About Me

We found out at our 20 week ultrasound that our baby boy would be born with a cleft. This is his story.

Wednesday, May 25, 2011

Birth Story

He's here!! Dallin has made his entrance into this world. And we have already seen so many blessings!

My water broke early Sunday morning and we headed to the hospital. The labor was long and stressful- Dallin was showing signs of stress with each contraction. There was a moment when they thought they'd have to do a C-section for sure. But he hung in there and before I knew it, he was here!

There was a split second in all the mayhem of getting ready to deliver where I realized that 5 months of waiting and wondering were about to come to an end. I had been so worried all day about getting Dallin here safely, I had almost forgotten about all the other things we have been concerned about this whole time. I realized in that moment that I didn't care how he came here, just as long as he was healthy.

As soon as Dallin's head emerged, we discovered why he had been stressed during the whole labor- the cord was wrapped around his neck three times! What a trooper for hanging in there. Who knows how long that has been there and how long he's been stressed.

Then I heard my doctor say, "The palate is intact! It's only a cleft lip." Greg and I looked at each other and started crying. We couldn't even believe the miracle! And his cleft lip is so small. We have been praying for months (and I know a lot of other people have been praying, too) that his cleft would be minimal, and that if possible, it wouldn't involve his palate. We were praying for a big miracle, and we knew it. We were filled with so much gratitude to witness this miracle!! We are still so overwhelmed with this blessing.

As I held him in my arms for the first time, I felt so much joy and peace. I thought to myself, what have I even been worried about this whole time? He is so perfect.

Another amazing blessing that we were not prepared for- Dallin is a champion at breastfeeding! As soon as we found out there was no palate involvement, I asked if I could try to nurse. I was thrilled when it worked! Dallin formed a great latch, even with his cleft, and has been nursing great ever since. Wow.

Our hospital stay was wonderful. We loved having family visit us and meet sweet baby Dallin. I loved having a never ending supply of cranberry-apple juice and snacks:) We loved cuddling our sweet baby and getting to know him. Dallin had to stay in the NICU for 24 hours to get his blood sugar up. But he seriously was such a trooper! He is such a calm baby and let them poke him over and over again, without hardly a sound. We were so happy when he was released! And even more happy when he got to come home with us! Dallin has exceeded everyone's expectations. His cleft has proven to be hardly a problem at all.

We're not sure what's going on with his kidneys yet- we'll go in for an ultrasound in about a week to get them checked. I almost feel ungrateful praying for yet another miracle, but we're hoping that the hydronephrosis is gone. Or at least easily repaired.

We've also set up a consult with the craniofacial clinic at Primary Children's for next Wednesday. We'll be meeting with the surgeon and discussing when his surgery will be. I almost don't want to get his cleft fixed! I seriously love him just the way he is. It will sure be bittersweet to "fix" his already beautiful smile.

Well, today is my "due date" and I am so thrilled that I am snuggling with my baby right now. All those months and months of worrying have been replaced by so much joy and love. We feel so very blessed to have sweet Dallin in our home! We are so grateful for his health!

Enjoy the pictures!

Although it looks like he's screaming, he wasn't crying at all! I had to keep asking if he was okay because he wasn't crying!

6 lbs- so tiny!!

Wednesday, May 18, 2011

OK baby, ready when you are!

Well, I am 39 weeks pregnant! The countdown to the baby getting here is no longer in weeks, but in days. And for the first time in this whole pregnancy, I feel ready for him to get here!

In the past few weeks that we have been home from our vacation, we have been in "get ready for baby" mode. I had a to-do list about a mile long, and everything is FINALLY checked off. I got my haircut, went to the eye doctor, and finished (kinda) my last day of work. We planted our garden, cleaned the cars, and went to the temple (I really should have borrowed a bigger dress!). We bought some new clothes and newborn size diapers for the baby, set up his bassinet, swing, and bouncer, and organized his dresser. I made some extra dinners and froze them for future use. I've sent birthday cards, graduation cards, and wedding gifts- all things happening the end of May, which is a very unpredictable time for us. We even renewed our temple recommends, which expired the end of May. The baby's car seat is out (not in the car yet, but at least it's out of the box!), my hospital bag is somewhat packed and I am, as of today, officially registered for my stay in the hospital.

I also feel completely emotionally ready for our baby. I feel so much peace about the "problems" that he has. I haven't worried about his cleft or kidneys for weeks. I know that whatever happens, we'll be able to handle it. I feel so grateful that we will be able to have this little boy in our arms and in our home, healthy. However he comes to us, I am okay with that. His spirit in our home will be such a blessing.

