Team Thad: Monday, June 10, 2013

The doctors came for rounds that morning and all was well. We had to wait a while for discharge, as they had to get the respiratory therapist in to dispense medicine, get follow up appointments scheduled, etc. we finally got out of there a little before 1 p.m. And though we were hungry we didn't want to eat another time in the cafeteria, good as it was! So we stopped at a favorite, Arthur Bryant's, before we headed home. The ride was good, either kids were happy to have us home, and it was such a good feeling to bring our new baby into his house and family!

Diagnosis: laryngomalacia.  Look it up on Wikipedia...it explains it a lot better than I could, and is almost exactly how the doctors explained it to us!  

Doctor said take him home and treat him like a normal baby...tummy time, yes. Baby wearing, yes. Just like a normal baby. What every mom wants to hear!

Team Thad: Sunday, June 9, 2013

Another uneventful day! We watched our infant crying video, gave Thad a bath (actually did that Saturday night), and just generally hung out with Thad and prepared for discharge. My sister-in-law's sister, Allison, was our nurse that day, and my brother Barry, wife Megan and their little boy stopped by on their way back home.  We got the car seat base put back in the car, cleaned and organized it a little bit after the kids had ridden back there with the grandparents, and tried to relax before our night of confinement in the PCU room. In the Parent Care Unit room, your baby spends the night in the room with you, off monitors, but the baby can't leave the room so one of you has to be there all the time. Which meant Wade had to go out and get breakfast for me, etc. 

It was so nice to have Thad with us...and not connected to wires! However, he was a hungry little munchkin and was awake every 1.5 hours to eat. It took at least 30 minutes by the time I changed his diaper, checked his temp, and charted it all along with how long he nursed, etc. Then I would just get into bed and doze off when the nurse would come in to check on him and look at the charts! Needless to say it wasn't a restful night, but nevertheless, still wonderful to know our boy was healthy and headed home.

Team Thad: Saturday, June 8, 2013

Since we had received such good news yesterday, I was feeling much better, though admittedly nervous about taking this baby home who only 3 days ago was turning gray from lack of oxygen!  I let Wade sleep while I went for the 8 a.m. feed then had to pump...in the 15 minutes I was gone, I missed rounds! When I checked in before meeting Wade downstairs for breakfast, the nurse told me that the doctors had decided to keep us until Monday. We were disappointed but ready to hear what the doctor had to say.

Side note: in the night, the nurse had put on a onesie that said "see you later, alligator" in honor of our approaching discharge. He had it on all of 15 minutes and spit up ALL over it. Then, during the car sent test over night, he had to keep his oxygen above 93. The nurse told us he was at 91 or 92 the entire time! Little stinker...perhaps he was telling us something!

After breakfast, we went back up to hang out with Thad. Wade's parents left Friday night, and my parents were taking the kids back home today to try to get them back in somewhat of a routine before we came home... No use in us all being tired and cranky! The family room wasn't open yet, and we had to check out of our room every morning so it could be cleaned and used for resting in the afternoons, so we didn't have many options...plus it was nice to just sit with Thad and enjoy some quiet together (other than all the monitors and baby sounds around us! Ha!)

As we were sitting, we saw our doctor down the way visiting with a nurse.  He saw us, immediately excused himself, and came down to talk to us. He explained that he felt he was rushing us out and wanted to give us more time to be comfortable with Thad, to not have to rush through the teaching parts, and to give Thad more time since he hadn't passed his car seat test (come to find out it was an issue with the angle of the car seat, as he later passed with flying colors). He said if we really wanted to go home Sunday we could, but they don't round or anything on Sundays so would be best to wait until Monday. We were disappointed but understood. And were glad for a less rushed day. We even had time for a nap in the resting rooms later!

The day was fairly uneventful after that. Always be thankful for uneventful in a hospital!

Team Thad: Friday, June 7, 2013

A very crazy day! Lots of visitors with my parents, the kids, Wades's parents, and a several of his aunts and uncles  (his grandpa and wife came on Thursday) and still recovering from my surgery...I was physically and emotionally exhausted! So I apologize to all who came to visit...I know I didn't socialize but it was all I could do to stay awake, hug my kids, and feed my baby! My aunt and uncle came by, too, to check in with my parents and offer snacks, a place to stay, etc.  hooray for wonderful family on both sides!

Friday's rounds brought lots of good news. Our doctor team told us we could go home saturday morning! Yeah! That is good news in a NICU.  So we had a lot to do. Thad had to be able to sit in his car seat for 2 hours (the amount of time it would take us to drive home) without desatting. They would do this overnight while he (and we) slept. We also would have to do lots of learning...a CPR class, watch a video on infant crying required by all parents leaving hospitals across the country to prevent shaken babies, bathe him, etc. 

