Moving Day!!!

Par spent the first part of his day enjoying the hustle and bustle of the NICU 3--but soon after lunch the orders were in for him to be moved down to NICU 2--lots of babies were coming and they needed the room! Packing is pretty easy--they just threw all his cords into the bed with him and we were off to his new home! A little bit cramped--but hopefully we won't be here long.





Par was worn out from the move and all the eating he has been doing--so it was a pretty low key day--he mostly napped between feeds or just stared at his mobile. We noticed this morning that he had a PICC line put in his forearm last night to replace his central line in his neck. The surgery team came by after we settled into the NICU 2 and removed the central line--Par didn't even cry! Par has been eating well and is up to 9cc's every three hours! I fed him a few times today--once he burped twice and nothing came up (yay!)--the other times he had a little bit of a wet burp--but nothing out of the ordinary for a baby. Par has now been started on Reglan to help him with reflux and to tolerate his feeds--more of a precautionary thing.



Our sneaky son has learned to fake sleep--today we caught him opening one eye to make sure we were still there. We were--with camera in hand--how clever is our little boy! Tonight when we left he really had fallen asleep--he was awake in his bed and so I picked him up and he just went right to sleep and then I set him in the bed and we left--hard to leave, but easier that he was asleep.



We continue to pray for his feeding, reflux and his little body that is surely still healing from his repair surgery. We praise God for allowing us to be here in Gainesville--we thank Him for our many blessings.

Please continue to pray for Par's friends and that they will continue to heal--we pray they will join us soon in the NICU 2.

Love, Liz, Rusty & New NICU 2 resident, Par

For this child, I have prayed. I Samuel 1:27

We are so thankful for our son and so thankful for the prayers for his healing from all of our friends, family & those we've never met. We are overwhelmed by the outpouring of love--but trust that your thoughts and prayers have not been in vain--our child truly is a gift of our Father and our prayer is that his life may help bring others closer to our Lord. It is so true--for this child, we have prayed many days and nights. Rusty and I were remembering how just 3.5 weeks ago, we had one eye on our critically ill baby and one eye on this machine that we really didn't understand completely. We prayed for every single digit that his saturations needed to rise to keep Par off ECMO. Today, his saturations are still very important--but we barely pay attention to them (by the way, they stay at 100 most of the time). His steps have been remarkable--we praise God for his progress.

Par has done well eating--but he isn't quite there yet--he is still a little confused about why when he sucks this "pacifier" liquid comes out. He gets the cutest little look on his face. Because of his good feeding yesterday, Par's feeds were upped to 5cc's of breast milk every three hours throughout the day. Our main issue has been that he gets WAY too comfortable and snuggly when I'm holding him and he falls right to sleep. Of course, I absolutely love that he loves being close to his mama--but he needs to eat when I feed him--that is our ticket out of here! We had a great nurse today who thinks Par is going to be on full feeds before we know it (really, she is just speaking in very positive terms)--but I love hearing that he is doing well--even with our little sleepy issue.

As usual, I spent some time telling Par about Birmingham and our house that he is going to live in when we get home. Below you can see the reaction when I told him about how if he works on feeding then we may be home by Christmas--and if he doesn't--he might have to have another surgery. I think he understands the seriousness of the situation now--thank goodness.

We still are in NICU 3--and just like yesterday, our move is expected at any time now. We could possibly go in tomorrow to find him moved. Mom and I toured the NICU 2--it seems very empty compared to where we are--but that can change very quickly. It was pretty quiet and less action. Although I may not be ready for the move--I pray that Par is--although when I told him about it, he immediately tried to hide-- (see picture below)--but I told him they'd probably find him anyway. (Isn't he precious!)



Par is four weeks old today--I can't believe it has been that long--it seems like everything just happened. Praise God that we have our precious baby.
We continue to pray for the health and healing of Par's friends.

Much Love,
Liz, Rusty & Par

I let him become the smelly kid...

When we called this morning to check on Par the nurse asked us if we'd bathe him when we got in because he smelled. On one hand, we were thrilled we'd get to give him his first bath (which turned out to be a glorified sponge bath)but on the other hand, how embarrassing that our baby smelled so bad the nurse had to ask us to clean him.

He didn't love his bath--but he didn't scream bloody murder as we have heard other babies in the NICU. He definitely likes being clean--and just as a reminder--this is the first time EVER that he has been cleaned because they didn't clean him when he was born because he was so fragile--so we were literally cleaning off stuff from his old living quarters (ie-the womb).





