Back down to the PCICU

The ups and downs continue... we moved back down to the PCICU this morning.  Caleb's saturations hung down in the 60s and this morning started retracting when breathing.  He had to work hard to breathe.  We could see his ribs every breath he took.  We moved back into our old room in the PCICU. Our verse was still on the white board where I had written it:  This is the day that the Lord has made!  Let us rejoice and be glad in it!  I think God sent us this as a sign of comfort that the nurses and doctors will be watching him very closely and cautiously.  Many tests, assessments, echos, and blood work were done to try to figure out what was causing his desaturations and breathing patterns and they started fluids, blood transfusions, and antibiotics just "in case".  All tests came back negative.  After close monitoring all day, we believe that he was "dry" and low on fluids due to the lasix that he is on.  It's a tight balancing act between meds and what he needs.  Respiratory therapy has continued CPPD to work on his collapsed lung, which they said looked better on today's x-ray.  His saturations looked more stable throughout the afternoon.  Prayers that they continue back in that direction!

CPPD therapy

After hanging in the upper 60's and low 70's for oxygen saturation then swinging back into upper 70's, an x ray came back showing his lower right lung was collapsed.  Respiratory therapy has started CPPD to help initiate a cough which will open the lung.  I'm not writing much because I'm typing with my left hand while holding his head upright and gently rocking him.  He's decided he doesn't want to sleep tonight. He's been baby fussy for hours. Great because its very typical newborn behavior; challenging because I can't soothe him like I normally would an infant (can't nurse or put bottle in his mouth;  and picking him up is hard with all the wires!)

Moving on Up

Just one day shy of one month old and period of time, we've moved on up in this big world!  (Up in the hospital to the "Floor", but it is actually a step down cardiac unit.)  He's met all the criteria to leave the PCICU!  On the floor they basically train Mommy to be his "doctor".  He is still on a very small amount of oxygen through his nasal cannula.  They are continuing to wean him off this and watch how he tolerates.  Somehow he managed to get it in his mouth twice today and was sucking on it.  A speech therapist will work with him on his feeds.  This is a big challenge with Hypoplast kiddos because eating is a very hard exercise for them.  His heart has to work very hard when eating and he wears out quickly.  Right now, all of his feeds go through a NG tube.  We will slowly introduce feeding through a bottle and work towards trying to breastfeed.  He has never had food in his mouth (never swallowed milk, had the ventilator tube down his throat for over 2 weeks, and sometimes the surgery could've damaged vocal chords.)  These factors will all determine how he does and contributes to why the therapist has to monitor him very closely.  They also have to be aware of how many calories he intakes.   I got to give him a bottle for the first time today!!!  The speech therapist's goal for him was to take 5 mL from a bottle today and he drank 14!
I'm so thrilled to finally be able to play the role of "Mommy" with him.... feeding him, changing diapers... it's just a bit more difficult with the lines in him and the fear that when he cries and gets mad, his oxygen drops.  We are in our own room now, and the nurse basically lets me care for him, unless I need her.  I'm not so sure how tonight will go-  sleeping doesn't seem possible!
It's also very boring in here.  Not to sound negative, but I'm not used to being by myself and since Caleb doesn't talk back to me yet  :o), it's super quiet.  I think because this is one big step closer to getting home, I'm SO craving it right now.  I'm sad that I'm not at the boys' baseball game, not taking the girls to dance, or filling out her dance paperwork, missing preschool last days.  It's just a day of excitement but ready for the next step, which I don't know what or when that will be!........  Well, I wrote all of this post this afternoon when everything was super calm.  Since then, little man has de-satted and then gone back up over and over.  He's done this for the last 3 hours.  Not looking like any sleep in my future tonight!  It's one thing to not get much sleep due to a newborn baby that has days and nights mixed up.  It's another to not sleep because his Oxygen monitor keeps going off constantly!

