Invitation

Pregnancy & Infant Loss (PAIL) Remembrance Day is commemorated each year on October 15th. We have buried Dominic and Bridget in infancy. We have experienced multiple miscarriages as well. We know of many other infants who died shortly before or after birth, or in their first year. We also know of many who have experienced a miscarriage or multiple miscarriages.

We remember Dominic and Bridget by lighting a candle for one hour beginning at 7 p.m. We also recognize all those who have also experience PAIL. Everyone who would like to acknowledge and honor the brief lives and hope for life of these children, born and unborn, is invited to participate.

We are asking everyone in all times zones, worldwide, to join us by lighting a candle tonight at 7 p.m. (October 15th, 2009).

For more information, please visit http://www.october15th.com

In Memory of Bridget Lucille

July 18, 2007, we welcomed our seventh child into our family. Bridget Lucille was five and a half weeks early, weighing in at five pounds even. I had been having pre-term labor symptoms for a couple of weeks before her delivery, so was able to get steroid shots to mature her lungs. I had an amniocentesis done the morning of her delivery to be sure that she would be as ready as could be for her early arrival. When we she was born having trouble breathing, we were very surprised.



The NICU was a terrible experience. It seemed everything went wrong. They put her on CPAP for what they thought was respiratory distress syndrome due to prematurity. When she was getting worse and not better, they finally realized on the xray that Bridget in fact had a pneumothorax, on the same side that her collarbone had broken. CPAP was forcing pressure into her punctured lung, making it harder for her to breathe, and putting pressure in her chest cavity making it harder for her heart. They took her off the CPAP and just gave her a little extra oxygen for awhile, then let her be and the pneumothorax healed on its own.

The world of "protocol, policy, procedure" held us hostage. They thought Bridget's gestational age automatically meant she was not going to be able nurse. She had a great latch and a strong suck, though. After the nurse was able to see that, they gave into letting us keep her off the feeding tube. I warned that our children all have had newborn jaundice, and our last preemie had been very close to a transfusion due to billirubin levels, and to expect levels to go from moderate to high very quickly. Just as I'd warned, Bridget did indeed have jaundice. The NICU used intensive light therapy to help her, but neglected doctor's orders to have her on an IV. She became very weak and tired very quickly. Overnight she went from being like a term baby to acting more premature. That was the turning point for her. She started smiling repeatedly, which at the time we called "talking with angels," but neurologists who viewed the videos say it looked suspicious of seizure activity. She lost her strong suck. She slept so much.

We were nervous and happy to finally be able to bring her home ten days later. I didn't know if she was ready, but felt that the NICU was not giving her good care. The pediatrician was ready to let her come home with us. It was just so nice to finally have Bridget home with us.



I learned about kangaroo care and kept Bridget on my chest constantly. We hadn't bought a baby monitor, but my husband joked that we didn't need it because really, when did I put her down. He was right. I carried her everywhere. She just seemed so fragile and weak. I worried about how sleepy she was and how she seemed to have such a hard time nursing. I pumped milk to make sure my supply would be adequate for her. We gave her extra bottles with a little formula mixed in to give it extra calories.

She did okay at first, but the next time we took her in for a weight check she wasn't gaining weight. We talked about possibly doing a feeding tube, but decided to try a few more days. I learned about a nipple shield and started using that. She seemed to have an easier time with that, but still struggled. We took her back in and she had gained some weight. The doctor told me not to bring her in for another month unless I was worried, and then they could check her weight.

I honestly was worried all the time. Constantly. There was not one day I wasn't worried. I tried to tell myself that she was just premature and that just because Dominic died didn't mean she would. Besides, he died from botulism, and I knew the symptoms and was watching carefully. And the doctors all had told me that lightening doesn't strike twice. I took her in for a weight check and she actually was gaining okay. I tried to relax, but I just couldn't.

Bridget continued to have episodes of "talking with angels." They became a little more intense, and we started calling it her "trance state" because she seemed to be awake but not really aware of what was going on around her. Afterwards, she would just become so tired and lethargic. She was so floppy, like Dominic had been. I was very worried. Sometimes she would breathe so shallowly that I wasn't sure she was breathing at all. She would get mottled a lot, too. Things just didn't seem right. When she was floppy and tired, her jaw would fall back. She just seemed much more tired than I thought was okay.

I felt reassured because a home health nurse was coming out every couple of weeks. She would weigh her and evalute her development. She would always tell me that Bridget was doing great. She was tracking objects, holding her head up. She was always so alert and paying attention. She never saw her "trance episodes" or lethargic times. I thought maybe they really were more likely just silly quirks, maybe from being premature, and maybe since the nurse wasn't seeing problems that I was just being paranoid.

She would have times when she seemed to be doing fine. I would think that maybe I was exaggerating what I was seeing because of what we'd been through with Dominic. Maybe I was just being paranoid, like my husband thought. I just adored my baby girl and thought she was such a precious, beautiful child. I would really only put her down to take pictures, which thankfully I took many. I worked hard on the feeding to make sure it was successful. I wasn't going to let my baby starve! Sometimes I thought about how hard it had been to feed Dominic, and felt angry when I would feel overwhelmed with the difficulties. I would rather have her here and having a hard time with feeding than the alternative -- I already knew that too well.

