Please Pray for Emberjayne Grace
Emberjayne Grace was born on Jan 5th. She came home Jan 7th, a day late because Mom spiked a temp and had to receive 24 hours worth of heavy duty antibiotics to get rid of whatever infection was causing the fever.
Around lunchtime on Friday the 8th, Ember had her first seizure. It was short-only 20 seconds. We were not completely sure it really was a seizure. Twenty minutes later we knew for sure as she had another one, this time a full minute and with all the tell tale signs of a granmal seizure. She was taken by ambulance to the nearest ER. She was stable the whole time and not seizing anymore. Once at the ER, they wanted to put in an IV, draw blood, do a spinal tap, CT Scan, and chest X-ray. No one could get the blood draw.We had to watch them poke over and over. Finally my husband put his foot down and made them stop. Her veins were too tiny and dehydrated since this all started right around the time she was due to eat next. We were in the ER forever.They got nurses form peds and ICU to try and even t hey couldn't get the IV in. They finally did the CT scan and all we were told at that point was they thought they found the diagnosis and that the doctor would come speak to us shortly. My husband stepped outside to get my mom-in-law at my request. The doctor came in abruptly and without waiting for even my husband told me that she had a bleed in her brain which would require surgery. She would be airlifted to Loma Linda and that she would probably be ok. I went numb. I had to tell my husband and mother-in-law. The room was flooded with very raw and fearful emotion. The need to get the IV line in became imperative. The ER nurse finally got the IV. The peds nurses had given her some sucrose whihc helped plump up her veins a bit. They also got the blood draw finally. We spent the next couple of hours in utter fear and shock as we waited for transport to Loma Linda. Then a nurse came in to as fr signatures to approve transport to Riverside Regional Medical Center. Loma Linda had no beds and would not accept her case. My heart sank, but the nurse assured us that the facility was just as top notch as Loma Linda. I prayed that this was God's hand at work and that He was the one picking the hospital. They were also not airlifting but transporting by ambulance to RRMC. When the transport crew arrived God's hands started to become more and more evident. We were given more details on her condition. She did not have a bleed in her actual brain matter but the subdura which is in the layers between the skull and the brain and that it might NOT require surgery. More info would be needed to know for sure. They took our baby and we headed home to grab stuff as we waited to learn more in the NICU at RRMC.
What we have learned since then is this...
1. She does in fact have a subdural bleed in her left temporal lobe, but it is small and due to her excellent condition other than the seizures appears to be putting no pressure on the brain and is not going to require surgery at this point-only careful observation.
2. She does also have a skull fracture on the back of her head. It is no where near the bleed however and is most likely unrelated, however weird it is and again will not require immediate treatment. She did not fall and was not hit or mistreated in any way.She has no bruises or depressions or other fractures. The only explanation would be from some trauma she received in the birth process but there is no way to ever know for sure as her birth was normal and uneventful. We may still have to deal with CPS though which is policy when it comes to skull fractures and babies.
3. We will need to have a EEG preformed to see if there is continued seizure activity going on. This will most likely happen sometime Monday or Tuesday and we probably won't get results until later in the week. She is on a anti seizure medication though, just in case.
4. The seizures could have been brought on by an infection. I did have one in the hospital and she did receive breast milk, as puny an amount as it might have been. She is now on 3 different antibiotics and one antiviral which she is receiving through an IV. Even though they don't know what is going on for sure, a treatment can always be stopped but it can never be moved back in time. The spinal tap was done at RRMC and the first indicator was that there was not any infection but test results are not complete yet.
5. She is doing unbelievably well. She is eating-alot- up to four ounces at every feeding and has already regained her birth weight. Her reflexes are all normal and she is very responsive. She is a fantastic and easy burper! I am still trying to nurse as well and pumping too.
6. She will be in the NICU for at least 7 days.
These are the things we need you and everyone you possibly know to pray for...
1. Above all else that God's hand continues to be in every aspect of this situation and guides all the doctors and nurses. Pray that He guides our decisions as well.
2. That she continues to be stable and doing well.
3. The bleed will disappear on its own and that the skull fracture will too. Our neurologist still wasn't convinced it was really a fracture because of its placement. It could just be at the suture line-the spots where babies skulls aren't fused together yet.
4. That the EEG shows no signs of seizures.
5. There will be no short or long-term effects from what she has already experienced and that she will not experience any new symptoms or complications.
6. That we can weather this financially. Our insurance should cover everything, but there are incidentals like traveling and meals that are not part of our budget.
7. That I will continue to be able to nurse and produce a sufficient enough milk supply.
8. Please pray also for her brothers and sisters as they deal with of all of this as well.
Thank you so much for your prayers in advance and for those of you who already knew and have been praying already we thank you as well. We know that it is God who is in control and that He answers those powerful prayers. There are so many who have already done things on our behalf as well and we thank you all from the bottom of our hearts.
Julie Moses- Mom of Emberjayne Grace
