Our little burrito - March 12, 2014

No real update today.  He spent all day wrapped up like a burrito and he loves his pacifier!

March 11, 2014

I started doing laundry this morning and emptied the hamper onto the floor.  Our golden retriever Tristan dug through the laundry and found Ryan’s outfit and pulled it out and took it to his bed and curled up with it and started licking it.  I took it away from him and put it in the pile of laundry and surrounded it with the other clothes so he wouldn't notice it.  I went to the bathroom and came back and he’d found it again and was curled up with it and was snuggling with it and licking it.  He’s definitely interested in Ryan’s smell.  He was being cuddly and gentle with it, so I think that’s a good sign!  I didn't want him to ruin the cute outfit, so I brought a hand me down receiving blanket to the hospital today and we’re going to swaddle him with it and bring it home for Tristan and Raney to sniff.  That way, they can curl up with it all they want and it doesn't matter if it gets ruined.

I held Ryan skin to skin today.  It’s called kangaroo care and it’s been shown to be very beneficial to premature babies. The baby wears just their diaper and is held against their mom or dad’s chest so they can feel their parent’s warmth and feel their heartbeat.  It helps keep them warm, helps regulate their heart rate and breathing and has been shown to reduce the amount of time they stay in the NICU.  It also helps with bonding on both sides.  Ryan loves kangaroo care.  Even if he’s crying, he stops as soon as he realizes he’s with Mom and he sleeps peacefully.   Before he was stable, his heart rate and oxygen saturate rates would immediately stabilize.  I held him today and he was sound asleep.  When I started to put him back in his crib, he woke up, reached for me, tried to wrap his arms around me again and started crying.  I felt so bad putting him back in his crib.  I wish I could take him home with me.   It gets harder and harder to leave without him every day.

He has anemia, so they’re giving him medicine that stimulates his bone marrow’s production of red blood cells.  It takes 10-14 days to start working and he’s been on it about a week.  I’m praying that it works so he doesn’t need a blood transfusion.

His other new hobby is pulling out his nasal cannula.  Almost every time I look at him, it's out of his nose.  He somehow manages to pull it out even when he's wrapped up like a burrito and can't get his arms out.  He's on monitors and is breathing fine even when it's not in place. so it doesn't seem like he really needs it.

Having the nasal cannula over his eyes doesn't really help much.

NEC Update - March 10, 2014

The surgeons looked at Ryan's incision and it's healing well and doesn't need to be packed anymore.  It sounds like he will be going home with his ostomy bag and will go back to the hospital in a few months for the surgery to get his intestines put back together.  Unless the baby is having a problem with his digestion, it's preferable to wait until they're a few months older before putting them through surgery because they'll be better able to handle the surgery.  Right now, his food goes through the digestion process up to the intersection of his small and large intestion and then is diverted out of his body into a bag.  Some babies have a problem with dumping, which means that the food isn't digested very much and is just passed through the small intestine and into the bag.  If a baby has problems dumping, they'll put the intestines back together sooner.  His lip and nose surgery will be between 3 and 6 months, so the surgeons will need to coordinate the timing of the two surgeries.  I asked if they could be done at the same time to minimize the amount of times under anesthesia and they said no.  There would be risk of cross contamination because the surgeries are on the opposite ends of his body.

In other news, he likes being in his open crib and getting to snuggle with his cute blankets and his monkey.

A big boy crib! March 9, 2014

Rob was off today, so he came to the hospital with me and held Ryan.  Ryan held his finger and Rob cuddled with him and talked softly to him.  I think I love my husband even more after seeing how sweet he is with our son!

Ryan is in a crib now instead of an isolette!  The other news of the day is that he is officially off of the TPN and back on full feeds.  The plan is to start feeding him by mouth in a few days. They also weaned his nasal cannula to 1 liter/minute.  That's the lowest the machine can go, so the next step will be breathing without any help.

Our little fashionista! March 8. 2014

Ryan is continuing to do well.  No news means good news in the NICU.  He’s still on 2 liters/minute on the nasal cannula.  With his cleft, they estimate that he’s only getting about 1 liter/minute of support because some of it escapes through his cleft.  They plan to wean him to 1 liter/minute soon and watch him for a few days and then get rid of the nasal cannula.  They anticipate him breathing without any support in a week or two.

I didn’t kangaroo hold him today.  He had clothes on and I didn’t want to disturb him, so I held him with his pajamas on. He was so content and just slept.  He ended up having 3 outfit changes today.  He's outgrowing preemie clothes, so every time his nurse changed his diaper, she put him in a new outfit.

