines.
• Infection (50%).  He's also avoided this!  Infections can be very serious, so we are hoping to land on the good side of the odds on this one.

So, we've been lucky to avoid some of the more serious complications (like more serious brain bleeds, NEC, and infection) but he's managed to hit on most of the concerns.  After his eye exam the other day, which showed Stage 1 ROP, his nurse commented that he didn't have to hit on every complication known to preemies!  We agree!! 

After his eye exam - chilling out

As for the newest development (ROP), he will continue to be monitored to see if the eye blood vessels stop developing abnormally.  Ironically, extra oxygen is one of the factors that causes this issue (which of course he needs to breathe!)  Sometimes, it will get worse before it gets better, so we'll wait for next week's exam to see.  In the worse case scenario, the retina could detach from the eye and cause blindness (FACT OF THE DAY: This caused Stevie Wonder's blindness!)  Of course, this is why they monitor closely (he'll get eye exams every week or two until it is resolved) and if the level of disease gets bad, they would do laser surgery on his eyes before the retina detaches.  About 5 - 10% need the surgery, so the odds are low his would progress to that stage. 

Visiting with Daddy the night of his exam

While we are joking that Andrew is struggling with all the complications of prematurity, it really is amazing to look at that list, and realize all he's been through in his seven week life.  Clearly, our little boy is pretty strong and resilient.  And, what a testimony to technology, medicine, and the caring hands of his doctors and nurses that he is doing so well!  While we wish we had a time machine, to fast forward to when he is home with us, we are so very thankful for the home is in right now.  They are really miracle workers, and Andrew is one lucky boy.  We know he will overcome what ever is thrown at him next.

Awake for part of our visit last night!

Lockdown!

We received news the other day that the visitor restrictions (to parents only) will remain in effect indefinitely - probably through cold and flu season!  While we knew that last year they were on restriction from Oct - April, we were hoping that it wouldn't happen again until we were close to bringing Andrew home.  We got a letter describing the new policy, where it said that five babies have contracted MRSA. We understand that this is what is best for the babies, and a more controlled environment can help with sterilization, but it is still disappointing. 

J and I have enjoyed the visits that my mom has made down.  While it is clear she is down to see Andrew, she's been so helpful around the house (doing laundry, running errands, and cooking) and she's been good company for me during my daily NICU visits while J is working.  It's much easier to walk into that room with backup - someone to talk to and a second pair of ears to hear what is happening with him that day.  As you can imagine, she and the rest of our families, are bummed about this new development too, and are going to have to rely on our pictures to see how much Andrew has grown!

Hi everyone!  Just hanging out.

Trying out the nasal prongs on the CPAP machine!

Andrew continues to gain weight and take feeds like a champ.  He's up to 1180 grams (2 lbs, 9 oz) and getting 6.5 ml or breast milk an hour (still through the feeding tube).  His extra-small preemie sized diapers are fitting, and even getting a bit small!  The next size up (regular preemie sized) look huge though, so I think we have another week or more with this size.  They've moved up in size on his leads, and have been able to try out the nasal prongs on the CPAP machine (instead of the full mask over his nose).  The nurses say that he'll begin to put some baby fat on his body in the coming weeks - we're looking forward to that!

What a peaceful sleeping boy!

In all, things are going really well, and the doctors and nurses seemed pleased with his progress.  His O2 requirements vary on a daily basis, and have been a bit higher the past few days (in the 50's instead of his usual 40's).  No one seems concerned, so we are trying not to worry about it.  They say this his blood work is all fine, and that his lungs just need time to grow and heal from the damage caused from the ventilator.  Everyone has warned us that we are in a stage where he just needs to put on weight, and continue to grow.  It can be a bit boring - but boring is good in the NICU!  When I came in yesterday, Nurse M had him swaddled, and he was wearing a little cap under his CPAP headgear.  It was adorable! 

