Holidays in the NICU. During the 5 months Maryam was there we spent Christmas, New Years, Valentine's Day, Saint Patrick Day and Easter all bed side in the NICU. The below pictures are from Christmas Eve and Christmas. Our families tried to make Christmas nice for us, but honestly, it was difficult to be cheery when you have a baby on full life support.
December is pretty much a blur to me. What little I remember basically includes sitting at Maryam's bed side for hours on end, day and night, crying, lots of email, lots of phone calls, and very little sleep. According to my notes, the docs started steroid treatment on her on December 23. They started feeding her December 24, 1ml of breast milk over 2 hours, then off for 2 hours. On December 25 they increased her feed to 2mls over 2 hours, then off. They start off the feeding process incredibly slow. They do this to make sure the gut is moving. If food gets in to the intestines and then doesn't get pushed through it can rot out your gut. This is uncommon, but common enough in preemies to move very slowly.
New Year Day came and went. Maryam started to get new visitors. I used to sing that Natalie Merchant song, "Wonder" under my breath or even in my head. It amused me, for some reason.
Read the lyrics....
Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way
Anyway, according to my notes Maryam got special visitors on January 2, 2007. Brett's Aunt Pami and cousin Marcy came to meet Maryam. I remember they came, saw her, cried and then we all went to lunch. It was nice having someone else from the family meet her. Keep in mind, this whole time my parents and Brett's parents were there several times a week. Sarah too. I think Sarah was there 5 days a week for the first couple of months.
On January 4 we found out that Maryam had to have surgery. The surgery was called a PDA ligation. "Patent ductus arteriosus, or PDA, is a heart condition that is normal but reverses soon after birth. In a persistent PDA, there is an irregular transmission of blood between two of the most important arteries close to the heart, the aorta and the pulmonary artery. Although the ductus arteriosus normally seals off within a few days, in PDA, the newborn's ductus arteriosus does not close but remains open. PDA is common in neonates with persistent respiratory problems such as hypoxia, and has a high occurrence in premature children. In hypoxic newborns, too little oxygen reaches the lungs to produce sufficient levels of bradykinin and subsequent closing of the DA. Premature children are more likely to be hypoxic and thus have PDA because of their underdeveloped heart and lungs." Thanks Wiki! Seriously, all the medical websites are written in a foreign language.
New Year Day came and went. Maryam started to get new visitors. I used to sing that Natalie Merchant song, "Wonder" under my breath or even in my head. It amused me, for some reason.
Read the lyrics....
Doctors have come from distant cities
Just to see me
Stand over my bed
Disbelieving what they're seeing
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
Newspapers ask intimate questions
Want confessions
They reach into my head
To steal the glory of my story
They say I must be one of the wonders
Of god's own creation
And as far as they can see they can offer
No explanation
O, I believe
Fate smiled and destiny
Laughed as she came to my cradle
Know this child will be able
Laughed as my body she lifted
Know this child will be gifted
With love, with patience and with faith
She'll make her way
Anyway, according to my notes Maryam got special visitors on January 2, 2007. Brett's Aunt Pami and cousin Marcy came to meet Maryam. I remember they came, saw her, cried and then we all went to lunch. It was nice having someone else from the family meet her. Keep in mind, this whole time my parents and Brett's parents were there several times a week. Sarah too. I think Sarah was there 5 days a week for the first couple of months.
On January 4 we found out that Maryam had to have surgery. The surgery was called a PDA ligation. "Patent ductus arteriosus, or PDA, is a heart condition that is normal but reverses soon after birth. In a persistent PDA, there is an irregular transmission of blood between two of the most important arteries close to the heart, the aorta and the pulmonary artery. Although the ductus arteriosus normally seals off within a few days, in PDA, the newborn's ductus arteriosus does not close but remains open. PDA is common in neonates with persistent respiratory problems such as hypoxia, and has a high occurrence in premature children. In hypoxic newborns, too little oxygen reaches the lungs to produce sufficient levels of bradykinin and subsequent closing of the DA. Premature children are more likely to be hypoxic and thus have PDA because of their underdeveloped heart and lungs." Thanks Wiki! Seriously, all the medical websites are written in a foreign language.
On January 6 my Grams, Auntie Karen, Uncle Tom and Auntie Kathy all finally got to meet our little Maryam. I think it was slowly killing them being so far away and not being able to see her. I'm glad they came. According to my notes Maryam was stable but didn't seem to enjoy all the extra stimulation. But holding her head and feet made her feel better. The nurses also started swaddling her that day.
January 8. Brett and I got to the hospital at about 9am and spent the whole morning crib side. At 10:30 my family got to the hospital and at 11:00 Brett's mom got there. At noon we were still waiting to meet the surgeon. We did meet with the anesthesiologist and Dr. Seabald around 12:30 and then had to go wait in the waiting room. Right before 1:00 we got to meet the surgeon. The surgery was complete by 1:40. We got to see her and spend time with her immediately after the surgery. We stayed until 2:30. When we left she was still paralyzed and unconscious. We called the nursery at 4:30 and her nurse reported that she was awake and looking around. So, we headed to the hospital to enjoy a little bit of uncommon awake time. That night we went back to the hospital around 9:30 and spent a very scary hour there. She was having a hard time staying stable. Her oxygen needs just kept going up and up and up. It was horrible. Finally I had to leave because I just couldn't take anymore. We called an hour or so later and she was fine again.
That's the end of my notes from the NICU. I still remember quite a bit, but not dates. Now, looking back, I really wish I had kept writing. I know why I didn't. It was making me super depressed.
I think I'm going to take a break from all this NICU stuff and catch up on now!!! I know I've been lagging on my blogging. My apologies.
January 8. Brett and I got to the hospital at about 9am and spent the whole morning crib side. At 10:30 my family got to the hospital and at 11:00 Brett's mom got there. At noon we were still waiting to meet the surgeon. We did meet with the anesthesiologist and Dr. Seabald around 12:30 and then had to go wait in the waiting room. Right before 1:00 we got to meet the surgeon. The surgery was complete by 1:40. We got to see her and spend time with her immediately after the surgery. We stayed until 2:30. When we left she was still paralyzed and unconscious. We called the nursery at 4:30 and her nurse reported that she was awake and looking around. So, we headed to the hospital to enjoy a little bit of uncommon awake time. That night we went back to the hospital around 9:30 and spent a very scary hour there. She was having a hard time staying stable. Her oxygen needs just kept going up and up and up. It was horrible. Finally I had to leave because I just couldn't take anymore. We called an hour or so later and she was fine again.
That's the end of my notes from the NICU. I still remember quite a bit, but not dates. Now, looking back, I really wish I had kept writing. I know why I didn't. It was making me super depressed.
I think I'm going to take a break from all this NICU stuff and catch up on now!!! I know I've been lagging on my blogging. My apologies.
No comments:
Post a Comment