I've had mixed feelings about doing a recap of Mark's scary time/miraculous moments at Primary Children's Hospital. Part of me would like to forget about all of it. But the better part of me realizes that, despite of how hard this has all been, we have been so blessed, and I want a record to always remember those blessings. So here is Mark's story. Most of this is from a notebook that I wrote in while we were at the hospital. I've also included the update emails that Nic would send out each day.
Sun., September 4, 2011
It was just a normal day. The night before I had been debating whether or not to take Mark to church. I was feeling good and he was doing really good. But I decided to give him at least one more week before exposing him to all of the germs that float around with any large gathering of people. Saturday night, Mark had slept longer through the night than ever before, giving me almost seven hours of sleep. He had always been a sleepy baby, but this was an added bonus.
Sunday morning we mainly lounged around all morning. Nic had a meeting before church, so I got Sam ready for church and then the two of them headed off to church together. I gave Mark a sponge bath and trimmed his finger nails. Around 1 p.m., Mark nursed the best that he has ever done. Then, while he was napping, I took a much needed shower. After that, I started getting out my pump and bottle supplies because I was planning on trying to introduce Mark to the bottle later that day.
Mark started to fuss a little, so I picked him up and rocked him in my arms a little until he fell back asleep. Then I decided to throw in a load of laundry. When I came back into the bedroom, Mark's eyes were open, but his head was kinked back in a weird way. At first I thought he had wiggled into a weird position and gotten stuck that way. I said something like, "What are you doing, silly boy?" and then I tried to straighten him out. But his body was completely rigid and then I noticed that his eyes were bulging and seemed to be stuck looking outward in opposite directions. His left side was the most affected. I didn't know what was happening or what to do. I didn't know if this was some little baby quirk or what. But deep down I knew that something was wrong. It was the worst feeling in the world. I felt so scared and powerless. First, I tried to call the pediatrician's office because they have an on-call pediatrician. But I couldn't focus on the message enough to get the information that I needed. I needed to talk to a real-live person. I had the phone number for Alta View (where I had Mark), sitting right there on my bed, so I called them. The nurse that I talked to told me that she couldn't make a diagnosis over the phone but judging from the concern in my voice (I was bawling at this point), she recommended I bring him into the ER.
So then I called Nic at church. I knew he had his phone on him, and I was just praying that he would answer. He didn't answer at first, so I texted him, and then called him again. All of these calls were within a five minute time frame. Luckily, Nic had been visiting with the bishop, so he noticed my call. He answered the second time and I managed to tell him that something was wrong with the baby and that I needed him to come home right then. He hurried and got Sam from nursery and came home. Meanwhile, I got Mark into his car seat somehow, grabbed our insurance information and the diaper bag, put Gus away, and, at the last minute, thought to put my shoes on. It seemed like forever waiting for Nic to get there, though it was less than ten minutes. I didn't know what was happening but I did know that something was seriously wrong with my baby. He wasn't making any sounds, but continued to be completely rigid, his head arched at a terrible angle, and his eyes wide and in different directions. I would learn later that this was a seizure. He was in this seizure the entire time until we got to the hospital and they gave him some drugs. Just before Nic got home, I called him again to see how close he was and to see if maybe I should call 911. Nic hurried even faster and as soon as he pulled up, we loaded the baby into the car and headed to the hospital. I sat in the back seat between the two car seats. I felt bad for Sam because he was excitedly trying to show me his picture of Jesus that he did in nursery, and I was trying not to be hysterical in front of him while I tried to assess if the baby was still breathing. It was only about a ten minute drive to the hospital, but it seemed like forever. I swear every slow driver in the world was on the road, blocking all lanes. Nic even ran a red light (after making sure there was no one coming in either direction)! On the way, Nic had it together enough to call his parents and have them meet up with us at the hospital. He also called 911 and they patched us over to the hospital, so the ER was ready for us when we pulled up. They actually had us pull right into the ambulance entrance. Nic jumped out and grabbed the baby's car seat and rushed into the ER. I sat there for a couple of seconds, trying to figure out what to do. It felt like my brain was frozen. I wonder if there is something like mental shock where your brain just shuts down? Finally, I was able to think enough to go park the car, get Sam out, and head into the ER. When we came into the ER, there was already a pack of nurses and doctors surrounding Mark. They had also sent for someone from the NICU because they didn't have any equipment small enough for an eleven day old baby. I was quickly losing the battle to hold it together. I felt so powerless. A nurse noticed that I was struggling to hold it together and offered to take Sam for a treat and a stuffed animal. About the time that she took Sam, Nic's parents showed up and were able to take care of him. A doctor pulled us aside and told us that Mark was having seizures. He also told us several possible causes of the seizures, none of which sounded good. He also told us that they were working on stabilizing him and then planned to life flight him to Primary Children's Hospital. At this point, it was really starting to hit me that this was really happening and that this was really serious. Nic and I mostly just tried to stay out of the way and talk to Mark while the hospital staff got in an IV, gave him anti-seizure medicine, and put him on oxygen.
