3-13-08

It has been a month since Bethany passed away so I thought I'd finally write about that day.  While Bethany was alive, it was helpful for me to read other's stories so that I would know what to expect.  Maybe this will be helpful to someone else.

Bethany had been on meds for reflux, something to help food through her system quickly and codeine for discomfort.  She was using a kangaroo pump at night for continuous feeding so that she could gain weight (and also so that if I slept she wouldn't miss out on getting fed).  I still had to wake a lot to give her meds but she was becoming more stable in my mind since her heart was showing no signs of failing and the apnea episodes had stopped.

We actually had made an appointment to have a family meeting with the hospice team about Bethany.   She seemed to be a survivor.  She never spent a day in the hospital (except when she was born) and she seemed to be doing ok except for discomfort.  We wanted to discuss some options about her life.  Maybe tests or possible operations to help her.  The meeting never took place because Bethany passed away the day of the scheduled meeting.

The night before, Bethany's breathing was a little odd.  It was like weird gasps instead of normal breathing.  She would appear asleep and then open her mouth and raise her chin up with each breath.  I called her nurse and we discovered that her lungs were clear and her heart was working properly.  So, I didn't worry...perhaps it was just one of those things. 

The next morning my son came in the room at 6:30am and he was coughing.  I was so worried that he would wake up Bethany.  Then he coughed again and she didn't stir.  I asked him to check her and see if she was breathing.  He told me she wasn't so I got out of bed and went to her crib (her crib was in our room).  She was breathing but it was gasping again.  So I took her off the kangaroo pump and laid her in bed with me.  I called my husband who was already at work and he decided to come home.  In the 20 minutes that it takes my husband to drive home, she had two apnea spells that lasted about 2 minutes each.  I was so relieved when he got home.  We changed her and dressed her for the day.  I got in the shower and she had another spell while I was in the shower.  We called our team and they were all there by ten o'clock (nurse, doctor and social worker). 

Basically, over the next two hours, we watched her stop breathing and her heart rate would drop to 60 and then she would start breathing again and her heart would be back to normal at 120.  All the kids were home in the next room because ironically, school was canceled because there was no power.  We had taken out her feeding tube because eating wasn't an issue at this point.  At one point, she opened her eyes and looked at me with a huge gasp.  It was like she was in pain--we didn't like that at all.  The doctor wanted to try and give her codeine by mouth but she got so upset, she basically passed out.  My husband started patting her again and she began to breath again and her heart rate was back up.  So we put the feeding tube back in and gave her 1cc of codeine.  She relaxed and fell into a normal sleep.  Shortly thereafter, the team left.

At almost 4pm, I started pumping more milk for her and my husband got ready to feed her.  She had missed 3 feedings and we were concerned.  We started her feeding and she had a pained look on her face for about one second and then she completely relaxed and stopped breathing.  We held her, rocked her, prayed and cried like we always do when she had an apnea spell.  This time she didn't come back. 

It is interesting to note that through all her apnea spells this was the first time that she had several in a row on the same day.  On another occasion, she had had two major spells and a few during the night--but that was before Thanksgiving.  We had asked the doctor if her heart was having trouble and he believed that her heart and breathing problems were because her brain wasn't communicating to her body the way it should.  Bethany only gained about two pounds in her short life and eating was always a struggle. 

If anyone has any questions about Bethany please don't hesitate to email me.  I would be happy to help in any way I can.  I know that each child is so different but I think there are things that are similar that can be helpful.  Good luck to all T13 moms.

Chelsey and Aaron

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2-13-08

Bethany passed away this afternoon. Yesterday her nurse checked her heart and lungs and they were working great. Today she just forgot to breathe.

She brought the sweetest spirit into our home and now that she is gone, a piece of her goodness remains. We feel so blessed to be her parents and our hearts ache for her.

Chelsey and Aaron
 

1-28-08

We knew Bethany was T13 back in July with two heart problems...Double Outlet Right Ventricle and VSD. We also knew she had a cleft lip. After she was born, we learned she had a cleft palette as well. She weighed 5 lbs 12 oz and couldn't swallow very well so she has a feeding tube.

Bethany is our fifth child and our fourth girl. We were devastated when we found out that she wouldn't have a perfect body and prepared for a funeral. Now we are just so grateful for everyday with her. She is amazing. I read so many others say this about their child but I truly didn't understand what they were talking about until I held our little sweetie.

Right after Bethany was born, the doctors told us we would only have a few minutes with her. They didn't even put a diaper on her, just wrapped her up so that every moment of life would be spent in our arms. She cried quietly over the next for two hours while we held her and took pictures of her with the other kids. Then we decided to bath her, dress her and finally put on a diaper and then she was quite content.

We brought her home and she was very weak. Then she started having apnea episodes that ranged from 4 minutes to 11 minutes. The last episode was 5 weeks ago and she hasn't had any more. We know she isn't supposed to live but she doesn't know it! We carefully love her and take care of her the best we can without causing her any more pain. She seems to like that and stays around.

We have an excellent pediatric hospice team that comes into our home and helps us with our baby but there are so many unknowns with each child and it seems to be that way even more so with a T13 babies. Our hope is to find answers to some questions so that our time with our baby is the best we can offer.

Chelsey Gregory
Chachee chacheeblue@yahoo.com