Grant's Journey

Quick note... Thanks for the encouragement. We got a little break this morning. Grant's Bili levels finally dropped below 13 (now at 12.8) so he is off his lights!! YES! We also got permission to move to the floor for a few days though we will be back in the PICU on Friday after surgery. In the meantime, we are now in Room 3074 and have our own spacious suite with a couch and no limit on the number of visitors at a time! YES! If you wanted to visit, this is the place to do it (just make sure you are healthy!) Just let us know if you want to come up! Our room number here is 801-662-3074. I think I will really enjoy the privacy up here for a few days. It will make it hard to go back to the PICU on Friday!

Well, as I somewhat had predicted last night, we have not moved an inch. I have learned that around here, we do not believe anything until the moment when it is happening! Today has been rather discouraging. We called in this morning to learn that Grant's Bili levels are untouched from yesterday and since they have been trying to move him off of his UVC line, we have not been able to hold him at all. First thing this morning, they told us that we had to go back to the Flouro lab to repeat his upper GI test. Apparently, because he had an NJ tube in his intestines the last time, there was some excess gas and straightening of his intestines so the test was not good enough. We went back for the Barium test and X rays and just got a whole dose of more bad news. I wish that I could draw the pictures to put on my computer here, but I am not good enough in Paint to attempt that! We have basically determined that from today's testing, Grant has a "malrotation" of the intestine...

Another fairly quiet day around here today. I really enjoy these quiet days. This morning, Kyle and I came up and held Grant (under his lights of course... I had a nice discussion with the nurse practicioner yesterday and made the case that as long as the lights were on him, it shouldn't matter whether we are holding him or not! He decided to agree with me and Grant's levels dropped from 19 to 15... still trying to get it below 13 though!). We left to go to church here on the third floor and I have decided that I want to become a permanent member of the PCMC LDS Branch! Church here is wonderful. Everyone in attendance are facing serious problems and feel very humble. The sacrament meeting is only 30 minutes and I felt completely rejuvenated. Wonderful! Grant is continuing to behave himself. He began a drug called Adavan last night to help him with his drug dependency. It helps him to come off his meds a little more and he has been much more content today. With us being able to ...

Things have been fairly peaceful around here today. Little Grant Man is still chilling under his lights and to our great disappointment, his Bili levels do not seem to be changing AT ALL. Our NP, Cory, suspected that perhaps some of my blood remained in Grant's body and he was having a hard time breaking down those red blood cells, but the test was run and came back negative, so we are still not sure why he seems to be so resistant to the lights. We get a few breaks during the day to hold him, but we have to keep the lights on, so Kyle and I have both just pulled out our shades and chilled under the lights with him. Yesterday was not a fun day for me. Our nurse was on double kid duty and I felt like she spent more time focused on the other baby next door neglecting Grant (who is still trying to come off his pain meds and was thrashing consistently.) I left to pump and came back to find that she had moved my belongings and gave my rocking chair to the mom next door and something in ...

What an eventful 24 hours this has been! I am simply exhausted which is why the delay in posts. Before I forget much more, let me try and start with the events of yesterday afternoon. We took a visit back to the Flouro lab for an upper GI test to look at what was going on in Grant's little guts. This was actually extremely hard on me. Grant was a mess yesterday as they were trying to step him off his pain meds in preparation of trying to extubate him. In the machine, Grant was thrashing around and was in obvious pain which resulted in him being MAD! I had to turn away cause it killed me to watch him stuck in a tube where I could do nothing to soothe him. The radiologist pumped him full of Barium and then used a series of X rays to see where the dye went as it moved through his bowels. No surprises here... Grant's stomach and intestines are once again "unique". As it was explained to us, Grant most definitely has the malrotation of the intestines. It appears that his s...