An interesting note, before all of this, we hadn't really decided what we were going to call the baby. We had had a hard time deciding on his name at the hospital, but had finally given him three names: Mark Emmitt Clay. Nic was leaning toward calling him Mark, but I wasn't really going for that because he has two uncles named Mark, and I thought it would be too confusing. I leaning toward Emmitt. Basically, for the first few days of his life, I would call him by a different name, trying to gauge which name sounded right. Well, at the hospital, they asked me what my baby's name was, and without hesitation, I told them 'Mark'. And so it was decided. He goes by Mark now.
One of the nurses, noting Nic in his suit and tie, asked Nic if he was LDS and if he wanted to give Mark a blessing. Nic's dad came in and all of the doctors and nurses kept working on Mark in complete silence while Nic blessed our baby. The blessing brought so much peace to the room. I'm so grateful for the priesthood!
Soon after that, the life flight team arrived. Primary Children's hospital has their own life flight team that is specialized in children emergency care. They were so impressive with how quick and efficient they were. They had this specialized stretcher for babies that they were able to transfer Mark with all of his wires and IV to. Because it was labor day weekend, all of the life flight helicopters were too far out dealing with other emergencies, so they decided it would be faster to take Mark to Primary's by ambulance. For some reason, it was a relief to me that I wouldn't have to watch my baby fly away in a helicopter. It didn't change the serious of the situation really, but I don't think I could have handled the helicopter. I was able to ride in the ambulance with Mark. Nic made sure that Sam was under control, switched vehicles with his parents, and still arrived at the hospital right after we did!
We were rushed into the ER and, again, I was amazed by the skill and efficiency. The doctors and nurses were a fine working team; everyone knew exactly what they were supposed to be doing, and everyone was doing their part. A social worked named Tim immediately arrived to help comfort us and walk us through what was happening. It was crazy how everything came to us--the pharmacy came to the ER with the drugs the doctors ordered, the lady came to us to check us in and get our insurance information so that we wouldn't have to leave the baby. What really impressed me was that, above their skills, the team was so compassionate. Mark was their number one concern, but they still took time to explain things and say, "it's going to be okay." One of my dearest memories was watching this tall, ER doctor put his arm around my husband's shoulders and talk to him. We knew we were in the right place for the best care of our baby.
While we were traveling to Primary's, I had called my family and told them what was happening, and they arrived shortly after us. They gave us hugs and then waited anxiously in the waiting room.
Mark's seizures were under control at that point, so they began blood tests and did a head scan to figure out what was causing the seizures. The head scan immediately answered the question--intraventricular hemorrhaging. Basically, he was bleeding in his brain. Luckily, it was the best kind of bleed. From my understanding, the ventricles are like the brains pipe system through which spinal fluid flows back and forth. Mark's ventricles were full of blood causing pressure on his brain and thus causing the seizures. Now that we knew the cause of the seizures, we needed to get the seizures under control and figure out what was causing the bleeding.
Mark was transferred from the ER to the Pediatric Intensive Care Unit (PICU) around 6:30 p.m. At 7 p.m. and 7 a.m., they do what we began to call the changing of the guard.. During this time, parents have to leave for a half hour so that the nurses can change shifts without any distractions. So as soon as we got to the PICU, we had to leave. We went and found the waiting room where my parents, my sister, and my Uncle Allen and Aunt Suzy were waiting. It was so good to see them. I remember my dad just hugging me and telling me that everything was going to be okay. "Remember that, Jolene. Everything is going to be okay," he told me over and over again.
