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!



Waiting in Limbo

                Last few days Gibson has been doing great.  He loves his new ventilator and just can’t wait to be extubated! He has started to throw little temper tantrums that make him gag and then coughs which break up the mucus and then the nurse has to suction his lungs.  Just a terrible cycle that he goes through and he hates it!  Getting the tube out will solve all those problems.

                The only thing holding us back from getting extubated is fixing his partial bowel obstruction where the hernia is.  In the upper GI he had a few days ago did show that the small portion of the herniated bowel is partially obstructing the flow through his digestive tract.  Sounds like a fairly simple fix, but the surgeons are very hesitant to reopen his incision just to fix just a ‘partial obstruction’.   It has been frustrating but you can’t question the surgeons.  They are professionals and know more than we do and are doing the best for Gibson.  Although he really only has one lung, we don’t want to risk him aspirating again and harming his good lung after all the progress he’s made so far. Without the surgery we can’t really move forward.  He can’t start feeds again or get extubated. He’s just hanging in limbo right now.  The sooner we can get him going on feeding and breathing on his own, the sooner we can get him home! J  Just hoping that Dr. Barnhart will see where we and the nurses and NICU doctors are coming from with the surgery and he’ll decide to do it and help Gibson’s progress. 

                Everything else is going awesome!  We are able to hold Gibson everyday for about an hour each, isn’t much but it makes our day every time.  We can’t wait till he’s extubated and we can pick him up and comfort him when he needs it or we need it. We love our NICU team and how well they take care of our baby. It definitely makes this journey an easier one.

 X-Ray showing the obstruction.

 The dang hernia.

 He's not so sure about the rattle, but we thought we'd let him play for a bit.

 First time wearing clothes!! Our nurse had him dressed and surprised us. Kaydi got teary eyed.

 Somehow he managed to fit his finger in his mouth with the tubes. Super cute

 Finger puppets. He reached up a couple times.

 His new snuggle partner in bed. Babies like them because it puts pressure agianst their bodies when they're sleeping so they don't feel alone. It's like a rice bag thing. 

 He got caught tugging at his tubes and was upset.

And here he is doing it again... He doesn't know what else to do with those long fingers. He likes to keep us and the nurses busy :)

Just Waiting...

Gibson is doing well.  He has had a couple days of relaxing and letting the doctors try to decide what the next step is to figure out his digestive tract problem.  They have discovered that some of his bowel is herniated through the abdomen muscle wall where the incision was made.    Dr. Coulter and the surgeons are both trying to decide if that has been the cause for the bile to be backing up into his stomach, or if there is something else wrong.  Before they make any real decisions they are going to do another upper GI tomorrow to see if there is something new that has developed.  They are also going to be able to see if the portion of the herniated bowel is blocked or working at all.  Once they have determined that  they will decide when and if to do another surgery to repair the hernia. 

                Gibson is very ready to be extubated and get the tubes out of his throat.  You can just see it in his eyes and the way he acts that he is ready.  He is breathing awesome on this new ventilator and once the decision about surgery is made they can talk a little more again about extubating. 

We were able to hold him again today and we all love it! Gibson just calms right down whether he’s sleeping or just looking around he just loves to be cuddled.  We definitely aren’t complaining about it!  We should know more tomorrow what the doctors want to do….

Another step forward!

We have a new Dr. that started his rotation Saturday. Dr. Coulter was talking about possibly doing some trial runs towards getting Gibson off of the oscillating ventilator. They turned it off last night and his CO2 (carbon dioxide) sky rocketed but he was still breathing well. Instead of extubating (pulling out the breathing tube) they decided to switch over to the conventional ventilator. This type of breathing system still aids him with the pressure he needs to keep his lungs expanded, but he is able to breathe more on his own and has more natural breaths than really fast breaths that helped keep the CO2 levels down at a normal level. Gibson is doing well so far with this. He’s maintaining his oxygen and CO2 levels well. His lungs are both expanded still. There’s a fear that his left lung (his smaller lung) could collapse without the higher pressures from the other ventilator. So far so good. Depending how he tolerates this change over the next 48 hours the next step is to wean the pressure of this vent down to be extubated and use a high-flow nasal canula.

 We took a field trip down to Radiology again today for a lower GI test. They administered a contrast enema to watch with x-ray as it went up through the colon and into the lower GI tract. The Radiologist thought there could be some narrowing in the small intestine which would require surgery to fix. The upper GI we had 2 weeks ago looked normal as the contrast made its way down through. We may need to do another upper to decide if anything has developed since. The surgeons are going to meet and decide what they think of the report and the scans to come up with a plan and if action needs to be taken. We’re sick of waiting and want him fixed so he can eat and get the strength and nourishment he needs in order to recover faster. In the mean time he isn’t getting any more milk so he doesn’t back up more than he is. We should know more tomorrow.

Gibson know how to shoot dagers with his eyes!



Stretchin!!

Our nurses let us hold him again today. It probably won’t be a routine thing, but it’s so good for all of us and he tolerated it well. He seems to settle down and stay comfortable and know he’s protected while he’s swaddled and in our arms. Love him!!