Started Feeding Through NG tube

Good news! Gibson didn’t throw up after they discontinued the Anderson Tube that goes into his stomach. They started a small amount of milk that they give him every three hours and he has tolerated it well. When they pull back on the tube with a syringe there isn’t anything down in his stomach which means it’s moving down through, how it’s supposed to be doing. This morning in rounds they increased the amount they’re giving him and so far, so good. He got a little fussy after a feeding earlier so we’re thinking he was just full and it might have been a little painful for him. His stomach is super small and this is the first time he’s ever had milk in it. Before when they attempted feeds, the milk went directly into his intestines. His stomach needs to stretch out…a lot. Another good thing is that he’s taking a binki more easily now when he’s tired and of course when he’s in the mood for it.  While they are pushing the milk into his feeding tube they are also putting a few drops of milk in his mouth with a syringe and having him suck on his binki so that he associates sucking with tasting milk and getting full.  He doesn’t always suck on his binki but he is swallowing the little bit of milk just fine.  He is also learning to swallow his own spit and not blowing so many bubbles.  This helps break down his food because it has natural enzymes in it. One of the hardest things for all babies to learn is how to coordinate feeding through a bottle.  They need to learn how to suck, swallow, and breathe all at the same time.  Gibson seems to be picking things up fairly quick, but we are moving at a very slow pace to insure that he doesn’t have any major setbacks.

They are also weaning the flow or pressures that the High Flow is blowing into his nose.  He started at 6 liters which is very high for a baby his size.  He did so well with that amount that they are starting to wean his flow by .5 every other day.  We went to 5 liters today and their goal is 2. Once we have reached that amount of pressure we can possibly talk about just normal oxygen canulas without pressure.  It all really depends on Gibson and how well he is oxygenating and how he is holding his sat levels.  If he can’t handle weaning that fast they will go at the rate that Gibson wants.

Gibson is a very happy baby when’s he is awake, but he is starting to sleep more like a normal newborn because his body has to do a lot more.  Between breathing more on his own and feeds he is getting warn out faster.

He was smiling so much but of course never for the camera...

Oh so sad!

Getting some of moms milk.



Mom got to feed him!




Sweet Dreams.



Sucking on his Binki all by himself.



Dressed and ready for summer time.



Another Day of Firsts...

Gibson had another day of firsts today.  When we got in this morning he was sitting up in a cute, little bouncer chair.  He loves to bounce around and the chair was the perfect thing for him.  Also the Physical Therapist came by and worked with Gibson some more.  She pulled out a little gymnastic mat and put Gibson in a Boppy and just played with him.  She’s been working on his neck muscles to try and strengthen them.  Where Gibson has just been laying on his back this whole time his head is still a little misshapen, so the PT works with that and getting him off the back of his head.  She also is doing a few things orally to help with oral aversion.  She teaches us positions and techniques on how to work with him so that we can help him everyday where she can’t be there for him all the time.  Gibson is doing awesome through everything!  He doesn’t get mad or throw fits. He just does what he needs to and then takes a nap.

We are able to hold him whenever we want to.  We have been given the green light to get him in and out of his crib. It makes us feel like we’re his parents and we are taking care of him like a normal baby.  He has had a huge week and is progressing so well.  Even though on the respiratory side of things we are making good progress, we still need to figure out his digestive tract issues.  He did have a couple bowel movements last night which is a very good sign that things are starting to move around down there.  A surgeon came by today and said because things are sounding better in his bowels and with the couple poops he had we could pull the Anderson Tube out of his stomach.  We are very nervous because in the past every time we do something with the Anderson Tube that suctions his stomach, he usually throws up.  Last thing we want or need is for him to aspirate into his lungs and possibly have to be re-intubated.  We trust the doctors here completely, but it is scary especially with the progress we have made; we don’t want to go backwards.  If he doesn’t throw up or have any problems for a day or two they will put a feeding tube into his stomach and start Gibson on mother’s milk.  We hope and pray that everything starts moving normally through his intestines so that we can start feeds and move to trying a bottle in a few weeks. 



Mom can finally dress him in his own outfits!