We have been enjoying his hand-on time, because that is really when he is the most alert and awake.  Usually, soon after being flipped onto his back he wakes up.  I can't get enough of his little eyes, wide and exploring everything around him.  He doesn't like the diaper change much - but that can be said of all little ones, right?  But, he usually calms down as soon as mom or day put their hands on him to comfort him.  As much as time in the NICU sucks, this is one part of our days that I will remember fondly.

Awake Time!

We got news that his first eye exam is later today.  Preemies often have some eye damage (caused in part by prolonged oxygen usage, surprisingly) so they will monitor him every two weeks from here on out.  We've been warned by the nurses and other parents that often these exams stress them out for the entire day (they dilate the eyes for the exam, then the exam itself isn't that pleasant), so we'll see what the day brings - both in terms of results of the exam, as well as how his day goes.  We'll keep you posted!

Slow and Steady...and some A's and B's

The past few days have been steady for Andrew - just how we like it. His weight is hanging about the same, his feeds are up a little bit to 6.2 ml/hour, and he's been an active little guy when he is awake. The nurses all say that is a good sign that he is feeling well. His strength is amazing...he continues to tap into his inner zen to practice the downward dog position - where he straightens his legs and lifts up his hips to a pike position. Nurse L yesterday said when she put him on his back he was doing some leg exercises too...bicycling his legs into the air. My mom and I even saw him push up with his arms and lift his head up for a few seconds! It's all quite hilarious to see.

A few changes have happened in the few days. They have begun to supplement his feeds with various nutrients that he needs. So, a few times a day he get iron added to his feed, sometimes he gets sodium, and he also gets his daily dose of caffeine in one of them. These changes are all based on lab work that show any deficiencies he may have in his nutrient levels. Since he can't take a multivitamin yet, this is the next best thing until his body kicks in and starts regulating his levels better. He also needed to get the replogle tube back in - he couldn't expel enough gasses and his belly began to blow up. We knew this was a possibility and don't consider it a step back. His O2 levels are kind of up and down - from about 29% to the 50's, depending on the day, his position, and how he is handling stimulation. His blood work continues to look good. All normal things for his age (now 30 weeks!). We've each been able to hold him more often, and Andrew's been a little more tolerant of it (less desats). We love our cuddle time!

Another "normal" occurrence for preemies that Andrew has begun to do is having A's and B's - apnea and bradycardia. Apnea in preemies is just like adults - they forget to breathe sometimes. Usually this is caused by missed connections in the brain, not any obstruction in the airway. Bradycardia (or a Brady) is a decrease in heart rate to low levels, usually caused by the apnea. A's and B's are common, but still a bit distressing to witness. Usually you can get them to begin breathing again with mild stimulation - rubbing their back or pinching their hands or feet. Once the breathing goes up, the heart rate follows. Andrew has been having several of these episodes a day - mom is getting good at predicting when one is coming! Of course, the monitors alert the nurses right away when they happen, and are right there to get Andrew back on track. They all tell us that these are normal, and will eventually just stop when he gets closer to going home (and his brain is more mature). Hopefully his won't become more frequent, and while we don't like them we realize it is just part of the NICU rollercoaster!

Mom-mom came to visit again this week - and got to hold Andrew for the first time! It was so sweet to see, and we are all so happy she got some time with him one-on-one!

A good thing too - we were told last night that the NICU is going on visitor restriction of parents only for the time being. There is a bacterial outbreak of MRSA in another room, which is a very serious bacteria because if it causes an infection the bacteria is resistant to antibiotics. Everyone is on high alert with washing, and cleaning everything down, since it can be spread by contact. If a baby gets a MRSA infection, they are put on isolation (away from the "general" population) for the rest of their NICU stay. We want to avoid that for Andrew at all costs - and especially avoid the infection! Hopefully, it will all be under control soon, and the visitor restriction lifted.

In all, this past week for Andrew has been very steady. We continue to be encouraged by his progress, and are thankful no serious backslides have occured. We love you, Andrew, and are so proud of you!

Baths, Visits and Cuddles

Yesterday was a busy day for both me and Andrew. I ended up visiting him three times, which is unusual for me, but they were all good visits.

