Recently I had the opportunity to travel by plane from Washington to Ohio with my son. Here was our experience. Read More »
Posts in category Parenting
I swear the time flies by when you have kids. I can’t believe it’s been 7 months already. Here’s what my little man has accomplished in 7 months. Read More »
As much as I love breastfeeding sometimes it sucks and that’s the honest truth. Read More »
I love my son to death, but I need a break from him and that’s ok. Read More »
As anxious as I was to see my son after surgery little did I know that this was going to be the hardest part. Haven’t read about the beginning of our Day? Click here. Missed the what happened during his surgery? Read it Here.
I left off at meeting with the surgeons after they finished his surgery. We were told it would be another 45 minutes before we saw him. The wait was long, but I was ready.
We received the page and made our to the other side of the hospital. As many times as I had been to Seattle Children’s I never really knew how big and how much like a maze it was. We made it to the ICU and went to the front desk. He was in room 305. This was the moment I was waiting for.
We walked in and there he was, my bean. My heart hurt when I saw him. His face was swollen but it wasn’t that bad. His lips were the worst. The raspy sound he made when he tried to call out made me want to cry.
In the ICU we had to share a nurse with another patient, a little girl. I didn’t know what was going on with her but I knew it wasn’t good. The nurse was ALWAYS in her room. In between going back and forth between the rooms the nurse filled us in on what was going on with him. Then there was a shift change and we got a new nurse. It was all so overwhelming.
They wanted to monitor him to make sure every thing was ok. They gave him one dose of morphine and changed to oxi (oral) and Tylenol (oral) after that. In about 6 hours they wanted to try to feed him. Whether he breastfeed or took a bottle was my choice. I decided to give him a bottle at first. I wasn’t comfortable holding him with all the IVs in.
I disliked the nurse he got after the shift change. She was very pushy. All the other nurses asked me what I wanted to do in regards to feeding and pain meds. They would ask me what I was comfortable with or if I thought he was in pain. If I was unsure they helped me come to a decision. This nurse was pushy. She didn’t really listen to what I wanted. She just stated what she thought was best and tried to get me to agree.
This was one of the hardest things for me that night. The nurses demeanor and the other child made me feel like my sons needs weren’t good enough. Do I call the nurse away from a little girl who needs her? Is what I need really that important? He’s trying to cry, do I wait and see if he stops? When should I call the nurse? Should I try to help him myself? What if I make him worse?
I wanted to feel like my son was important too. You don’t know how horrible I felt.
I was on my feet until night came. I wanted to stay by his side. I wanted him to know I was there. My feet were killing me, but I didn’t know what else to do. It seemed like anytime I even thought about sitting down he’d make a noise and I couldn’t move.
I was an emotional wreck. On top of the fact that I was hungry and tired. I was supposed to be getting a tray, because I was breastfeeding and it was taking forever to come. It put me in one of my moods. That wasn’t good, because when my mom would try to comfort me I would push her away. I hated it, but I couldn’t help it.
At around 7 pm I was able to breastfeed him. They had taken out a few of the IVs so I was a little more comfortable holding him. He ate as much as he usually did and that was encouraging. They said when he starts eating as much as he normality does they would stop the fluids. At that time he was eating every four hours when he usually eats every two hours. I believe this was because of the fluids. He didn’t start eating more frequently until they stopped it the next day.
That night, the first night was a very long night. I barely got any sleep at all.
The days after
The next morning we were visited by doctors from neurology and plastic surgery. They checked on him and said he was doing good. So they moved us out of the ICU that afternoon.
I was getting more comfortable holding him, but not picking him up. He was only connected to one IV and had a monitor on his foot. On this day his swelling peaked. It was so bad he couldn’t open his eyes. So he would scratch at them. I couldn’t imagine what he was feeling.
I wasn’t sure at first, but it seemed like holding him was helping with the swelling. That encouraged me to hold him more even though I was uncomfortable. It also helped me feel better and sleep more with him in my arms.
He slept pretty much the whole time we were in the hospital after surgery. He would only wake up for a few minutes at a time and to eat. I think this made the time we were there a little easier, especially since he couldn’t see anyway.
