Friday, December 31, 2010

Home at Last!!!

Home at last!  Most new parents get to bring their babies home just days after they were born, as you know from my last post, however, we did not.

When we were first admitted into Primary Children's Hospital we were told that they were going to wait a week before they did Callum's surgery and after that he would be in the CICU for at least 7-10 days then he would be moved upstairs to the Children's Surgical Unit for another 7 days before he could come home.  So we were not expecting our little guy to come home before the New Year.  Callum, on the other hand, had other plans.  His chest was closed much sooner than the surgeons expected and he continued to do so well that they moved him upstairs, again, much sooner than the doctors and surgeons expected, and then my little angel only had to stay there for two days before they sent him home.

He came home on December 23, 2010 just 8 days after open heart surgery.  He is the best Christmas gift I have ever received, and it was great to spend our first Christmas as a family at home instead of in the Hospital.

 I got to the Hospital at 7:30am on December 23, 2010 so that I could be there when the doctor's made their rounds; that is when they told me for sure that he could come home that day.
 He had to come home with both the feeding tube and Oxygen, but it was worth it to have him home for Christmas.
 This is the first time he sat in his car seat.  They had to check is Oxygen saturation while sitting in it because some babies do not tolerate the change of position well.  Needless to say, Callum is a superstar and he did great!
 This is his cute little going home outfit!  I was so happy it fit him, I was worried that the newborn sizes would be to small for my big little guy.

 This time he was NOT happy to be put in his seat, but he got over it really quickly and slept all the way home and then ALL day.  He did not sleep well that night.  However, I have become spoiled with the feeding tube because my 3 week old baby sleeps through the night because he doesn't need to eat.

 Soooo happy I finally get to take my baby home!
 HOME AT LAST!!!
 He is so sweet when he sleeps.
 Our first Christmas!  Brigham let me put up my tiny tree this year, for the first time!  I guess having a child put him a little more into the Christmas spirit :)

 He has the best facial expressions!

 Brigham got a sweet basketball signed by this years Utah Jazz... he is spoiled.

 First attempt at our first Christmas family photo...
 ... A little better...
 ... And a little better (Brigham is not holding that over Callum, it is actually on the back of the couch but the angle is weird)
 So cute!
 Merry Christmas!
 I love it when he sleeps like this with his hands just hanging down.
 Brigham is so cute with Callum


 This is how he sleeps, it is so funny
 Callum all wrapped up after his first bath at home... he did not like it.
 Look how fuzzy his hair is!  This is what it is like when it is clean

 I had to take a picture of Callum in this outfit, my sweet Nannie gave this to me so I had to put him in it :)
 This is our first outing since he has been home; we went to see his pediatrician on December 29, 2010.
 He is not so sure about the hat, but I think it is adorable!
 Again with the hands... so funny
 Hahahaha!  Hands!  Also, we went to our first follow up visit to the hospital on December 30, 2010 and he was able to come off his Oxygen, Yay!  Now we just have to get rid of the feeding tube and it will be back to normal baby life :)

I love my little guy so much and I know that angels have been sent to us to help us get through the tough times.  I am so grateful for all the wonderful people in my life that have been so supportive of our little family.  Happy New Year to everyone and may we all be an angel to those in need around us.

Tuesday, December 21, 2010

Expect The Unexpected

We often see other people suffering, or going through tough situations, and we always feel for them and wish them well, and then we are glad it is not us.  How often, however, do we consider that it could some day be us who is suffering and going through tough times?  I never thought that it would be me.  I have never broken a bone (knock on wood), or gone through any overwhelming emotional trials, or pain-- Well my house did burn several years ago, so I guess that counts... but this is different-- So when I found out I was pregnant (this was not planned, surprise!), I was terrified and excited that I was going to be a mother; I was terrified because I did not know if I was ready to be a parent, and I was excited because I have always wanted to have kids and be a mother.  As time went on and everything was going well I became more excited than terrified.  I was going to have a baby!  I had a perfect pregnancy, great ultrasound results and no problems.  I was expecting to have a perfect healthy little boy... Expect the unexpected.