We decided to go ahead and have Bridget blessed on the same day that her older sister would be baptized. It was the first of September. I had not liked the idea of doing it in September, thinking about how hard the month was for us with Dominic's crisis event and death being in that month. I tried to tell myself it was just superstitious, and with it being labor day weekend it would give people more time to travel. We tried to make it convenient so more people could join us for the special occasion. Our daughter was baptized and confirmed. Then we went to the bathroom to change Bridget into her blessing dress. For a brief moment, I thought she'd stopped breathing. She was completely limp, and unresponsive, and she seemed to be so pale. But her lips weren't turning blue and I told myself to snap out of it and not scare my older daughter. I did say quietly, "Bridget, are you okay!?" and then she seemed to stir a little. She was still pretty lethargic. I took her back to be blessed, and didn't hear much of what was said because I kept worrying that maybe she was getting dehydrated. It had only been two hours since she nursed, but I was just so worried.

I took her home and nursed her. We had company over and I expressed some of my concerns. Others agreed that there did appear to be some things that could be brought up the next time I saw the doctor. It was going to be in less than a week, so I figured I could be patient. I took her to church for her first time the next day. I stood and bore testimony, and was emotionally overcome. I thought it was because it was exactly six years before that I had held Dominic in my arms and bore testimony, only to have him stop breathing six days later. I took her home after sacrament meeting. We went to Temple Square in the afternoon. She really seemed to have a harder time when it was warmer. She was very tired and lethargic again. I was trying so hard to get her to wake up to nurse. I tried so many things, even putting cold water on her face. She just was too tired. I had my sisters try to help me get her awake enough. They pulled off her socks, pinched at her feet. Eventually she did wake up enough to nurse. But it seemed it took so much for her to do such a simple thing.

Labor day Bridget seemed to have a good span where things seemed to be going pretty well. We even took this picture:


I actually took a lot of pictures that day, but this is probably the one we will use on her headstone. Really, you shouldn't have to use a picture of your child as an infant on a headstone. You really shouldn't have to be choosing a headstone for your child at all.

That Friday, September 7th we took her to the pediatrician. I had a list of concerns. Her weight had increased, up to five pounds fourteen ounces. The home health nurse had weighed her the day before at six pounds even. I was worried about her weight, and the lethargic and floppy times and how tired she was and so many things. The doctor did say her weight was a slow gain, but that it was still acceptable. He'd like to see her gain a little better if we could, but he wasn't worried. He took time to hear my concerns, and over and over again just tried to reassure me that things were fine. He commented about how he understood with the anniversary of Dominic's crisis event and death so close that I might be more sensitive, but he just didn't think things were so bad. He chided about ordering a monitor for her, but that he didn't think it was medically necessary and that it would just be for reassurance.

This is what Bridget looked like that afternoon that he saw her, and I don't know how he didn't see something to worry about:
I actually had hoped that he really did order the monitor, but home health never came with it that night. He had told me to let her sleep longer at night instead of waking her to feed her. I did that, although I did actually try to wake her up a little anyway because I was just too worried. In the morning, I got online and I ordered an angel care monitor from Amazon. I was just too nervous. It was SATURDAY, SEPTEMBER 8TH! I knew that it was irrational to be so worried. The doctor had just told me everything was fine, but I was so nervous. I talked with my mom on the phone, and Bridget cooed a little. Shortly after that, she gave me a big half grin. It was the first time I really believed she smiled at me interactively. She had smiled many times before, and even laughed, but it often seemed to be in her "trance state" or just at random times. I am grateful both Bridget and Dominic smiled for me the day they had their crisis events.

We left for IKEA. We got there and as I took her in, I was angry at a man for smoking in the family parking area. Didn't he think he should have a little more respect for children? I put Bridget in the sling and started nursing her. She had only eaten a couple of hours before, but I was trying to make sure she got as much as she needed. When we got inside the store, a cute lady who worked there saw the sling and came to admire our baby. She saw I was nursing, and then showed me a nursing lounge. I actually had just seen it because I had gone to the bathroom. I had thought it seemed kind of unsanitary to put the nursing lounge right there. And I had noticed a big emergency button on the wall and thought it was unusual. I pretended to think the nursing lounge was a good idea so I wouldn't offend this sweet lady, and then when she left, I continued on into the store to look around.

We had planned on buying beds for Christmas. I'd bought bedding for Bridget, and we needed another bed now that we had a new family member. We were amazed at all the sights in the store. Bridget stopped nursing, so I asked my husband if I should leave my breast exposed in case she woke up and wanted to nurse more, or cover up. Without waiting for an answer, I figured I was covered enough by the sling and that if she would eat more, she needed it. We continued walking around.

Then I checked on her again. Bridget just didn't seem right. I asked my husband if he thought she looked okay. I did this a lot, because I was always so worried about her. He immediately said he didn't think so, and I went into shock at that moment. I asked him to help get her out of the sling, and I don't even remember much after this. I remember wandering, trying to cover up and asking for help. "We need help!" I was trying to decide if I was imagining things or if Bridget was really not breathing. I kept thinking I was making a scene over nothing, embarrassing ourselves because I was somehow confused about Dominic on SATURDAY, SEPTEMBER 8TH. But then I would go to reach the phone and see my husband doing compressions on my baby girl. Something was wrong, right? "We need help!" I saw a man look at me like, "lady, ask someone who works here. If you want to buy a couch or something, they can help you." He didn't say anything, but I thought maybe he was right. Maybe I shouldn't be bothering the customers. Nothing was really wrong, right? Bridget, are you okay? You're okay, right Bridget? Please, Bridget! Be okay! It's okay, right? It's okay!