Birthday celebration

We had a lot to celebrate yesterday- Jake turned 7 years old! We had fun family celebration all day. He had been a bit sad earlier in the weekend and just not himself. A while back, Jake had set a goal that Caleb be home by his birthday. For all that know jake, numbers, goals, countdowns, are huge to him. We didn't think much of it until yesterday. We really tried to just make yesterday all about the birthday boy. By the end if the day, he was all smiles with a lot of sweat in between from a fun driveway game of basketball!
We ask for prayers for the siblings. They have all done amazing, but we think they are starting to tire of it all and crave normalcy.
Caleb's had a few days of going down from the Vapotherm to nasal cannula to room air and then back to Vapotherm (3 times). As of right now, he's on the nasal cannula and doing really great. His oxygen sat's are staying within the range of 75-85 unless he gets mad and clinches down. The nurse practitioner said that his plication surgery last week cut through so much muscle that it hurts for him to take big breaths and will just take time to heal. This afternoon, his NJ tube was raised 3 centimeters into his stomach to become NG. Overnight he was weaned from Milrinone to Enalapril (heart function medicine). Prayerfully he'll continue to do well off the Vapotherm.
Today I've felt almost like a real mommy. His nurse is wonderful and has a lot of confidence in me. She showed me how to pick him up to hold him (which is tricky with his wires & lines) and even change his diaper- yes, he is almost 1 month old (in two days) & I have only held him three times and never changed his diaper!). As I was doing it, he "exploded poopie". I said that this felt very normal!! I even helped during a sterile procedure- full masks, gloves, & all during a clave change on his pic line.

On the VapoTherm

Overnight Caleb was weaned off his VapoTherm and onto a nasal cannula.  After only being on that for a couple of hours, he was taken off that and was breathing on his own, with no support (and no equipment!).  I could actually see his sweet little face, his nose, mouth, lines of his mouth, cheeks.  He looked so different to me and I loved every second of it.  I was able to hold him.  While holding him, the nurse decided he needed a bigger bed so she ordered for a crib and meanwhile, moved out his old bed.  It took a very long time for the new crib to be brought in and the nurse kept apologizing.  I kept telling her that I was thrilled that it was so long!  I was asked to go to a focus group on the PCICU floor, but I was late due to holding Caleb.  Oh well, the cuddle time was WAY worth it!!

While I was gone from the room for 45 minutes, they did an xray on him.  He got very upset (typical behavior for him) and according to his surgeon who walked by during the event, "turned blue".  He watched him for a while, and decided that he needed more time on the VapoTherm.  He wants him to have more nutrition and allow his lungs to open up more so that he doesn't go into distress. 

Although we've taken two steps forward, and no the same two steps backward, Caleb looks better.  They took out his chest tube today!  I got a bit nervous as I was watching him late this afternoon.  While he sleeps, he goes through times where his eyes roll, but it never lasts long.  (I understand this is normal.)  During this period, he did this for a LONG time--- 10 minutes.  I called in two nurses, but they didn't seem to be worried about it, (and all his stats looked fine) so I tried to relax.  Prayers he doesn't continue this.  It may just be "newborn" sleeping habits, but I don't need anything else that looks out of the ordinary for this little guy!

Extubation- take 2

Caleb had a great night.  They started the weaning process off the ventilator not long after surgery yesterday and continued it through the night.  He did two CPapp trials this morning.  They extubated him midday today and he has tolerated it well.  So far, his oxygen sats have been within the range they have set for his goal -75-85 and his blood gases have come back "just right".  They have him on the VapoTherm.  He's been sucking away on his pacifier.  Prayers for an uneventful night!--  I'm super nervous after the last time he was extubated and am having a hard time not staring at the monitors.  They told me I've got to learn how to watch him for signs because whenever we go home, the monitors won't be going with us!

Plication Surgery Completed

     Caleb has had a good day.  They have not been able to determine a major cause of his seizure yesterday and he has not shown any additional seizure activity on the EEG that they did for 24 hours.  He will continue to stay on the anti seizure medicine, Keppra.  The surgeon said that we may not ever find out what the diagnostic cause was; however, the way it's being treated would stay the same.  He was extremely tired from the episode and slept a lot overnight and today.  He was able to be stimulated, which is good, but I didn't see his eyes open until 10 minutes before they came to take him to surgery (and they were very groggy still).
     He did good in surgery and has about a 3 inch incision starting on his side and going up his back and a new chest tube.  His incision is similar to his big brother's incision scar!  We just were shown his xray and compared it to prior to surgery and it was described to us by the doctor as "GORGEOUS"!!!  Although not a term we like to use on our boys (haha!), we will take it proudly for his xray!!!  Prayerfully, as he starts to wake up over the next few hours, they will start to turn down his ventilator and he will tolerate it as this continues over the next couple of days leading up to C Papp trials first, then extubation.
     Yesterday was a very hard day for us.  As the surgeon told us, there are a million things that "could" happen along this marathon and they can't list them all and just pray we don't experience them; however, the seizure hurdle was one we hit.  I cannot describe the difference in how I felt yesterday and today.  Today it truly felt peaceful in his room.  We are so grateful for all of the prayers from all over.  It was so comforting and all I can say is that I could honestly sense angels surrounding him in comfort today!