CONFESSIONS OF A MOM

During the eight days Lion was with us, we were so very blessed in many ways. One of those blessing were the NICU nurses we were privileged to work with. We had incredible NICU nurses. We couldn’t have picked better ones. They even said that for some reason they did something different with their schedules that week which ended up making it possible for us to have to same nurses for the four days we were in the hospital.

They were kind, compassionate, and loved Lion as much as we did. In fact, when he first opened his eyes, the nurse had a hard time giving Lion up so we could see him. They were fighting over who would get to hold him and have the time with him. They said it’s not very often they are fighting over babies in the nursery, but they fought over Lion.

I have to laugh at that because Tigger got kicked out of the nursery with the excuse that he needed more “mommy time.” When I told the nurses that, they laughed and admitted that’s what’s said when they’ve done all they can and the baby won’t calm down. So I’ve had one child kicked out of the nursery and the other one they didn’t want to let go.

Our families stepped up in ways I would have never thought of. Tigger had cousins to play with every day. Grandma took him at night. Of course in those two weeks, he outgrew everything I had sent with him. People made sure he had clothes that fit. Dinners were brought in by friends and family. Countless prayers were said in our behalf by those near and far. Our names were places on the prayer rolls of temples in four temples that I know about. Cards, flowers, and other things arrived on a daily basis. Family came from out of state and out of the country. It was truly humbling to be on the receiving end of so much love and service.

We cannot thank everyone enough for the support. I never could have imagined nor had I ever planned on leaning on others as much as I did, but I am eternally grateful for everyone. It’s amazing what one learns when one has to depend on others. It taught me a whole new meaning to , “comfort those who stand in need of comfort,” and “mourn with those that mourn.” What a lesson learned. We can’t do it on our own. We need to let others help. For once in my life I let others help fill the gaps that I knew I wouldn’t be able to fill and was extremely blessed by it. I couldn’t have, we couldn’t have made it through without the support of others.

Don’t be afraid to allow others to serve you. I know that I have a very difficult time doing that. After all, I don’t need to inconvenience others or I can do it on my own. I don’t need help. I have learned that it isn’t an inconvenience and I can’t do it on my own. People do what they do out of love (whether that love is there in the beginning or at the end, it still happens.) Don’t deny them the opportunity. I’m saying that as much to myself as I am suggesting it to others. 

“When ye are in the service of your fellow beings, ye are only in the service of your God.”

How true that is.

CONFESSIONS OF A MOM

I need to go back to the hospital really quick. There are two things I forgot. When the nurses told me Lion had a cleft lip and palate, before I even saw him, I have to admit that one of the first thoughts that ran through my head was worry about how he looked. I worried about how Tigger would react to seeing Lion. Having worked enough with young children, I knew that Tigger could very likely be afraid of Lion or shy away from him because of how he looked. The minute that thought crossed my mind though, I felt bad for even thinking it.

Tigger was able to see Lion for the first time that evening. (Lion was born at 2:41 a.m.) Family member brought him down and Hubby stayed with Lion in the nursery while I was in the hall with Tigger. Hubby held Lion up to the window with the help of his NICU nurse—who held all the tubbing and wires. Grandpa let Tigger stand on his knee I think it was.

I couldn’t see Tigger’s reaction, but both Hubby and Lion’s nurse that Tigger didn’t look scared or afraid. Instead, he looked incredibly worried and concerned for Lion. When I think about that now it brings tears to my eyes that Tigger’s heart was so touched by his brother.

Anyway, I felt like I should touch on those two things before I talk about the five, precious days we had together as a family. Of course the day we brought Lion home, it was freezing cold and raining. Someone said that the weather was such so that Lion could experience all that he could while he was here. I hadn’t thought of it that way, but it gave me a more positive spin on it.

We had a very quiet first day home. Hubby, Lion, and I ended up falling asleep together for a little while. We had Lion’s Hospice nurse come by, and while she was there we he stopped breathing a couple of times. I thought Lion was going to return home before we could get Tigger home with us. Thankfully, he stuck around. We got several good family pictures and moved forward.