So now there is nothing left to do but wait. I am *trying* to be patient and relax and enjoy these last few days of just me and and my busy toddler. But I am getting sooooooo excited to hold this little newborn in my arms!

Baby, we are ready for ya!!

Monday, May 9, 2011

37 weeks

I had a doctor's appt today, and it was like the best doctor appt ever!!! I'm not even sure exactly why, because nothing has changed with our baby, but I just left feeling so happy and positive. It feels good to feel that way!

I first met with my doctor and he said, "By the looks of your last ultrasound, your due date is June 5th." "Oh, heck no!" I told him. My due date is May 25th! He laughed at my reaction and told me he wasn't changing my due date, but that's just what I was measuring at. Phew! I almost freaked out for a moment:)

My doctor was worried because I was only measuring at 33-34 weeks. How could that be? I am definitely bigger now than I was at 34 weeks! But he wanted to do an ultrasound just to be sure the baby was growing okay. I love ultrasounds and getting to see my cute baby!! But they always make me a little nervous, too. I'm scared of what they might find.

Kathy, my favorite ultrasound tech, had an opening in her schedule so I was able to get right in. The ultrasound was awesome! The baby is measuring great, still on the small side but nothing to be worried about. His kidneys are still dilated, but what else is new? She assured me that, most likely, his kidneys will end up not being a big deal at all. Hydronephrosis in utero is the most common anomoly found on ultrasounds, and half of the cases end up resolving on their own after birth. Of the remaining half, 64 % are caused by a blockage of some kind, which is easily repaired. I can handle those odds. We got a couple more ADORABLE pictures of his little face!! From the pictures, his cleft looks really small, which is great! Kathy said that since January, she has found 7 cleft lips on ultrasounds!! 7!! In one office! What in the world is in Logan's water?! She also said that my baby's was the most minor cleft she's seen out of them all. That made me very grateful. We spent a few minutes just watching my baby move all over. He LOVES to move, and does it all the time. I love being able to see him move and feel him at the same time. Kathy said, "This is one happy baby!"

My doctor came in after the ultrasound to check on how things went. Kathy told him that my baby looked fantastic! My doctor was thrilled about his growth and everything else. For the first time in awhile, I left the office feeling good about things. The doctor was happy, the ultrasound tech was happy, I was happy. I love when they have positive things to say and are happy with how my baby is doing. This appt was just what I needed to get me through the next few weeks. My baby is healthy! And he is adorable! Everything is going to be okay.

(Sorry, these pics aren't the best. They're just pictures of the pictures, since I'm too lazy to scan them)

*Cute little nose!!*

*I LOVE this squinty face picture!! And his cute little hand by his face!*

My day got even better. My father in law called me and asked me if I had a breast pump. We both kind of laughed, because that's a weird thing to talk to your father in law about:) There is a wonderful woman that he works with who has always given us hand me downs for our toddler- and they are stinkin' cute clothes! We've just loved her and how willing she is to just give us her stuff.

Anyway, my father in law was talking to her about our baby's situation. Her youngest baby was born with a lot of problems and ended up being in the NICU for awhile. I got on the phone with her and she asked me if I had a nice electric breast pump. I don't; mine is just a little handheld one. She said, "You're going to need a hospital grade electric pump for this baby, since you won't be able to nurse. I have one that you can have." Tears came to my eyes (again! I'm always so teary lately!).

I have been doing research and talking to my doctor about what kind of pump I'll need with this baby. Some insurances will pay for you to rent a pump if your baby has special needs, but my doctor said my insurance company is kind of hard to work with. I have been stressing about it for awhile now, wondering what we'd have to do. Without the help of insurance, it can be pretty expensive to rent a pump.

And then all of the sudden, another blessing is given to us. I couldn't believe it! I told her that I know how expensive they are and that I would love to pay for it. She replied, "No, I've had a NICU baby and I know all about hospital bills. You don't need one other thing to worry about. It's already paid for so I'm not worried about it. Just use it to take care of your baby." I thanked her about a million times.

In Sunday School, we were reading about miracles. There was a man who was blind from birth. "And his disciples asked him, saying, Master, who did sin, this man, or his parents, that he was born blind?

Jesus answered, Neither hath this man sinned, nor his parents: but that the works of God should be made manifest in him." (John 9:2-3)

I am absolutely amazed how much we have seen the works of God already in this situation. I know He is watching over us and blessing us.


We have been on an insurance roller coaster these last few days.