I just couldn't believe it. I felt like passing out. I couldn't believe it. Someone came and said they knew CPR and started to help and someone called 911 and I kept thinking I was dreaming. It couldn't be real, I don't know how this could be real. Bridget has to be okay. I was thinking that it wasn't the same. I was nursing on the other side. But then I guess I realized I was wrong. Dominic had been nursing on that same side! But it wasn't real. I was imagining it. ESPECIALLY because it was all the same again, I must have fallen asleep on these mattresses in this store and I'm having this terrible dream about Bridget because my mind is still working on processing it all with Dominic. I had had a feeling earlier that morning that I felt was a spiritual impression, though. That she was going to be a special needs child. So I kept telling myself that if it was real that she might have some brain damage, but she was going to be okay. This time I knew CPR wasn't going to work, defibrillators weren't going to work. She needed the medicine. I don't remember too much. There was a policeman and he wouldn't let me be by Bridget, and I didn't understand why. I thought it was okay. They took her to the ambulance, and let me go in the ambulance. They told me some of her stats and I don't remember what they were, but she had a heart rate and I knew it was too low but I was glad she had one. I knew she couldn't breathe by herself, but I decided she was going to be okay now that she had a heartbeat.

We drove to the corner of IKEA in the ambulance. There was a life flight helicopter there. I don't know if any of them helped Dominic. I found out one of them is named Kris. I saw her at the fire station open house and then at the NICU reunion. So now I know she helped take care of Bridget. She let me give her a kiss, but I couldn't go in the helicopter with her. They flew her to the Children's hospital, and then the fire men took us in their fire truck to the hospital. One of the fire men drove our van there for us. He said we were in no condition to drive.

We got to the hospital quickly. The second half of our ride up they ran their lights and sirens, so we could get through game traffic. I guess it must have been a home game at the University that day. But when we got there, we had to wait. And the social worker would come and sit with us and tell us over and over that she was very sick, and I knew they were trying to tell me she was going to die, but I didn't believe it because I knew she was going to be a special needs child. She was going to be okay.

I hated the day that the donor team came to talk to us about organ donation. It was a big misunderstanding. I was yelling at them that they were talking as if Bridget had already died, and then they told me technically she had. I was so angry! The doctor came in and we fought and fought. I was so upset. She was sorry for the way things were explained, because there are different definitions for death, and for organ donation you don't actually die in the way I think of death before they take your organs to give to someone else. It was such a horrible thing to think about. And Bridget wasn't even a candidate for organ donation because of the unknAnd then it was also when I was made very aware that Bridget was too sick. Too much time without oxygen. The only thing keeping her here was machines and medicines. A lot of medicines. And she was still getting sicker anyway.

We still were able to have more tests done to hopefully give us answers. A skin biopsy. A muscle biopsy. The same doctors that had been so sure that Dominic died from botulism were now saying that he died with botulism, but not from botulism. That Bridget and Dominic likely both shared the same underlying genetic problem. Maybe a metabolic problem or mitochondrial disease. Because it affected both a girl and a boy, it would be autosomal recessive. But they didn't have any answers for us.

Bridget died in our arms on the morning of Saturday, September 15, 2007. She didn't even try to take a single breath on her own when they took the machines away. She died very peacefully, but my heart was so shattered. Literally, my mind broke in that hospital, too. A part of me just broke away and stayed at the bedside with Bridget. She is still there, waiting for Bridget to wake up. She has to be okay. Please, Bridget, please! PLEASE! Bridget, don't die!

In Memory of Dominic Angelo

Our fourth child was born 16 April 2001. He was three weeks early, but seemed to be healthy, weighing in at 6 lbs even. We were in the process of having our first home built, my husband had graduated from the University and we were planning to leave behind student housing and start living in the "real world."


When Dominic was about five weeks old, I noticed some orangish spots in his diaper. It worried me, and I called the pediatrician. The nurse told me it was just urinary crystals and common, so nothing to be concerned about. A few days later I just didn't feel things were right. He seemed too tired and too small. They told me I could bring him in and they'd weigh him for me just to reassure me. When we got there, they put him on the scale and he had only gained a few ounces over his birth weight. They asked me if I could stay and meet with a doctor. Of course!

We were told to start giving him some formula in addition to nursing. We'd do weight checks every few days and see how he did.

We moved into our new home. Developmentally Dominic was progressing, although a little slowly. The doctor we saw before we moved was pretty concerned and made sure we were already connected with a good doctor where we were moving. He made me more nervous that he was that concerned because he has always been pretty laid back, even when I was worried.

The doctor in our new town was pleased with the slow progress Dominic making. He felt it was still within the range of normal, although he was still not happy with his weight gain. He had his nurse, a certified lactation consultant, watch me nurse to make sure latch was going well, etc. They told me to use fenugreek, brewer's yeast, pineapple juice, oatmeal, etc. They gave me formula samples, and told me to nurse and then pump every 1.5hrs day and night. Eventually we got a scale from home health to weigh him before and after feeding. He did have reflux, and the formula seemed to make it worse. We just kept trying to help him grow.



For whatever reason, we started using the nickname "Froggy." We lived our lives as if there was nothing really wrong. We went to the zoo, the waterfalls in the moutains, and just loved and adored our little family. It was stressful focusing so much on feeding and not getting the results we thought we should be getting, but he was growing, and he was making progress developmentally.