I was due on Thursday December 2, 2010 which came, then went, with no signs that the little guy was ready to show his face.  I had had a doctor's appointment that Tuesday November 30 and he told me that if I did not deliver by the next week that we would start to consider induction.  That is really not what I wanted, so I kept hoping and praying that he would decide to come on his own.  Throughout that weekend, I felt like I had cramps off and on like you do when you are on your period, so I thought maybe he was thinking about it.  Then on Sunday December 5, 2010 Brigham and I went to my parent's house for dinner around 2:30pm and while we were there I began to feel more regular cramps.  I wouldn't call them contractions, I just felt kind of crapy, again like you do when you are on your period.  We went home around 5:30pm and I just laid on the couch with Brigham while he watched TV and the cramps started to get worse; I knew he was coming, but selfish me, I wanted to sleep so I would have the energy for labor.  I wanted to go Natural.  So I went to bed around 9:00pm, still feeling crapy but well enough that I could still sleep.  When Brigham came in around 11:00pm, he woke me up and my cramps had turned into contractions... needless to say I did not sleep the rest of the night.

For 7 hours I wandered from the bathroom, to the the bed to try to sleep, and to the computer to play on Facebook while I breathed through my contractions.  They were 2-5 minutes apart and they stayed that way through my entire labor.  At 5:00am on Monday December 6, 2010 Brigham woke up to me having a contraction and that is when the day began.  We timed the contractions and tried to decide when we should go to the hospital.  I knew it wasn't time, so I got up and took a shower and got ready for the day.  Brigham asked if I was going to go to work... Umm, no.  So he asked if he should go to work... Again, no.  So I called my mom to see if we could bring the dog to her house; she was so excited!  He was finally coming!  We stayed there and chatted with my mom for a while, then Brigham called his Aunt Wendy, who used to be a labor and delivery nurse, to see what she thought and to get a better idea of when we should go to the Hospital.  Based on what I told her, she said we could go so they could check me if I wasn't sure, but she said I was still in Early Labor so I didn't need to go in yet.  Throughout that morning and early afternoon we ran errands and made some calls, all while my contractions were getting worse.

When everything we needed to do had been completed, and Brigham had called the Hospital to "make a reservation" and find out when they said we should come in, we went home to hang out while we waited for the right time.  It was about 3:30pm when I decided I wanted to go to the Hospital; I was in a lot of pain, but I was still doing really well breathing through each contraction, but I needed to know where I was and how I was progressing.  So we went to St. Mark's Hospital to check in for our "reservation"-- Brigham thinks he is funny-- and when they checked me I was dilated to 4.5cm!  (If I had wanted an epidural, I could have had one right then).  They told us that getting to 5cm was the hardest and longest part and that labor usually progresses relatively quickly after that.  I was so relieved!  We had waited until a good time and my labor was progressing as it should, I thought for sure he would be here that day... Expect the unexpected.

Brigham thinks he is funny and he took a picture of me during a contraction... while making me laugh.

About an hour after we got to the hospital, around 4:30pm, they checked me again and I had dilated to 5.5cm, right on schedule!  Our nurse told us that about 1cm per hour is good progress and that is how it should go.  I was feeling really good and the contractions were painful, but I was getting through them without any trouble.  I got in the shower for a while and sat on the birthing ball and continued to feel as though I was progressing; my contractions were not getting any closer together, but did continue to get stronger.  So about an hour after they had checked me for the second time, around 5:30pm, I was only at 6cm.  I was a little disappointed to hear that, but I figured I was still dilating, so there was nothing to worry about.  I continued to wander around the room changing positions and getting through the contractions, then a few hours later, around 8:30pm, they checked me again... I was at 7cm.  Again, I was still not worried because I was still progressing even if it was slower than it should be.  Throughout all of this the nurses had been speaking with my doctor to let him know how I was doing, and he told them at this point that they would need to break my water if it didn't break on its own because I was not progressing quickly enough, but he said we could wait since it would make my contractions worse and he wanted to spare me that if he could.  Then around 10:00pm they checked me again and I was still at 7cm.  Now I was really discouraged, and the nurse told me that they could break my water and see if that helps to speed my progress or they would have to start me on Pitocin-- they use this drug to induce labor and it makes your contractions stronger-- so I said I would rather have the doctor break my water then have Pitocin if I could.  So the doctor on call came and broke my water.