We started the day with bath time! I got to the hospital earlier than usual, to help his nurse with his bath. (This was a Nurse K too - we determined that he has three Nurse K's...all different names, same initial. So much for keeping them straight in our blog!) Andrew was awake, and on his best behavior.

Right now, he is just getting a sponge bath, because he has those blisters on his foot, which is wrapped and has medicine on it. Soon, we'll be able to give him a bath in a basin, which will be more fun! We think he might has some curly hair - when it was wet it had a bit of a curl to it. We'll see, I guess!

I also got to see him for the first time without a ventilator or any breathing gear on - for a few seconds at least! We snapped some pictures, and were laughing about his square head. The cap from the CPAP puts pressure on the head, and so he has a flat spot on the top, and some on the sides too. His cheeks are puffed out from the pressure too. It will all go back to normal once he is off CPAP and on a high-flow cannula for awhile.

I think he looks like an old man here - receding hairline, square face, and puffy red cheeks from too much booze...sort of Nixon-esque. I also threw out Frankenstein, but my mom said those are too mean for our cutie. She thinks his head looks like SpongeBob Square Pants. You decide!

After his bath, Andrew crashed for several hours into a deep sleep. I can tell baths are going to become part of our night time routine once I bring him home!

In other news, Andrew was up to 1080 gms (2lb 6oz) today, which means he's gained about a pound since birth! Doctor A came by and said he was doing "beautifully" and decided to lower his CPAP settings again to a pressure of 6. She also decided to remove the replogle - the second tube into his stomach. It was causing lots of secretions that caused him to blow bubbles, but also disrupted his breathing at times. Another few steps forward!

In my second visit of the day, I brought my mom with me. She is down again for a few days to help out and see the little guy. She can't believe how big he has gotten - she's seen him about 4 times now, but the last time was 2 weeks ago. We were comparing photos, and here you can see how much he's changed. Photo on left was at about 6 days old, one on right was yesterday at 45 days old.

In the evening, J got to cuddle with Andrew for about half an hour. I got to hold him the other night too. He's still so little, and we don't really know what to do, how to hold him, etc. The nurses have been so helpful and will hopefully continue to boost our confidence in handling him. We so happy that he is tolerating us holding him, and cherish each minute of it!

In sad news of the day, we found out that our friend's daughter Sienna had passed yesterday, at 2 weeks, 2 days old. It just crushes us that she fought so hard for those two weeks and still was taken. We haven't seen R & Q yet, but they are in our thoughts, and so is their other daughter Avery who is still hanging in there. We know her sister is looking over her now. Just a reminder how fragile our little ones still are. Keep the prayers and positive vibes coming!

Expand the Prayers...

Everything with Andrew is going fine. He had a good day today. There is so much love and prayers going around for him, which J & I are so thankful for. If you have a moment to expand the prayers, positive vibes, and healing thoughts there are a few folks who need them more than us right now.

We have become friendly with several families in our NICU. One couple had twin girls at exactly 23 weeks. The girls are two weeks old today - one month younger than Andrew. We've been talking to this family a lot, as we can relate what they are going through, and feel a kinship with the parents. Their precious girls have had a tough start, including the same PDA surgery Andrew had. Unfortunately, one of the girls has really been struggling since the surgery, the doctors fear her kidneys have a clot, and I just read on their blog that she may not make it. Please take a minute to pray for little Sienna, her sister Avery, and her parents Robin and Quin. My heart is breaking for them.

Additional thoughts go out to one of the ladies on a message board that I've became a part of awhile ago when I began infertility treatments. Kiki gave birth to her son Callum a few days ago, at 25 weeks, 2 days. He is doing well so far, but they are in for a long NICU stay too, and they have been on my mind all weekend. I don't know why this happens to so many people...and it just seems doubly unfair for it to happen to someone who struggled to get pregnant. Send some positive thoughts Callum's way as well.

Andrew is six weeks old today. We are amazed at how far he's come in the past month and a half. We hope he continues to get stronger and bigger each day. Thank you all for the continued good wishes for him, and our family.

Quick Update

Some positives so far today...just a quick update since we haven't been in yet, but as reported from Nurse M...