Oh so tired!



"No more pictures, I'm trying to sleep!"



No more tube hangin out of his mouth.





Loves his new chair! Puts him to sleep everytime.




Working with the Physical Therapist.





Chillin in the Boppy



First hiccups with his new voice.

Crib Baby!

Big birthday surprise this morning….a BIG BOY bed!! He’s 7 weeks old today and our nurse had him all settled in a crib! Mom was so excited she cried and hugged her haha. He has a mobile with bright colors that plays music and turns for him above his head. Don’t worry; he still has the shiny disco ball (that’s the first thing I looked for).  He loves his new bed and that he can lay more upright. We’re hoping gravity can maybe help out his gut. There’s a little storage area under his crib where we have his books, toys, clothes, and other stuff.  It’s so nice for all of us.  We can be more independent parents, Gibson is more comfortable, and the nurses don’t have as much work to do since we can do more. J But they’re always there to help us if we have a question or get all tangled up with the tubing and wires.

                Gibson is back to wearing clothes too! His incision is looking great and is drying up nicely. He gets really warm when we hold and cuddle him while he’s swaddled so we air him out before he gets mad. He tends to hold his breath when he gets upset and turns purplish red and sweats so bad. It’s a lot for him to get used to all at the same time; being held, swaddled, and being dressed. He’s getting used to it though and loves being held and swaddled. Just like any boy he’d probably rather not be dressed, but mom and the nurses love to see him dressed in his cute onesies.

                Gibson had a really good night. They do baths every other night and so we were able to do his bed bath on our own since he doesn’t have the breathing tube anymore. He had his moments of hating it, but after a lot of pep talking we made it through the whole deal ok and he slept great afterwards. Mom loves rocking him to sleep after his baths because he smells so good just like a baby. Best smell ever.

                We had a good run with Dr. Coulter and got a lot accomplished on his rotation. He was a really nice and smart guy. We really enjoyed having him look after Gibson. He reminds us of Hook with his wig off lol…We’ll start with a new Dr. Saturday morning and hope to keep progressing. Dr. Null is always back and forth from here, home, and traveling to speak at conferences. If he is out of town he calls in to check in on “his boy.” J We’ve adopted him as a grandpa. You can never have too many of those.

                His new favorite things to do are:  smile, blow bubbles, make noise, and look at faces. He’s not really staring down the staff as much anymore. Hopefully he will start to trust them more now that the worst is over. He’s so funny when someone comes up to his bed. He gets nervous and looks at us like, “What are they going to do? Is this ok? I’m nervous.” He says so much through his eyes and eyebrows. He’s very expressive! He’s so curious about what’s going on around him and is really receptive to noises and voices. All good signs!

Big boy Crib!!!

He loves his new set up!



Little pep talk...





Learning how to suck on the binki, hoping it'll speed the feeding up when we get there.



Bed time stories.



Doesn't get any better than putting your kid to sleep while reading.



High Flow Now!!

Gibson handled the C-Pap great!! They slowly came down on his pressure settings throughout the night and he tolerated it perfectly. His oxygen sats were maintained at an acceptable level and he slept comfortably. He’s still on morphine and versed drips for his pain and anxiety so he’s not doing it all on his own, but he didn’t need as many extra boluses of meds as he needed throughout the day yesterday. So that’s good! He sucked on his binki a couple times and on his nurse’s finger too. It took awhile for him to actually suck and not push it out with his tongue, but he did it! We’ll continue to practice with him and try to teach him that there are actually good things in life that can go in his mouth! J

When we got here this morning they told us he was going to go on a high-flow nasal canula!!! We couldn’t have been more excited and so happy! We’re so proud of him. High-flow is a continuous flow of oxygen that is strong enough to get to his lungs but not the added pressure to keep them expanded. He also is still able to receive Nitric Oxide with the oxygen to help with his lung high blood pressure. It’s a medication he has been on since Day 1 and it will be the last med he’s on before he’s discharged. When they took off the c-pap and started the high flow he woke up for a few seconds and went right back to sleep. It was a MUCH easier transition than what he went through yesterday.  From here we’ll just sit tight on the high-flow and they won’t wean the oxygen or do any trials on lower settings. He will have to come off the Nitric Oxide first and he needs that high flow of oxygen to carry the medicine directly down into his lungs. He’s a happy boy without the tube and his c-pap get up!

