Highs and Lows

The last three days have been a whirlwind. I tried a couple times yesterday getting on to post, but just could never finish it. Thursday - Friday we were at the hospital for 28.5 hours, with 3 hours of sleep in between. Thankfully right now things have slowed down a bit.

I guess I'll start with Wednesday. We had a really beautiful night with Paxton as we got to give him a name and blessing. Anyone who knows me knows I always want to do what is "right". When I asked the nurse if we could dress him in a blessing outfit, she said, "to be honest I've never seen anyone do that before." I thought, okay, I don't want to push anything. But then as I hung up, I thought, that doesn't mean we can't! If you know me you are so proud of me right now for doing what I wanted to, and not just what someone else wanted me to do or not do! And I was totally okay with whatever the nurse on shift that night thought was best for Paxton, but I thought we could try. So I called and found a preemie outfit and my mom went and picked it up for us. The nurse was very agreeable and it made everything so beautiful and the experience feel so special and official to look down at him in his whites. We were all so glad we did it. :)

How tender to see Paxton so beautiful, peaceful, and awake! As Pa put it best, "You tell me he doesn't know what's going on here!"He absolutely was very much a part of this special evening. The NICU allowed us to have 6 people at his bedside instead of two, so both of his grandparents could be with us.  Dave prepared beautifully and gave Paxton a meaningful blessing, all according to the Lord's will, of course. It was very special for Dave to do this for Paxton, to say the least.

It was a pretty unique opportunity to be able to hold my sweet baby's hands during his blessing and have him looking right back at me. (Thanks for sneaking the picture, Grami.) He liked what was going on, and we all loved being such a close part of it. :)

 It was very hot for all of us under his lamps and he especially got a little hot and bothered towards the end, but was able to make it through. We needed to immediately undress him after and get him feeling good again. It took us a bit of maneuvering as by then he had had quite a bit of stimulation with pictures, hands, getting dressed and undressed (very carefully, clothes up over his legs) more heat on his body than normal, etc. 

It took about an hour but then he recovered and slept well for the night. He began no feeds and IVs at 11 am yesterday. Dave and I were back up here at about 3 pm to prepare for his surgery that was scheduled for 4:30 pm. Paxton ended up going back to the OR from about 6-7:30 pm to have his tracheotomy. (Tracheotomy is the procedure, tracheostomy is the device in his neck.) We had great happiness in what our talented surgeon told us afterwards. 

Turns out, Paxton does not have a laryngeal cleft! Hip hip hooray! Cheers! And he does have an epiglottis, eventhough much shorter than normal. With Paxton being so tiny (the smallest baby they have ever done a trach on), the doctor basically had a one-shot-spot to place the tracheostomy.  This is because Paxton's vocal chords and cricoid ring (the only complete ring of cartilage around the trachea) are lower in his throat than normal, and right below the cricoid ring is Paxton's innominate artery from his aortic valve of his heart (most people's are quite a bit lower.)... Meaning if the plastic from the end of the trach tube rubs at all on that artery, well, we would have a big problem! It's a .1% chance of that happening. (That means zero to this family, by the way!) His cricoid ring is also shaped like a football instead of a circle, making his airway very narrow, about 2 mm x 6 mm, and it was due to this narrow passageway, when swollen, that made it so Paxton had to be intubated to have air get in his lungs. But now of course we are bypassing those problems all together. The good news was that all of Paxton's biggest airway issues (the cleft palate, and the narrow, elliptical cricoid ring) can eventually be repaired! Yippee! (When Paxton is bigger he can have the palate repaired over a number of surgeries and he can have a lung graft to grow bone in his cricoid to make it more circular and large.) It was the next best news since the MRI, and let me just say how good it feels to get GOOD news!  This means that if Paxton's brain can handle the information the way it should, Paxton could eventually have a chance to talk and eat through his mouth. :)  With all that said, the surgery went well, and we felt great knowing that Paxton had taken a necessary step forward and was headed in the right direction.

 We had a bonus thrown on top as we witnessed Paxton already being a little missionary and influencing the people that are influencing him; it was pretty neat. We were on a high and felt great.