As another surprise we found out he was definitely going to try to feed today--but with a BOTTLE! I was shocked. They felt that since his sucking seemed so strong and he was "acting" hungry (rooting and stuff) they thought he might take to a bottle feed. This is just to try--if it doesn't work out--they'll feed him through a tube as planned. So I got to feed him 1cc (which is a tiny amount) in a teeny tiny bottle with a normal size nipple. He was a little confused but seemed to swallow pretty well. We did it again at 8pm and then at 12am--so far so good. They'll feed him again at 4am--and if all goes well he'll get 5cc's at his feeds tomorrow. Apparently, this first feed is really to work on swallowing and to prime his stomach since it has never had any food in it. Tomorrow will be more telling--it will actually be enough to spit up if he is going to have reflux issues. Please pray that this nasty reflux problem has decided to skip us (but we know it is almost a certainty with cdh).



After his feed, they came and took is UA line out--which was quite a process because it has to go really slow--pull a bit out, wait 5 minutes, pull a little more, wait 5 minutes--all this so that it clots because it is going into an artery--that's the danger with these--if it is pulled out too fast there is a potential for bleeding internally. Thankfully our NP took her time--unfortunately I came back from eating to find mom had just about fainted from watching the procedure--so they had mom sitting with her head between her knees.

With his UA line gone and him being clean now--he can wear clothes! So we put on one of his little sacks that it sooooo cozy--he loves it! He's looking more and more like a real baby!



Ella is still taking her time, although it seems that her latest xray showed slight improvement--Praise God! Continue to pray for her lungs to get stronger and stronger.

In closing, we receive all but an eviction notice from the nurse practitioner in the NICU today. She said that the NICU is expecting 2 more critically ill babies in the next day or so (one of them being ANOTHER CDH baby) and there is just no more room. I said something about this in the post yesterday--I didn't know we'd be the people they'd move out! We should be thankful that Par is doing so well that they feel he can take a step down to the NICU II--but I feel it is just a little too soon--the amount of care isn't the same as in the NICU III--plus, we'd really never see Dr. Kays--but, it is the next step to coming home--i just wish it was because Par was ready and not because they need the space--but hopefully by the time he moves (which isn't definite quite yet--but possibly by Friday)--both will be true. I guess it is just bitter sweet.

Thank you for your prayers!
Love, Liz, Rusty & the smelly kid, Par

Who's in Charge?

Who's in charge? Par is in charge! He told us loud and clear that he did not need his CPAP anymore! When we arrived this morning he was wearing the CPAP gear--but even his nurse didn't notice that he had cleverly slid the nose prongs out and they were just propped next to his nose. No wonder he was being so good and quiet. But then a nurse across the way heard us talking about it and came over and stuck them back in--so of course, he got upset. He has the cutest "mad" face--it isn't "sad"--it is definitely VERY mad and you can't help but laugh at him when he is crying--he is already way too spoiled. In fact, at this point if you stand at his bed you have to either be holding his pacifier in or playing with his monkey toes--and sometimes you have to do both at the same time. I am guessing that is because his feet were the only thing we could touch for a while, he still finds comfort in us touching them.



Dr. Kays came over after lunch and wrote the order to have Par taken off CPAP and put on nasal cannula ASAP--and yes, we have video of this momentous event. We let Par take the CPAP off himself since he is so good at doing it. Dr. Kays also wrote an order to have the UA line removed (yay!) and he doesn't have the tube down his throat except when he is fed (which still hasn't happened yet). Additionally, they discontinued all of his medicines except his fetanyl and lasix. He is slowly but surely losing all of his lines because he is doing so well--we give glory to our Lord for such remarkable steps forward Par has taken. We understand he may start trying to eat tomorrow--so we'll see. Please pray that he will not have any reflux issues.



While we visited, Par decided to show us his new trick of crossing his eyes (which freaks me out--but yes, I realize this is normal for babies to do). Anyway, Mom and Rusty thought it was funny and they tried to get some good pictures of him.



Par had a big day--and he was up the entire time. When we went to say goodnight and read him his bedtime prayer around 10pm he was sort of awake but drifted off by the time we left.

Please continue to pray for Jonathan as his repair surgery is still scheduled for tomorrow morning. Ella is having an xray tomorrow which will be part of determining if she is ready to be extubated--we just ask for God's perfect timing for extubation and we thank Him for Ella's successful feeds.