I didn’t sleep hardly at all that night. I was afraid of waking up to find him gone. It was like that most of that week. However, we did fall into a routine. Our family was amazing in helping us have the time we needed to take care of Lion, while making sure Tigger had cousins to play with. We had a few nights with just Hubby, Lion and me, then when we felt we had figured out how to make things happen, we gave Tigger the choice sleeping at Grandma’s or coming home. He chose to sleep at home.

Some of my most precious moments happened in those two evening when we had everyone home. Tigger wanted to play with Hubby while I sat on the couch holding Lion. Tigger wanted to help in every way he could with Lion, and we let him to a certain extent. Tigger helped pick out the clothes Lion would wear and was fascinated with his hands. Things we going really well, minus the fact that I was always worried when he would stop breathing if he’d ever begin again. In fact, Lion’s Hospice nurse came on Thursday and said he was looking and doing wonderfully well.

Then it all went downhill. At Lion’s midnight feeding, he ended up throwing everything and then some up. From that point on, it sounds like he was choking on his own spit. We called everyone, and they all said there was nothing really to be done. We tried everything we could think of. He stopped breathing more frequently. The Hospice nurse came and spend several hours with us. The only thing she could say is that it was normal. He could do this for weeks or months. I was beside myself. The only thing we could do was continue forward.

Friday evening, we were getting Tigger ready for bed and I was feeding Lion when he stopped breathing. I waited and waited for him to take another breath. Thirty seconds turned into a minute which turned into two. Then three. The four. His little chest didn’t rise and I thought he was gone.

As I tried to keep things in check so I wouldn’t scare Tigger, I told Hubby I thought Lion had gone home when he took a shallow breath, then another. I called my parents and asked them to come get Tigger, wondering how much more I could handle. They immediately picked him up after he was able to give Lion a kiss on the head.

Hubby and I knew there wasn’t much time left with Lion. I wasn’t ready to let go. I didn’t want him to go. Somewhere deep down I knew that it was for the best, but I didn’t want to let go. So we did the only thing that we could do. I held him and rocked him while the both of us sung hymns and children’s hymns together. It was during that time that he returned home to his Father in Heaven. 

Confessions Of A Mom

One thing I forgot to mention last week. In addition to not gaining weight the last month, we also had low embryonic fluid. My OB kept a very close eye on us, and when he said that Lion would do better in the outside world rather than in, we were scheduled for an induction.

Once Lion slipped into the world, the nurse said, “Did you know your baby has a cleft lip and palate?” I shook my head, feeling very . . . I’m not sure of the word. Dazed comes to mind, but that doesn’t quite describe the feeling. (At this point, I had been awake for almost 24 hours. Not to mention labor and delivery.) I waited and waited to here Lion cry. My heart pounded as I worried. It took longer than I would have liked, but Lion finally cried. 

The nurses took him over to their little table to take his measurements. Then they left him there. His little arms and legs were moving. He was crying, and my heart was breaking. I wanted to tell Hubby to get over there, but I could tell he was feeling as confused or dazed or whatever the word is as I was. Later Hubby said he was extremely worried about Lion.

Finally, they wrapped Lion up and placed him in my arms. He turned his little head and looked right at me as if to say, “I’m here, Mom.” Those who know newborns know that that doesn’t happen. They don’t/can’t really focus on anything that young, but there was no question he was looking at me.

What a precious child I held in my arms. A child I didn’t know how to care for. So, while rubbing his forehead I began to ask questions of how to feed and take care of him. I honestly don’t remember the answer, but it didn’t take the nurses long to take him back and admitted him into the NICU. (I didn’t know that’s what they had done. Hubby was there when they admitted him for low blood sugar. I didn’t find out for a few more hours.)