Rounds ended at 12:30. CPR class started at 1. We needed to eat lunch and I needed to pump. No rest for us!  The afternoon was a blur. Visitors, seeing the kids, feeding the baby. I was getting more exhausted by the minute!  I started to rely on Wade a lot more to wheel me in the wheelchair, as I was hurting a lot and swelling. We would have to do a lot of the other tasks on Saturday before we were to leave.

We stayed in the Ronald McDonald House Family Room on the second floor of the hospital (the NICU is on 3rd).  What an amazing service Ronald McDonald House Charities is! This will be on our list for charitable giving now! The room was small and there were 2 shared bathrooms for 7 guest rooms. The first night (Wed) they put us in an empty PCU room (parent care unit--where we would stay with Thad in our room the night before we discharged). Thurs night we were in a Ronnie's room with a twin bed and foam mat on the floor for Wade. He was a trooper! I hated that he had to sleep on the floor, but I had to have him with me as I couldn't get out of bed myself yet and needed wheeled down the long hallway and up the elevator at 11 p.m., 5 and 8 a.m. To go feed Thad. The nurse fed him a bottle at 2 so I could get a few more hours of sleep.  Friday night and Saturday night we had a double bed, which was nice! The rooms are also open from 1-5 p.m. for parents to rest. 

Volunteers also fix and serve meals most days throughout the week. On days they don't serve, you are welcome to visit the kitchen and warm up leftovers or fix something from the pantry...Mac n cheese, ramen, soup, etc. there were also snack foods and fresh fruits and veggies available as well as a very nice kitchen, couches and TV. A great place for parents to get away from the bedside for a little bit! I only wish we lived closer...this is something I would like to do as a family someday, fixing and serving for other parents who are tired and stressed and away from home.

We could have stayed in a room at the actual Ronald McDonald House across the street, but with nursing, it was more convenient to stay in the hospital. Also, since the kids were staying with my parents at my aunt and uncles, we wanted to leave that space for another family who needed it.

Team Thad: How to explain medical stuff to a very observant, very curious six-year old!

The kids have been very excited for "new baby" to arrive. We didn't share the name before he was born because we like to have a little bit of reveal since we knew the gender and delivery date. Also then people can't weigh in ahead of time on whether they like the name or not! And we couldn't tell the kids, because we know how well kids keep secrets! Ha!

So kids were excited to have new baby join the family. When Wade and Thad were on their way via ambulance to Manhattan Regional Airport to board a fixed wing plane to fly out, I got an early discharge despite my cesaerean and went home to throw some clothes in a bag and let the kids know what was happening.  How do you tell a 3 and 6 year old that their baby brother turned "dusky" multiple times and was headed to another hospital? You get very creative...no need to scare them or cause panic.

Something like this.

Dr. K. Is like a detective trying to solve a mystery. She used all of the tools she had and looked for all of the clues, but she couldn't solve the mystery, so she is sending him to a different hospital that had more tools and could look for new clues to find out what was making him not feel well! Then we talked about how Thad was getting to ride a plane, and they thought that was pretty cool!

It kind of fell apart when I told them I was going to be with Thad...they had had a new sibling, gotten less sleep than usual, and were in a stressful situation with a momma who was trying to control her emotions!  They cried and begged me not to go, or to take me with them, and why mommy isn't new baby home with you.  It was a long hour trying to get them calmed down and out the door, but we all survived. They were in good hands with Wades's mom and dad!

Next dilemma...how to explain all of the cords and tubes on Thad when they came to see him in the hospital!  We talked about how the ng feeding tube in his nose could allow mommy milk to be put in the tubes and go straight to his stomach. We talked about the sensors stuck on his skin connected to wires leading to a computer were like the stethoscope Dr. K uses to listen to their heart "beep" only they were always there! Ad we talked about how neat it was to be plugged into a computer.

They reacted really well to seeing him in his hospital bed. Other than really wanting to hold him (with so many wires it made me nervous, but I held him and they patted and kissed and loved him), they were just really happy to see him and to see that we were both okay. They picked out a balloon for him and colored pictures to hang in his space.  Friday Gabriel spent at least an hour back with him, charming the nurses and loving his new brother.

If you have never been to Children's Mercy Hospital, I hope that you never have reason to. However, it is a pretty neat space! Lots of visual art and displays and neat things for kids to see.  Gabriel said that it was a pretty fun hospital...I am glad that he could see it that way, thinking to myself that it is all in whose shoes you are standing in, but I am thankful that they will be able to remember this little hiccup as just another adventure in life rather than something scary!

Team Thad history: day 2 June 6, 2013

Again, this is mainly for my recollection for the future. I would like to think that some day I will put this in a journal or baby book or something, so I want to remember it!

Also, please continue to pray for all of these other babies in the NICU and other facilities around the country. For every good report we hear, there are unfortunately many more cases that aren't hearing as good of news. Thank you for your prayers for us!

