Thursday, January 30, 2014

Joseph's Journey Home

This is continued from Joseph's Pregnancy Story and Birth Story. Before he was born, doctors told us that he had Ebstein's Anomaly and would need open heart surgery soon after birth. Before he was born, God told me that his story would be different from Caleb's story ( who had 2 surgeries as a baby).

Joseph Peter Honsalek was born at 10:52 am.

 He spent a precious hour in our arms, a little time in the nursery (where Grandma and Aunt Tabitha were able to sneak in for a visit), and then was moved into the NICU until our cardiologist arrived to discuss his echo with us.

His oxygen levels looked great all day and we knew we were staring at a miracle, but it felt like forever to wait for that echo. Would our baby need surgery???? I journaled what happened at the echo....

 It is near 7:00 pm when the cardiologist arrives to answer the question that is burning into us.

"I have good news for you!" she says as she pulls out a heart diagram and echo pictures. "The situation is different than we had thought. Joseph does not have Ebstein's."

My heart falls like I just jumped off a waterfall and I'm holding my breathe before the moment I land in a pool of grace. 

She goes on to explain that what they see going on in his little heart now is a condition called pulmonary stenosis.

What is that? Is it bad? Is it safe to breathe again yet?

"His pulmonary valve leaflets are a little thick and 'stuck' so bloodflow to his lungs is limited. His right ventricle has been working extra hard to pump blood through the nearly closed valve and so it has become thick and stiff."

Oh no....

"The good news about pulmonary stenosis is that it can usually be fixed with a cardiac catheter. They can slide a catheter up through a vein in his leg and use that to balloon open the valve, then pull the catheter back out. If that corrects the problem, then there will be no need for open heart surgery."

I breathe. I smile. I just dove into grace. A miracle just happened and this time my baby will not need surgery. God, please, let this work. I know it will. God, thank You. 

We ask questions. She explains that they will have to put him on some medication, prostaglandin, to keep open a duct that is open in the womb, but that usually shuts after birth. Keeping the valve open allows blood to enter the lungs until the pulmonary valve is fixed. That little duct is the reason why his oxygen levels have been fine all day. The medication is difficult on his digestive system so he will not be able to nurse or take a bottle until after the heart cath.

We will be transferred to Egleston in a day or two where another team of doctors will review his case and hopefully decide to proceed with a heart catheter.

We spent a few more hours sitting at Joseph's side in the NICU before we prayed and kissed him goodnight and headed back to our hospital room. Spending the first night without him was difficult, but I clung to gratitude and allowed myself to enjoy a quiet night of rest after the labor--only waking up to pump twice for this first night.

The next day was peaceful and uneventful as transportation to Egleston was delayed until the following day. We passed the day away praying over Joseph, reading to him, calling friends, and I began writing his birth story down.

There were some small things done--drawing blood and inserting a PICC line. In the evening, during the shift change when parents are not allowed in the NICU, an NG tube was inserted to give him small amounts of breastmilk. When I walked into the NICU after the shift change and saw the NG tube I broke down for that first good ol' postpartum cry.

When Caleb had his first surgery, he had to have a large NG tube and he absolutely hated it. Seeing it then on my newborn without any warning hurt. The sweet baby didn't seem bothered by it though. The nurses explained to me that this one was a lot smaller than the one they would have used with Caleb and therefore not nearly as bothersome.

We were transferred to Egleston on the third day. Apparently, NICU babies are transported in warm pizza boxes with straps.

 I recognized our ambulance driver from my last ambulance ride with Caleb. We walked briskly to the ambulance. It felt like a workout just walking around the hospital so soon after delivery!! Those guys are used to walking at emergency speed! Joseph slept peacefully in the back of the ambulance the entire trip. I cannot express how grateful I was for a peaceful drive. It felt like a breath of fresh air after the two stressful ambulance rides I had with Caleb.

At Egleston, Joseph was quickly settled in to his new home. The CICU (Cardiac Intensive Care Unit) is one big space split into three "pods". Each pod has multiple beds in it that can be separated by a curtain for privacy, but are left open most of the time. It was humbling to be there with other weary parents and sick children--many who have been through more hardship than I could ever imagine. You can't walk through those pods without praying.

Everything at Egleston was incredibly efficient and everyone was extremely helpful and kind. It didn't take long before we were able to speak with a doctor about plans for the next couple days. They inserted a central line.They would take their own chest x-rays and an EKG. Joseph would continue to receive prosteglandin. He would not be allowed to eat yet. That was difficult news because we knew he was feeling hungry. Thank God newborns sleep through so much.

We were quickly set up with a room at the local Ronald McDonald House. What a relief to have a place to stay near our son! Kissing him and leaving the hospital that night was so difficult. The Ronald McDonald house was incredible though. The rooms were nice. The refrigerator was stocked with all kinds of food and treats made by volunteers. We didn't have to worry about food at all our entire stay!  There was a play room so we had the option of Kai and Caleb staying with us. There was a free shuttle to and from the hospital. Everything was taken care of.

Brandon and I crawled into bed in our "hotel room" and joked about being on a kid-free vacation in an all-inclusive resort, but that night as I continued to wake up to my alarm clock to pump in a quiet room knowing that my baby was at the hospital hungry and without me....there were tears, lots of tears and prayers in that all-inclusive resort. It felt like every breath there was both a "Thank you, God" and a "Help, God" all at once.

After reviewing his EKG, Joseph's team of doctors agreed that he was a great candidate for a cardiac cath. Praise God!! 