This morning, we arrived to find Grant thrashing around and trying to pull out his tubes. It broke my heart to see our little guy in obvious pain and clearly mad at the world. They are working today to try and see if they can get him extubated (off of his breathing tubes) and as part of that, they had to reduce some of the pain meds he is on so that he is alert enough to breath. Since he is not handling it very well, he has been getting morphine to help him out. We are testing his breathing in a spontaneous breath trial right now to see if Grant can breath on his own well enough to get rid of his ventilator. They will repeat this test in the afternoon again and if he is responding well, he might get to lose some tubes. That would be wonderful and would hopefully allow us to hold him within a few more days. Yes! Yesterday, we finally got a call to go to Radiology to place his NJ tube and check out his guts. The Nurse Practicioner had hit some serious blockage when she tried to place it,...

Surgery recovery continues to go pretty well for Grant. He has maintained his heart rate fairly well, though last night during shift changes, his heart rate jumped and they performed an EKG to test his electrical impulses and make sure he was not back in his rapid flutter pattern. Luckily, it just appeared that his heart rate was high and that he was not pulling his favorite trick on us. Grant's latest development is some Jaundice. He has been chilling under his Billi Lights since he came out of surgery yesterday. Since he avoided the bypass machine, his blood was not able to clear out as they thought it would, so we have him hanging out in some sweet shades while he is super sedated and recovering. I am just glad that he is still on some pretty strong pain meds so he can sleep through most of the discomfort. After his initial MRI where the doctors were noticing that his liver appeared to be midline across his abdomen (as opposed to on one side like it should be), they began testin...

Everything has been going very well considering Grant just came out of surgery. I thought I would just post a quick picture with this update. The IV in his neck should be removed tomorrow morning. We also had a conversation with Dr. Zebrack about the flutter. She said that it was most likely irritation in the right atrium from the lines. She thinks ones all the tubes and such are out of him that there will be no other issues with fluttering. We can't wait to get those tubes out!

Dr. Burch just came in to visit with us. The surgery went much more quickly than anticipated (it was scheduled for 6 hours today and only took 3 1/2!). He was able to place the shunt in a good place and he decided to disect another of the pulmonary veins just to take a look at the flow. It appeared to look pretty good, so he sewed it back off. Dr. Burch told us that Grant has some pretty unique anatomy. All four of his major veins come back and wrap around the heart before connecting to his right atrium which looked a little strange. After the discussion yesterday about heterotaxia, Dr. Burch told us that it is possible that Grant actually has two Right atria instead of the usual right and shrunken left which might also indicate this condition. He said it was difficult to tell from the outside (since he did not cut into that chamber), but his left atrium did not look normal, but did not look like a classic second right atrium either. Just before surgery, Grant decided to have another o...

Bonnie came out to inform us that Dr. Burch is done with surgery and is closing his chest. Yay!!! We were not expecting his chest to be closed due to concerns about swelling. However, he will still have a few tubes protruding from his chest for draining purposes. Dr. Burch is expected to come out to speak with us within the next 1/2 hour.

Kyle just took a phone call from the surgeons. Grant is doing great. They have just finished placing his BT Shunt and because everything looked good with his arch, they were able to complete the shunt WITHOUT putting him on a Heart Lung Bypass machine! This was our biggest hope going into today because it should greatly reduce his swelling and is less traumatic on his heart. YAY! Next step is to close off his PDA which they will begin shortly. Dr. Birch is planning on keeping him on the table for a little while to watch his Oxygen saturation levels, but so far, so good! Thanks for the prayers!!

They have made the incision and are getting started. We will hear from them at 10am when they come out to talk with us.

This is Kyle updating at this time. - Allison and I got up at 6am this morning to get ready for Grant's surgery. We pretty much just ate breakfast and went straight to the PICU to be with Grant before the anesthesiologist took him away for surgery. The best part about being with him this morning was that Allison and I had another chance to hold him for just a few more minutes before the anesthesiologist wheeled him away. As I was holding him and our family in a little huddle, Allison prayed over Grant and those surgeons(Dr. Burch) and nurses that will be performing the work. It was a special moment for me. After Grant was prepared we walked down the halls towards the surgical rooms. Luckily this time we didn't have to take any elevators!!! The anesthesiologist granted us one last time to give him a kiss on the head before we split ways and he goes under the knife. Grant to surgery, parents to the waiting room. Allison took off back to the PICU to pump and shower in the next hou...