We were so shell shocked. We had been crying on and off for about six hours and were so tightly would up during that time. It was hard to believe that it was really happening to us. We ate some food and counted down the minutes to when we could get back to Mark. Nic made some calls to his family and his boss, and I made a post on FaceBook. The more we had to say it, the more real the situation became. When we left to go back to Mark, my family headed home. Nanny Manda went to the house to take care of Sam and Gus.
That night, the hospital made arrangements for us to have a room to sleep in. We decided that I would sleep in that room and that Nic would stay with the baby. One really hard memory happened while I was laying down in the room, trying (without success) to sleep. The sleep rooms are connected to the PICU waiting room. On the other side of the wall of my room was a Hispanic family. Now I don't speak a lot of Spanish, but I understood enough and knew from all of the crying that they had just lost someone. And the fact that we were at a children's hospital told me that it was a child. I lay there for quite awhile listening to them mourn. Then I felt really strongly that I should go out and do something. I didn't know what to do. Finally, I went out into the waiting room and hugged them. I told them I was sorry and went back into my room and cried. I felt so sad for them and at the same time, so happy that my baby was alive.
From Nic's email update:
On Sep 5, 2011, at 8:02 AM, Nic wrote:Well, that was the first day. Monday, Mark seemed to be doing okay. He was hooked up to monitors, an IV, and who knows what else. We met with many doctors and the hope was that the seizures were under control and that Mark's body would absorb the blood and heal. We were thinking that we would be out of the PICU by the next day.
Ok just a mass email to get everyone up to speed.
Yesterday lil Mark went into a seizure about
3:30pm. By 3:50 we were at Alta View by 5:00 life
flight was taking him to Primary Children's Hospital.
Luckily Papa and Mama J were able to meet us at Alta
View and take Sam.
A CT scan showed he has blood on his brain which is
causing the seizures. Sounds bad but it actually good
that they know what is causing them. They have been
able to control the seizures with medication.
The body has the ability to absorb the blood with time.
So that is what we are hoping for. His chances of full
recovery are best without any procedures but they have
a list of things they can do if needed. They are watching
him closely.
Grandpa and grandma M met us at primary and made a run to
the house for necessities. We are hanging in there, Joey
and I spent last night with Mark, jolene's sister Amanda is
staying with Sam and Gus.
One day at a time. Keep us in your prayers.
Love,
Nic and Jolene
Email is probably best. We don't have a signal in most of
the hospital.
However, Mark had a really bad night Monday night. Nic was with him and said that it was basically a seizure fest, one quick-fire seizure after another. He was originally on a less aggressive seizure med, but they had to put him on a more aggressive medication called phenobarbital. The phenobarb got his seizures under control again but, unfortunately, just the one dose knocked the poor baby out. Basically, Mark slept for the next three days. We did learn many new words from the doctors and nurses for being heavily drugged--everything from 'snowed' to 'ploughed' to 'snockered'. It was good for Mark to be able to rest, but it was really hard on me. The last image I had of my baby being awake was when he was having a seizure and I desperately needed him to look at him with those beautiful, blue eyes of his, in order to get that terrible image out of my mind.On Sep 5, 2011, at 9:25 PM, Nic wrote:
Ok thought we would take a second and give an update.
We are still in the PICU at Primary. Lil Mark has made some progress.
But we still have a ways to go.
He is off the hi flow oxygen and most of the meds. Currently just the meds
that control the seizures.
We are hoping to get out of the PICU and into a regular room in the next
day or two.
Big thanks for all the prayer on his behalf.
Mark was hooked up to an EEG monitor, along with all of his other monitors, so we weren't able to hold him. We couldn't really even touch him very much because they didn't want him to be overstimulated or exposed to too many germs.
On Tuesday, they did a MRI of his brain and things looked really good. His brain appeared to be a healthy, newborn brain. I like to joke that when Mark is a teenager and wanting to do something stupid, I'm going to tell him, "I've seen your brain, so I know you have one! Now use it!" Unfortunately, with the MRI, my already sleepy baby had to be sedated so that meant a breathing tube along with his feeding tube. And even though I knew that the breathing tube was just in case of problems during the MRI, it was so hard to watch them put that tube down his throat.