After my water was broken I don't think my contractions got any worse; they sucked, but I was still doing really great getting through them without any trouble.  About 11:00pm they came and checked me again and I was at 8cm, so I was still progressing... at 12:00am they checked me again and I was still at 8cm.  Now my doctor said they had to start me on Pitocin because they needed to get my labor going to get that baby out.  The Pitocin broke me.  I was doing so well with my own contractions, but the Pitocin made it 1000 times worse, and I had been in labor and awake for over 24 hours at this point and I didn't know if I could keep going.  Then they checked me again around 1:00am... I had gone back down to 7cm!  My doctor and nurses said that sometimes when you are in that much pain you start to push and you don't realize it, and when you push before you are fully dilated (10cm) your cervix will swell, which is the exact OPPOSITE of what you want to happen.  So my doctor and nurse gave me two choices... they said I could try an epidural and see if that helps my body to relax and then open, or they would have to do a Cesarean Section and if they did a C-Section they would have to give me an epidural or a spinal anyway.  So I opted for the epidural; I couldn't take the pain anymore anyway.  I was exhausted.  I wanted to go Natural, and I had had nearly 30 hours of Natural Labor, but I needed an epidural... expect the unexpected.

After they gave me the epidural and the pain was gone (they gave me a really big dose) I fell instantly asleep.  I slept for about 4 hours with the nurses waking me up periodically to help me turn over and to check my progress.  Finally at about 6:30am on Tuesday December 7, 2010 I was fully dilated and was able to start pushing!  I pushed for an hour and then, after more than 36 hours of labor, Callum John Forrest arrived!  He was born at 7:27am, weighed 9lbs 8oz and was 22 inches long.  I heard him cry, and then I started to cry.  It was the biggest relief I have ever felt, and I was so happy that my baby was finally here!  They gave him to me, and I looked at his little face and he scowled at me and I knew he was mine :)




--Also, please note that Brigham was AMAZING through all of this!  He did not leave my side and he sat through 4 chick flicks and helped me get through it all.  I could not have done any of it without him.  He is the best husband ever! I love him so much!--

All that day I was exhausted but excited, and I had lots of visitors and was so happy.  I instantly loved my little guy and I couldn't wait to take him home.





My niece Claire holding Callum

My Father-in-law John holding Callum... He has been to see him everyday

My Sister-in-law Megan holding Callum



That night the nurses brought him into me twice to eat, which he did not do... he would not eat for me at all, which worried me but his sugar levels were always good so they said he was fine.  Then, they did not bring him into me in the morning which I thought was weird but I was still so tired that I didn't think much of it.  When I finished my breakfast, the Pediatrician came in to tell me that the Nurse in the nursery noticed that Callum was breathing funny so they hooked him up to the monitors and his O2 levels were low, and when the Doctor did her check on him she decided to do an x-ray of his lungs which showed a cloud so she thought he had pneumonia, and she told me that they were going to take him to the NICU where he could get one on one care.  She also told me that when she listened to his heart that she heard a murmur, which is pretty normal for newborns, but she wanted to do an Echo cardiogram just to make sure it wasn't something more than normal.  I was devastated that he might have pneumonia, but I was glad that the nurses were so observant and that my baby would be taken care of.  I never thought it could get worse than that.  Expect the unexpected.