My husband is quitting his job at the end of the summer so that he can attend school for his masters degree. After my ultrasound last week, he thought he should call the school's insurance to make sure they would cover our baby. He just wanted to check, because we thought, why wouldn't they? We were very shocked when the guy told us that they do not cover congenital anomolies that are not life threatening. He said our baby's surgical repairs were cosmetic, and therefore, not covered. Um, yah right! HE should try eating, speaking, and living everyday life with a hole in is face and mouth. NOT cosmetic.

So we started looking into other options, which looked overwhelmingly costly. Most private insurances were turning us down, saying they would not cover our baby. Some insurances said they would cover him, but they add ridiculous fees since they knew our baby would cost so much. This was estimated to be around 1000 dollars a month. AS IF college students without a job could afford that! Medicaid told us there was "no way" we would be covered because we are not impoverished. Yes, we have money in savings so that when we don't have a job,we have money to live off of. Apparently we should have been irresponsible, not saved our money, and THEN we could be on Medicaid. That makes plenty of sense. The final option was COBRA, which allows us to stay on the same insurance we have with my husband's company now, except he'd have to make up the difference for what the company is now paying. Turns out, that's a lot. $1100 a month. Things were looking really grim.

I was feeling so overwhelmed. I felt like we had done everything in our power to prepare ourselves financially to go to school. And within an instant, everything was slipping out of our hands. I never thought that we might not be able to afford medical care for our baby. I believed in insurance and thought they'd be there when we needed them. We started wondering if we should even go to school, if we even could go. That didn't feel right, though. We feel strongly that we are supposed to be going to school this fall. Although that wasn't turning out to be the easiest choice. We just hoped and prayed that something would work out.

My friend sent me a quote that I have already read a million times:

"It isn't as bad as you sometimes think it is. It all works out. Don't worry. I say that to myself every morning. It will all work out. If you do your best, it will all work out. Put your trust in God and move forward with faith and confidence in the future. The Lord will not forsake us, . . . if we put our trust in Him, if we pray to Him, if we live worthy of His blessings, He will hear our prayers." Pres. Gordon B. Hinckley

I started reading that everytime I got overwhelmed with insurance problems. It helped a lot.

Yesterday, we called the school insurance again. It seemed ridiculous that they wouldn't cover us. We talked to someone more knowledgeable and found out that they would cover us and our baby completely, if the baby had the coverage when he was born. Hmm. The ONLY way to get the coverage is to either be an employee of the church, or a student. My husband doesn't start school until August, and our baby is due in May. Was there a way he could take classes this summer???

My husband made some calls this morning and shared our story with a sweet lady in the MBA program. She said that she didn't see any way that he could take classes early since the MBA program is so rigidly set already. But she'd see what she could do. We got a phone call before lunch from this lady. She had a meeting with the man in charge of admissions for the MBA program and the dean of the MBA program. A special meeting, with very important people, just to discuss us! They decided that our situation merited special treatment, and that my husband could take on-line classes this summer so our baby will be covered. When my husband told me about this, tears came to my eyes. So many strings were pulled for this to happen. This is what I call a miracle.

So, our baby will be covered. He will receive the medical care he so desperately will need. We will be able to attend school this fall and actually afford insurance ($300 a month). I am just so grateful for this opportunity that has opened up for us. I know we are being looked after.

It all works out.

The lesson of Carrot Cake

I made carrot cake yesterday. I had been craving it for awhile, I had some leftover cream cheese frosting from a birthday in the fridge and with everything that happened yesterday (see previous post), I just felt like getting my mind off of things. I figured we deserved to just relax and eat cake.

So I started the somewhat laborious process of making carrot cake. You see, you have to peel the carrots, and then grate them, finely. Which takes a long time. Plus I had my toddler "helping" me, so that made everything take longer too. I finally divided the cake into the pans and popped them in the oven. As the cake was baking, it smelled SOOOOO delicious! I couldn't wait to frost it and eat it and enjoy a peaceful evening.

When the cakes were finally baked and cooled, I started to get them out of the pans. As I was dreaming of the deliciousness that this cake would be, I snagged a piece that had stuck to the pan and popped it in my mouth. Something was wrong. It tasted disgusting! It didn't take long for me to realize that I had forgotten to put sugar in it. *Sigh*

Yah, that pretty much described my whole day.

I started sobbing. My husband came in and asked what was wrong. "I forgot to put sugar in it!" He tried to pretend that it would still taste good when it was frosted, but I knew better. It was a failure. I had put a lot of time and effort into that cake. I was SO looking forward to eating it.

Why wasn't anything turning out like it's supposed to?