May God bless you.
Liz, Rusty & CPAP-free Par

Pacifier Duty

Par was not a happy camper today. He was awake for about 6 hours straight—it was shocking. I asked the nurse if he was on any sort of speed—she said no. One minute he would be content and sucking (loudly) on his pacifier and the next minute he would be air-boxing with his little hands trying to take his CPAP off and pull his replogle tube out of his mouth. Most of the time he succeeded—not because we can be over powered by a 3 ½ week old baby—but because when he starts flailing his arms he sometimes catches on other lines (the ones going into his body, like his central line) and we’re trying to keep him from hurting himself—the CPAP we can put back on—the central line or UA line can have devastating effects if he snags them just right—anyway, he just HATES his CPAP (most babies do) and he just wants it off of him. I don’t blame him—how comfortable would it be to sleep in scuba gear—that is basically what he is doing—it would drive anyone insane!

Mom was with me all day—we took turns on pacifier duty. During one of his “content” spells the nurse asked me if I wanted to hold him—so of course, I jumped in the chair. He was only content for about 20 minutes—he actually seemed uncomfortable—like something might be hurting him, so we opted to put him back in his bed and he seemed to calm down.



As I have mentioned before, it is difficult when he cries because I can’t do the natural soothing things one might do for a crying baby. Even when I’m holding him, I’m only able to hold him in that same position. The good news is—he does seem to be relatively consolable—I guess he just had a lot of “personal issues” today and each one needed addressing!

Dr. Kays came by about 6:45—right before I was leaving for shift change. He had been tending to the other 2 CDH babes for most of the day. He asked me how Par seemed and I said he was sick and tired of the CPAP get up. Dr. Kays said, “Well okay—let’s just get rid of it then—how about tomorrow?” I asked if he was serious—he said yep. He said he would do it tonight but he didn’t want something to go wrong and be called to come in at 1 AM—I don’t blame him.



When we arrived tonight (Rusty worked today so tonight’s visit was his first for the day) his blood gas had not been very good. I have no idea how that will impact his change from CPAP to a nasal cannula—but I have to think it might. We’re praying that his 4AM blood gas will be good so Dr. Kays can move on with his plan. Also, his replogle was removed and replaced with an OG tube. This tube is used to naturally vent the stomach (the replogle is suctioning the stomach) so it doesn’t fill with air. This tube is also used to feed—but we are not doing that yet—but at least now we’re ready! The other good thing about the OG is that it is much smaller than the replogle tube—in fact, the nurse said Par did not even seem to notice when she put it in and he hasn’t been pulling on it like the other one.



Ella has been feeling better—she fell asleep while admiring herself in a mirror on one of her toys tonight while I was talking with Tina. She is so precious! Please pray for her lungs—pray for clean films so she may take the next steps in her recovery. Also, pray for toleration of her feeding tube as they continue to increase her feeds. Please keep her parents in your prayers as they continue to be strength for their daughter and each other. Jonathan’s surgery is tentatively planned for Wednesday (finally—remember, he hasn’t yet had his repair). We ask that you will continue to pray for healing in Jonathan’s kidneys and liver and for Jasmine.

We thank God for the progress Par has made in his short life—we continue to be in awe of the love we’ve been given with this precious baby boy and we give all of the glory to our Lord. Liz, Rusty and Par

Par counted to ten in spanish today!

Well...not so much...but for the past three days we've been on a roll--so this wouldn't have surprised us at this point! Today was VERY low key--Par slept a lot (actually, he slept a lot when we were with him).

When we called this morning we found out he had been a good baby--but when we arrived to visit him we found out he had not had a very good blood gas--thankfully the nurse was able to pinpoint what was happening around the time it was taken and it can reasonably be assumed that he had too much going on, his CPAP wasn't secure, he had just had diaper changed, etc.--this is reassuring that he isn't necessarily "not tolerating CPAP" but that it was just a bad time to take the BG. Dr. Kays didn't seem worried--and he was around the NICU most of the day--so we feel reassured. The only thing Dr. Kays ordered was that his secretions in his mouth be suctioned before blood gases. Seems easy enough, huh!?!



This afternoon we read Par a new book we received from some new friends in Gainesville--it is the sweetest book-- ON THE NIGHT WHEN YOU WERE BORN. Mom cried when I read it the second time--all you moms out there need to get this book--it is precious. Par seemed to really enjoy it--although he did sleep through it.

Tonight Rusty had some father/son time with Par while I was pumping. He recorded Par's famous suck--it is so cute!