Gibson’s voice is harsh and raspy and quiet, but he’s starting to coo more and kind of sigh when he’s sleeping. He’s definitely liking being able to make sounds just like a normal baby and surprises himself when he pushes out a louder squeal. He’s so cute and it’s so fun to watch him move forward toward “normalcy.”  He will probably graduate to an actual crib instead of an open warmer sometime over the weekend or next week. He can definitely maintain his own body temperature. He’s a big, sweaty baby. They like to keep the sicker babies in an open bed so they can watch and monitor them more closely.  Now that he is getting healthier he’s getting swaddled and is for sure warm enough so moving forward like the other big kids is great! He can’t wait!

We were told today we will be here for at least 12 more weeks. It depends if there are any more set-backs and how he tolerates feedings and his progression with that. The Nitric Oxide is the last med for them to wean and they do it extremely slowly. He was a very sick baby when he was born and we definitely all want to send him home healthy. We’re not anticipating ever coming back to the unit other than to say hi and visit our hospital family of nurses and doctors. We love the staff here and how well they take care of our little man. They love him too and we can always tell. There are always so many people coming in and out of his room to check on him and to say hi. He’s so loved!!

Extubated!!

The last few days have just been recovery for Gibson.  He has had some ups and downs along the way but we’re hopeful that his intestines will start to work after being manipulated so much in surgery.  We haven’t started feeds just yet. Doctors are mainly waiting for his insides to heal and wake up before we talk about starting him on feeds.  He’s still on a fair amount of morphine since he had a very invasive surgery a few days ago. Narcotics slow down the gut and the movement (peristalsis) of the intestine is still asleep and maybe paralyzed for some time which they call an ileus. There is still a fair amount of bile getting backed up into stomach. This is the main indicator of when Gibson’s bowels are starting to move stuff through.  Once his stomach fluid starts to clear up, there is less coming up from his Anderson tube from suction, and possibly have a bowel movement or two, they will probably start giving milk through a feeding tube. He does have bowel sounds so we’re continuing to be optimistic and to be patient.

Biggest event is Gibson was extubated today!  They pulled his breathing tube out and put him on a C-pap Nasal canula.  This blows a frequency of air into his nose to help with pressures in his lungs to help keep them expanded. This is what the ventilator did for him but without the little breaths to help him out.  It’s a very awkward feeling to have air blow into his nose and out through his mouth when it’s supposed to go into his lungs.  He is doing ok with it; he’s just very agitated and touchy.  This is better than having a tube down his throat to breath but it is just temporary till he gets stronger and can hold a lower pressure at lower oxygen setting while having high oxygen saturation.  Change is very hard and scary but needed.  Gibson was doing so well with his breathing tube and we were very worried about changing his breathing system, but there is no progression without change here in the hospital. Gibson just needs to learn to breath and relax on this new system.  He is very strong and is a fighter so we are confident that he’ll keep progressing and moving towards going home.

Before Extubation



First time seeing his face without tape or tubes. Cutie Pie!




He didn't have any support for about 5 minutes and he did so good!




Checkin out his RT. Trying to figure out what she's going to do to him.





Smiling with dad!



Mom saw his first smile yesterday and finally got one with the camera. CUTE!



Not really sure if he's liking this new thing. The air that is blowing into his nose comes out his mouth and makes all his spit bubble up.  He likes playing with his bubbles.




Nasal mask instead of nasal prongs.  He prefers this one.




That can't be comfortable



His new set up.

We are so appreciative for all the thoughts and prayers from individuals, church groups, prayer groups and families across the country!  We are so amazed at the love and support from people we have never met and from friends back home.  Your thoughts and prayers are very much felt here at Primary Children’s! THANK YOU!!

Surgery is Done!