• The blisters are holding for now!
• The leg looks "1000 times" better than it did yesterday - the swelling is practically gone.
• They are restarting feeds this afternoon and pulling the last IV (hopefully for awhile!)
• His oxygen levels are holding steady - around 40 - 45% (which is what they've been at for many days now. No real backslide so far!
• They are going down on the pressure of the CPAP. This controls the force that the air is entering the lungs, to help with inflating them during the breaths. [To put it in perspective, when he was on the ventilator, he had a pressure setting of around 5. When he moved to CPAP, they put it up to 8. That was the highest setting they would use for someone of his size. He's been at 8 for the past week, but now they are moving it down to 7. Baby steps!]

We are most excited about the CPAP changes. Hopefully this means his lungs are getting stronger. We're heading in for a visit soon and hopefully will have some new pictures for the next post.

Bumps...

We've talked about the roller coaster of the NICU. Part of that is dealing with bumps on the ride.

On Friday, I had to deal with some bumps. My visit during the day was fine - A was doing good, the nurse was even happy to tell me that his one IV was coming out, and that they would start giving him his daily caffeine dose through his feeds. (Yes - caffeine! Apparently, it helps preemies remember to breathe, and he went on it when he moved to CPAP. He'll probably stay on this for quite awhile.) That was exciting, since he's always had some sort of IV in during his entire stay in the NICU. The only disappointing thing was that I didn't get to hold him, since his temp was a little lower than the nurse wanted (recall the whole swaddling thing from the day before.) Not a big deal, we would be in later that night and would probably get to hold him then.

J & I went to dinner with some friends, which was a welcome change of pace, and headed back to the NICU for our night visit. A was still doing fine, and so John got to hold him first. We were going to switch off after about 10 or 15 minutes. Well, after only a few minutes it was evident he wasn't tolerating it...desats, o2 requirement went up, BLAH!!! The nurse put him back in the isolette, where he continued to be fussy and have small spells. That's when I lost it.

Was this the beginning of the downslide? Why can't we soothe our own
child? How messed up is it that HOLDING our baby could be contributing to
his troubles? What if he has to go back on the ventilator? What if we never get out of here? Why do I have to sit here an cry in a public where everyone in the whole damn room can see me? Why? Why? Why?

Oh, there was no stopping me. The tears kept coming. Our nurse (confused, I'm sure, at my reaction which was TOTALLY not proportional to the event that just happened) slunk away and left J to deal with me. J, as always, was awesome and let me just cry it out, reassuring me that no, we won't be visiting Andrew in the NICU when he is five years old.

We left shortly after, and wouldn't you know that a good night's sleep helped a ton? Saturday brought a whole new attitude for me, and I felt more prepared to face what the day would bring. Good thing, since Saturday brought some bumps for Andrew.

His day nurse for the weekend was Nurse M, the 30+ year vet. Every time we hear her voice, I think J and I just relax a bit, knowing he is in the best hands possible. Nurse M is a pro at IV's - the go-to person for the whole unit. One Doctor said to us one day "Nurse M...she could put an IV in that wall if you'd give her five minutes." We like Nurse M. We were both happy to hear her voice when we called for the morning update.

Apparently, A had had a bit of a rough night. First, he had pulled out his replogle again (the suction tube that goes into his stomach) so that had to be reinserted. Then, later in the night they noticed some blood in the tube. That could be caused by many things, from a minor irritation from the replogle (minor) to an ulcer (more serious) or who knows what else. Luckily, they think it was just a small irritation, b/c the blood changed to brown from red, then stopped entirely by morning shift. They are going to watch it to make sure it doesn't reoccur.

Because of the bleeding, they pulled his feeding tube while they investigated what was going on and to monitor the situation. Since they pulled the feeds, they had to reinsert an IV to give him fluids during this time. When Nurse M looked at the old IV site (left leg), she noticed a little nodule near the insertion point. Which they are also going to keep an eye on b/c it could be an indication of infection. Andrew has been lucky to avoid infections so far - they can be very serious in little guys and hard to treat. Again, monitoring is in order.