** Enjoy this sweet picture from Julie Williams, a wonderful photographer from an organization called Now I Lay Me Down To Sleep... I will post more about this experience tomorrow, but the picture was so cute I couldn't wait!** As you have seen (if you haven't scroll down for the additional posts about today), today has been a rather eventful day. After the fiasco in getting Grant transported to the MRI, we were able to get him easily back and hooked up to his PICU station again. What an entourage it takes to transport a baby! I was most nervous that the respiratory therapist would trip or forget to squeeze his bag once and not let Grant get any air! We teased him enough and thankfully, he kept his steady pace! Phew! After the MRI, we were visited by Dr.'s Pulchalski and Mennon (cardiologists) who both explained what they read from the MRI's. It appears that Grant indeed has the four main Pulmonary Veins that are essential for bringing oxygenated blood back into his hea...

Allison has shared a very special moment from earlier today about us finally getting a chance to hold our little Grant. I love him SO much!!! It was so much fun to hold him finally. Well, the nurses actually allowed us to hold him for a few seconds in the L&D room, and I was able to walk him across the room and pass him through the window to the NICU nurse, but that was it! (at least until today). It was a special moment for Allison and me. On to the purpose of this post. Today we had to take a trip with Grant down to the MRI room to get some better scans of his heart. Allison went to pump while Amy (my wonderful mom-in-law) went with Grant down one floor to the MRI room. First of all, Grant had some problems with his oxygen saturation levels so they took a little pit stop to the nearest room on the way out the door to get hooked up to a machine that will suck his saliva from his through allowing the oxygen to get through the tubes. Once that was taken care of, we exited the PICU a...

It took 2 nurses, one Respiratory Therapist, begging from one really hopeful mommy, and many hours, but this was how we spent a few hours during lunch!!!! **Sigh** :-) I am happy! (More detailed posts to follow... today has been eventful!)

I have been reprimanded through the grapevine for not posting more... Sorry friends! We are a little involved here with the cutest little man in the whole world! Do you blame us?!?! Today has been a wonderful day as far as Grant is concerned. Very calm. Sundays around the hospital seem to be pretty laid back. Not many people are around and they put off as many tests as they can, so our Grant man got some good sleep in today. They took him off his dopamine drip and also weaned one of the medications that was being used to keep his heart from going into the crazy rhythms. So far so good, but the attending doctor told Kyle and I that it typically takes a while for the medicine to be out of his system, so tonight and tomorrow will be what will tell how his heart is responding. For now, we have one cute and sedated little guy who works hard to try and bypass all of his tubes and intubation lines just to get his hands up around his face. This always was his favorite position in ultrasounds a...

Yesterday was again a very busy day, so this post will come this morning! Where to start... hhmm...First off, a thanks to our wonderful nurses! Above are Pam, Shellie (who is in her nursing capstone), and Nate. They tell it like it is and don't sugar coat things for us, but have been wonderful in letting us be involved with our little one. The doctors remain mystified as to Grant's little adventures of his birthday night. Dr. Day, the cardiologist on call this weekend was kind enough to come over to my hospital room to visit with us (I had been bleeding a ton earlier when I was at Grant's bed and decided that it was probably better to be back resting.) He told us that his best guess was that the cath line through his umbilical cord was too far into his heart and was bothering him, but the fact remains that when they moved the cath down, it happened again, so it will remain a mystery. Grant rested well during the day. His little body is very sensitive to touch with the medi...