Surgery is done!  We were scheduled for 12:30 surgery time and got in to the OR closer to 2:00.  We didn’t hear from the surgeon till 6:15!  It was a little scary waiting for almost 5 hours when we were expecting a 2 hour surgery.  Long surgeries usually mean there was something else wrong but everything went great.  Dr. Barnhart, the surgeon, said the herniated bowel wasn’t the main problem and there were some adhesions or scar tissue that was obstructing the small and large intestine.  He found that there was an adhesion on the small intestine that he ended cutting out, about 2 inches.  Also on the large intestine he cut out about an inch of adhesions that were slowing it down.  Dr. Barnhart is confident that he found and fixed the problems that were causing Gibson’s digestive tract to not work correctly.  Surgery went longer than expected because Dr. Barnhart was so thorough and wanted to make sure he checked everything so he wouldn’t have to re-open Gibson again.  He is an amazing surgeon and we are so grateful he has done all of Gibson’s surgeries.  Gibson did well and is still doing really well right now.  He is still heavily sedated which is keeping him very calmed and relaxed for the next few days while his body recovers.  If everything goes well with the recovery of his intestine we might start feeds again next week. It all really depends on how Gibson is recovering.  We are just so thankful everything went well and hoping that Gibson will be able to start feeds next week and start getting stronger.  

Surgery Tomorrow

Surgeons have finally decided and we are having surgery tomorrow at 12:30. Yay! We are all hoping and praying that everything will go well and this will be the magical fix to get his bowel working.  Dr. Barnhart, the surgeon, thinks he will find some scar tissue causing the obstruction.  If that’s the case he will cut that portion out and stitch the good bowel back together.  If it’s just from the hernia he will repair that with a few stitches and a dissolvable patch.  Depending on how much the surgeon has to do, Gibson could be extubated by the weekend and starting feeds soon after.  It all depends on how Gibson recovers and how much sedation they have to use, but this should speed up Gibson’s recovery.  Keep your fingers crossed and prayers are gladly accepted. We’re thankful for Gibson’s guardian angels and family members who have passed on who are always with him and keep him protected when we are not with him. It’s always scary to leave him alone and with strangers at night and during surgeries or procedures, but we believe he’s always being cared for by people who truly love him and he knows. J

Today Gibson laid on his tummy for the first time ever and loved it!  We were able to hold him lying on his stomach on our chests.  It was the best cuddle session we have ever had.  There is just something about cuddling with a little baby that puts you right at peace.  Mom held him for about 2 hours and dad had him for an hour and a half and he just slept and hung out the whole time.  Best sleep he has had since he’s been born. 

Drooling down his chin

Loves his tummy time

Gibson and we have been working with Physical Therapists/Occupational Therapists for the last two days.  They have checked his reflexes, muscle development, and joints.  So far everything is looking good.  The main goal we all have is to help him not have oral aversion too bad and to help form his head.  An oral aversion occurs in a new born when they have been intubated for a long period of time.  Gibson has had tubes down his throat for 6 weeks and in his mind everything that goes in his mouth is a bad thing.  He has been really gaggy and doesn’t let anything in his mouth the last few days.  This is a concern when it comes to bottle feeding in the future.  They have taught us a few things that we can try to help him relax and start sucking on our fingers or a binky. Things like our fingers, pressure points, flavored chap-stick, and flavored mouth swabs will help us show him that there are good things that can go into and around his mouth.  Just hoping the learning process of feeding in a few weeks goes smoothly and we can get him home as soon as we can and when he’s ready!

Mothers Day was great!  Mom had her best Mothers Day ever and Gibson gave her a great present.  He peed on her!! Haha.  Funniest part was she was bragging to her mom just hours before that he hasn’t peed on her yet.  She thought she was invincible and he had to put her in her place.  We all enjoyed a good laugh and Gibson was just happy that he could give mom her first pee bath.

Everything is going great down here and we are just so excited to get Gibson all put back together and start him feeding again.  We love and appreciate everything that everyone is doing for us. We love PCMC and the staff they have here.  Thank you for your thoughts and prayers they are all felt here!! 

First time sitting up, he wasn't sure if he liked it.



He loves his disco ball especially when you put a light on it!