I was exactly 1 week overdue. That
afternoon I had a regular scheduled appointment to see the doctor, for a routine check-up.
While at the doctor's office I mentioned to him that I was worried the I didn;t feel the baby moving. From there we went to the local hospital, for further evaluation.
In the hospital I was monitored externally and further actions were taken to try and "wake" the baby. After a time, the doctor announced "It is C-section time." Camryn was born at 6:30pm that same day. Upon delivery, the doctor noticed meconium inside of my uterus and on Camryn. There was a chance she could have aspirated some of the thick, tarry liquid, which could lead to respitory distress. She was immediately taken to the nursery to be treated and closely monitored. I was not able to see Camryn when she was born. She was whisked away so quickly. It was only minutes after the delivery and her first blood test, that the doctors realized Camryn was having a complete shutdown of all her body systems. She apparently had been deprived of oxygen in the hours, prior to her birth. She went into respiratory arrest. She was intubated and kept on a ventilator to breathe for her. Her heart's "hole" had not closed upon delivery, further making blood oxygenation more difficult.(This hole helps the blood bypass the lungs while the baby is inutero. It closes when a baby is born, sending the blood to the lungs to be saturated with oxygen.) Drugs were administered to help her BP. It was crazy, up one minute way down the next. She was also having continuous seizures, due to brain swelling, for which she was heavily medicated, to help stop them. Also, her liver was not functioning properly, it was not making platelets and was enlarged. Platelets cause your blood to clot, so you do not hemorrhage. Clotting problems are very serious, especially with brain swelling. Brain swelling gives the potential for brain bleeding (which alone is serious enough), but together with no platelets means the highest potential for brain hemorrhage, causing serious damage and/or death. Also, a baby has a fresh cut umbilical cord, which can bleed. Camryn was having numerous blood draws and several IV's had to be inserted, raising the potential for bleeding. Last but not least, her blood sugar was seriously low, which could cause further brain damage if not remedied quickly. All of these malfunctions were presenting, one by one. With each new problem, a new drug was administered, to help remedy the problem.
Now, it is almost 4 hours, post delivery. No one has come to me with any medical information about Camryn, except that the doctors are continuously working on her, trying to save her. (Everything I have written to this point was learned by me and my husband AFTER she was transferred to another hospital.)
Finally, one of my nurses came to us with a Polaroid picture of Camryn. That picture was the first time I saw her.
 This is Camryn, a few minutes after birth, on a ventilator. This is the first time I ever saw my baby.
At 11:00pm that same evening, Camryn was shipped by ambulance to Boston Children's Hospital. It was explained to me and Paul, that she needed to go to a hospital that had access to a high frequency ventilator, if Camryn was to not do well on the currently used "regular" ventilator. Paul left me at Backus Hospital, to follow Camryn to Boston and to stay with her. Because I had a C-section, I was to stay hospitalized for at least 3 days. Beginning the next morning, I received phone calls, on an hourly basis from the doctors and nurses in Boston, that were working with Camryn, in the hospital's NICU. It was during many of these phone calls the doctors would ask my permission to allow certain procedures to be done to Camryn. Paul felt better having me make the medical decisions, since he thought I knew a little more about the medical details than he.
During the next 3 days Camryn received a list of medications, two pages long. Most often, she would receive all of these medications at the same time. Most IV medications need to be infused in normal saline or glucose fluids. Therefore, because she was receiving such large amounts of fluid into her body, it caused her to experience edema over her entire body, even her eye lids were swollen shut. Camryn's blood continued to have poor clotting ability. So, she also received donor platelets, to help her blood to form clots. She was in a sort of "coma" due to the high amounts of Phenobarbital she was receiving, in an attempt to stop the seizures she was experiencing. She was monitored with a continuous EEG for 24 hours, to see if they could stop the seizures with the medicine. All the medical problems she experienced in the first few hours of birth continued or worsened in the next couple of days. I was still hospitalized throughout this whole ordeal.
Finally, I was released on Thursday afternoon...3 days after she was born. Before leaving Boston, to pick me up, get a change of clothes and to put some affairs into order, Paul bought Camryn a stuffed kitty cat to keep her company, until we both could return. Also, since I had not seen Camryn since she left CT to go to Boston, Paul took some pictures, for me. He had them developed at the one hour booth, so I could see them before we returned to Boston. This was the first time I could see just what Camryn was going through and what she looked like...
 Camryn, 3 days old, on a ventilator, with EEG leads attached to her head.
The very next morning we headed back to Boston.
We arrived back in Boston on Friday afternoon. We spent most of the afternoon and evening at Camryn's bedside without much change in her condition. The next 3 days in Boston were a series of up and down moments, filled with bad news as well as some good news. Camryn's body systems were showing some signs of improvement. Her kidneys finally showed signs they were coming to life. Her kidney function had been monitored by a catheter inserted into her bladder. Her urine output was measured this way. By Saturday she was able to have the catheter removed because doctors believed her kidney function was stable and improving. Her most recent echocardiogram showed no signs of cardiac damage and the "hole" in her heart had closed. Although she continued to have difficulty with her blood pressure, it was becoming less frequent that she was needing medications for this problem. Also, after several transfusions of platelets, Camryn was showing signs, in her own blood, of increased platelet production. Her liver was still enlarged, but the doctors stated it would take more time for it to return to normal. There was still only one body system which the doctors had great worry. It was her neurological system, which included her brain.