The little guy in the NICU at St. Mark's Hospital


Wednesday around lunch time, Brigham and I were sitting in my room visiting with my parents who had come for a visit during their lunch hour when the Neonatal Specialist Doctor came in to deliver her blow.  The Echo did show something that was not normal.  Callum was diagnosed with Truncus Arteriosis which is a congenital heart defect where he has only one artery pumping blood from both his left and right ventricle, with mixing blood, instead of two, one from each ventricle.  (Truncus Arteriosis Animation)

He also had an Interrupted Aortic Arch, which if they had not given him Prosteglandins to keep his PDA open (a small ductus going from the pulmonary artery to the aorta which is found in fetuses and closes withing the first couple of days of birth) he would have died with in 2-3 days of birth.  I am so grateful they caught this when they did.


--Note: 4 in the second picture is the PDA they kept open to keep Callum alive--

The Doctor told us that he needed open heart surgery to fix his defects and that they needed to transfer him up to Primary Children's Hospital.  I could not believe that my big, strong, healthy looking little guy had to have major open heart surgery!  I was in complete shock.  I never thought that anything like this would ever happen to me.  Expect the unexpected.

We went down to the NICU to hold him until Life Flight got there to take him away, and Brigham called his brother who works really close to St. Mark's Hospital and he, Brigham and my dad gave Callum a blessing before he got transferred.  In that blessing Ian, Brigham's brother, said that he would be a source of peace in our lives, and when we finally named him we knew it was the right name... Callum means a dove or peace.  

This is the cool little "Space Ship" they used to transfer him up to Primary Children's Hospital


Side Story: Picking a Name
So Brigham, from the begining of my pregnancy, wanted the name D'Brickashaw if we had a boy.
(If we had a girl we already had a name... Elisabeth Raine)
I adamantly VETOED it!
He insisted.  So I searched lists of names to find one we could agree on.
I never found any that I really loved.
I liked Richard, William, Brieg and Egon.
Brigham liked D'Brickashaw, Callum and Hamish.
Then we get down to the wire in the hospital and my family brings Drake and Asher into the mix.
We had people vote and Asher and Drake were tied to win.
Brigham and I narrowed it down to Drake, Hamish or Callum.
I then got rid of Hamish because I just could not see it.
Then someone told Brigham that Drake is a male duck.
Brigham hates birds.
Then to make it worse, Ian told us that Erin, his daughter, knows a kid at school named Drake and apparently he is not the nicest person, so Ian told Erin to call him "Man Duck" if he does or says anything not nice to her.
So every time Brigham heard Drake, what he really heard was "Man Duck" and he couldn't get over it.
Therefore we ended up with Callum John Forrest and it is perfect!


Brigham rode in the ambulance with Callum up to Primary's and I stayed at St. Mark's.  I was scheduled to be discharged the next day, Thursday December 9, 2010.  I am pretty sure I cried almost the entire night.

To make an already really long story a little shorter, when Callum got up to the hospital, the doctor's and surgeon's decided that because he was so healthy and stable (relatively speaking) they wanted to make sure they had the best picture of what needed to be done.  So along with all the IV's and lines they put in him, they did two more Echo Cardiograms and and MRI, so that they knew EXACTLY what was going on and therefore what needed to be done.  They scheduled his surgery for Wednesday December 15, 2010.

During this time they also drew blood for a genetic test to screen for DiGeorge Syndrome which is commonly associated with the heart defects that Callum had.  Thankfully his screen or FISH came back normal so he does not have DiGeorge Syndrome (this is also good because if it came back positive for DiGeorge, Brigham never would have let me have more kids).

