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Our little Leilani is 8 mo old now! I can't believe it! It's been a crazy ride so far. From delivery til now we've had our hands full. As I remember it, labor was pretty crappy. 4 days of induced labor with and epidural that didn't really work, only to have a c-section on the 4th day. And as luck would have it my c-section incision split open a few days after being home from the hospital. The weeks following that were not fun to say the least. Frank had to flush and pack the wound twice a day. With nothing to numb the area, there was quite a bit of cursing and crying each time. It felt like someone was taking a knife and stabbing me over and over again in the wound. In between dressing changes I would get random sharp pains shooting through my abdomen. I have to give kudos to Frank for stepping up to the plate like that and doing the dressing changes. If he didn't, i would have had to go back to the hospital. To be honest he did a better job than the doctors did. Even though it hurt like crazy when he did it, it hurt even more when the doctors did it. I think it's cuz he did it for love and they did it cuz it's their job.
The couple of months that followed Mya's homecoming were odd. Most new mom's will tell you that they were elated, on cloud nine, experiencing almost a high from the joy their new baby was bringing them. But if I were to be completely honest, I can't say that. I felt joy that she was with us, yes. But I also felt like I really wasn't her mom, more like her babysitter. I kept waiting to feel that enormous amount of joy, that high that just wouldn't come. Don't get me wrong, I was happy, but not like I expected. I cried a lot, mostly because in my mind I didn't feel like a mom yet, so in turn i felt like a failure. I don't know if it was the hormones, or the fact that she had to stay in the NICU away from us, or the newness of it all that it just hadn't had time to sink in fully yet. Maybe it was a combo of it all, but I was truly upset at the way I felt. But it's so different now. I do get that enormous amount of joy in my heart when I see her and hold her. My heart leaps miles high when she smiles at me. This level of love cannot be known until you have a child of your own. Now I understand what my mom was saying all those years. Now I understand her love more clearly than I ever have before.
A few days after we took her home from the hospital we got a call from the neonatologist. "Your daughter tested positive for DiGeorge syndrome" I don't remember much else from that conversation. I just remember watching my daughter sleep while I cried and Frank held me close and rocked me. I remember saying over and over again "my baby, my little baby". All I could think of was of the many trials she was going to face. We didn't know anything about the syndrome other than it was probably what caused the heart defect and it severely weakens her immune system.
After taking some time to let it sink in, it was time to buckle down and step up to the plate. We needed to be able to give Mya the best chances in life possible and in order to do that we had to arm ourselves with information. We went to her first appointment with the geneticist with a list of questions. We did research non stop on the web. One of my friends always tries to give us credit for being brave and strong, but that's not how I see it. We're her parents, and that's just what parents do. You just do without a second thought. You not only survive hardships but you attack them head on if it means giving your kids the best life possible for them. I see moms so differently now. We are truly fierce warriors so don't mess with our family!
6 months later, March 5 to be exact, it was time for Mya to have her heart surgery. That morning we woke up with heaviness in our hearts. Mya was the same as always. She was tired because we had to wake her up two hours earlier than normal but she was still smiling. It pierced my heart. When we handed her to the doctor to take her to the OR, I didn't know if I would see her alive again. I think that what made it really hard was the fact that she was just like any other baby showing no signs of being sick. It felt like we were giving a perfectly healthy baby over to the doctor for heart surgery not knowing if she would survive or not. Why would you do something like that unless your baby was severely ill and needed it as a lifesaving measure? Although we couldn't see it on the outside, she truly was sick and going into heart failure. Frank and I held each other and cried. We felt so empty and yet so heavy. 5 1/2 nail biting hours went by with periodic updates. "She's under anesthesia now." "We just made the first incision." "We've successfully stopped her heart. She's on the bypass machine now." " The doctor is closing her up now." Friends and family were in the waiting room with us. We tried to keep it light and optimistic but I don't really remember much of it. Finally the surgeon came out. The surgery was a success and we could see her in the PICU after they were done getting her set up in there.