Today at lunch, I was again lamenting the failure of my cake. It just sounded so good. Then, the thought occured to me, why don't I just make it again? Sure, it takes a long time. Sure, it uses 4 eggs and a lot of carrots- ingredients I already used and wasted the first time. But I thought, I just can't stay down. I can't let this all get to me. I can take control of my situation and make the
best of it.

So I made the cake, a lot more carefully this time. And you know what? It was amazing!

Sometimes things don't work out the way we think they will. We might be looking forward to something being one way, and then get incredibly discouraged when we find out it's not what we thought. We can sulk, and think of what could have been, or we can make the best of the situation we're dealt with. That's what I am going to do.

So, the moral of this story: When life gives you cleft lips and dilated kidneys, you make carrot cake. And then you make it again.

34 weeks

I was reminded today of how fragile life is. Of the miracle of a perfectly healthy baby.

Today has not been easy.

I had a doctor appt and ultrasound today. I have been looking forward to this appt for a long time, hoping to get answers to my seemingly never ending questions. I first met with the ultrasound tech. I just love her, by they way. She was positive and wonderful. She kept telling me how cute my little baby was and how he was such a character. His head is positioned down, cocked back. His little legs are straight up, bent, right under my rib cage (yah, I can feel that:)). She showed me his hair (he has hair!) and his little feet. We watched him swallow. I felt so amazed at the miracle that is my baby. The ultrasound tech knew how important it was to me that I get a good picture of his cleft. He wasn't in a good position, but she kept working at it and got us the best picture we've had so far. Thank you!

*This picture makes me cry everytime I see it! I just love him so much already!*

She said his cleft is definitely only on the left side and that it is small. She was even able to get a few layers deep and get an okay look at the palate. From what she and the doctor can tell, he has a cleft palate. I guess I shouldn't be surprised. I was supposed to be prepared for the worst, hope for the best. Truthfully, I was just hoping for the best. I was discouraged at this news. Cleft palate means more surgeries and more problems.

But that's one question answered, at least.

My baby is measuring small- about a week and a half behind. When I talked to the ultrasound tech about my first pregnancy, she said I probably just have small babies, and to not be worried about his size. Phew. I don't want to worry about anything else.

There's been something else with this baby that I haven't mentioned before. Mostly because it wasn't really an issue. Until today. At my 20 week ultrasound, our baby had dilated kidneys, meaning they were holding more fluid than is normal. For our baby, it was about double what is normal. My doctor and the specialists told us not to worry about it too much because medically, it was a non issue. They said that most likely, it would resolve on its own. Boys are sometimes lazy and just don't pee as much as they should while in utero. They said he'd grow out of it.

When I met with my doctor today, he seemed worried about the kidneys. More than he has in the past. I asked him why and he admitted that he really thought they would have gotten better by now, not worse. They were a lot bigger than they should be. He started talking to me about possible causes, and it was scary. Worst case scenario- congenital polycystic kidney disease. He seemed to skirt around what that actually is and how it is treated until I finally made him tell me. It's not treated. It leads to kidney failure, meaning a kidney transplant, probably in late childhood. I almost lost it right then and there.

Of course, that's worst case scenario (remember that "prepare for the worst, hope for the best" thing?). There are a number of other things that can be causing the dilated kidneys, but we won't know what is causing it until he is born. Just more waiting. Because my baby has two abnormalities, the chances of him having a genetic or chromosomal disorder are increased. My doctor mentioned that after birth, he will be tested to make sure that nothing else is wrong. So far, he is healthy. His heart, brain, spine, and everything else are perfect. But ultrasounds can't tell everything.

I cried the whole way home. And for most of the day.

When people find out about our trial, sometimes they'll say, "Well thank goodness it's nothing serious!" or "At least it is fixable." While that may be true, it's not exactly what I want to hear. I recognize that people have endured far greater trials. I recognize that in comparison to others, my trial is minor. But while in the midst of a trial, it's hard to compare pain. I think the pain you happen to be going through is the worst pain of all. I know people don't know what to say in situations like this. I know they are trying. I don't blame them. It's a hard situation. I don't even know how to really handle it.

I just can't wait for 6 weeks from now, when I can finally hold this little guy and KNOW he's okay. All the speculation and guessing has been so hard. 5 months of not knowing. . . it'll be so nice for that to come to an end.

In the meantime, I'll just keep doing what I've been doing. Have faith. Try really hard to be strong. And enjoy the movements of my sweet baby.