We had to wait for a slot to open up for Joseph to have the procedure done. Other babies in more critical condition took precedence. After some back and forth, Joseph went in for the cath procedure in the afternoon. We waited and prayed and prayed. Finally, in the waiting room, Brandon received a phone call from the doctor. Brandon smiled as the doctor told him that "the procedure went even better than we expected and opened the valve up beautifully"!! Thank you, Lord! Now we were just in a waiting game to see how the rest of his heart would adjust after trying for 9 months to compensate for a closed valve. We had to wait and pray for the right ventricle of his heart to relax and stretch open and begin to function in a more normal manner. When he returned from the cath, all the tubes and wires made him look rough. You know I cried at this sight!! Underneath it all though, he really was gaining color and looking good!

Everything felt like it was going to be ok once we took out the mouth tube (what was that one for again??) and Daddy finally got to hold him again.

The next few days we just waited and watched. The 31st was Easter and also my birthday! Nana and Papa came to visit and brought Kai and Caleb and my niece Lily. My heart was so happy to be with my little munchkins again!! We explored the hospital together and went to some of the Easter activities. 

That night my family came over to the Ronald McDonald House too and surprised Brandon and I with a birthday cake. So special to all be together! 

The next day Brandon had to return to work. I missed him, but kept myself busy holding and reading to Joseph. During the times that I could not be in the CICU I grabbed food or walked the halls to pray. I got to meet a couple other parents in the hospital who were fighting battles with their children's health--some who had been in the hospital overnight and some who had been there for months. I got to pray with a couple other mothers.  I had A LOT of people praying for us. I couldn't keep up with all the calls and texts and offers for help our friends were sending our way! This is one prayer a friend, Mairelina, emailed me the day after Joseph was born that really encouraged me. 

"Thank you Jesus for your faithfulness on a good delivery and babyJoseph.  Father, I know that you are in control of this whole situation. You will allow us to go thru the fire many times but You have promised to be with us. But  in Jesus Christ name I ask you to put Your hand on Joseph, what a beautiful name, and what a history that of Joseph, in midst of his trials the Bible always says “but God was with Joseph”, so I know this little one was born to be a preserver, Father if it is your will for this procedure to be performed tomorrow, let it be a successful one, without any more issues. But even now I speak healing in this little heart, Jesus, You make all things perfect, the enemy tried to put this block in the way to discourage this family, but there is nothing that the enemy tries against your love ones that doesn’t contribute to our increase in faith, therefore we always win, and You Jesus always receive the glory.  I cover baby Joseph with the blood of Jesus and declare divine healing and divine health for the rest of his life. Jesus sent Your angels around this little one and bring a miracle that astonish even the doctors.  I release healing into baby Joseph in Jesus name."

Joseph's EKG looked great so they moved us to a stepdown unit!! This meant that Joseph had his own room and I could stay with him now!! 

In the stepdown unit they also removed the NG tube and let me start bottle feeding him. The first feed was a little frustrating for him, but he didn't give up and eventually figured out how to get that milk out! I was only allowed to let him try for 10 minutes at a time because he tired so easily. I remember how hard it was to admit that he tired easily, that his body was really working hard just to pump blood. 

After he handled his bottle feedings like a champ, I was allowed to nurse him again for the first time since birth!! I was grateful he took to it easily. His little milk-drunk self passed out afterwards and smiled away in his sleep.

That evening they moved us back to the CICU for a night to wean him off  the prosteglandin medication. I slept in a "sleep room" there in the hospital and every 2-3 hours the nurse would call me and I would walk from one end of the hospital to the other to nurse Joseph...and then walk back again to sleep for 2 more hours. You have to be out of the sleep rooms in the morning by 9 or 10 so I was tired that day and grateful when we were moved back into the stepdown unit on the 4th so I could nap next to Joseph during the day! After weaning him off the prosteglandin, they had to put him on oxygen.

Kai and Caleb came to visit! I lived for their visits. I am so grateful to my parents and Brandon's parents for loving on them while we were with Joseph and for bringing them to the hospital to visit so often!! 
Kai strung together Joseph's Beads of Courage. The Beads of Courage program gives you a little journal to keep track of what happens everyday in the ICU and they give you a small bead to represent each event (ie Glow in the Dark bead for EKG, aqua bead for tube insertions).  There were children in the CICU pods with strings and strings and strings of beads. 

They also took Joseph off of oxygen and took out his central line.

They told us he was doing so well that he would probably go home early--tomorrow!! It was Saturday so Brandon took Kai and Caleb home with him to have some Daddy time. Joseph and I had a terrible night that night. He woke up all night, was very fussy, and his oxygen levels dropped. I know now that it was because he had a nut sensitivity and I ate peanut butter that day. I did not know then what was wrong and it was so frustrating!!!

In the morning Joseph's team of doctors broke the news to me that we would not go home today after all. They wanted to observe him longer because he had such a bad night. As the doctor was telling me this, Joseph looked up at me and smiled while awake for the first time!! It was like a little sign saying, "It will be ok. Just wait a little longer."

Brandon came back with the boys to play. Nana, Papa, and Lily met us there to hang out and pick up the boys for another sleepover.  It was a beautiful day and we were allowed to take Joseph outside for the first time!!

Joseph had a good night and maintained high oxygen levels so Joseph's team told us we could take him HOME!!!!!!!!!! 
Brandon was at work so Nana braved driving to the hospital with 3 toddlers in tow to pick us up!

Thirteen days in the hospital and one healed heart later, my baby was home!!!!!!!!