We had to warn visitors that came about Mark's appearance. He looked a lot worse than he was. He had his head wrapped in order to keep the EEG wires stuck to his head and then he had a lot of 'hardware' (as Nic put it). And even though we were used to it, it didn't make it any easier! We wanted to put a skull & crossbones sticker to put on his head bandages to make Mark look tough, but, thus, the gift shop didn't carry such things, so we had to settle for an American flag.
One sweet memory--some time during this week, my brother came to visit us. Now, my brother doesn't deal well with this kind of stuff. He never came to the hospital when Sam or Mark was born and wouldn't even hold Sam for the first few months because it just freaked him out. Jason was also preparing for his wedding that week. Imagine how surprised I was when we ran into him out in the hall. He came in and saw Mark and did pretty good with it. I don't think he'll ever understand how much that visit from him meant to me because I know that it wasn't an easy thing for him to do.
On Sep 6, 2011, at 8:03 AM, Nic wrote:
Well it's Tuesday morning. We have had a pretty rough night. The seizures came
back and we had to increase and change the meds.They have him hooked up to a EKG to more closely monitor the seizures and brain activity. It gives us some comfort to stop guessing at the seizures. Sam is with papa and mama j and doing well. He likes country life.The outpouring of love and concern has been amazing. We are so grateful for family and friends. Emails, facebook posts, phone calls, most especially
the prayers. It has definitely given us strength to keep going. You all are the best.As mentioned before no cell phones the PICU so emails are best.
Thanks again for all your love and support,
Nic and Jolene
On Sep 6, 2011, at 11:18 PM, Nic wrote:
Ok Tuesday night update. After a rough last night, today has been a pretty big upswing. They have been able to control the seizures and continue to fine turn the meds. For the most part of the day he has been resting comfortably. He did have an MRI done today which had some pretty positive results.
Despite the blood in the ventricles the MRI showed his brain is healthy without any abnormalities. It also showed that the trauma that caused the bleeding was consistent with labor and shouldn't be a factor going forward. Because of the medications and the MRI he now has a feeding tube and breathing tube in addition to the other wires and tubes. So our next hope is to get this stuff off and back to eating and breathing on his own. I know that sounds bad but most of the extra equipment has been either mandatory
to sedate him for the MRI or as a precaution to increased drugs to control the seizures. He is currently breathing without assistance from the machines, which is awesome, but the tube is there just in case. Sam has been hanging out with papa and mama j and having a great time.
They brought him up again tonight so we could spend time with him. Grandpa and grandma M also came up tonight so it was a nice break to have sam entertain all of us over dinner. Thanks again for all the prayers and kind words. It is funny how they seem to show up at the hard times and help pull us through.
Love,
Nic and Jolene
Wednesday was just a rollercoaster of ups and downs. He would be looking really good, then have some hard times, then be doing better. He had the breathing tube still because he wasn't breathing on his own 10% of the time. He was doing pretty good, but wasn't quite conscious enough to function on his own.
On Sep 7, 2011, at 3:43 PM, Nic wrote:
Ok my Wednesday morning update didn't happen. Sorry.
But on the positive side, we are 24+ hours seizure free. (I am a little nervous about saying anything for fear of jinxing things, but hey why not celebrate the progress). They just removed the EEG sensor leads so he doesn't have the dreadlocks anymore.
Yeah part two!!
Jolene is currently working on getting EEG goop out of his hair. Everyone is getting a kick out of his hair! With the sensor leads wrapped in gauze no one could tell how much hair he had let alone the how blond it is.
I have had a lot of questions about what it is like up here so I thought I would write a min about that.
Primary children's is amazing! There is only 2 hours a day that we can't be by the bedside. 7-8am and 7-8pm during shift changes. This allows for the leaving staff to bring the oncoming staff up to speed. It also works out for good times to get food for me and Joey.
That is when we usually go outside and walk around too so that is when we get our voicemails and can make phone calls on our cell phones.
At night they have a chair that makes into a bed here at Mark's bedside that I have been sleeping on and they also have "parent sleeping rooms" that have a single bed that Joey has been sleeping in. We feel pretty lucky that we have been able to get the sleeping rooms for Joey every night so far. They are assigned by need and availability.
Our next big milestone will be when he is conscious enough to maintain a regular breathing pattern so they can remove his breathing tube.