Breakdown of events leading to Callum's surgery and after Callum's surgery:

Wednesday December 8, 2010- Callum was admitted to Primary Children's Hospital
Thursday December 9, 2010- I was discharged from St. Mark's Hospital, and Callum had another Echo Cardiogram, a PICC line was placed in his arm and a feeding tube was placed in his nose that went all the way past his stomach and into his intestines.
Friday December 10, 2010- Dr. Su, a cardiologist came and spoke with us about Callum's condition and what exactly needed to be done to fix it.  He told us that Dr. Kaza would be performing the surgery.  He also said that they were going to do one more Echo Cardiogram and an MRI just to make sure they would have the best picture possible.  Later that day Dr. Kaza came and spoke with us and walked us through the entire procedure and what he would do and in what order:

First He would fix the Interrupted Aortic Arch and remove the PDA tissue.  
To fix the arch he sacrificed the artery going to the left arm ( the one after the break) to make the connection between the two sides; he said he did this in 95% of cases because the body finds another way to get blood to that arm so it didn't matter if he sacrificed it.
Then he would cut a hole in the Right Ventricle and put a patch over the the hole in the Ventricular septum to separate the Left and Right Ventricles.
The Truncal Artery would go to the Left Ventricle and become the Aorta.
There is always a small hole between the Left and Right Atrium in infants, but he was going to make that hole smaller so it would be more able to close completely on its own with time; he wouldn't close it all the way because they have learned from experience to leave a vent so that if there is too much pressure it can escape through that hole instead of blowing out the heart.
Then the last thing he would do is he would place the conduit from the Right Ventricle to connect to the two Pulmonary arteries.  The conduit he would use would be a Homograph from a deceased baby, and as Callum grows he will have to have that conduit replaced at least one more time and possibly two more times.  When they are replaced they will use a Pig or Cow conduit.  After that he will also have to have the valve replaced on that conduit every 5-10 years for the rest of his life.
Dr. Kaza also told us that they would leave his chest open for a few days to allow any swelling to go down; if they close the chest too early the heart wouldn't have room to pump because of swelling.