So, on to Thursday.  Not much sleep and lots of tears made for a pretty foggy day. We met our team of medical professionals, which included the resident physician, a visiting fellow, and two nurse practitioners. We were very impressed by the way they handled our case, our emotions, our little boy. They stand near Thad's bed and discuss history, test results, plan of action, etc., then turn and address us in terms we can understand and ask for any input or questions (things like clarifying when and what happened before we arrived, etc.) Thursday morning they were able to tell us that the CT scan was normal, as was the lumbar puncture. They didn't feel an MRI or another echocardiogram was necessary, meaning they had ruled out anything cardiac or brain related...HUGE SIGH of relief! But still no answer. And though Thad had desatted (lost oxygen saturation) a few times, he had not turned colors since we arrived at the NICU and had not required oxygen to recover. This was also really great news!  

Thanks to our nurse for the day, who watches only Thad and one other baby for her 12 hour shift, had been watching him while he ate (he had been put on IV fluids in Manhattan and I wasn't allowed to feed him for 24 hours, but the team thought I should be able to try feeding since the episodes were not happening during feeds) and was very aware of what was happening after feeds...some gurgling, choking sounds along with squeaky breathing. She mentioned to the nurse practitioner, who put in a request for the ENT consult. ENT came and put a scope through Thad's nose to see if there was an airway issue or reflux that was causing problems.  

The ENT report was that Thad had very narrow nasal passages that were a bit more swollen due to all of the tubes, suctioning, etc. that had been taking place, as well as an immature larynx that was causing issues with his air intake, especially in certain positions, such as on my shoulder or if his chin dropped to his chest at all. They recommended FloVent and saline drops to help reduce swelling, and Zantac to help with some acid reflux that was being exaggerated by the larynx issue. They would report to our team of doctors who would make the ultimate decision.

Thad had a few desat episodes today, but nothing too serious and mainly due to positioning. We are still waiting another 24 hours to get cultures back from the lumbar puncture and blood cultures. Doctor  this morning was thinking we may be able to go home over the weekend!

Also, Gabe and Zoey arrived today to see Thad, along with Wade's parents. The older two were so excited to see Thad, and even though they couldn't hold him, they were happy to see him and us, and even more happy to have the opportunity to stay at my aunt penny's house! Ha! Like a vacation for them! And at some point, Gabriel talked about what a fun hospital this was (being a children's hospital, they have all sorts colorful displays and fun stuff to see). More in another post about ways to explain what was going on to a very curious 6 year old!

Team Thad history Day 1 June 5, 2013

DISCLAIMER: This is more of a journal for me than anything, but wanted everyone to be able to keep up with Thad if they wish. First and foremost, thank you for your prayers. While you are praying for us, please make an effort to pray for at least one more baby and family here in the NICU. We are very lucky and very blessed and Thad is doing very well, which is not the case for everyone here. So please say a prayer for another little baby that needs God's healing! I had imagined that by this day, we would be home as a family of five, or at the very least preparing for discharge from our local hospital. I had imagined that we would already have posted hundreds of pictures on Facebook by now! I had imagined that things would be a lot different than they have been. BUT Thad had other ideas! He was ready to have some big adventures before he had even reached his 2nd day of life! The first 24 hours were perfect...my surgery went well, Thad was healthy, eating well, big brother and big sister loved him at first sight, everything was picture perfect. Fast forward to Wednesday early afternoon. Dr. K, our awesome pediatrician, had just stopped by to check him out. She had brought him back to my room and was visiting with us while Thad lay contentedly in his bassinet. I looked down, and he had turned a very ashy gray. Dr. K rushed him into the nursery to check him out. He recovered quickly but she wanted to watch him for a while. After a second episode (known in the medical world as a "desat"--a desaturation of oxygen levels in his blood), she hooked him up to some monitors to keep an eye on him. Through the course of the afternoon, he had a total of 5 desats, a couple of them being very scary in that he quickly turned very gray, and some requiring oxygen for him to return to normal. Dr. K and her group of wonderful, wonderful nurses watched him nonstop while they ran every test they could...chest X-rays, head ultrasound, echocardiogram, blood work up, etc. Everything came back...NORMAL! Which is good, and what we would want to hear, but that didn't give us any idea of why it continued to happen. On the recommendation of Dr. K, we chose to move Thad to another facility with a NICU and specialists and access to even more tests than our awesome team had done already. Within 2 hours, Thad was taking his first ride in an ambulance,followed by his first airplane ride! Wade accompanied our little man while I got an early discharge, packed quickly, tried to explain my quick arrival and departure to G and Z (and why our new baby didn't come home with me!) and was chauffeured by my parents to KC. By the time I arrived at midnight, they had already done a CT scan and were prepping for a lumbar puncture, where they draw spinal fluid to culture it. By the time we got to see him after that, got set up with a room down the hall from his bed, grabbed a quick bite and crashed, it was 3 a.m. After a couple of hours of sleep, we were up and ready to see what a new day brought.