Thank you for sharing in these incredible moments with our family over the past few days. We continue to appreciate each and every prayer and word of encouragement. We thank you for your friendships and support.
Love, Liz, Rusty & Par

PS- There have been several questions about when Par will begin nursing or taking a bottle--there isn't really a good answer for that--but it is a long way off. We might try eating this week, but that involves a feeding tube and 1cc of breast milk to see how he responds--this is a very slow process--nursing/bottle won't happen until we know there aren't any reflux problems.

God is Good.

I didn't think it could get any better so soon--but it did and we thank God for allowing so many amazing experiences for Rusty and me-- and in record timing! I'll cut to the chase--

After 24 days, Rusty and I were able to hold Par for the first time today.

Thanks to our great nurse, Jenn--we held him around 1pm. I really couldn't believe it--Jenn had mentioned yesterday that we might be able to today--but he didn't have a great blood gas this morning, so I was more worried about how Par is doing on CPAP than I was about getting to hold him--don't get me wrong--it is all I think about--but I've known that I only wanted God's perfect timing with everything--from extubation to holding him--I just didn't realize they'd come back to back. When we arrived to see Par he was awake and sucking on his pacifier--his suck is so loud you can hear it as you approach his bed--pretty funny. The only problem is that you have to hold it in for him--he is very high maintenance! Anyway, as soon as I took over her pacy holding position she said "We're going to get a blood gas right now and then you'll probably get to hold him"--I was thrilled and tried to pep talk him about giving a good blood gas so we could--he performed admirably with a fantastic blood gas!

Okay...so of course we have video of us holding him...in the videos, Par is crying when I'm holding him and completely content when Rusty is holding him. What you won't see is that once everyone left us (Rusty, Par & me) alone, he immediately stopped crying and just sucked his pacy and gazed at both of us--he was happy--he just didn't like the commotion. I'm telling you that so you don't think "Oh, poor Liz--he cried the entire time." After I held him for a while, Sal came back to see me holding Par and she got to see him with his eyes open for the first time! Then mom and dad took turns coming back--and Par was such a good little boy for his audience. A lot of the nurses came by to take a peak knowing that it was our first time to hold him--for such a "sterile" environment--the NICU sure does seem to brighten up with something so simple as a mother and father holding their baby for the first time. Also, for Rusty to hold Par, I had to pass him off to Rusty--so there wasn't anyone to take a video of that--then I picked up the camera and started filming--but we were afraid the battery was going to die and I definitely wanted pictures--so it cut Rusty's video short.





I'm afraid that he liked us holding him a little too much and Jenn tried to impress upon me that because of his UA line, some nurses won't let us hold him still--so just because we held him today, it doesn't mean we can hold him tomorrow. Plus, he has to still be progressing--sometimes too much stimulation can throw them off and then their saturations go down or bad blood gases--anyway--we'll just take it day by day. I just don't want to get to a point where he is crying to be held and we can't hold him--so we're going to try and be really patient about it--but we're definitely already addicted.








After all of the excitement--Par needed some rest so we sat there with him in his bed and waited for him to fall asleep. He isn't quite as sleepy because they have weaned his sedation medicine even more in an effort to get him to move around a bit more because his film from this morning showed his left lung a little wet (which is completely normal for a baby who was just extubated yesterday--because he can't be suctioned anymore he has to figure out how to "cough it up"--it just takes a little time). After sitting with him and holding his pacifier in his mouth for over an hour, he finally fell asleep. We felt this was a good time to leave so we could beat the game traffic (huge game--Florida plays Florida State today).


As we were leaving the NICU was spoke to Tina & Josh (Ella's parents) and they asked us about the "holding experience"--we told them how wonderful it was. We told them that we didn't cry as we both had thought we would--they assured us that once we saw the pictures and video of today we most certainly would--they were right. Watching it on video for the first time felt even more emotional and we both cried--what a gift is our son! What an amazing gift is parenthood! I pray that we both can hold on to this profound understanding God's love that we have experienced today--if we can, life will be sweet for a very long time...if not, we have this moment to remind us.

We headed back over to see Par after dinner--and thankfully he was asleep--so we just said his bedtime prayer over him and then kissed him goodnight. We want to remind everyone of the other precious babies in the NICU--Ella, Jonathan and the new CDH Baby girl. Ella is recovering well from her recent surgery--there is talk of extubating her in the next few days--but I know her parents want her to just take her time--please pray that Dr. Kays will be able to discern the perfect timing for this step and the step to start her feedings. Jonathan is still on ECMO and waiting for his repair surgery--we continue to pray for his liver and kidney functions. And the new little baby--we saw today that she has been put on ECMO. We ask that the Lord will protect and comfort her and her parents during this journey that has just begun.