I took my two year old for an evaluation at early intervention. She was having a hard time learning to talk. While we were there, the team of therapists had their eye on Dominic. They asked me after the meeting if Dominic had been referred for early intervention. I explained that the doctor wasn't really worried except for his slow weight gain. They told me he really should be holding his head up better and that they felt he could benefit from some help in their program. They set up a home nurse appointment for him.

Dominic kept going in again and again for weight checks and follow-up appointments. We were getting exhausted. The doctor would always say he was doing pretty well, but if he wasn't gaining better the next time they would put him in the hospital to do a bunch of tests and see if they could find what was going on. And the next time would come and he would just say the same thing again even if he hadn't gained any weight.

Finally I was just too tired. I wanted to know how to help my son more than anything. He was such a sweet boy. He seemed to always be happy, and just was a very alert and interactive little boy. It broke my heart to see him so skinny, though I admit at times I thought it was so cute how little he was. I told the doctor that I was ready for him to send him to the hospital and do the tests. Suddenly the doctor back-peddled. He started telling me how it would be so invasive and with how small he was it would be really hard on him. That there were so many possibilities of what could be wrong they wouldn't even know where to start. So he suggested we take him to the out patient lab at the Children's hospital and do a couple of things: a sweat-chloride test to rule out Cystic Fibrosis (which all three of his older siblings had had done, so we figure his would be negative like theirs) and a basic blood panel. The CF test was negative, and the panel was mostly normal except one that was elevated relating to the liver that is not uncommon to see elevated in newborns. So the doctor was content to think there was just some mild delay of no significance.

Dominic actually seemed to be turning a corner. He seemed to be getting stronger, doing more, eating better, and even growing a little better. I took him for his 4mth check up and the doctor wrote on his note we brought home "A+" because he was doing so well. Of course we were still tracking his slow weight gain, but he really was so alert and interactive that the doctors felt confident he was just on the low end of the normal range.

The home health nurse from the early intervention came to our house. I pointed out how weird his ribs looked when he breathed. She thought it looked like some sort of anatomy thing where sometimes the ribs are formed a certain way. I don't remember the term now, but she told me to ask the doctor about it the next time he was seen. You can kind of see what I was seeing in this blurry picture of him, where the center of his chest would just suck down in:

The nurse thought he was looking pretty good, too, but that because he was so small that he would likely qualify for services. She set up the "in take" appointment for September 14, 2001.

On Sunday, September 2nd we were at church and Dominic didn't seem to be doing as well. The meetings ended and on the way into the house he vomited all over. This was not just his normal spit up from reflux. He really vomited. I was worried especially because of his low weight. I took him into the on-call doctor. I mentioned the rib thing, and he told me he didn't think he had that. He said he thought he probably just had some viral thing and that we should give him some tylenol until he felt better. Dominic did NOT have a fever. The doctor told us to follow-up with our regular pediatrician in the morning.

So we took Dominic in on the morning of the 3rd. His regular doctor looked him over and thought he looked fine. He told us to come back on Thursday for another weight-check but figured he probably just had a pretty big spit up the day before. Dominic wasn't vomiting anymore so it made sense.

Now this whole week I was extra worried. I felt that I was going to die. I had been having headaches and just felt a sense of doom hovering over me. And so when on a couple of occasions it appeared to me that Dominic had stopped breathing, I thought I was really losing it when I would see that he was in fact breathing after all. I think the way his chest was caving in when he would breathe was actually a sign he was struggling to breathe. I also believe in hindsight he really was having episodes of apnea at that point, and I was just in denial. This happened at least three times.

We took Dominic in on Thursday. He weighed in at 9lbs. 4oz. Not very much for a nearly five month old who weighed 6lbs at birth. But it was still progress for him. The doctor didn't see any reason to do anything different, so it was just the same old same old of bring him back in for more weight checks, etc.

My husband's company had free tickets to an amusement park. We'd let our family know and they all decided to go on the same day. My mom and step-dad were flying in from out of town, and even my step-sister was here with her daughter from out of town. We had been trying to get our sprinklers done, and since all the family would be in town, we asked for help. We ordered a bunch of pizza based on everyone's response and expected to get them done the night before the big amusement park trip. NO ONE SHOWED UP until it was too dark to do anything, but they helped themselves to the pizza anyway. I was so angry! Here we had helped my sister lay sod while I was still bleeding from delivering Dominic, and this was how they respond? We were exhausted trying to help Dominic, and they just didn't even care.

So the next morning SATURDAY, SEPTEMBER 8th, when everyone was planning on leaving for the amusement park, we stayed home and worked on sprinklers. I didn't want to leave until we had them to a point we couldn't work on them anymore. My family was annoyed that we were ruining their plans of everyone going together. So my mom decided she'd come over and watch Dominic for us, and my brother-in-law did come help a little, too. We didn't leave until early in the afternoon. My mom took a few pictures of Dominic with her digital camera before we left. here is the one we used on his headstone:




In hindsight, I resent my mom for taking all kinds of video of her step-grandchild who lives in the same state as her but NONE of Dominic. Call me cold or bitter, but it hurts that she is still alive and that Dominic died and I have NO video of his smiling, sweet face. We took some video of him while he was on life support and dying, but it just isn't the same Dominic that we got to know in his brief life. But I AM forever grateful for these pictures we got of him.