Dr. Kaza told us that this is the biggest surgery an infant can have, almost the biggest surgery anyone can have, and there are only a handful of surgeons across the country that will do this.  I am so grateful to live so close to Primary Children's Hospital.
Saturday, Sunday and Monday (December 11, 12, and 13, 2010)- These three days they did not do anymore procedures.  They allowed Callum to rest and we were able to hold him anytime we were there.  We also go the news that his FISH came back normal and he did not have DiGeorge Syndrome.  This made Brigham much less stressed and agitated.  I became more stressed and agitated as Callum's surgery drew nearer. 
Tuesday December 14, 2010- Callum is 1 week old and I was a complete mess this day! Callum was intibated, got a breathing tube, and then he had an MRI.  They had to sedate and paralyze him for the MRI so that he would be very still so they could get very good pictures.  We thought that after he was intibated we would not be able to hold him again until well after his surgery, but the nurses let me hold him that night until we left to get some sleep before we had to be back at the crack of dawn the next day to get Callum ready to go to the OR.  They left him intibated after the MRI because he would need to be for the surgery anyway.
Wednesday December 15, 2010- Callum's big day!  Brigham and I arrived at the Hospital at 6:30am and they let me hold Callum again for about an hour until they had to start getting him ready for the OR.  Dr. Kaza and the Anesthesiologist came in to get our consent for the procedure and then around 8:00am we followed them down to the OR and they showed us where to wait.  Around 9:30am we got word that they had started.  10:30am they were getting ready to put Callum on the Heart and Lung machine (bypass) and once he was hooked up there, they would begin fixing Callum's heart.  We then got updates on their progress every hour and around 2:00pm they informed us that the procedure was complete and that Dr. Kaza would be in to speak with us in 40 minutes.  When he came, he went through everything he did and told us that Callum did very well and that he was very pleased with how everything went.  I was so relieved!  It was over and now he just had to recover.  It was about another hour and a half before we were told we could go to Callum's room and see him.  It was really hard to see him lying on his little bed, still sedated, with the patch on his chest but he looked much better than I had anticipated.  After we stayed with him for a little while we went home to get some much needed rest.  I went to sleep at 8:30pm and didn't wake up until 8:00am the next morning.
Thursday December 16, 2010- When the surgeons came to check on him that morning they said he was doing really well and one of the surgeons wanted to close his chest that morning!  Dr. Kaza, however wanted to wait one more day just be safe.  This is much sooner than they usually close the chest; Callum is a rockstar!
Friday December 17, 2010- Callum's chest was closed at 8:00am.  We spoke with Dr. Kaza after he was finished (he asked us if he had done everything right because we could see him through a crack in the door and Brigham, who thinks he is funny, said that according to what he has seen on Utube he did everything right) and he told us that Callum was ahead of schedule for recovery; he said some kids just have the gift and Callum was/is doing great.
Saturday Decmeber 18, 2010- The rest of Friday and then Saturday they did not do much as they wanted to let Callum recover from having his chest closed.  So we just got to hang out with him and I read to him a lot.
Sunday December 19, 2010- Callum was extibated, had his breathing tube removed.  He is so cute!  and without the breathing tube you can see his sweet chunky cheeks.  They also removed two of his chest tubes, began weening him off his pain medication, the medication that helps his heart to pump and his oxygen, and they also began to up his feeding dose and once that is up to the full amount they can take more of his lines out and when more lines are out I will be able to hold him again!  They told me that I should be able to hold him by Tuesday or Wednesday of this week!  I am so happy.  They also said that if he continues to do well he could be moved up to the general recovery floor before Christmas, which is just once step closer to him coming home.  I was also there when Dr. Kaza came in to check Callum's incision and he told me that he wanted to let all the kids grow up to Callum's size before they did this surgery because he has done so well.
Monday December 20- They took out Callum's chest tubes and they said if he continues to do well that they would be able to take out his RA line (the one going to his heart) and the line in his wrist.  Once those two lines are out we will be able to hold him again!
Tuesday December 21- My little guy is 2 weeks old today! Today they removed his RA line and the line in his wrist and he was doing so well that when the doctors did their rounds they decided he was well enough to move up to the third floor, out of intensive care!  I got to hold him today, and he is so cute... I can't wait to take him home :)
The nurse he had today said it looks like they are trying to get him home before Christmas, but he will most likely have to go home with a feeding tube.  I am hoping he won't have to have the feeding tube, but it will be nice to have him home anyway.  Now we are completely up to date!

Here are LOTS of pictures!







My Sister-in-Law Wendy holding Callum

He scowls a lot... He is definitely mine

My Brother-in-law Ian holding Callum

He sleeps with his mouth open.  It is so cute!




I love him!



My two AWESOME boys


So comfy



He freely shares his opinion... yes he is definitely mine.  And Brigham's


He is such a doll!  I love him



I love this!  He is holding his own binky in his mouth




This is after he was intibated and had his MRI... They had to sedate and paralyze him.  Look how long his arms are!

He looks so peaceful, but I hated seeing him like this



He is all drugged up, staring at nothing and scowling.  I am pretty sure he didn't blink for a full minute!


This is right after he got back from surgery.  He has so much stuff hooked up to him

His chest is still open, but you can't see it because the white patch on his chest covers it up



My sweet little guy


Poor little guy... he is still drugged and he swollen


This is after he got his chest closed...

... Just a little bandage



After he had his breathing tube removed

I love his chubby little cheeks!









He is not sure what is going on






My sweet little angel

Now he is out of CICU and he is much closer to coming home!  Then I can see that BEAUTIFUL scowl all the time



I love my boys
These last two weeks have been crazy and full of unexpected events, but I know that we are not given trials that we cannot handle and I am so grateful for all the blessings we have received in this short amount of time.  I will always remember that events in life rarely, if ever, go the way we planned and that we should always expect the unexpected.