Hubby and I then got a couple hours of sleep before they had me move from labor and delivery to recovery. Within another two hours, the doctors and specialists began coming in. We were told that in addition to the cleft lip and palate, Lion’s heart was on the wrong side and he was tachypnea or rapid breathing. We had a pediatric doctor come tell us what they thought was going on, meaning the possibility of trisomy 13 or 18 but they wouldn’t know for sure until blood work was done and that his heart was on the correct side, just way up in the corner making it seem like it was on the wrong side.

While waiting for the test results to come back, we met with a pediatric plastic surgeon to go over the process of repairing the cleft lip and palate, a speech pathologist to help us learn how to feed Lion in the interim, there was an ECHO of his heart taken, and a brain scan. Then once the results came back positive for trisomy 13, the doctors came for different reasons. What our options were for surgeries if Lion decided to stick around for a while. The do not resuscitate order. Life expectancy. Whether or not we’d like Hospice to become involved, etc. etc.

We made the decision to take Lion home. We stayed for in the hospital for four days—

1. birth & not knowing
2. knowing the results and making decisions
3. watching and learning how to care for Lion (changing a feeding tube, how to use a feeding machine, what to watch for in his breathing, i.e. what to do if he turns a grayish-blue which he did, monitoring oxygen levels, etc)
4. caring for him on our own with the NICU nurses across the hall

In that time, we gathered the family that was in town and gave Lion a name and a blessing in the hospital. What a sweet moment that was. Then we got ready to go home.

Confession Of A Mom

The last couple of weeks, I’ve been reliving the few days we had Lion at home with us and his return home. Not that I would or could change anything but I think it’s normal to ask questions. Is there something I missed? Could I have done things differently? Did I do the best that I could? What if . . . Although, that’s a very dangerous question.

So, to truly understand where and how my brain has made some conclusions, it’s time to write Lion’s whole story. I’m not going to be able to tell it all in one shot. It would be too long of a post, but over the next few weeks his story will come out as well as some of the other things running through my head in relation to Tigger and Lion and life.

Lion was born with trisomy 13 also known as Patau Syndrome. Once people hear that, it seems the next question is, “Did you know?” In our case, we did not which I’m learning is rare. Most babies with trisomy 13 or 18 are diagnosed in utero. If they make it to birth, the mortality rate is very high within the first few hours or so. The more I learn the more I know what a miracle it was that we were able to take Lion home. 

Now, I’m not a researcher. That’s not how I deal with things. There is still a lot I don’t know about trisomy 13 other than it’s a chromosomal disorder. Hubby on the other hand is. He would be able to give a lot more details than I can, but that’s not really important right now. At the moment I feel I need to address the question that’s usually asked. “You didn’t know?” meaning, in my opinion, how could you not know. 

I had a very normal pregnancy with Lion. There was really no indication that anything was wrong. Apparently there’s a test that was offered and we turned it down. That’s supposed to happen with every pregnancy but I honestly don’t remember being offered the test.

We never saw his cleft lip or palate because after we found out we were having a boy, we never saw his face again. Lion preferred to keep his face tucked away. Funny thing is, the last time we did see his face, I remember my OB saying Lion didn’t appear to be Downs (which is another form of trisomy). 

The only indication that anything was amiss was the last month, Lion stopped gaining weight. The last couple of weeks, I remember him not moving as much either. It worried me, but the doctor didn’t seem overly concerned so I put it aside, only I knew it was time for him to come soon. We were then scheduled for an induction in the early part of February.

Those who have had inductions know that there is a possibility that you won’t get in at the time you’re scheduled because the hospital didn’t have room. That turned out to be our case that day. We were scheduled for 9 a.m. and didn’t get in until almost 6 p.m. The longer we waited the more anxious I became because I knew Lion needed to get here. He wasn’t moving like he had and that scared me. Thankfully, we got in that day. If we hadn’t, I would have lied. Hubby would have taken me to the hospital and I would have told them I stopped feeling the baby move.

It took awhile for things to get started, but once they did, my labor was short in comparison to Tigger (pushing hard for over two hours compared to pushing twice). That’s when all the fun and learning began.