Within hours of that image being captured , it was all different. I was nursing him on a bench in front of the bumper cars. I had already fed him on the one side. I had him covered with a blanket for modesty. My sister was sitting next to me. She had just announced that she was pregnant (the reason she didn't help with sprinklers). So I was asking her whether she thought it would be a boy or girl. She wasn't sure so I told her I bet it's a boy and then Dominic will have a boy cousin close in age, and how cool that would be. I noticed Dominic had dozed off again (not unusual). So I pulled my bra back together under the blanket, tugged my shirt down, took the blanket off. Dominic began to roll down my arm, which is what he'd do, and then he would startle awake. But this time, he didn't startle at all. He just fell limply. His arms fell down and the weight of them falling kind of jerked him. I instantly said "something's wrong with Dominic" while turning to my sister to hand him to her while I called 911. I was in shock, so please don't comment about how I should have never handed him off.

I watched his pale face and noticed his lips were starting to turn blue. My sister handed him to another sister who started mouth to mouth, and the first sister ran to the first aid station. This was just around the corner from the bumper cars. And EMT (I thought it was just a security guard for the longest time) came and took him from my sister and RAN to the first aid station. I followed, running and watching Dominic's limp arms and legs flopping up and down as he ran. They got him to the first aid station and started CPR. They used the defibrillator over and over and the paramedics were on their way. Dominic was still unresponsive... Not breathing, no pulse. Finally the ambulance arrives and they put him in there. They get some medicine in him. They have to drill into his bones in his legs. They let me ride in the front of the ambulance. And then I felt it. And just as I felt that sweet warm feeling run through me, the paramedic told me, "mom, we have a pulse! It's a faint one, but we have a pulse!" I knew Dominic was back. And I had to hope he was going to stay.

They drove to the nearest hospital then life-flighted him to the Children's hospital. The doctors were sure there was a metabolic problem. They even thought they'd pinpointed it to "Barth's Syndrome." They were doing all kinds of genetic testing, and taking DNA from all the family even for a study. Then airplanes were crashing into buildings. The samples spoiled on Fed Ex trucks that couldn't do anything because all the planes were grounded. They did a skin biopsy, then a muscle biopsy. Then they realized that the muscle looked like he had botulism. We hoped and hoped he would get better, but time showed he had been without oxygen too long. They did do a stool sample before he died and blood test which confirmed he did have infant botulism.

On Friday, September 14th, 2001 Dominic died in our arms. It was the national day of mourning. There is so much more to the story but I've already rambled on and on. Our little boy should be eight years old. All the intensive testing and autopsy revealed nothing more than botulism. It was put as his cause of death on his death certificate. We went and met with the genetics doctor to make sure that there wasn't something to be concerned about with our living children, or any future children, and we were reassured it was just a fluke thing. Tomorrow we'll live through another anniversary of our child's death. This time it was Dominic's little sister. She did not have botulism. For six years we believed Dominic died from infant botulism, but now it is all uncertain and unknown. Doctors believe he did die with botulism, as the evidence is clear that he did actually have it, but they do not believe he died from botulism.

I miss you, little froggy. I wish we could go back to before "real life." I can't describe in words how all these experiences have affected me and my family. Even eight years later. We are not over it and we still grieve. I have been so very weak and exhausted all these weeks. I appreciate those who have left comments and come to check the blog, and I'm sorry I just can't keep up with it. I'm just so emotionally drained. It takes so much to post. I am mostly just copy and pasting this from the angel blog I belong to. I want to share my little son with the world, and this is the only way I can now.

Weak

Bridget's 2nd birthday came and went without any notice to the rest of the world. No one called or stopped by to let us know they were thinking of her, or of us. I am grateful to those of you who thought of her in a small act of kindness towards others -- thank you! It was those of you doing those little things that I held close-- to think that at least in someway, she was remembered by this world she spent so little time in.

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Thou wilt keep him in perfect peace, whose mind is stayed on thee: because he trusteth in thee.

Trust ye in the Lord for ever: for in the Lord JEHOVAH is everlasting strength (Isaiah 26:3-4)

I honestly think that something broke when I was in the hospital with Sarai this last time. I don't know how to cope as well anymore. I feel so much more broken than ever. And I am searching for a "perfect peace." My days are difficult, and the night brings no relief as I toss and turn between nightmare after nightmare. Things so grotesque in my mind that I don't even want to recount them.

Words fill my mind, but I cannot grasp onto them. I don't know what to say at all. I want to say it all, but I have nothing at all to say. So I go through each day, going through the motions. Staying on top of things, but at the same time underneath it all. Suffocating.

We tried to go back to church. We went as a family. I was kind of looking forward to it, actually. On some level. But because I was too aware of how even going to that building had taken its toll on me-- with the swelling and hives and physical pain-- I was dreading it.

When we were there, it was like I was in a daze. As if I was present, but not present at all. Fragments of the past were swirled in with fragments of the present. But in no coherent way. It was very difficult. And just as it was time to go, I was caught up in emotion. So overwhelming, because the past became the present as I stood alongside the table. I was helping my husband put the lid on Bridget's casket again. And then I was sobbing. Sobbing because she is gone from my view for the rest of my life! Sobbing! And then the fragments of the present presented themselves. And his loving arms were not around me like they had been on that day.
I was confused. I wasn't sure where I was, or what was really happening. I felt like a very young child. I was still sobbing. I began to feel embarrassed as I realized that there were other people in the room, and that this wasn't all just happening in my mind. I was literally falling apart. Then someone's arms were around me. Someone was whispering something. Indiscernible. Like the words that fill my whole being that I can't get out. I don't know how long this went on. I hope it was only a few seconds. I went back and forth into then and now and then and now. At some point, my husband and children came into the room. I was more aware now, that it was not the day we buried Bridget. And somehow I was able to stay present enough to leave.