Well thanks again for the kind words and prayers. We are definitely making progress.
I am reminded of a favorite quote, "Faith in God, includes faith in His timing."
- Neal A. Maxwell
Love, Nic and Jolene
Sam was staying with Nic's parents and having a good time 'out in the country'. He was having a blast feeding the horses, the cows, the dogs, and the cats every day. Around 7 p.m. each night, when they kicked us out of the PICU, Papa J and Carol Lee would bring Sam to the hospital, and we would get to hang out with him for an hour. He always brought such comfort and smiles with him. I felt so torn though. It was hard to have to say good-bye to Sam each night and not be with him, but it was also really hard any time we were away from Mark. I was suddenly learning the pain that comes from not being able to be in two places at once. Thursday through Sunday, Sam went and stayed in G-ville so that he could be a part of the wedding festivities. He had a good time with my family, and then, because they all had to work, went back to Nic's parent's house to stay.
Thursday was a big day for us though, because that was the day when Mark finally woke up. It was actually a wonderful/difficult moment for me. I had promised Sam that I would come home and go to story time at the library with him. It was the first story time since spring, and I wanted to give Sam some mommy-time and let him know that he was loved too. Well, right before I was to leave the hospital, Mark opened those beautiful, blue eyes of his and started responding to people talking to him. I wanted to stay and enjoy this wonderful, miraculous moment, but I had also promised my other boy that I would be with him and a promise is a promise. It was yet another moment of wanting to be in two places at once. I went to story time and was glad to get some time with Sam. That kid was such a trooper through everything! It was so weird, though, being out in the world outside of the hospital. I was almost unsure of how to act!
Mark was also finally able to get his breathing tube out. While we were in Primary's, we learned to really celebrate the little victories like Mark breathing on his own. Every time a monitor or tube was removed, it was a big celebration for us!
From Nic's email (this email was actually just before Mark woke up) update:
On Sep 8, 2011, at 9:14 AM, Nic wrote:
Thursday morning.2 days no seizures. Wahoo!
On the other side we haven't found the magic point of balance where he isn't having seizures and is at a functioning level of conscienceness. So he is still has the breathing tube and he is breathing on his own probably 90-95% of the time, but the machine is there for the other 5-10% of the time.
The Doctors feel like when they find the magic balance point in meds we will be able to take the breathing tube out.
Since last night he has woke up a couple of times on his own, once to say hi to his Mom and the others to flirt with the nurses.
We are currently waiting for some blood work to come back so we can know what the medication levels are at. This will give us a better understanding to find the magic point. :-)
Have a great day. ;-)
Love,
Nic and Jolene
On Sep 8, 2011, at 5:57 PM, Nic wrote:
Thursday afternoon.
Yes, I am early but lil Mark has been awake this afternoon and they just took the
breathing tube out!!!
It is has been sooo good to see his eyes and now his mouth!!! Its funny I know, to be so excited for something so basic, but we have been waiting for about 48 hours to get him awake and breathing tube free. :-)
He still has some swelling in his throat from the tube that he still need to overcome, but he is looking good.
Thanks for all the support and love. We're getting there, little by little. :)
Love,
Nic and Jolene
Friday was a wonderful day in so many ways. My little brother married his sweetheart Felicia that day. It was hard at first to decide what to do. Jason and my family told me that it would be completely understandable if we didn't come to the wedding or anything. But this was my baby brother and I was so happy for him! Mark was doing really well, so we decided to go to the wedding ceremony just down the street at the Salt Lake Temple. I am so glad that we went! It was a beautiful ceremony performed by a friend of the family who was the same person that set me apart to be a missionary. He was also bishop when I was a young woman and put up with a lot of my crazy antics. It was such a special experience to be in the temple with all of my family for the first time and to be reminded that we are an eternal family. It was also a great reminder of all of the promised blessings in the temple. Being there and feeling the spirit brought me so much comfort with everything that was going on with Mark.
Afterwards, we did the traditional pictures outside the temple. I took lots of pictures of Sam and felt a little sad that Mark wasn't there to get photographed/smothered by me too. We dealt with a couple of Bridezillas, but got through it okay. We decided to also go to the wedding luncheon afterwards. It was hard being away from Mark but it was also so good to be there with so many family and friends. Nic and I really tried hard to keep the focus on Jason and Felicia, and not Mark, because this was their big day. But it was good to see everyone's concern and support for Mark.