Late afternoon on January 9 we were discharged. This was scary for me, because I was still uncomfortable picking him up. My mom was fine with doing everything that I was not. So I was fine with being discharged. I think I was also worried about him being in pain.
That night I held him the whole night. In the morning the swelling had gone down. He could open both eyes now. He was finally staying awake more, though he still slept quite a bit.
It took a few days, but he slowly started getting back to his old self. The only difference was that he was super clingy, but that was ok because he had just had major surgery. For 3 weeks after we were still giving him medicine for the pain. Only when we thought he needed it.
I’m happy and thankful we got his surgery done when we did. Children are so resilient and they bounce back so fast. A few weeks after his surgery you would have never been able to tell he even had surgery.
This is the last part in the My Hardest Day as a New Mom series, but this is not the end of our story. He has to wear a helmet for a year. I’m also hoping to continue to raise awareness for Craniosynostosis. Thank you for joining us on our journey.
Do you have a newborn, one month, or two-month-old? Are you unsure what to do with them while they are awake? Here are 10 ways to entertain your newborn – 2-month-old.
My hardest day as a new mom begins here. If you haven’t read it yet, please do. January 7, 2016 was the day my son had surgery for craniosynostosis. I left off with them talking him back for surgery.
After Bean was taken back for his surgery you would think I’d be a worried mess, but surprisingly I wasn’t. I knew my son was in very capable hands. The doctors at Seattle Children’s preform at least one surgery per week on kids with his condition. In times like these it’s always important to focus on the positive.
While there are always risks of complications, I believe the surgery we choose was the safer route. That is just MY opinion though. It was less invasive, instead of one huge incision there are two smaller ones. There was less of a chance of him needing a blood transfusion. Also instead of breaking up his whole skull and reshaping his head they just take out a smaller piece and reshape his head with a helmet.
After they took him back for surgery we were taken to the ICU desk were we were given a a pager. The pager is how the surgeons contact parents to let them know how the surgery is going. The way it works is after you get a page you call the number on the pager, if you don’t have a phone there are some located in different areas all over the hospital. After you call they connect you with the operating room and someone there give you an update.
Once we received our pager, we went into one of the mommy rooms so that I could pump. I’m not quite sure how many of these room Seattle Children’s has, but I’m glad they have them. There are a bit on the small side but I imagine they don’t expect many people to be in there. It had been several hours since the last time Bean had eaten so I pumped quite a bit. I felt so much better after I pumped.
Once we finished there we headed upstairs to the parent resource center. This is where my mom and I spent most of our time while Bean was in his surgery. She took a test while I edited Youtube videos. Both of us had distractions.
At 10 AM I received a page letting me know to meet someone so that I could give blood for the research of his condition. Bean would also be giving blood, but they would do this during his surgery. If you’ve read my introduction, you would know that my life goal is to help others in any way that I can. When the opportunity came along for me to be able to contribute to research for his condition I excepted right away.
At about 10:45 am I received a page saying that Bean was out of surgery and that the surgeons wanted to talk with us. They gave us an update on how the surgery went. They said everything went great and he may end up needing a blood transfusion. At that time he was being taken to get a CT scan to make sure everything looked right. Then he would be taken to the ICU and that is where we would meet up with him.
I was excited that the surgery was over and that everything had well. If you watch the video above you can see that I’m too excited. A part of me wondered if the Doctors thought I was crazy for being so excited, but I couldn’t help it. That was the longest Bean and I had been apart and I was ready to see my baby.
The hardest part has yet to come. Stay tuned for what happened after we arrived in the ICU.
As a new mom I never imagined having to endure the things I endured that day. I never once thought my son would have to go through what he went through at such a young age. At almost three weeks old my son was diagnosed with a condition that would require him to get surgery before his first birthday. Not only that it would also be surgery on his head. I wrote more about it here.
His surgery was scheduled for January 7, 2016, a Thursday. That Monday we had an appointment with the surgeons, neurosurgery, and anesthesia. It’s was mainly for if I had any last questions and to explain to me what would happen when we got there. They also took some last measurements and a little bit of blood.