I wish I could describe things better. I have no confidence. My strength absent. And I feel somewhat mocked by the simplicity of words I read in the scriptures when all the effort I can muster does not result in peace or strength or comfort or any of those things that would make it all better. And it makes me feel even more that I cannot gain favour with God.

I wish I could make it all better for myself, but I also yearn for other mommies who are learning to live without their child to have relief. To have something to get them through. Today, I went to the angel mommies blog that I belong to. And one of the other mommies shared the comment I had posted on her blog. I had actually been reluctant to post the comment, because I didn't know if I had been able to say what it was my heart was trying to convey to her. I didn't want it to seem I was being condescending or knew something that she didn't already know or... I lack the confidence to know what to say anymore. But I was so grateful to see that she had found the comment to be of use:

I think when our children die, and they progress into the eternities, there is TRULY a piece of us that goes with them. As their mommies, it makes time seem very dysfunctional as more of us than before is a part of a realm where there is no time. And yet, our mortal beings are captive to time. It is a sort of bondage, but in some ways it is voluntary. So we ache. We literally, physically ache as time passes and we cannot reach out and touch our little ones any longer. I think that if people could understand this better, they could understand how losing a child is very different than other losses they may be more familiar with (like a dear grandparent, for example). Grief has similar overlaps in all loss cycles, but there is an element of losing a child that is not a part of any other kind of loss cycle.

I'm sorry that Gavin is 366 days behind us. :( And yet I am also comforted that he is in the eternity around us! If only we could FULLY pierce through time, and sense the eternities in WHOLE, we would see that without time, there is no past or future or present. That our little ones have never left us. It really is only time that separates us. Mortal time. Sigh... and everyone thinks it helps to tell us that TIME heals. What an unfortunate misunderstanding. Time standing in the way...

I hope you have caught your breath today. Perhaps, I think, for the rest of our lives, we will have moments like that. Of missing. Missing so intensely and so deeply and... I wish I had something of comfort more to say. I have this terrible habit of rambling incoherently, so know I meant well.

I wish sometimes to collapse into that hole in the fabric of time. I want to collapse into it, and yet I feel such a tug in time to be here for the family that is here.

September is fast approaching. Already the air is beginning to change as the seasons prepare to turn over. The sun is shifting into another path in the sky. It will be eight years since I held Dominic in my arms. Two years since holding Bridget. And it is still not enough time to heal. But then, I don't expect time to heal. As I wrote on my blog years ago, even before Bridget was a part of our family, when my heart was only heavy with the grief of one child's death:

There are so many euphemisms. Sometimes I begin to believe that time will heal. That life goes on. There is some comfort and some truth in these words at times.

...Intensity weakens. That is true. Time is what robbed me, and it has never healed me. Softening comes with recognition that expectations won't be met. That time is only a lower law, preparatory, that will be swallowed up in eternity. Father Time has his seasons, but The Father is endless.

Bridget's 2nd Birthday

Two years ago...
Bridget Lucille was born. Just didn't imagine she wouldn't be here right now. :( We have a few things planned today. We will go as a family to the Oquirrh Mountain Temple Open House.

We took Bridget to Temple Square six days before her crisis event. We went back the day she died, just as we had done the day Dominic died.

"...to the Latter-day Saints a temple is more than chapel, church, tabernacle, or cathedral; it is no place of common assembly even for purposes of congregational worship, but an eedifice sacred to the ordinances of the Holy Priesthood--distinctively and essentially a House of the Lord." (Jamses E. Talmage, "Jesus the Christ", p. 717-18)

Just as some of life's sweetest joys can come through family associations, the loss of a beloved family member can be a source of our deepest sorrows. But death does not need to be the end of our relationships with cherished loved ones. The Lord revealed... that the "same sociality which exists among us here will exist among us there [in eternity], only it will be coupled with eternal glory." (Doctrine & Covenants 130:2)

It's just the waiting through time to get to the eternities... :( I really miss you, my beautiful bright-eyes Bridget!

Happy Birthday, Bridget!

Small

...simple acts of service can help us and those we are permitted to influence. Our Heavenly Father places loving individuals on important crossroads to help us so that we are not left alone to grope in the dark. ...Serving others need not come from spectacular events. Often it is the simple daily act that gives comfort, uplifts, encourages, sustains, and brings a smile to others. (Michael J. Teh, “Out of Small Things,” Ensign, Nov 2007, 35–37)

Bridget's birthday is on Saturday- she would have been turning two. I have a hard time with what was supposed to be a celebration of life being a reminder that she is not here. But I want to do something for her. She was just so small, and some may not think that she had much influence. How could something so small be important? Just after she died, a Conference address was given called "Out of Small Things," quoted above.

The words spoken then have been in my mind frequently since that time. I wonder how many of you would be willing to give her a gift. This week, find some small way to show service to someone IN your life. Do something WITH someone who needs you. Find someone in your day-to-day associations WITH each other. Please, no big fanfare! Think of Bridget, how very SMALL she was. Make your acts small, yet profound-just like she was! Then come back and let me know how you gave "Out of Small Things."