6 weeks old! March 7, 2014

Ryan is 6 weeks old today!

The craniofacial surgeon came by to look at him today and his cleft has gotten much smaller now that he’s a little older.  They don't know what happens to clefts as babies get bigger in utero, where he should be, but one possibility is that now that he's bigger, the cleft is proportionally a lot smaller.  The surgeon said that all clefts are different, but his cleft is pretty typical, not extra wide, and should be a routine fix.  His lip and nose will be fixed early, when he's 3-6 months old adjusted.  Adjusted means that the time is measured from his due date, not when he was born.  Prior to the lip and repair surgery, there are different methods they can use to approximate the skin and palate so that when they do the surgery, they don't have to pull things together as far and the result is better.  One of the methods is taping.  It's just what it sounds like.  They pull the skin closer together and tape it so it grows closer together.  The surgeon decided Ryan was a good candidate for taping and started taping today.  The surgeon was also going to tape a stent into his nostril to start lifting that side up, but he has the nasal cannula prongs in his nose, so coincidentally that's already doing the same thing.

He's grown enough that he ready to be in an open crib instead of his isolette.  He needed to be able to control his own body temperature and have gotten rid of most of the things connected to him.  They've been asking someone to bring down a crib for the past few days and for some reason, they haven't done it yet, so they’re using the isolette as a crib and leaving the top open.  Now that he'll be in a crib, they said I can bring in some receiving blankets to personalize his crib!

I kangaroo held him today for about 3 hours and he loved it!  He relaxed and slept the whole time he was snuggling with me, occasionally lifting his head up to look at me and change sides.  Holding him like this is relaxing for me too and snuggling with my boy makes the time fly by!

Lots of Good News! March 6, 2014

We've gotten a lot of good news about Ryan in the past few days.  He’s 4 pounds 12 ounces and is rapidly outgrowing preemie clothes.  He’s wearing newborn clothes now!  They're continuing to wean his breathing support and he's on the lowest level of breathing support.  He's been breathing by himself and is just getting a little pressure through a nasal cannula (prongs in his nostrils) to make sure his smaller airways stay open and he's breathing room air and doesn't need any additional oxygen.  He pulls the prongs out of his nose a lot and does fine when they’re out, but he would get tired if he had to do it without any help for a long period of time.  He just needs to grow a little more.

Now that he's feeling better and doesn't have the tube in his mouth, he's been a different baby.  He's more comfortable, alert and interactive.  It's so nice that he doesn't have to deal with the irritation of having a tube down his throat.  Every time they moved him or turned his head, it would irritate his throat.  I know when I've been intubated during surgery, my throat hurt for a few days after surgery.  I can’t imagine having a tube in my throat while I was awake.

He's very curious and watches everything around him. When I was holding him yesterday, instead of going to sleep, he kept his eyes open and looked up at me.  He even leaned his head way back so he could see me better.  So sweet.

His NEC infection seems to be gone. He's off of the antibiotics and they've started feeds again.  For two weeks after the infection, he could only eat via IV.   It’s called TPN and it has all the nutrition babies need.  They’ve been weaning him off of the TPN and gradually adding breast milk by feeding tube.  He’s on almost all breast milk and has been tolerating it well.  The doctors anticipate starting to try feeding by mouth on Wednesday or Thursday.

The physical therapist comes by routinely to observe all of the babies.  She said that Ryan is doing well.  He loves his pacifier and she watched him suck on it.  He can get a good sucking motion and hold it in by himself.  Most babies with clefts and a lot of newborns without clefts can't get the suction required to hold a pacifier by themselves.  Babies with clefts can sometimes get compression but not suction.  Ryan has a strong sucking motion and has a rhythmic sucking pattern, which is a good sign neurologically.  

The physical therapist and doctors all repeatedly comment about how strong he is.  He pushes himself up and can lift his whole torso up.  He’s also good at self positioning, which is very good for his age.  The nurses put him in his bed on either his stomach or back and face his head a certain way, alternating sides so his neck muscles don’t get tighter on one side and so he doesn’t get a flat spot on his head.  When he was intubated, they positioned him so he couldn’t move and disturb the tube.  Now that the tube is out, whenever he doesn’t like the side they put him on, he’ll move and switch sides until he’s comfortable.

The nurses and doctors all love Ryan and talk about how sweet he is.  He loves to be held and talked to and touched.  He’s self soothing and very easily soothed.  His nurse yesterday said that you can turn his whole world upside down and then touch his back or pick him up and he immediately stops crying and is happy again.  She said it’s very endearing.