3 Months Old!!

            

             Happy 3 Months Gibson!!! Our time here has flown by and we can’t believe it’s been three months already. We’ve become very close with our nurses and doctors and the famous Dr. Null that we always talk about. They’re our people and take great care of all three of us. It’s been so nice to make friends and laugh and enjoy Gibson and his big personality. We’ll forever be thankful for this experience and that one day soon we’ll be returning to Idaho as a family of 3! J

With Gibson’s diaphragmatic hernia and being intubated and extubated twice, he was at a high risk for having vocal cord paralysis. He has been without the breathing tube for a few weeks and has had a very quiet voice and cry. His cry kept slowly improving over the weeks, but never as loud as we all had hoped for within that time and knowing the risks that were possible. An Ear, Nose, and Throat Doctor came to his bedside and lead a tube down his throat with a camera on the end to look around his voice box. Luckily, he was able to find what he needed to and we were able to know exactly what and if something was affecting him. He found his right side of his vocal cords to have paralysis. After finding that out, we all immediately decided it was best for Gibson to discontinue breast feeding. Vocal cords produce voice when air that is held in the lungs is released and passed through the closed vocal cords, causing them to vibrate. When a person is not speaking, the vocal cords remain apart to allow the person to breathe. Someone who has vocal cord paralysis often has difficulty swallowing and coughing because food or liquids slip into the trachea and lungs. This happens because the paralyzed cord or cords remain open, leaving the airway passage and the lungs unprotected. Because of this risk of aspiration they wanted to do a swallow study to check if he was getting milk into his lungs. He went on another field trip to radiology and drank barium from a bottle while the radiologist took x-rays to follow it and see where it went. It immediately went into his lungs so they stopped that bottle and switched to a thickened version of the barium. Good news; he passed!! So new eating plan. He is taking a bottle instead of breast feeding. We mix the fortified breast milk with a thickener and feed him four times a day with a bottle. He doesn’t drink much compared to his full feeding, but for him he’s doing great! It’s a lot harder for him to pull the milk out now that it’s thicker than regular milk, but he’s doing it and liking it! He gets worn out and goes right to sleep afterwards.  The remaining milk that he can’t get from the bottle goes into his feeding tube.  Good news is the doctors think that his vocal cord wasn’t permanently damaged and that over time, as Gibson continues to get stronger his vocal cord will heal itself. 

            Mom and Dad have both put the feeding tube down through his nose into his stomach as practice for when we do go home. The light at the end of the tunnel is getting brighter. Gibson has made amazing progress! He’s tolerating all of his meds orally. He is off of the Nitric Oxide that helped keep his blood vessels open for the lung blood pressure and is doing great without it. They are slowly coming down on the high flow and he will be on regular oxygen soon.

            We’re sorry for not updating as much as we used to. Always remember no news is good news. Since Gibson is no longer “critical,” there isn’t much change from day to day like there was before. He’s still sick, but has definitely come A LONG WAY!! We are so proud of him. He amazes us every day. We still can’t believe how cute he is. He gets cuter by the hour. We’ve been busy enjoying our baby and getting to know each other. We are so excited for the day to finally be parents and not just “guardians.” Gibson has been clicking his tongue and smiling so much. We can’t believe how happy he is after all that he has been through. He loves life. He loves people. He’s the happiest baby!!

10 Weeks!!



Gibson is 10 weeks old!!  Time has gone so fast and we can’t believe how much our little man has gone through!  We are so proud of him! We apologize for not updating for a few weeks but we had some computer malfunctions.  All is well here and Gibson has made some serious improvement from last time.  We couldn’t be more grateful for all the thoughts and prayers that have helped us and Gibson make it this far.  Thank you to everyone!!  Here’s a brief summary on how things are going and what improvements he has made.

Feeding: Gibson in now at full feeds through a Nasal Gastric tube (NG).  They are mixing mom’s milk with some fortifier to help with weight gain and to assure that Gibson is getting the calories needed to grow.  He weighs about 10 pounds right now and they like babies to gain an ounce a day. He’s starting to gain weight consistently now with the fortified milk’s help. Mom has started to try to nurse once a shift to help with Gibson’s oral aversion.  He’s still not too sure about having to work for his food, but he is slowly learning and trying very hard to eat without a tube.  As we get Gibson off some meds and his High Flow Nasal Canula we will be able to try oral feeding more aggressively.  The whole suck, swallow, breathe thing is a lot of work.

Bowels:  Gibson’s bowels are working perfectly now!!  He is having regular bowel movements and is trying really hard to have blow outs for mom and dad.  So far nothing too serious on the code browns but we know it is coming. He did have one for his favorite nurse, Meghan though.

Medication:  The weaning of medication is one of the longest and most frustrating parts of the whole NICU process.  Gibson’s body from day one has had to rely on meds like Morphine and Versed to help him through this traumatic time.  Now that we are taking that away from him, his body is withdrawing from those medications.  The weaning of versed has gone smoother and we are completely off that and are on a drug called Ativan.  It and Versed are sedatives to help with Gibson’s anxiety.  Ativan is a longer lasting drug than Versed so the doses are smaller and will help with the withdrawls.  Morphine takes longer to come off of, but we are making progress and Gibson is handling it well.  All meds now are given orally through the NG tube.  Sometimes kids react differently to oral meds but Gibson has been doing so well!  Having oral meds now means no more Picc Line or IVs!! YAY!  We officially have no more med lines running all over the place.  Just his nasal canula and NG tube!  Gibson is still on Nitric Oxide which just blows into his nose with the oxygen.  This is for his Pulmonary Hypertension (high blood pressure) and helps with reconstruction of the lungs and the pulmonary blood vessels.  We will be off NO here in the next week or so then we’ll be able to see how Gibson does with just oxygen and not the added pressures of air blowing in his nose.

Lungs:  Gibson’s right lung (good lung) is doing most of the work and is doing a great job at it.  His right lung has expanded width wise in order to compensate for the lack of lung on the left side.  Normally a lung will just fill up its side of the chest cavity from the sternum to that side of the rib cage.  Gibson’s right lung however, is expanded so much that is goes from the left side of the sternum all the way to the ride side of the rib cage.  Much larger than a normal size lung but it’s what Gibson needs.  His left lung is bigger but it’s still a small sliver of a lung.  It is helping out with the oxygenating and will continue to grow and develop some but will never be a full sized lung.  On the respiratory side of things Gibson is doing very well and can’t wait for the day he can breathe fresh air. 

I love my sponge bath!



Showing off my new socks. Thanks Kostner!

Laughing at George the Giraffe.



Still love the Disco Ball.




Had 2 month shots :(



So tough during my first shots!

Ready for summer.



Not too sure about the PT chair therapy.



LOVE THE BOPPY

Look I can hold my own binki!



Super Baby



Check out my socks!

Missed my mouth trying to put my chapstick on.



Big George the Giraffe is scary!



I'm so POGI (tagalog for handsome).



Laughing at my dad




So funny



Bedtime stories.



Will someone pick me up?? P Pl Ple Please




This is the face that has made him so spoiled and believe us he knows how to use it!




How could you not just pick him up to cuddle?



I'm starting to hold my head up some on my own.

Tummy Time!

Gibson

Gibson is doing very well.  Since our last post, Gibson is having regular bowel movements and up to full feeding through a feeding tube.  We haven't tried bottle feeding yet but in the next couple weeks we will get to that.  The doctors are slowly weaning him off of his meds and IV fluids.  It is awesome to see some lines disappearing.
Our lap top hasn't been working for the past week but once that gets working we will update pictures and a more detailed description of how Gibson's progress is going.
Thank you for all your support and love!!

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.