If you'd rather keep your service private, that is fine, too. Just DO something. And if you would, please remember Bridget when you do it. This is just meant as way to share how Bridget influenced you and give her a special kind of gift for her birthday. I really do understand if you might want to keep your acts private, so while I'd love to hear about your experience, the main thing is to just do some small thing-- which will have a much greater influence than you might ever know.

Back

It is difficult. My mind goes back over things. My mind tries to find answers to make sense of things. My mind tries to have confidence that we'll somehow be able to get through all those things yet to come. And my mind wonders just what those things are. So much races back and forth through my mind as I struggle to just endure.

Behold, we count them happy which endure. Ye have heard of the patience of Job, and have seen the end of the Lord; that the Lord is very pitiful, and of tender mercy.
~James 5: 11

But I find it so difficult without answers. My heart has been so heavy with grief. I miss my little ones terribly. I've thought especially about Bridget with her birthday coming up, and thinking back to the weeks before her birth and how uncertain things were then. But I just never really expected that she wouldn't be here. And the grief is so heavy, but not knowing why she died. Not knowing why Dominic died. It just leaves too much open. Too many questions, and wondering since we can't bring them back, how do we go forward so that the rest of us can be okay?

"Waiting is worse than knowing. Grief rends the heart cleanly, that it may begin to heal; waiting shreds the spirit."
~Morgan Llywelyn

Two weeks ago we were in the hospital with our youngest getting a feeding tube. After more than a month of being sick, she is finally seeming to kick the illness. We continue to have low heart rates alarms at night, and she is still not back to eating like she did before. She is still getting feedings through the tube at night. We have orders for a few more specialists to follow-up with, and it still seems quite unsettled here.

Two years ago I was going to the hospital for non-stress tests on the baby I was carrying. I wasn't due for more than a month, but the way things looked I wouldn't be carrying the baby much longer. My body just seemed so unsettled. July 18th is the day she was born.

Yesterday's date had me thinking about her crisis event, and how everything was so very unsettled. 07-08-09 ... 09-08-07. Going forward, going back, going forward, going back... The questions came back to my mind. Would she pull through? Was that feeling I'd had earlier in the morning, that very deep impression been to reassure me that she would indeed live, yet would not be whole again? September 15th is the day she died.

It is odd how these reminders come. I can be going forward, and then, unexpectedly, there are those things that make me go back in time. Like I'm there in that moment again. Back and forth. Going forward, going back.

Our city just opened a new fire station that will serve our neighborhood. They had an open house, and the kids seemed interested. I was reluctant to go. I have a hard time still seeing fire trucks and ambulances. The fire truck had driven us to the hospital after Bridget was flown there, as they pointed out, we were "in no shape to drive." I was so grateful for those heroes, but it was just so hard to have the triggers. Like it's been so hard to have the triggers every time I nurse Sarai. And yet, here I am, more than a year out and I've been able to make it this far. It's been a real struggle though. And I argued with myself back and forth, forward and back, about whether it would be okay to take the kids over to the fire station.



I decided to face it. I would have the advantage of being prepared in advance. I would not be caught off guard. We drove over. There were two ambulances parked on the side of the road. Two, like two of my children who had died. I saw a yellow firetruck in front of them. The fire truck we rode in had been red. Then I noticed the fire station itself. Parked in front was a red truck, and they had all the fire fighters posed in front of it for a picture. We waited for the photographers to be finished, then went inside. We noticed the hose they had cut for the "hose cutting" ceremony. And then I saw two women wearing life flight uniforms. I went back. Back in time. I was there in the parking lot at IKEA. I saw my little girl on a gurney, and they were putting a big soft blanket on her. "That blanket looks so soft. I didn't think they had blankets like that for helicopters. That is so nice of them to have soft blankets for Bridget. I think they'll take good care of her. I wish I could go with her. I hope she is going to be okay. She's going to be okay! It's okay! It's OKAY!!! It's NOT OKAY!!!!"

Flashback. I was there, but I'm really here. HERE. Back and forth, forward and back. Back and forward. I looked at her again, and this time I stayed in the present. I wasn't sure if she was really the doctor, or if her uniform had just triggered the flashback. I wasn't sure if I should talk to her. She seemed to catch my eye, and I wanted her to know if she had taken care of Bridget that I was so grateful. I asked her how long she'd been working on life flight. She said it's been nearly twenty years. I told her we'd had a baby life flighted, and I wonder if she had been there. I just said she was flown from IKEA. That was all she needed. She quickly said, "YES! Oh, how are you guys doing?" She was genuinely concerned, and stood and gave me a hug. She saw Sarai and commented about us having another one. I asked for her name, though I wasn't sure I'd remember. Chris. Chris was the life flight doctor who cared for Bridget, along with her team.


As we walked away, we went toward the back where the cakes were. Then I saw it. The life flight helicopter. How was I caught off guard again? If there were life flight people there, why not the helicopter. "Give her a kiss, mom!" Bridget, you have to be okay. I wish I could come with you sweetie! Oh, please be okay. PLEASE!!


Back and forth. Forward, and back... back again in the present. Eventually the kids wanted to see the helicopter. I told them that Bridget likely rode in that helicopter, or one like it. I was surprised by the question, "why?" They weren't there when she had her crisis event. I guess no one told them that Bridget had been flown to the hospital in such critical condition. I answered quickly, "remember, when she stopped breathing? She had to go to the hospital and the helicopter came to take her there." They wanted to see the helicopter in person. They wanted to go inside. And I hesitated, but went forward.