On Tuesday I received a call telling me the last time he could have breast milk and clear liquids on the day of the surgery. Also what time his surgery was. His surgery was to be the first one performed by the craniofacial team that day. It was scheduled for 8 am. Meaning the last time he could have breast milk was at 4 am and clear liquids at 6 am. We were to check in by 6:30 am.
In the week prior to his surgery we tried to keep everything as normal as possible. Changing the routine too much can be stressful for baby. We were given a special body soap and ointment for his nose to start using 3 days before his surgery. We were to bathe him every night and put the ointment on twice a day. This was to kill any bacteria on his body, so he wouldn’t get an infection.
The night before we got everything ready. We packed his bag and ours. We were told he could take a comfort item with him into surgery, so we made sure he had his blanket, monkey, and paci. Though we only intended for him to take his blanket. We gathered up snacks and microwaveable food so we could eat while we were there.
I think the 2 most hardest things in the weeks prior to his surgery were keeping my composure and the suspense. In the weeks prior all I wanted to do was cry, but I didn’t and I kept it to myself. My mom was stressed enough as it was and I didn’t want to add to it. I knew she was there for me, but I didn’t want to be a burden on her. I knew she was feeling the same things I was. Also I also knew that if I let my feelings show through they would affect my son. I didn’t want him to be sad. I wanted him to be happy before his surgery. The suspense bothered me because as it got closer to surgery day time seemed to move slower. Once you get that date all you can do is wait and waiting for something so big is hard.
The morning of
The morning of surgery we woke up at 3:30 am. Our plan was to leave by 4 am. The first thing I did was feed him. Even though he had eaten about an hour before I wanted to make sure his belly was as full as possible. I didn’t want him to fuss too much because he wouldn’t be able to eat again. While I did this my mom got dressed and packed up the car. She then brought me his clothes so I could get him dressed.
As always I was the last one out of the house. I made sure we weren’t forgetting anything and that everything was turned off. Before I walked outside I stood in the door, sighed, and then walked out. It was going to be a long day.
Even though we had planned to leave at 4 we didn’t leave until 4:30. The ride was long but faster than we thought. We arrived at 5:30. At 5:45 I woke Bean up and gave him some pedialite. He only drank 3 oz out of 4. That worried me but at least he drank it.
Just before 6:30 we checked in. Then we waited for them to call us back. During this time Bean was awake and happy. Though I hoped he would go back to sleep because they say the anesthesia makes them feel like they hadn’t been sleep at all. I wanted him to be well rested.
After about 30 min of waiting someone came to get us. We were asked a ton of questions and made sure we knew what was going on. Then we washed Bean down with special wipes and put on his gown. Soon after someone came and took him away for surgery. I instantly missed him.
For the next Part in this series click here.
As parents when a child is born all we want is for them to be healthy and born without any problems. That is not always the the case though. Sometimes they are born with problems. Many more serious than others. I think it’s important to note that however a child is born they are all perfect in their own way.
At birth my son’s Doctor noticed that his head was shaped odd. Instead of being round, the sides of his head were flat. At first he thought maybe it was because of the way he was positioned in utero. He assumed it would round out on its own. When we went to an appointment a few weeks later and his head had not changed at all he referred us to the craniofacial department at Seattle Children’s. There we found out my son was born with a condition called Craniosynostosis.
While Craniosynostosis is not a life threatening condition it is serious. It can cause developmental delays, pressure on the brain and eyes, seizures, and more. Craniosynostosis is when one or more of the cranial sutures close too early not giving the brain enough room to grow.
Check out my video below for more information on Craniosynostosis and our journey.
Things I forgot to say in the video:
this hasn’t affect him developmentally yet. he is hitting all his milestones.
his specific condition is the most common and is more common among boys.
Seattle Children’s has been doing the open surgery for over 30 years.
Since making this video he has had his surgery. Everything went well and he is healing great. In the near future I will be posting about it.
Below are a few articles you can read about the condition.
Seattle children’s website has some great videos in the subject if you would like to check it out.
An article from the CDC