Then we came up to see Paxton. 
I knew I should be happy for him, I actually was excited to come up and see him with his new little trach. But it was just so sad to me. He looked so uncomfortable. His little neck is so tiny and he couldn't even put his head down all the way. He was also so sedated, motionless, and pale, it just looked very sad. It was great to see his beautiful face without tape on but he was pretty puffy and swollen from anesthesia and didn't look quite himself. 

As time went on a little longer and Paxton began to wake up, his body was having a hard time handling everything he had gone through. It actually started slowly as his breathing became more irregular and his oxygen was low and his CO2 was too high. Pax's CO2 levels were 130, when they should be 40-60. The problem was, all of the normal things they usually do to correct it were not working, and too much CO2 is poison to the body. He was becoming more pale from low red blood cells and not enough oxygen circulating. For the next 5.5 hours Paxton had at least 10 doctors at his bedside all the time, each doing something different around him trying to figure out what was going on. His little 3 lb. body underwent so much trauma we could hardly stand it.

(waking up, breathing very unsteady, pale, not doing well.)

 It was just horrible and when I say bad night, I mean the worst night. It was like being on day 1 and not knowing if Paxton would make it through the night. Things had turned so badly. They must have poked him 20 times, trying to do different IV lines to get blood and give meds, on full morphine, switching back and forth from the ventilator to the oscillator (gives him small, fast breaths), giving him blood transfusions, bagging him (oxygen manually), doing X-rays on chest to check placement of the trach, sending a scope down the trach to see if it had mucous plugging it, echocardiogram because of pulmonary hypertension (lung vessels were clamped tight and not circulating oxygen to the lungs or body light they should), putting him on nitric oxide to relax those vessels so things would circulate better, ultrasound on brain to see if brain had a brain bleed (because first blood transfusion did not make a difference and they wondered if it was going to brain), white blood cells up (signaling possible infection), etc., etc., etc. It was honestly one thing after another. I can't even begin to say how awful I felt for Paxton. By 12:30 am I had gotten to the point where I just wanted what was best for Paxton, if this was too much for his little body, just to 'stay here', then I didn't want him to have to go through it anymore. The scariest thing of all was that they had to give Paxton a paralytic to paralyze his body, like in the OR, so Paxton would not breathe, feel, or move a thing by himself. He just needed to rest and they needed the machine to do it 100% for him. This was awful for us to see him go so lifeless and wonder how long it would take to come back from all of this. Keep in mind Paxton has a brand new trach and that area cannot be moved in the first 3-5 days so the "track" of skin heals around it, creating extra caution and some limited possibilities.

(after the paralytic medicine and trying to get his breathing regular with machine. Paxton is still in this state, and will need to be for a few days.)

The doctors sent us to sleep in a room there at 3 am and came and got us at 6:30 am (when no visitors are allowed to be at the bedsides) because Paxton was desatting so bad. It was awful enough I wondered if we were getting close to when the doctors give up. I'm so glad they were not to that point and still felt like they had many things to try to get it under control. At 12:30 pm he had a huge desat again and the doctors had to bag him and amplify all the settings again. His body was so swollen from all the meds, but was at least more pink because the other transfusions were helping. He was stable the rest of the afternoon and Dave and I felt we needed to get home for a little rest. It was very, very hard for us to leave last night but we were both becoming sick zombies and we knew we needed to trust a little in these trained and wonderful professionals to care for Paxton while we got some much needed sleep. We left at 7:30 pm and Paxton was stable until about 10:30 pm last night when he had another 45 minute episode. With many phone calls in to his nurse through the night,  we were assured to hear he was doing okay.

That's where it's at now. Paxton is somewhere in there but completely motionless, can't move a thing. 

It's so hard in words to try and explain what the room is like when your baby is going through something like this, and I know only people who have ever experienced this can truly imagine visually and emotionally what these critical moments are like. They are completely frightening and as a parent you are filled with such sadness in wanting to take everything away from your child but remaining completely helpless. All you can do for them is pray. We are praying for Paxton to remain stable the next few days to rest and heal and for the doctors to try to get these issues figured out. We are worried about pneumonia which could send Paxton into a coma or worse. For this reason we won't be able to have any visitors into Paxton's bedside until he has recovered from this downspell.

Thank you for your continued prayers and love. We are so grateful Paxton has them.