At this point, Camryn was still in a "coma" and the doctors did not know if she would ever come out of it. We met with the NICU doctors on Friday afternoon. The doctors stated, because Camryn suffered such a severe lack of oxygen, her brain was damaged. This was confirmed with an MRI, which revealed numerous insults to her brain. Since I am a nurse, I was very aware, when told of her brain damage, it does not "get better". All other body systems can heal and regenerate BUT not the nervous system, not nerve cells. Once damaged, always damaged. Since she was having the continued inability to breathe on her own, they assumed the damage near her brain stem was pretty severe. They did not know what kind of higher functioning, if any, to expect from her. We were presented with the most likely scenarios being... continuous coma or if she woke, a very low functioning human being, with severe mental retardation which could include possible blindness, and deafness. Possibly, needing the continuous use of a ventilator to breath and artificial means to eat (stomach tube). We were also told, if we chose to, if Camryn should wake and show signs of such low functioning, we could choose not to feed her at all, basically starve her to death. They offered little hope. Paul and I sat at the table with the doctors as they told us these horrible things. I was in a fog, I didn't hear anything but my own thoughts screaming through my brain. We left the meeting and retreated back to our hotel, in shock. There was no way I could go back to Camryn's bedside, after hearing what they had to say. We needed to think about the awful and unthinkable decisions we would have to face in the coming days. Also, to muster up a little hope, too.
Together, that night, Paul and I never considered the idea of starvation, it was out of the question. She was our daughter and we would take care of her, no matter what her condition. We adopted a new attitude of thinking positively. We agreed, when we returned to Camryn's bedside on Saturday morning, to "hear" what the doctors were saying BUT to continue with our new found way of thinking..."not to believe it till we saw it." Good thing too...because, she was yet to shock and surprise them ALL!
 Camryn and Daddy, Saturday morning, with a NEW ATTITUDE!.
Over the next two days Camryn was showing good signs of improvement. Her ventilator was set at the lowest possible setting. This meaning, she was breathing mostly on her own, with only a few assisted breaths per minute, by the ventilator. Her condition was stable, nothing else appeared to be getting any worse.
By Sunday, we were ready to move Camryn closer to home. Back to Connecticut, where it was not so taxing on us and our families, to stay with Camryn. On Sunday afternoon, Camryn was taken, by ambulance, to John Dempsey Hospital, in Hartford, CT.
Paul and I met with a neurologist at the NICU, shortly after Camryn's arrival and after she had time to read Camryn's chart and assess her. Afterward, she spoke with us about Camryn's condition. How it was much a "wait and see" type of condition. The brain, she said, is so complicated, we just cannot absolutely say what the outcome will be. But definitely, Camryn will be here in the NICU, for maybe a month or more.
We were able to visit with Camryn during the day and return home at night to sleep. This was such a treat compared to the hotel living we did in Boston. Also, all of our family members were able to take the short trip, to Hartford, regularly, to visit with Camryn.
Camryn continued to improve. She was becoming more alert and coming out of her Phenobarbital stupor. Although, it was still very difficult to assess her true neurological status due to the "drunkenness" caused by the Phenobarbital. She was doing so well, in fact, that Wednesday morning, she was taken off the ventilator to see how well she would do. She took off breathing on her own as if nothing were ever wrong! No coughing, no apnea, nothing! She had a wail of a cry though! While on a ventilator, due to the tube in the airway, you cannot speak or make noise. Camryn only appeared to suffer the usual, raspy voice caused by throat irritation. It sure was great to hear her cry!
 This is Camryn, with only a few IV lines and monitors BUT breathing on her own!
With Camryn now having the ability to breathe on her own and the seizures she suffered at birth seemingly disappearing, we were able to start weaning her off that awful Phenobarbital. We hoped it was responsible for much of her sluggishness and unawareness.
Our next biggest worry was to evaluate her ability to suck and swallow. This is a normal reflex in healthy babies. Hopefully, her brain damage didn't affect this reflex. Up to this time, Camryn had been receiving all of her nutrients through IV lines, having nothing by mouth. It was only the day after the ventilator tube was removed that Camryn started to respond positively. At first she was reluctant to suck on the bottle nipple. It only took a few tries and she seemed to start getting the hang of sucking. This was wonderful. It meant Camryn was not going to have to be fed via nasal gastric tube. She started out with only 5ml of milk, it seemed to take her so long to eat this very small amount. Such a small amount is given, so we could be sure that Camryn's gut could handle the digestion of food, showing there was no damage to her intestines. After a day or so, she got the hang of eating from the bottle with no apparent GI upset. She progressed quickly, which was great, because, if we wanted to take Camryn home, she had to show the ability to eat at least 60ml of milk. It took her only three days to meet the doctors eating demands!
On the evening of Sunday, February 28th, we were told, if Camryn did well with her neurological assessment the next morning, we would be able to take her home that same afternoon. March 1st seemed like an eternity away from February 15th, the day Camryn was born. She had been hospitalized for two weeks...a far shorter time than the proposed one month, as the neurologist imagined. She was a strong baby from the very beginning of her life, she kept fighting that "good fight," showing all the medical world, this baby should NEVER be underestimated.
That afternoon, we gave her a nice bath, put her into some comfy little clothes, bundled her up, slipped her into her new car seat and took our Little Baby Camryn to a new place...home. To sleep in a peaceful environment, less all the bells and whistles of the NICU. Home to her own cozy little bassinet and to the family who love her.
Almost three years have past since Camryn's dramatic entry into our lives. Please, come visit Camryn's Progress Page, to read how she has progressed up to today. |