For the last bump of the day, when Nurse M put in the new IV (right leg), she blew a vein, and fluid got in under his skin. (Even the best IV nurse has off days) We found out about this during our afternoon visit. I'm not exactly sure of what happened, but now he has a series of small blisters near the site. Of course, these all need monitoring too, b/c if the blisters pop, that would be a perfect place for infection. Hopefully, they will go down on their own and scab up. Yes, monitoring is in order. Also, the increase in fluid made his little leg swell to about twice it's size! It looked really bad, but the swelling went down over the course of the day.

Wouldn't you know it that the next IV site they chose (right arm) started to leak soon after they put it in, and the night shift had to take it out and put another IV in his left arm. Poor guy - what a pin cushion! We were assured that all these issues were just bumps, which we can handle. Nothing about the day yesterday shook me up, I took it all in stride. I guess my melt-down the previous night helped! Now we just wait and see, and hope that these bumps don't turn into anything serious in the coming days.

Another milestone - 1000 grams!

He did it! Finally passed the 1000 gram mark! Of course, that is only 2.2 lbs, so really his is still a (micro)peanut, but we'll take it!

Yesterday and today have been much better for J and I. First, we received some beautiful and yummy treats in the mail the other day - chocolate covered strawberries. We loved the baby boy theme, and wow they tasted good! Thank you Trish and Steve!!

Andrew is still chugging along, and has gained weight two days in a row. He's also doing pretty well from a respiratory standpoint, considering his last dose of steroids was over 36 hours ago. His vent settings have gone up marginally (he was at about 39%, and today he was hanging out around 42%), and I even got to hold him again last night. I'm not sure why I've begun to take pics of his vent settings; I guess I want progress to be witnessed by all. To think that a week ago today when they moved him to the CPAP his initial settings were up to 93%, he really has come far this week!

Never to be boring, Andrew has found a new past-time: pulling out his feeding tube (he has two tubes, actually - a feeding tube that goes into the top of his intestines, and a tube with some suction on it that goes into his stomach to keep out excess air that gets in due to the CPAP machine.) He's been pretty active when he is awake, and he loves to have his hands by his face. Well, two mornings ago he grabbed them and pulled them out, and then he did it again last night. It's mostly a nuisance, since every time he pulls them out and they reinsert them he needs to have an xray to make sure they are replaced in the correct place. This boy is going to be trouble!

The nurses have fought back though, and decided to try swaddling last night. Now that he has no active IV's, they can bundle him up in his isolette. Also, since he is getting bigger now, they want to see how/if he can regulate his temperature a little bit. So, they take off the temp probe, turn down the bed, and periodically check his temp to make sure he's at a good temperature. So far, the swaddling has helped keep his tubes in check, and he seems to like it. (OK, like may be a bit of an exaggeration, but he doesn't hate it!) However, periodically I have noticed his little hands sneaking up and finding their way out towards his face again. Here's a pic of our "Baby Burrito" as I like to call him now:

The picture is a little washed out, but we estimate our little burrito is bigger, but probably weighs the same, as a chock-full Chipotle burrito. (He's much cuter though!) Hopefully he'll continue his weight gain and we can stop comparing him to the size of food soon. (John likes to compare him to the 2 lb. SCUBA weights he uses to help students sink in the water.) Keep growing, little man!

Tired of the Grind

My mom mentioned to me that the other day that when we had talked I seemed discouraged about Andrew's progress, but when she read the blog later everything seemed very positive in my post. Her comment got me wondering if I am only posting on the good days, about the good stuff that is happening. I suppose that could be true, to some extent. On the good days (like the past few posts), I'm excited to share the news and on hard days am less apt to post at all...be it for time reasons, or just pure exhaustion.

The NICU is a grind. It's full of uncertainty. Phrases I've grown to hate regarding the NICU:

• It's a roller coaster.
• Take it day by day.
• It depends.
• Every baby is different.