When we got back to the hospital, the nurse that let us into the PICU, grabbed us right away and told us some good news. While we were out, Mark had been moved out of the PICU to a regular room on the Infant Medical Surgical Unit (IMSU). We were told the room number and hurried off to find our baby. I'm glad the nurse caught us because I think we would have freaked out to find him gone!
Being in the IMSU was good and bad. It was funny because we had become so used to the routines of the PICU and we were used to always having a nurse in the room with Mark. In the IMSU, there's always a nurse assigned to you and available at the drop of a hat, but she doesn't stay in the room the whole time. We were also a little sad to say good-bye to the good doctors and nurses that we had become friends with in the PICU. But we were ELATED to be graduated to a regular room because that meant Mark was on the road to recovery and doing well.
On Sep 9, 2011, at 2:37 PM, Nic wrote:
Hi everyone!!!
Big news! We are officially out of the ICU!!!
The doctors are feeling comfortable with the progress in meds and Marks response to them. So we are in the regular hospital now.
We still need to figure out swallowing and the other basics. But hey we are really excited!!!
Thanks everyone!
Love,
Nic and Jolene
The first day in the IMSU, Mark ended up with a fever, so they were worried about infection. He had to undergo so many tests. He was one tough cookie though. He got through all of them like a champ, even a spinal tap. All of the test results we were getting back were inconclusive. So he was put on three different antibiotics until they could eliminate different infections. Finally, they got him down to just one antibiotic. They were never sure if he had an infection, but, as they say, better safe than sorry.
On September 11, 2011 Nic wrote:
Well I just got a reminder I am a little behind on updates.
We thought that getting out of the ICU meant getting closer to getting home.
Yesterday was a little rough. Lil Mark woke up with a fever which led to about every kind of test you can imagine, including spinal fluid test. :-( It will take a couple of days to get the results of the tests but in the mean time he is getting a TON of meds to fight what might be.
Today the fever is a little more in control and we have been able to hold him, which is AWESOME.
Also his seizures meds are finally in the range they would prefer and Mark is SO much more active. Which is fun. I have been holding him and watching some football this afternoon. :-) Which also gave Jolene some time to get out of the room and to take a nap.
It's weird to think we have been here for a week. Being in the regular hospital room is good but different. I think we were spoiled in the PICU, but we can rough it if it means getting Mark healthy. :-)
Our next steps are getting a pic line, dedicated iv, for the antibiotics. A swallow test to make sure he can swallow milk without things going to his lungs. Then hopefully nursing. Luckily, Jolene and I have both been able to still stay here at the hospital, but the sleeping rooms aren't available like before. So we just take turns watching mark and sleeping on the available chair/bed thing. :-) Never been so happy to get so little sleep.
Hope this finds you well and thanks for all your support.
Love,
Nic and Jolene
Our time in the IMSU is a blur in my mind. The days and nights just kind of meld into one.We settled into a routine of meetings with doctors, eating in the cafeteria downstairs, and waiting. People would ask when Mark might be getting out of the hospital, but we never asked. We focused more on little goals like passing a swallow test so that Mark could get his feeding tube out or getting his medication level in a good range. The first time we were able to take Mark outside was so wonderful, and nerve-wracking! But it was the little moments that we focused on. I think it was a faith-building experience for me because I knew that I could leave the big stuff in God's hands and just worry about the little things.
On Monday, Nic had to go back to work which was hard for him. The first day, he only made it a couple of hours and then ended up back at the hospital. The next day, he made it half a day. It was hard to
think that the world was still turning outside of our hospital room! I stayed during the day and at night with Mark and got quite used to sleeping on the chair in Mark's room.
Little by little, tubes and monitors were removed.
Our first trip outside. Poor Mark, he was so little when all of
this happened that he hadn't really had much experience
with the world except for hospitals!