She was puffy with her eyes shut. She was hooked to the ventilator with numerous IV's and chest tubes. It was hard to see. But at the same time I was so glad to see her again. My emotions were so confusing. I can imagine that it was similar for my husband but I don't know for sure. The days that followed long. There were times when I lived minute to minute. But each day she showed improvement. The hardest thing was to know that she didn't know what happened to her or why she was in pain with all these things hooked up to her. My heart felt like it was physically broken for her. In my mind, I felt that she looked to me as her protector, someone she trusted and I broke that trust. She would look at me with eyes as if to say, "Why don't you fix this? Make this stop" But I couldn't so I lost her trust
While I was in the hospital I noticed the other parents. We all had a battle we were fighting and we wore the wear and tear on our faces. It seemed we were all walking around like zombies, some more than others. Frank and I didn't really talk to the other parents there but it felt like we had an understood bond because nobody can begin to comprehend your pain unless they've gone through something similar. Being in the PICU helped me realize how truly blessed we were. Some parents didn't know if their baby was going to make it. The baby across from Mya had to be re-intubated three times while we were there. The baby next to Mya had been in the PICU 5 out of the 8 months of her life. Her mother is one of the strongest people I've ever met. With Mya, we knew she was going to make it. The journey that she had to go through was hard for us but at least we knew she would pull through. Not everyone in that PICU got that luxury.
A week later we were home. She wouldn't let me put her down for the first couple of days but slowly that went away and as she healed and the pain decreased, her personality slowly came back. It took a little over a month to see the old Mya again but she came back. Her recovery has been amazing. She can now sit on her own and is looking like she might start crawling in a little bit, that is if she doesn't walk first and skip crawling all together. She's such a happy and easy going baby. She has slept with Frank and I in our bed up until about a month ago. We thought because she was so used to sleeping with us, it would be hard to get her to sleep in her crib but she did it with no complaints. The first night in her bed she slept 9 hours straight and woke up in a good mood. She's had a few nights that were kind of rough but I can probably count those on one hand. And she doesn't always wake up in a good mood. But overall we've been lucky. She's a very pleasant and happy little girl. She loves to play and cuddle with you but has no problem being alone and entertaining herself.
I truly feel so blessed in my life. My husband loves and respects me and loves and adores our baby. He's right there in the trenches with me changing diapers and all! Our parents have been there for us from the beginning, going out of their way to make sure we are ok. We couldn't ask for better friends. They've stood by our side and cried with us, prayed with us, and laughed with us. So ya, we've had a bumpy road, but the blessing that came out of it are totally worth it! I feel that our relationships with those that have gone on this journey with us have grown closer and stronger with each challenge. Thanks for reading!
The couple of months that followed Mya's homecoming were odd. Most new mom's will tell you that they were elated, on cloud nine, experiencing almost a high from the joy their new baby was bringing them. But if I were to be completely honest, I can't say that. I felt joy that she was with us, yes. But I also felt like I really wasn't her mom, more like her babysitter. I kept waiting to feel that enormous amount of joy, that high that just wouldn't come. Don't get me wrong, I was happy, but not like I expected. I cried a lot, mostly because in my mind I didn't feel like a mom yet, so in turn i felt like a failure. I don't know if it was the hormones, or the fact that she had to stay in the NICU away from us, or the newness of it all that it just hadn't had time to sink in fully yet. Maybe it was a combo of it all, but I was truly upset at the way I felt. But it's so different now. I do get that enormous amount of joy in my heart when I see her and hold her. My heart leaps miles high when she smiles at me. This level of love cannot be known until you have a child of your own. Now I understand what my mom was saying all those years. Now I understand her love more clearly than I ever have before.
A few days after we took her home from the hospital we got a call from the neonatologist. "Your daughter tested positive for DiGeorge syndrome" I don't remember much else from that conversation. I just remember watching my daughter sleep while I cried and Frank held me close and rocked me. I remember saying over and over again "my baby, my little baby". All I could think of was of the many trials she was going to face. We didn't know anything about the syndrome other than it was probably what caused the heart defect and it severely weakens her immune system.