Each one is true, but none of them bring any comfort to the parents who are worrying about their children. No one says "everything is going to be OK" because no one knows that for sure. While Andrew's progress is amazing, there are still many obstacles he needs to overcome and doubt and worry easily sneak into my thoughts. Some days, all the noise, bells, and alarms around me in the NICU are enough to drive me to tears, and I wonder when (or even worse, if) our sweet boy will be able to come home. Yesterday was one of those days.

• When I got in, Nurse K told us that Andrew has a hernia - two, actually. Hernia's are very common in preemies, and I had read all about them in my preemie book and know they usually aren't too serious. They occur when a loop of intestines slide down into the groin area through a hole in the abdomen wall (that usually isn't fully closed in preemies.) The only way to fix them is with surgery, which will hopefully happen when he gets older and stronger. Unless, of course, they become hard or kinked, which could require emergency surgery (it depends!). Right now there is no immediate danger, and they will check on it every diaper change. Either way, another surgery for my boy at some point! So unfair.
• Andrew's weight gain has stalled. He hasn't lost weight, but has been hovering around 950 - 960 grams for about a week now. It's been on the doctor's and nurse's radar for a few days now, and they have increased his feeds (he's now getting 5.8 ml/hour) as well as the calories in the milk (fortified now to 24 cal/oz). He's still pooing/peeing like a champ, so they aren't worried about any obstructions or his tolerance at this point. Hopefully the changes will get him moving in the right direction (take it day by day!).
• I tired to kangaroo care again, and he wasn't tolerating it all. After a perfect morning, with his O2 requirement down around 37%, he began desatting immediately. We put him back in the isolette after only about 5 minutes. Not the end of the world, he probably just needs some time to recuperate after his big day prior, but disappointing to mom who wanted to get her hands on him again (it's a roller coaster!).
• Andrew got his last dose of Decadron (steroids) today. So now, we hold our breath over the next several days to see if he can hold his own without the help, or how big his backslide is breathing-wise. His oxygen requirements probably will increase, and there is a chance they could have to put him back on the ventilator. We'll just have to wait and see (every baby is different!).
• His temperature probe was acting up, and so the bed alarm kept going off saying he was too warm. Preemies can't regulate their temperature, so they rely on the warming of the isolette to keep them comfy. His temp probe fell off at one point, so the bed began to "think" he was cold (b/c the probe's reading dropped) so the bed warmed itself up. That warmed Andrew up too (when he really didn't need it) and so he was too hot for awhile. No big deal, but the freaking alarm is just so annoying and did a great job frazzling my nerves even more (#!%*!).

In all, nothing really bad happened today. Really, Andrew was holding his own and then some. From the nurses perspective, he had a good day. But, there were lots of frustration for me, and the combination of all the little things had me frazzled. Both J and I wish we could really celebrate each success, but honestly often we both feel like we are waiting for the next shoe to drop. What makes it especially hard is that we don't know how his NICU journey will last. We are tired of the grind. But, we love our son, and will be back there again today and will face whatever the day brings.

Kangaroo time!!

Another great day today for Andrew, and us too! My first surprise was when I got in for my morning visit, A's CPAP settings were down to about 37% O2. Since he had been hovering around 50% for the past few days, I was thrilled to see this. He began a series of steroids over the weekend, which are supposed to improve lung function, and help with inflammation, and they seem to be working! Of course, like everything in the NICU, with every step forward we can also expect some steps back. The doctors and nurses have warned us that with this steroid improvement is usually seen quickly, but once they start weaning the dose and take him off them, there is often some regression. He only has one more day of his 5-day course (they are weaning it already) so J & I are bracing ourselves for potential increase in settings again over the next few days.

A had a new nurse today, which happens when his primary nurses are off. Our NICU has 100 beds, so there are a lot of nurses, and so there are multiple days a week when we get new ones. Luckily, they are all so great (and it is good for us to get different perspectives, so we like it) and today was no different. When I told her that I held Andrew for the first time the previous night, she asked if I wanted to kangaroo. Luckily, I had worn a button-down shirt b/c I was hoping this may happen!