It seemed so odd to watch my healthy children playing so happily inside this vehicle where my little ones had once been cared for when they lay unconscious, never to wake up in mortality again. So naive. And I wished, wished I could go back to being so naive.

I have had a lot of terrible dreams again lately. I had been having them still, but not so many in the intensity they've come these past couple of weeks. I've really struggled. I think about Bridget a lot. Her birthday is coming up, and these days are the days of the year she was born that we were so concerned and wondering how things would turn out, but never really expecting that we would have anything but a healthy baby to grow into a child and then adult in the years to come. Sure, there might be a few issues from a premature delivery, but they would likely be very minor. And they seemed to be. Until that day. That Saturday. That Saturday, September 8th. Just like Dominic.

I hate the feeding tube. It reminds me of being back in the hospital with Bridget. The frustrations of the NICU where they insisted that she should not breastfeed and simply because of protocol, they put a tube down her nose when I had insisted that they let her be. I was so angry. So upset that they could disregard my instructions as her mother. They did remove the tube when they could see that she was indeed nursing well. Even the night shift nurse complimented me by telling me in all her years as a nurse she had never seen a baby and mother so naturally, comfortably nursing. Yet there were so many things that went wrong in that NICU. So many things that compounded against my little Bridget. She had been making great progress, going forward to our goal of taking her home. And then she became so weak. So many steps back. They put the feeding tube back in. Put her in the isolette. Told me not to hold her so she could get stronger. So many things there.

And this feeding tube today takes me back. Back to after Bridget had been discharged. We took her in to see the pediatrician for a weight check. It had been a week, and she had not gained any weight at all! She hadn't lost any, but in a full week, Bridget had stayed the same weight. He was concerned, and of course we were as well. He talked about a feeding tube, and I told him I felt confident that I could do that at home as we had done it with our son. But I wondered if we could try oral feeding a little longer, or if we needed to rush to the feeding tube. He thought we could wait a couple more days, alter her feedings and see how she did. When we brought her back in those couple days later, she had indeed gained weight, and the feeding tube idea was left behind.

But the feeding tube came up again. The day before her crisis event. Bridget had seemed so weak. I was so concerned. So worried. The doctor wasn't. I was telling him all the things that seemed to be wrong. I was worried about her "overbite" that seemed to be getting worse. It was like she was so weak she couldn't even keep her jaw up. I asked him if her small jaw could be the reason she was such a weak nurser. He told us the medical term for her small jaw, "micrognathia." He wasn't really worried though. He did agree that it could potentially make eating or breathing more difficult. But he cited her weight gain (though also conceded her weight gain had been minimal) as proof that she was not impaired in this way. I argued that her breathing was concerning me, so shallow at times that I wasn't even sure if she was breathing. He seemed to be so annoyed with how insistent I was at her condition being so concerning, when he was quite certain that there was nothing wrong beyond a mother whose grief over a child who had died during this time of year letting her paranoia get the best of her. He chided about how we could put her in the hospital and do extensive, intrusive testing, but that of course, that would just put a lot of physiological stress on Bridget and wouldn't we want to avoid that? He ordered a swallow study to be done outpatient, though. I asked what they would do if her jaw indeed did cause issues with her breathing. He told me that sometimes they would put a feeding tube down. Not necessarily for feeding, although you could use it for that as well. But that way it would push the tongue forward a little bit to keep the airway a little more open.

I left his office. There was a lot more that went on that day. He seemed annoyed, and yet was courteous in taking the time to try to quell what he thought was my over-sensitivity. And these last couple of weeks, and this time of year. Well, back then he thought it was just the time of year, didn't he? My mind has been so injured so as not to be able to have confidence anymore. I struggle to know-- is everything okay? Or are things going to get worse and worse and worse? Questions with much greater intensity now than the same questions back then. Back and forth. Forward? Or Back?

I don't know what is going to happen in the future. I am plagued with the grief of my two little ones, but so much more. The not knowing that shreds my spirit. The repetitions of such a difficult moment-- what was supposed to be such a very close, intimate moment, the most intimate bond between mother and child. While breastfeeding. The crisis event. Not once. Twice! Same day. Saturday. Both times! Saturday, September 8th. The dates, the day synchronized? Both at the same breast. The intensity of it all seared into my soul, and how significant the numbers suddenly seem. And how I have to fight to press forward, carry on, while all that has happened in the past holds me back, takes me back as if I am there witnessing it all again, wondering if I'll be witnessing it all again, and in my dreams witnessing it all again and seeing so much worse.

I just wish instead of typing these words, recounting these things. I wish for being naive. If I could only be planning her birthday party, and worrying about finding the right gift for her... so many of those little things, too, that I miss. It is the missing her. The missing Dominic that is the grieving. And there is the frightening depths of despair from the horrors of it all that even those who understand the grief seem to not even understand. Wanting to go back. But trying to go forward.

There is so much I want to take back, too. So many things. The "what ifs" that I know you are not supposed to consider, because none of it can change things now. And yet, I wonder if I will ever get Dominic back. Wonder if I'll have Bridget back again. If I have somehow lost favor with God enough that he would curse me in this life so much, that there is no hope for a future. And I have to go back to my teacher Job. Who was tormented, but was loved by God. And I have to keep fighting to carry on. To press forward, so that I can go back.

Though he slay me, yet will I trust in him: but I will maintain mine own ways before him. He also shall be my salvation
~Job 13: 15-16