32 weeks

Well, it's been 12 weeks since we found out about our baby's birth defect, and I feel like I don't really know more now than I knew then. We've been to the specialist twice and to my OB a couple of times, but they haven't really been able to get a good look at his lip. Even if they could get a good look, the ultrasound might completely distort what his cleft will look like. So basically, we're not really going to know what our baby will look like until he is born. I was so frustrated about that at first, but I am trying really hard to be patient and to just have faith.

My favorite quote lately is from Bishop Edgley's talk from conference about faith:

" There is much that I do not know. . . But while I don't know everything, I know the important. . . And what I don't know or don't completely understand, with the powerful aid of my faith, I bridge the gap and move on. . . "

So I am trying to bridge the gap and move on.

What we HAVE found out from the ultrasounds is that he is growing perfectly and everything else looks great. That is always so good to hear. And really, that's what matters. I am grateful.

I have been so blessed to have a lot of support through all of this. I have been in contact with two moms whose babies were born with clefts, and they have been so good to sympathize and answer my million questions. I also found a group of moms from Utah whose kids were born with clefts and who got treatment at Primary Childrens. They have such a great support system going on. They have an online group with before and after pictures, surgeon recommendations, and answers to lots of questions. They share their inspirational stories. They have annual parties, play dates, and participate in the 5k/1mile run for Operation Smile, a group that helps kids with clefts. I feel a lot better knowing that I'm not going into this alone. It is so nice to be able to talk to other people who have gone through this.

I've also had so many friends and family reach out to me and support me in my hard times. Thank you.

I have no idea what kinds of things we're going to go through with this baby. There will be lots of unanswered questions for the next 8 weeks. But I am okay to wait. I am so excited to see this little baby! I know that the minute I see him, all my worries and fears will wash away.

20 weeks

One week ago today, we went to the doctor to find out the gender of our baby. Having been through this before with our first baby, and finding everything to be fine, we had no reason to think that this would be any different. After finding out that we were having a boy- woohoo!- we also found out some news that really took us by surprise; our little guy will be coming to this world with a birth defect. He has a cleft lip.

Since that moment, I have been through every possible range of emotions. As far as birth defects go, this is pretty mild. In our day and age it is easily repaired within the first few months of life, and done so well that you can't even tell later in their life that they had any defect. So, I am definitely grateful that if something is wrong, that this is it, and that it isn't life threatening or life altering by any means.

But at the same time, this is my baby boy, and I'd rather that nothing be wrong. My heart has been broken, finding out that my baby will have to be a little tattered for awhile. When I think of the surgeries he will have to go through at such a young age, my heart breaks again. In the grocery store, I look at moms pushing around their infants in their car seats, and I feel a pang of sadness- their babies are fine. Mine won't be. How in the world are we the 1 in 750 births where this happens? Those are crazy odds. I can't believe that we're the 1.

We have been blessed with so much peace, though. I was in denial for awhile, thinking that it must have been a mistake. But when it was confirmed at our specialist appointment, I wasn't filled with sadness, but rather peace. I feel strongly that our little boy knew that he would need to come to the world this way, and he was okay with that. He accepted that, and so did we. I keep thinking of a story in the talk Pres. Monson gave in the Relief Society broadcast last September:

"Mary [visited] with a friend who had a greenhouse. As she looked at her friend's flowers, she noticed a beautiful golden chrysanthemum but was puzzled that it was growing in a dented, old, rusty bucket. Her friend explained, 'I ran short of pots, and knowing how beautiful this one would be, I thought it wouldn't mind starting in this old pail. It's just for a little while, until I can put it out in the garden.'

"Mary smiled as she imagined just such a scene in heaven. 'Here's an especially beautiful one,' God might have said. . . 'He won't mind starting in this small, misshapen body.' But that was long ago, and in God's garden how tall this lovely soul must stand!' "

We are so grateful to be able to bring this special spirit into our home! Heavenly Father has a plan for us, and I know that as long as we have faith and trust in Him, that we can get through anything.

I am so grateful and amazed at everyone who has reached out to us and supported us in so many ways already. We've had dinner brought to us, received a gorgeous bouquet of daisies, and have received so many touching texts, phone calls, and messages from people letting us know they are thinking of us. Thank you to all of you who have supported and comforted us. We appreciate it more than you will ever know.

So now we just wait. There are still a lot of unknowns- does the cleft involve his palate? Is it a part of a chromosomal or genetic defect?- and a lot of those won't be answered until he is born. But for now, we take comfort in the fact that he is OK.

He is OK, and so are we.

"God is my salvation; I will trust, and not be afraid. . . "

(2 Nephi 22:2)