Kangaroo care is basically skin-to-skin contact between baby and parent (dad's can do it too!) Instead of swaddling the baby, the baby lays on your bare chest and a blanket covers you both while you settle back for a good cuddle. They have reclining lounge chairs they use just for this. Kangaroo care has proven benefits to both the baby (less desats, more weight gain, better sleep and temp regulation) and mom (lactation) so I have been itching to do it. If the baby is tolerating it ok, you can do it up to 2 hours at a time, but today I think our session lasted about 45 minutes.

Let me tell you, I was excited last night to hold Andrew, and this was even better! He snuggled right in and fell asleep almost the entire time! The only bad thing about it is since he is sitting so high up on your chest, it's really hard to see him. I've read you can bring in a mirror to check out his little face, so I will try to remember that for next time. He did have some desats (but resolved them on his own), and his nurse C had to turn his oxygen up a little, but she was patient with us and watched him closely. She said he did really good for his first time, and that as he gets used to it, the time we do it will increase. I'm looking forward to the next time already - hopefully I will relax a little bit more (I think I stared at the monitor screen almost the entire time waiting to see if he would desat.)

Nurse C took these pictures for me...unfortunately, J wasn't with me today. We took the blanket off him for this pic, just so you can see Andrew a bit better! Look at his little hand on my chest - so precious!

When we got back for our night visit, we were hoping that John could hold him too, and they let him! After the kangaroo care that morning, A had a great day, so our nurse felt comfortable taking him out again. Andrew looked even smaller in J's arms than mine, but he was just as comfy! I think John held him for almost 45 minutes as well - and Andrew slept soundly the entire time. Notice that J is basically holding up A's head with two or three fingers! I loved watching Daddy hold his son!

While J was holding him, we had a nice visit with Dr. B who was the neonatalogist who helped deliver A 5 weeks ago. We love Dr. B's personality, and both remember his calming presence that night. He came up to me, before I went into the c-section and introduced himself. "I'm Dr. B. I'm the baby doctor. I'm going to take care of your baby." He was so confident, and kind, and while I went into that operating room not sure if there would be a baby to take care of (b/c Andrew was too young to make it) he helped give me a seed of hope. It was great to catch up with him tonight, and for him to say that A is doing really well. He obviously has been following his case, since he knew about the steroid treatments, and was confident they are going to help A get stronger and stay off the vent. That was great to hear!

One more family shot - a great reminder of a big day for all three of us! This one is a self-portrait, and I think it is funny how it looks like A is popping his head in to be included in the pic! Please keep A in your thoughts the next few days and pray that he doesn't have any big setbacks. While J and I are so encouraged and hopeful because of all his progress, we know he still has a long road in front of him. Your love and prayers from near and far are so appreciate by us all.

Great Day!

First, Andrew is doing great on the CPAP. Even his nurse today (who is a tough, 30+ year pro) said that he was doing great...really, really great. His oxygen levels have decreased to around 50% (remember, they were up to 90% when he started CPAP, and hovering in the 60-70 range for the first several days), and his blood gasses look good too, with his Co2 around 45. She said she would have expected his Co2 to be much, much higher based on the xrays of his lungs. So, he's still working hard, and somehow managing to continue to exceed expectations. Lately, I've been sitting by his isolette just shaking my head at how amazing and strong he is.

The best news of the day though is that I finally got to hold him! John has been awesome at advocating for this for awhile, and now that A finally settled down and was maintaining his oxygen levels, our awesome night nurse Nikki took him out for me! Getting him out was a bit of a challenge (making sure all his tubes and lines came with him), and I have to admit I was pretty nervous. She warned us that he might not tolerate it, and we could expect desats. Before I knew it, he was in my arms!
I only held him for about 10 minutes, but what a great 10 minutes that was! He had his eyes open for part of the time, and we got our first real mother/son moment. And, the boy didn't desat once! Before she put him back in the isolette, I got to kiss his sweet head for the first time as well. Hopefully, we'll be doing much more of this, and I can't wait for John to hold him as well. He is still so light, it was kind of strange to have him wrapped up in my arms. But it felt good. What a day! We're blessed!