I apologize. I had started a post yesterday evening, but with so much going on, it was never finished and then things changed dramatically, so here is the latest update. I am having a rough recovery time. 2 nights in a row of being up through labor and then delivery and Grant's transport to PCMC have left me utterly exhausted. This being said, I slept for about 2 more hours last evening and when I was awake again Kyle and I had some dinner and then went to visit Grant again after shift changes. He was not really enjoying the prostaglandins that were being administered to keep his heart valve from closing off. They make his touch receptors very sensitive and so he feels achy and was pretty uncomfortable. Because he had a procedure to open a line through his umbilical cord done and many other pokes and prods, he was too uncomfortable to be able to be held, so we are still waiting. The awful part of the day came when we went to visit in the evening. Our parents had gone to rest for th...

Our little Grant has finally arrived on March 20, 2009 at 12:23am. He weighs 7 lbs 8oz, and is 20.5" long. Allison did get a chance to hold Grant for a few minutes while the nurses cleaned him up. I then was able to hold him for a second and pass him through the window into the NICU to the neonatologist. I am waiting for the chance to go back into the ICU and be with Grant. Now we wait for the cardiology journey to begin.

I know many of you are anxiously awaiting an update since it has been almost 6 hours since the last. There is really nothing new going on. In the last 6 hours we have discovered that Grant does not like Pitocin. We have had to shut it off 3 times to let him recover and is currently on a .5 milliunit dose. Such a small amount that the Hospital had never used before. She is dilated between 5-6. And so we wait... because Grant will do this his own way. Allison's blood pressure has been pretty low wiping her out and is currenlty resting on oxygen. In an attempt to help her regain some strength they have given her some glucose water to regain some strength since she has not eaten anything in the last 24 hours. So, we just hope and pray and wait.

After a long night for Allison, things were moving pretty slowly this morning. We did find that she was 70% effaced and dilated 2 cm. That was about the best news of the day so far. Allison discussed whether or not she could shower this morning with the night nurse, but she was discouraging of the idea. However, when the new nurse, Sandy, came in for the day shift we were told that Allison should have showered and she could have had breakfast had it not been for the night nurse who began the Pitocin early this morning. This did not make Allison very happy! But she was grateful to get a shower despite the nausea at the end of the shower. After getting her back to bed and comfortable, we started having discussions about if and when Allison wanted the epidural. Sandy, our new favorite nurse, really encouraged it, and so Allison felt best to just get the epidural in and ready even if she didn't actually want the drug going at the time. Aside from some of the painful contractions, the ...

The time is now 11:27 on March 18, '09. It has been a very long day. (I am sure many of you have been refreshing this page all day and wondering if you would see one tonight!) One that began at 7am this morning with a phone call from the Administrative Law Judge (ALJ) regarding my unemployment benefits. That was over after about 1/2 hour and I was off to complete my next task of the day, eating breakfast and preparing for an exam. After cramming my brain with last-minute preparations I was finally ready to begin taking my last tax exam at 9:20. After one hour I submitted my exam to my professor and I was out the door ready to conquer the next task at hand. Allison and I spent the next hour doing putting together our last of the preparations for the next month of life living on the Hospital pavement. We finally got out the door at 11:30 to head to my dental appointment in American Fork. We arrived right on time for my appointment and I was taken back almost immediately following a...

I have to admit.... I am a little disappointed after our appointment today. I was CERTAIN that all of these contractions and labor pains were doing some good. We saw Dr. Byrne this morning and after learning that my amniotic fluid is well and above what is should be (the NST nurses words were "Wow... must be rough to be carrying so much extra fluid around!") they checked my cervix and I am STILL stuck at the blasted 1! I was effaced now at 50% so at least something good is coming from these contractions, but Kyle and I were both a little disappointed. I had really hoped to skip the cervical ripening process, but it looks like I will not be so lucky. The plan is to set up the RV Wednesday afternoon and check into labor and delivery that evening to being cervical ripening and depending on the medicine they use, they may start the Pitocin simultaneously. The goal is to get Grant here early Thursday for stabilizing and then off to cardiology so they can make his surgery plan. Rig...