We thank the Lord again for His many blessings.

Love,
Liz, Rusty & our son, Par

PS- The extubation video from yesterday's post is now working properly

EXTUBATION!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

That's right--Par was extubated this afternoon--a complete surprise for us! We checked on him early this morning and the nurse said he was doing well and his blood gas had been good at 4am so he was weaned a tad bit more. When we got there it was really busy--the new CDH baby had arrived (a little girl) and the NICU was hoppin'! We visited with him for a while--he still seemed a little confused by his new surroundings--but we had a big surprise for him--his new mobile! We were also a bit confused--he looked different but we couldn't figure out why--and then we realized the oximeter strip (the thing on his forehead that measures oxygen in the brain) was missing--we were seeing Par's head for the first time--and it is just as cute as the rest of him! When I left to pump (which if you haven't figured out by now, is an every two hours ritual)Darrell and Mary took turns visiting with Par. When I was finished, I sat in the waiting room and waited for Darrell to come out so I could go back in and sit with my precious baby. Rusty and Darrell came out together and Rusty said (without any sort of facial expression), "Dr. Kays says he needs to speak with us together"--or course I had a mini-freakout in my head and quickly asked why. Rusty then said, "He thought Par's mama would want to hear him cry for the first time when he extubates him"--I was so excited! So we went in and waited excitedly by Par's bed. I was telling Par everything that was about to happen--he just stared at me looking very confused. Dr. Kays came over and joined the two nurses and....well...just watch the video. (FYI- you will see the actual extubation, so if you don't like seeing tubes pulled out of a little baby's throat--then you may want to prepare to turn your head) Rusty and I are so proud of Par--this is such a HUGE step for him and we are praying that he will take to the CPAP. The CPAP is the getup he has on in place of his ET tube.



We are headed back over to visit our baby and will update later tonight with some precious pictures of him. Liz, Rusty & Par

UPDATE: 12:10 AM

Par is sound asleep--he is tolerating the CPAP very well with saturations of 100/100. We tucked him in with his blanket made by his Gigi--he is very warm and cozy. As much as we wanted to wake him up--we knew it was best to leave him asleep since he had been a little agitated earlier by this big change. Rusty and I stood over him and said our bedtime prayer.

Please keep Jonathan, Ella and new CDH baby girl in your prayers. We ask God to bless each of these babies and all of the parents--we thank him sincerely for this amazing journey.

May God bless you.
Liz, Rusty & Par

Happy 1st Thanksgiving Par!!!

Par had a wonderful Thanksgiving today (and three week birthday)--he is very thankful for all of the prayers that have been said for his recovery and he is especially thankful for Dr. Kays and his incredible team that has given him his life.

We called to check on Par early this morning and found that he had been weaned on the ventilator a bit more because he had a good blood gas. When we arrived later that morning Par was asleep and shortly thereafter I went to pump. Rusty's dad and grandmother came to visit again and thankfully Par was awake for his audience. We've learned that Par wakes up really early and then has his midmorning nap, only to wake up again around lunch--and when he wakes up he is wide awake.



After pumping, Rusty left and I spent the rest of the time knitting at Par's bedside. While knitting, I overheard some of the nurse talking about moving Par today because of another CDH baby due tomorrow. My mom came around 2pm and we grabbed some lunch and visited with Par who was having a pretty fussy time because of a wet diaper and a dangling central line. He ended up having an x-ray to make sure he hadn't pulled the central line out--thankfully, it looks fine. By this afternoon, Par was weaned even more on the ventilator--12 breaths/minute! During this time, I also whipped up a little indian headress for Par (and one for Ella) so he could feel festive and in the holiday spirit.





By the time they started to really talk about the move, Rusty had returned. Apparently it is a pretty big ordeal with the drips, monitors and ventilator--so Rusty and I left right as they were getting ready to move Par. We would have waited for the entire move, but with it being Thanksgiving there were a few less nurses on staff in the NICU (no worries – all babies are getting their necessary care), so it took a good amount of time to get the number of nurses available (with babies stable and doing well) to make Par’s “move”. So, Par made his “move” while we went home for Thanksgiving.