After taking some time to let it sink in, it was time to buckle down and step up to the plate. We needed to be able to give Mya the best chances in life possible and in order to do that we had to arm ourselves with information. We went to her first appointment with the geneticist with a list of questions. We did research non stop on the web. One of my friends always tries to give us credit for being brave and strong, but that's not how I see it. We're her parents, and that's just what parents do. You just do without a second thought. You not only survive hardships but you attack them head on if it means giving your kids the best life possible for them. I see moms so differently now. We are truly fierce warriors so don't mess with our family!
6 months later, March 5 to be exact, it was time for Mya to have her heart surgery. That morning we woke up with heaviness in our hearts. Mya was the same as always. She was tired because we had to wake her up two hours earlier than normal but she was still smiling. It pierced my heart. When we handed her to the doctor to take her to the OR, I didn't know if I would see her alive again. I think that what made it really hard was the fact that she was just like any other baby showing no signs of being sick. It felt like we were giving a perfectly healthy baby over to the doctor for heart surgery not knowing if she would survive or not. Why would you do something like that unless your baby was severely ill and needed it as a lifesaving measure? Although we couldn't see it on the outside, she truly was sick and going into heart failure. Frank and I held each other and cried. We felt so empty and yet so heavy. 5 1/2 nail biting hours went by with periodic updates. "She's under anesthesia now." "We just made the first incision." "We've successfully stopped her heart. She's on the bypass machine now." " The doctor is closing her up now." Friends and family were in the waiting room with us. We tried to keep it light and optimistic but I don't really remember much of it. Finally the surgeon came out. The surgery was a success and we could see her in the PICU after they were done getting her set up in there.
She was puffy with her eyes shut. She was hooked to the ventilator with numerous IV's and chest tubes. It was hard to see. But at the same time I was so glad to see her again. My emotions were so confusing. I can imagine that it was similar for my husband but I don't know for sure. The days that followed long. There were times when I lived minute to minute. But each day she showed improvement. The hardest thing was to know that she didn't know what happened to her or why she was in pain with all these things hooked up to her. My heart felt like it was physically broken for her. In my mind, I felt that she looked to me as her protector, someone she trusted and I broke that trust. She would look at me with eyes as if to say, "Why don't you fix this? Make this stop" But I couldn't so I lost her trust
While I was in the hospital I noticed the other parents. We all had a battle we were fighting and we wore the wear and tear on our faces. It seemed we were all walking around like zombies, some more than others. Frank and I didn't really talk to the other parents there but it felt like we had an understood bond because nobody can begin to comprehend your pain unless they've gone through something similar. Being in the PICU helped me realize how truly blessed we were. Some parents didn't know if their baby was going to make it. The baby across from Mya had to be re-intubated three times while we were there. The baby next to Mya had been in the PICU 5 out of the 8 months of her life. Her mother is one of the strongest people I've ever met. With Mya, we knew she was going to make it. The journey that she had to go through was hard for us but at least we knew she would pull through. Not everyone in that PICU got that luxury.
A week later we were home. She wouldn't let me put her down for the first couple of days but slowly that went away and as she healed and the pain decreased, her personality slowly came back. It took a little over a month to see the old Mya again but she came back. Her recovery has been amazing. She can now sit on her own and is looking like she might start crawling in a little bit, that is if she doesn't walk first and skip crawling all together. She's such a happy and easy going baby. She has slept with Frank and I in our bed up until about a month ago. We thought because she was so used to sleeping with us, it would be hard to get her to sleep in her crib but she did it with no complaints. The first night in her bed she slept 9 hours straight and woke up in a good mood. She's had a few nights that were kind of rough but I can probably count those on one hand. And she doesn't always wake up in a good mood. But overall we've been lucky. She's a very pleasant and happy little girl. She loves to play and cuddle with you but has no problem being alone and entertaining herself.
I truly feel so blessed in my life. My husband loves and respects me and loves and adores our baby. He's right there in the trenches with me changing diapers and all! Our parents have been there for us from the beginning, going out of their way to make sure we are ok. We couldn't ask for better friends. They've stood by our side and cried with us, prayed with us, and laughed with us. So ya, we've had a bumpy road, but the blessing that came out of it are totally worth it! I feel that our relationships with those that have gone on this journey with us have grown closer and stronger with each challenge. Thanks for reading!
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