Let me mention here how wonderful the staff at Primary Children's Hospital is. All of our nurses were absolutely amazing. I truly think they are angels on the earth. They took such good care of our baby and of us. We made many special friendships with them. And our doctors were amazing also. We had a neurology team, a neurosurgery team, a pediatric team, and an hematology team working with us. All of the doctors, interns, and residents were not only exceptional at what they do, but also compassionate and patient with us. Two resident doctors, Dr. Dean and Dr. Kody became close friends with us. Dr. Dean was with one of the neuro-teams and was always so good to come check on us and really explain things to us. Dr. Kody was on the pediatric team and would check on Mark regularly and visit with us. He even brought us some Ben & Jerry's ice cream one night! I ran into Dr. Kody a month later at Primary's when we were there for a doctor's appointment, and Dr. Kody still remembered Mark and had been keeping up with his case to make sure he was doing well. The entire staff, from cleaning staff to nurses to social workers to doctors, became like family to us.
Tuesday update-
Well, as much as I am nervous about jinxing ourselves, I am really excited about Marks progress.
So Monday he was able to go from 4 antibiotics to one and his ultrasound came back great. No new worries. :-)
Just now he came back from getting his PICC line and the placement went very well. Now we can skip the IVs. Yeah! I am not sure if you are aware how hard it is to get an IV in someone who is under 8 pounds.
Next step: swallowing test. If he can pass that we can get back to nursing. It probably won't happen today, with the sedation required to get the picc line he isn't likely to be awake enough.
Thanks again for everything. Jolene and I have decided we need a better word or way to say thank you. It just doesn't feel adequate to describe the gratitude we feel for the love we have felt as we have gone through this.
With all our love and appreciation,
Nic and Jolene
Ok Wednesday update a little Late. :)
Soooo Big News.
Mark passed his "swallow test" with flying colors yesterday afternoon. Yeah!!!
Then came the bonus. Since there wasn't any complications of milk going into his lungs, he was able to eat from a bottle! They gave him 20 min to finish a bottle and the lil man polished it off in 4 min! I think he has remember the joy of eating!
We also had a lot of learning yesterday, we learned how to take care of the PICC line,
possible problems with it, and how to give him his medicine through it. Pretty intimidating at first, but we felt a lot more comfortable after we got a chance to have some hands on training with nurses watching over our shoulders. :)
Mom and Dad brought Sam up a little earlier last night and he got a chance to work with a Child Life Specialist. The Child Life Specialist is a person who helps siblings learn how to deal with family members being in the hospital and helps prepare them for spending more time around the medical equipment. She brought a "buddy" which was basically a doll that had the same extra lines as Mark has right now, picc, eating tube, etc. That way Sam could check out all of the hardware and not hurt his little brother. We actually get to take the "buddy" home so when we are working on Mark, Sam can help by working on his buddy. :)
The last couple of nights in the IMSU, Nic's parents didn't bring Sam to the hospital
any more because it was just getting so hard on all of us. Being away from us and from
home was starting to take its toll on Sam, and he would start having tantrums when he
had to leave the hospital. And having to say good-bye to him every night was taking
its toll on me. It was so good to see him but so hard to say good-bye. Thursday night, Nic went and spent the night at his parent's house so that he could be with Sam. The next night I went and spent a few hours with Sam at their house. Luckily, we didn't
have much longer of this.
On Saturday, September 17, Mark got to go home! We were so excited and so nervous. They had started talking about him going home the day before but we didn't want to get our hopes up. But on Saturday, it finally happened. Mark was still on antibiotics so he
came home with a PICC line. It was a little unnerving learning how to administer his
antibiotics, but we got it down. If anyone wants to know a great acronym for remembering how to do it: SASH (Saline-antiobiotic-saline-heparin). I was really glad
that I wouldn't have to do the feeding tube because initially, we thought he would be
coming home with that also.
Words can't describe the emotions and the feelings of being home at last, in our own beds, with BOTH of our wonderful boys with us.
It is also hard to describe the amazing love and support we received from our family
and friends. I truly could feel the power of the countless prayers being offered on
our behalf each day. Emails, calls, texts, Facebook messages...every little bit of
support was so much appreciated and really got us through the hard times. Neighbors
even came while we were at the hospital and cleaned up the house a little, mowed our
lawn, and for two weeks after we got home, people brought us meals, so that we could
really concentrate on our little boys. My heart just felt so full with the love of
those around us. My boys are lucky to be growing up with such a strong support net
under them!
This is Mark--no more wires, no more tubes--ready to go home! It's crazy to think that
we took a two week old baby into the hospital and brought home a one month old baby!