Thanksgiving dinner at the hotel was amazing! My mom did an incredible job making us feel at home--and our T-giving guests made it extra special: Tina & Josh (Ella's parents), Jasmine (Jonathan's mom), Mary & Darrell, Memaw, Mom, Sal and me. The only upset to the fantastic meal was Sally finally getting the larger end of the wishbone when she and I split it.



I was excited to return to see Par--all of us parents arrived back at the NICU at the same time to visit our precious babies. As we expected, Par was very cozy in his brand new big boy bed and new spot! It was a little dark and sort of in the middle of everything--but I'm sure we'll get use to it (we were so spoiled by his big room). Par was asleep so we decided to leave him in peace.



Rusty and I are very thankful for all that God has given us. The blessings we've received while in Gainesville have been nothing short of miraculous. We thank each one of you for your prayers for our son.

We continue to pray for Ella and Jonathan as they continue their own journeys--we are thankful for their precious lives--and their precious parents.

Thank you for your love.
Liz, Rusty & Chief Par Monkey Toes

Peaceful Par

Thank you God for giving Par a peaceful day. We praise You for Your perfect plan for our son and we thank you for giving us patience as Par is weaned.

Par continues to wean well on the conventional ventilator. He is now on 40% oxygen (they won't wean anymore on that) and 24 breath/minute (they wean down to anywhere from 15 to 5 before they extubate). He has continually had good blood gases that has allowed his progress and his pre/post saturations have remained at 100/100.



We spoke to Dr. Kays today and he said he is going to wait until Par is extubated before they try feeding him. This is a little different than Dr. Kays' original plan to remove the replogle today and feed him later this week (they like to take the replogle out and see what happens for a few days before they feed him--the replogle is a tube that goes down to his stomach and drains out extra "stuff")--but Dr. Kays once to extubate first and then work on feeding next--which is sort of the order of things anyway--feeding is the next big hurdle after extubation--we are praying that Par will not have any reflux issues--and of course that he'll take to oral feedings and then naturally to breast feeding.

Par was asleep when we arrived today but then woke up and was fussy (he was on his tummy). We gave him his pacifier and he sucked on it for an hour and a half--this wouldn't be such a big deal, but we had to hold the pacifier for him to suck on it--which was fun until we needed to eat lunch--which didn't happen until 3--Par might be a good sucker when it comes to his pacy--but obviously Rusty and I are the bigger suckers since we stood there holding it in his mouth for so long--he is going to be so spoiled. It was precious--he would just gaze back at us--he seemed so content, so peaceful--not at all like a sick baby with tubes going in and out of him. I think in a way it was our first glimpse of "regular" parenthood--we look forward to that time.



After lunch, I sat with Par for the rest of the afternoon while he slept. I have started knitting my stocking now--I've just about finished Rusty's! I did get to change Par's diaper several times today which was great. As a reminder, I still have never held Par, so changing his diaper is a pretty big deal to me--plus, it doesn't hurt that he never cries when I change is diaper and he always cries when a nurse changes him--I love being his mama!



Right before shift change mom & Sal stopped by to say hello to Par and then Rusty showed up with his dad, Mary and Memaw (his grandmother from Asheboro). They had just come into town and will be spending Thanksgiving with us. Although Par was sleeping, I'm glad everyone got to see him before shift change! While leaving we saw Fr. Gillespie entering the hospital--he had stopped by to say a prayer and bless Par the night before while we were gone, so we were glad we got to meet him and thank him in person.



We came home and ate dinner and then of course, I pumped. I took an hour nap (which was SOOOOO nice) and then watched some tv--and then pumped again. We headed to see Par around 10pm--thankfully he was asleep (remember, I can't stand leaving him while awake)--so Rusty and I just looked at him for a few minutes and then said our bedtime prayer and left. As I said before, Par's day was peaceful.

We continue to pray for Jonathan and his mom as they continue to take baby steps. We ask for miraculous healing on baby Jonathan's liver and kidneys so he may have his repair surgery. We also continue to pray for baby Ella who had her feeding tube/nissen surgery today (typical Dr. Kays surprise for her parents)as well as a central line put back in and her abdominal wall gortex patch removed. We ask that the Lord will help her to heal and for her to only move forward from this point on. We also pray for Tina and Josh as they continue to hang on to the Lord's promises for their life--we ask that He will renew their faith and trust each day--and that tomorrow they will feel 100%.

