on march 29th at 4 months and 19 days, damian rolled from his tummy to his back! while this may seem like a small milestone to most, it is a big deal to me because i know in my heart he is going to be ok.
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| damian michael 4 months |
flashback to november 16th 2010 (the babies had been home for four days)...around 10 in the morning i was upstairs in our bedroom nursing damian while the rest of the family played downstairs. my eyes had become heavy (as they do when you are nursing) and i had drifted off momentarily reminicing about my perfect delivery (see my birth story and photos here), my beautiful babies and how blessed our family was. when i opened my eyes and looked down at damian he was purple, limp and lifeless in my arms. i did a firm sternal rub to see if i could stimulate him but nothing, no response...he just stared blankly into space. i let out a blood curdling scream and my mom came running up the stairs knowing something was seriously wrong. i handed him off to her like a rag doll. after what seemed like an eternity (and i believe 4-5 puffs of air later) he began to cry and then scream. music to my ears!! kimber was on the phone with 911 and before i could turn around there were a crowd of medics rushing up our stairs. they hooked the leads up to damian and had on blowby 02 all the while he was screaming bloody murder. they insisted on taking him to the hospital for evaluation but i kept telling them it was probably nothing and i would just take him to my pediatrician (i was on the phone with dr. saul as this was all happening). then suddenly his heart rate dropped to 60 and the medic looked at me firmly and said "now is the time to be a mother, not a nurse". i briefly hesitated before hanging up the phone and climbing into the back of the rig. at first they wanted to go to santa paula ER as this was the closest option but i insisted on CMH ER (#1 i used to work there and #2 they had a nicu) so CMH it was. the whole time i was trying to stay calm, knowing that ALTE (apparent life threatening events) usually do turn out to be nothing.
dr. johnson came in right away to see him and said they were going to need to run some tests and just in that moment damian quit breathing again and his oxygen saturation dropped to the 50's, the doctor looked at me and said "you just bought yourself an admission to the nicu". at this point my husband had arrived in tow with both marcus and sophia. i just remember him being very quiet and trying to re-assure me that everything was going to be ok. we decided that it would be best for him to go home with marcus and sophia and i would stay with damian so as not to expose everyone to the nasty hospital germs. i insisted that sophia have a 24 hour vigil in my absence (the lights could not be turned off and shifts would be split between my husband, my mom and kimber) to be sure she too would not do the same thing as damian.
once damian's rsv came back negative we walked him upstairs to the nicu where the nurse quickly ushered me out of the room to "get him all settled". this was just the start of what turned out to be a nicu experience that has left me raw. first there were all the rules and more rules. no visitors between 630-730 am/pm, only 2 visitors at a time, either the dad or mom have to be present when a visitor comes, i could go on and on. perhaps the most upsetting thing to me was their policies on breastfeeding (yes policies). they claimed to be a breastfeeding friendly facility but i learned quickly that was a lie. i won't get into any specifics but i can tell you i fought them on almost everything.
as a mother nothing and i mean nothing is more upsetting then having a sick baby. the best word to describe it is out of control. i hated every time i had to leave damian. it made me sick to my stomach to think that someone else was taking care of my baby. were they holding him? would he be left to cry?would they sing to him or read him stories?
dr. johnson came in right away to see him and said they were going to need to run some tests and just in that moment damian quit breathing again and his oxygen saturation dropped to the 50's, the doctor looked at me and said "you just bought yourself an admission to the nicu". at this point my husband had arrived in tow with both marcus and sophia. i just remember him being very quiet and trying to re-assure me that everything was going to be ok. we decided that it would be best for him to go home with marcus and sophia and i would stay with damian so as not to expose everyone to the nasty hospital germs. i insisted that sophia have a 24 hour vigil in my absence (the lights could not be turned off and shifts would be split between my husband, my mom and kimber) to be sure she too would not do the same thing as damian.
once damian's rsv came back negative we walked him upstairs to the nicu where the nurse quickly ushered me out of the room to "get him all settled". this was just the start of what turned out to be a nicu experience that has left me raw. first there were all the rules and more rules. no visitors between 630-730 am/pm, only 2 visitors at a time, either the dad or mom have to be present when a visitor comes, i could go on and on. perhaps the most upsetting thing to me was their policies on breastfeeding (yes policies). they claimed to be a breastfeeding friendly facility but i learned quickly that was a lie. i won't get into any specifics but i can tell you i fought them on almost everything.
as a mother nothing and i mean nothing is more upsetting then having a sick baby. the best word to describe it is out of control. i hated every time i had to leave damian. it made me sick to my stomach to think that someone else was taking care of my baby. were they holding him? would he be left to cry?would they sing to him or read him stories?
the nicu doctors ordered blood cultures, urine cultures, a spinal tap, chest x-ray, barium swallow study, labs, you name it they ran it. in the meantime damian was started on double antibiotics and an antiviral. after 3 days the only thing they could tell us was all the tests were normal and they thought his inguinal hernia may be the cause of the apnea and bradycardia spells. so they called a pediatric surgeon from cottage in s.b. to come and see him. after meeting with dr. keshan it was decided that we would go ahead with the repair.
these are the pictures i took just before they took him to surgery:
the surgery went well and took only 45 minutes. dr. keshan told us we would be able to bring our boy home by thanksgiving day!! i was estatic. what happened next threw us all for a loop. the morning after surgery i was reading the very hungry catepillar to damian while he slept in my arms. i remember looking at him and thinking he looks so swollen. i mentioned it to the nurse but she quickly brushed me off saying that swelling is normal after surgery. that same day i had to take sophia to an appt to see dr. saul for her jaundice so i nursed damian, kissed him and reluctantly put him back in his isolette. little did i know that when i returned this is how i would see him:
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| i was shaking so bad the picture is a bit blurry |
while i was on my way to dr. saul's with sophia i had a sickening feeling something was not right with damian (all i could keep thinking about was how swollen he looked), so i decided to call the nurses station and get an update on him. when they answered the phone they said i would need to talk to the doctor. when dr bengston got on the phone i was in a panic. he told me damian had quit breathing again and was having seizures, they had discovered his sodium levels were dangerously low at 111 so they were replacing the sodium in his i.v. my body went numb as he calmly told me damian could have any of the following conditions: brain bleeding, heart failure, pulmonary edema, or kidney failure. i was in a state of shock. after 24 hours the seizures and swelling had subsided and the doctors told us damian had developed siadh as a result of general anesthesia. the good news was that it was not permanent and he would recover but they could not promise me whether he would have any permanent brain damage or developmental delays and they told me we would have to wait and see. on december 1st after 2 long weeks in the nicu we were able to take damian home. i am happy to report he is healthy and meeting all of his developmental milestones. he shows no signs of brain damage. we are so incredibly lucky and blessed to have 3 wonderful healthy babies, our three little bears.
special thank you to our pediatrician dr. saul - your unwavering support and daily phone calls helped me keep things in perspective...you are the best!!
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