How timely as my little NICU babe just turned 4....
I delivered at home as planned with an extremly experienced midwife at 38 weeks. I had an uneventful pregnancy and labor delivery.
As my son was crowning I started to worry and vocalize my worry that something was wronge with him. I knew it was ridiculous he wasn't even born yet but at the same time I had a very strong mothers knowing.
My sweetheart was born 8 pounds even 2 weeks early at home.
He did not cry and apreared to go right to sleep after birth, never opend his eyes, did not root to nurse. I KNEW something was wronge but my midwife assured me that he was fine and reminded me how active he was during my entire 9 hour labor.
I went to take a shower and was told while I was away he woke, screamed and pitched a grand fit. This did make me feel better but my heart was sick with worry.
His apprearence was fine, his apgar an 8, his lungs were clear his heartbeat reg. and steady. I have a nursing background the rational side of me said he was fine but the nagging would not go away.
I had labored thorugh out the night and fell asleep an hour or so after he was born. I woke to the sound of him grunting between breaths ( he was "asleep" in my arms) He was also turning blue between some of his breaths. I called my midwife who came right away with O2. (she had gone home it was hours after the birth) The grunting stopped while on O2 but he did not wake and could not be woke so she advised we go see the ped.
We drove with O2 tank to the ped about 40 min away she advised my sweet babe be admitted to the local hospital I was no ok with. This hospital is known for issues and non experienced staff. So we chose to self transfer to the bigger childrens hospital. The ped. refused to call an ambulence for transport because she had no practicing rights at the children's hospital.
But something in my heart said my baby needed to be there.
I sat in the back seat while my now xh drove. We ran out of O2 apporx 10 from the ER entrence. My son stopped breathing and had no pulse in his car seat so I did CPR in the back seat while my x drove as fast as he could to the ER. ( thank god for my nursing/medical background)
My son arrived at the ER dead....I ran down the hall with him in my arms screaming "my baby is dead someone please help me" he was taken from me and I collapsed in the hallway out side the triage room. I had a fabulous receptionist who called social services and stayed with me and just let me cry and sob on her until I was just raking in sobs and was delerious with grief and emotion.
After several attempts they brought my son back and put him on a vent. After a few hours he was stable enough to transfer to NICU. The first 24 hours were touch and go they were convinced he had an infection my midwife had other ideas of what could be wronge. After the 2nd day he had more tests and he was found to be suffering from persistant fetal circulation that had lead to pulmonary hypertension and cardiac arrest. Basically what had happened was at birth his circ. system didn't switch to being outside the womb so the valve between the heart and lungs never opened. The heart pumps blood agaist this "wall" and enlarges because the blood is going no where untill the newborn goes into cardiac arrest and ... in the case of my son because no one listened to me and it wasn't caught early enough dies. The only " cure" is O2 support and waiting for the circ. system to swtich and the valve to open. We were lucky that we caught it and got him medical treatment as he was going into cardiac arrest a few more min and my son would not be with me now.
Once diagnosed I was told the good news, most newborns circ. "switch" in the first 72 hours, bad news if they don't do it then there is a less then 10% chance that they will and there is nothing to do but wait and then decide to leave on the life support or turn it off.
In the NICU my son could not be held , he O2 stats went down, he could not be touched, exposed to light, noise, ect. Any bit of stim. would send his O2 stats down. He was on a vent for the first day and then CPAP O2 for the days after but always witht he threat of needed the vent again. I sat with him from 8 am to 8pm except shft change in a dark, windowless, noiseless room, watching his monitor and hoping he would come out of his " coma". The 72 hour mark came and went and I was advised every morning that he odds were agaisnt us, soon he would need more life support, kidney support, ECHMO for the heart lungs ect to cont his "life". During this time my exh ( at the time my husband) could not handle what was happeneing so he went back to work and to stay with him family so he could be supported, this left me completly alone 60 miles from home, him and my elder son to decide on my own what to do with my sweet baby. I chose to keep him on the CPAP but not pursue further life support options because I felt at that point they would be futile. On the night of the 5th day I was told that in the morning my baby would need to be put on by-pass machines as his heart was damanged by the near cardiac arrest episode and days of being in this state.
I held my son despite the falling O2 level and told him that he had a whole family who loved him and wanted him but he had to choose if he was to be with us or to go because we could not stay in this state of limbo. I then left the hospital for the first time in 5 days because it was my elder sons birthday.
When I returned it was to a ringing phone in my room (they set up a transitional home for me as I lived an hour away and my son could have died at any time, thank goodness for them ) On the phone was my babies primary nurse who I had grown close to, she said my sons eyes were open for the first time and he was rooting and pissed that his mama wasn't there. I rushed right over and met my son for the first time. His circ. system had switched, the valve had opened, despite the odds at day 5 almost 6.
We stayed at the hospital another 4 long days while I arranged home health care for me son. After returning home he recieved 7 weeks of home health care. During that time I pumped every 2 hours 24 hours a day to provide breat milk for his nose tube. At 7 weeks his suck was stronge enough for the first time to attempt the breasts but it still took us months to really nurse full time.
Over the past four years we have faced a few medical challeges due to his post birth trauma.
I suffered horrible PTSD , I could not reenter that hospital , I had nighmare of doing CPR on my son and running that long hall screaming for help. My marraige fell apart and I am now a single mother to both my sons.
My little NICU babe had heart damage from his birth illness that self resloved just one month short of schedualed open heart surgery. He was deaf until last sept when we were able to correct his hearing through surgery. He suffers from bi-pulmonry dysplasia from the life support he received at birth a progressive lung cond.ition . At this point it is controlled by meds and regular visits to a ped. pulomo. His speach is behind due to his hearing loss.
BUT my son is happy, and in so many ways healthy. He nursed until he was 3 1/2 . He is expected to regain complete control of his speech in time and it is coming in leaps and boundes. Mentally he is fine which is a miracle given the amount of time he went with out proper O2. I know he chose to stay with us and I am forever grateful.
I am terrified of having more children. My NICU experience still haunts me.