Thank you for your prayers.
Love, Liz, Rusty & Peaceful Par

Breaking all the Rules

With CDH babies, every one is different. Seriously, no two are alike. I look at the current situations for Par, Jonathan & Ella--they all go against the expected paths for the severity of each of their own cases. Jonathan's hernia is the least severe out of the three--but he is definitely the most critical at this point. Par's hernia was thought to be moderate and we found out it was severe after the surgery and now he seems to be breezing through the weaning process--and Ella, precious Ella--everyone says girls have an easier time with CDH because they are better fighters--Ella is definitely a fighter--and although her hernia was severe--her stay has been much longer than the average CDH baby. When it comes to a rule of thumb for CDH babies--there isn't one--which is why Dr. Kays is so amazing--he has to rewrite treatment for each child without knowing the outcome and do it confidently--there are no rules, except for the ones he makes as he goes along.

As you may have noticed from our last two posts--we were less than confident in the care of Par for the past two nights. Let me first say that we have no doubts in the competence of any of the nurses at Shands--we know they all are well trained with a lot of experience. But it was difficult to leave Par and feel that he wasn't going to receive the attention we think he needs. We knew he'd be awake (since he slept most of the day) and we knew that he would need some interaction, someone to calm him and someone to suction him throughout the night. Of course we can't say whether or not any of this happened--we weren't there. We can only go by our intuition which never had us feeling this way in the 2+ weeks we've been here until now--so that has got to mean something. Anyway, this morning we walked in to find that Par had not been weaned because his blood gas wasn't very good. We were disappointed, especially when we found out he hadn't been suctioned before the blood gas was taken. There aren't any definite rules with suctioning--there are actually two schools of thought--suctioning before a blood gas is taken (like 45 min before) will give a better blood gas; or suctioning before a blood gas is taken can stir stuff up and make the baby agitated resulting in a bad blood gas. Well, when Dr. Kays came in this morning he looked at Par and how good his sats were and stuff and looked at his chart and saw he hadn't been suctioned--he reprimanded the day nurse for the night nurses' mistake about not following the "rules" of suctioning--he was frustrated obviously--he went ahead and weaned Par down.



Rusty and I were glad that Dr. Kays could still tell that Par was doing well enough to be weaned. When Dr. Kays came in later, I was there and he stepped in and said with a bit of a laugh, "I weaned him earlier--I'm not even following my own written orders!" If there is one thing the nurses keep telling us about Dr. Kays--you never know what he is thinking and he changes the rules without telling anyone--apparently he even breaks his own!

Par was awake when Rusty and I visited this morning--he seemed happy. He didn't cry when I changed his diaper--he only fussed one time when he needed some suctioning--otherwise he was just a happy little baby.

Rusty left to do some work and mom brought me lunch. After lunch mom came back to sit with me for the rest of the afternoon. We walked in and immediately Par's nurse came to tell me that mom would need to leave because the rules of the NICU say that only the parents can be in there between 3 & 4pm and so mom would need to leave (it was 3pm). I was dumbfounded--we've almost been here 3 weeks and no one has ever told us anything about "visitation rules" other than the 7pm shift change rule where nobody can be there. I was so frustrated--mom left and I just sat down and started knitting getting more and more frustrated. Shortly thereafter, Tina and Josh walked by and asked what was going on--I immediately started crying--I don't know why it hit such an emotional nerve, but it did. Of course, we don't want to break any rules--it was just frustrating that today is the first day they decided to enforce them.

Saying goodnight to him this evening was easy and felt good--we left with a very good feeling about his nurse. She seems very attentive and Par looked extremely relaxed. We pray he will have a peaceful nights' sleep and have a good blood gas so he can be weaned a tad more. As you can see in the picture, at one point Par started "thinking" really hard about something and reached back to twirl his hair--is it possible that Rusty & I created a mini-Joe IV? (oh no!!!!!!!!!)



We continue to pray for Jonathan and Ella. Jonathan's kidneys started working a little better this morning--we ask that God will give full function back to his kidneys and stop the swelling of his liver so he may be recovered for his hernia repair. Ella was reintubated today--we pray for her comfort as she readjusts to her breathing tube. We also pray for continued strength of Tina & Josh--we ask that the Lord will renew their confidence in Dr. Kays and in God's perfect plan. We thank God for their example.

Thank you for your prayers for Par and his friends.
Much Love,
Rusty, Liz & Par

Progressing Par

We woke up a little late this morning not only due to my typical night-time pumping, but also due to the fact that our little girl (dog) Tiffany decided she HAD to go out at 4:00am. We called the NICU when we woke up to find out how Par was doing and the daytime nurse reported that Par had a good night and that he was doing well. His blood gas was good (not exceptional but good) and that was basically all the information we had at that point.