Quick little update... We are in SLC waiting.... and waiting.... still no news which is good. I have been monitored twice over Thursday and Friday and miraculously, my blood pressure has dropped and maintained which means that I got to go to my brother's wedding yesterday and have been able to not be in the hospital! YAY! On the flip side, I have been having consistent contractions in all of the NST's this week (usually about 4 minutes apart!)and at the wedding yesterday, I went at least 4 hours with contractions averaging every 5 minutes or so. I obeyed my mother and tried to keep still until the last hour of the party and then I decided it was ok if I went into labor, so Kyle and I hit the dance floor! Luckily, the contractions finally stopped after an hour or so in bed that night and have been off and on all day today, so I will see if I have dilated anymore when we see Dr. Byrne tomorrow. I would not be too surprised if I don't make it to my induction date, but time wil...

Oh my heart is heavy today. Kyle came into our room this morning where I had been resting to tell me that our sweet friends Leah and Steve had to send their little girl home to Heaven last night. Leah and I have become very close through the last several months as we have both learned that we have heart babies and that we were due only a week apart. We had the same doctors and the same testing schedules and had looked forward to sharing support in the PICU and being RV buddies in the parking lot. I have been very comforted by their perspective and have enjoyed having some company along this road. Avery was born yesterday at 2:10 pm and was taken to be stabilized, but had some complications with her lungs. Over the next several hours, her parents thought that she was stable, but late last night, she was crashing and her parents were told that no matter the interventions tried, the outcome would likely be the same. They were able to be with her last night as she passed away, only hours a...

I am not in labor! YAY! I first should probably apologize to the many friends and family who have been checking for updates frequently through the day... it has been a wild one. We began at 8:00 this morning at the hospital and Grant passed his NST in 20 minutes!! This was a FIRST TIME EVER and I was thrilled. I on the other hand felt really funny all morning and was very light headed. In that 20 minute test, I had 6 contractions varying in intensity. This concerned the tech who alerted Dr. Byrne. We then went to our ultrasound to check Grant's growth and make sure he was responding ok to my contractions. His amniotic fluid was increased from last week (Typically it decreases at this point), so I am unsure what implications that has. Today, I am at 36 weeks and 5 days and Grant's had was measuring at 43 weeks and 2 days!! Off the charts huge! The rest of his body was right on schedule and they estimate him to be 6 1/2 pounds give or take a pound. When we met with Dr. Byrne, my ...

I hesitate to even post because it means that Kyle's perfect tribute to Gracie will not be the first visible post. She has made a large impact on our lives and we ache for her family who we visited with in the PICU only a few weeks ago. This is a very somber time in the heart community and it has made me a little extra emotional approaching Grant's birth, though I feel very peaceful at the same time. His mission for his time on Earth will be made known to us and our job as parents is to help him reach this goal. It is a little weird for me to share such personal emotions for all to see, but I think that like Gracie and so many other beautiful heart friends, their lives become a part of all of us. Please excuse me for the moments when I feel really vulnerable here.... it is not always easy to share this personal journey, yet I feel compelled to do so, possibly just so we will always have our own record of little Grant. We were at the hospital on Monday for one of the final check...

This is the first time that I (Kyle) have actually posted to Grant's Journey. I normally would not take time to do because of all the things going on with work, doctor's visits, and my ambitious attempts to finish all my classes before Grant arrives. However, I was truly hit with a vast array of emotions and heartache after learning of Gracie's condition (read blog post - " Full Circle "). Michele, Gracie's mother, posted an update to the blog that everyone hoped would never have to be written. My heart ached after reading all the other posts that led up to yesterday, let alone reading the March 1st post was almost too much for me. I feel this blog title is most appropriate for the events of yesterday. I looked up the definition for "reverence" and the definitions were thus: 1. a feeling or attitude of deep respect tinged with awe; veneration. 2. the outward manifestation of this feeling: to pay reverence. 3. a gesture indicative of deep...