When we got to the NICU we were still a little apprehensive because when we left Par last night we let him know that he may have to “fend for himself” during the night and once again reminded him that we were at Homewood Suites in room 311 if he needed to get in touch with us. When we got to his bedside we were happy to see not only that Dr. Kays had been there, but that he had also ordered a gradual weaning of his oxygen and breaths per minute (provided by the ventilator). The instructions were to wean his oxygen down gradually (2 points for every favorable blood gas) and to wean his breaths per minute down 4 breaths per minute each time his CO2 levels were below 56. Par’s most recent blood gas was taken at 4:00am and Dr. Kays had ordered that they would be taken every 8 hours (a very gradual weaning process), so his next one would be at noon. We also were told that a “babygram” was ordered, which is a more extensive x-ray of the full body and abdomen to determine whether or not the area of concern in his intestines is an area of infection or just nothing.



His blood gas at noon was good, so they weaned his oxygen down to 44 (room air is 20) and his breaths per minute were at 52. During our morning visit with Par he was pretty much asleep until I had to go pump at a little after noon (after the blood gas). While I pumped Rusty sat at his bedside and played his music for him (he was awake but not very responsive). About the time I came back from pumping he was starting to become wide awake and was intent to listen to his music and take turns looking at me, then Rusty, then his blue bear (dangling from above), and then back to me. He definitely can tell the difference between his mom and dad and also likes looking around to see what else is there. Rusty was planning on leaving to go work when I got back from pumping but since Par was awake and obviously taking enjoyment in having his mom and dad (and blue bear) there Rusty didn’t end up leaving for another hour or so.



During this time, we also got to speak to the nurse practitioner about Par’s x-rays and she told us that his antibiotics had been discontinued and that the “area of concern” was either nothing or had been knocked out by the antibiotics. Nevertheless, they will continue to monitor it in the upcoming days. Although I had hoped Par might be able to start feeding today or tomorrow (with small amounts of breast milk delivered directly to the stomach via tubes), we were told that they would hold off for a few more days to make sure the incident in his intestines wasn’t an infection or bacteria. In any case, although feeding is delayed, we are still encouraged because Par has still had some poops indicating that his intestines are performing normally.

Rusty and I noticed that Par's hands were sort of sticky from all the tape he's had on him so we decided to clean his hand. You would have thought we were sticking him with needles--he was so upset. As soon as we stopped (we each had a hand) it was as if nothing had happened.





When Rusty left mom came to sit with me while I worked on Rusty's stocking. Dr. Kays came by and seemed encouraging about Par's progress. He checked on Par and looked at the ventilator and said, "Looks good. We'll see how he does!" and then left. It was good to see him after a few days--I just hope Par continues to do well on the ventilator.

When we went back tonight, Par was on his tummy in what looked like a somewhat uncomfortable position. Although we wanted to move him around in an attempt to make him more comfortable, he was sleeping well and continued to do so during our visit, so we left him to the care of his nurse. I don't think I could bare to leave him awake like I had to last night. During our visit we learned that his oxygen levels were good, but that his CO2 level was at 59 (above 56). So, per Dr. Kays’ orders, his oxygen levels were weaned down 2 points to 42 and his breaths per minute remained at 52. We were also told during our daytime visit that Dr. Kays nearly always weans things (except for things weaned in extremely small amounts) in even numbers because he seems to have an aversion to odd numbers. Being that I also have an aversionj to odd numbers, I feel even more comfortable about putting my child's life in this man's hands! Before we left, we read him his bedtime prayer as usual (with his music in the background) and said our goodbyes to him and told him we’d be back to see him in the morning.

We spoke to Jonathan's mom earlier today and learned that his kidneys are not functioning properly--please pray that God will heal his kidneys so he may continue on his journey of fighting his CDH so he may have his repair surgery. Also, Ella's rough night was due to her left lung collasping--pray that her lung will be strong and able to take the next steps for her recovery. We also ask that you will pray for their parents so they may be refreshed each day so they can be 100% there for their baby and enjoy each day with them, while being able to make critical decisions about their care.



We thank you for all of your prayers--we feel them constantly and we give all the glory to God for the miracles of the friendships we've made and the progress of Par. We thank you for being a part of our journey.

Much Love, Liz, Rusty & Par