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, December 7, 2011

6 months old

4 months old

5 months old

6 months old

I know it's been forever since I posted, but we hadn't really had any major changes. The big news is that Dallin is done with his nose stent! Hallelujah! That thing drove me crazy. We saw Dr. Morales for Dallin's 3 month follow-up in November. He was very impressed with how well Dallin's lip has healed. And really, so are we! I honestly think he looks amazing. I had always hoped he would look this good, I just didn't know it would be so soon. I am so grateful to Dr. Morales and for what an excellent job he did. He has made Dallin's life so much better than it would have been.

Dallin is 6 months old now. I can't believe he is that old! Didn't we just barely have his surgery?! He has now not had his cleft longer than he had it. When I see pictures of him with his cleft, it catches me off guard for a moment. It's crazy to think he ever looked like that, seeing how he looks now. I still miss that little cleft smile. I think I always will. But I love this smile, too. I can't get enough of this cute, cute boy! So now, we just keep massaging his scar and go in for follow-up appointments every so often. We are done with the hard stuff!! I am so happy that I can just focus on loving my baby now.

Thursday, August 25, 2011

3 months old and 3 weeks post-op

It's hard to believe it's only been three weeks since Dallin's surgery- he looks so good and we have adjusted really quickly to his new beautiful smile! We had his follow up appointment this week with Dr. Morales. I have been so looking forward to this appt! I was so excited to be done with the arm restraints and the logan's bow, although truthfully we haven't been great using them. Mostly I was excited to get the nose stent out. It gets plugged up with boogers and makes it hard for Dallin to breathe.

Dr. Morales was very pleased with Dallin's recovery! It was funny, he acted like he didn't want to brag, but couldn't help but comment on how good he looked. We think so too:) Then he undid the stitch in his nose and took out the stent! Yeah! And then put it right back in. Boo! Turns out Dallin has to keep wearing the stent for 3 months! I really was not expecting that. As the scar in his nose continues to heal, it can tighten up and make his nostril close up in the stent isn't in. I understand the reasoning, but that doesn't make me excited to do it. I want to look at my baby and just see him! I took his nose stent out last night and just stared at his cute little nose forever.

We started massaging his scar with vitamin e oil. As his scar heals, it gets tighter, and is making his lip pull up a little. The massaging will help with that.

It's been fun to be here in Provo where no one knows that Dallin had a cleft. The nose stent prompts a lot of questions- does he have health problems? Does he have problems breathing? I think it's funny because his nose has never even been the problem! When I say that he was born with a cleft lip and that his surgery was only 3 weeks ago, people are really surprised! They say they never would have known he had a cleft. That makes me so happy. I have hoped this whole time that Dallin would never have to look or feel different.

Just some advice for when you come across someone who looks different:

-If you are a friend, neighbor, family member, etc. it is okay to ask appropriate questions. I have no problem at all answering any questions you may have!
-If you are a random person in the grocery store or at the bank, please don't ask. It's not really any of your business.

We love Mr. Dallin so much and are so happy with how this is turning out. We still miss his cleft; I keep looking at pictures before the surgery so that I can see that cute smile I miss so much. But we love this new smile, too and are excited for Dallin that it is looking so good!

Tuesday, August 9, 2011

One week post-op

Dallin is looking amazing, if I do say so myself! I had no idea that only one week later, he would look this good. I'm having a hard time wanting to keep the Logan's Bow on when he looks this good. Shh. . . don't tell:) We swaddle Dallin at night with his arm restraints on. When we unswaddled him this morning, this is what we found:

Ha! Where there is a will, there is a way!

Love these boys!

Sunday, August 7, 2011

Friday, August 5, 2011

72 hours post-op

It's only been 3 days since Dallins surgery and he is already pretty much back to his normal happy self! I even got a few smiles out of him today:) He's been off pain meds for about 18 hours and seems to be doing great! I also think he is looking more and more like the baby I knew before. It's a good day! Looking good, stud!

Thursday, August 4, 2011

Dallin's accessories

I'm sure you have noticed that Dallin is now wearing the hottest trends in accessories:)

The Logan's Bow

The Logan's Bow is the metal appliance that is taped to Dallin's face. It is there to protect his lip from accidentally getting hit or touched. He'll wear this for about 4 weeks.

Nose StentsDallin has nose stents sewed into his nose. These tubes are there to help keep the structure of his nose intact as everything heals. Dallin's left nare was somewhat flat, and his nose repair helped "fix" that (I liked his nose the way it was, so I'm not sure "fix" is the right word). I'm not exactly sure how long these will stay in, but at least until our follow up visit in September.

The Arm Restraints or "No-No's"

These bad boys are on to make sure Dallin doesn't put his hands in his face and mess with the incision site. We don't want to have to do any emergency lip repairs! He'll have to wear these for about 4 weeks as well. Honestly, they're not as bad as you might think. I take them off a lot when I can watch him and make sure he doesn't put his hands where he is not supposed to. He mostly just wears them when he is sleeping. He is used to being swaddled (we made sure of that!) so the no-no's aren't too big of a deal for him. Yet.

Dallin is adjusting very well to his new accessories! He seems to go cross eyed quite a bit, trying to focus on the Logan's bow:) It was funny- in the hospital, they took off his arm restraints for a minute to let him stretch, and he had his hand up and grasping that Logan's Bow before anyone even had a chance to stop him! He had a death grip on that thing and it took quite a bit of prying to get him to let go! I told the nurses he must have been planning that: "The second they take these things off, I am grabbing that stupid metal thing!"
Hunter has been very good so far and hasn't tried to touch Dallin's face or yank on the Logan's Bow. The first time Hunter saw Dallin, he got a sad look on his face and said, "Mouth!" He knows something is different and that Dallin doesn't feel his best, so he's being very nice to him (mostly by just leaving him alone:)).

Don't be surprised if you start noticing all the babies wearing these hot new fashion trends:)

The Surgery Story

Well, Dallin's cleft is no more! It's unbelievable to me how in an hour and a half, such a huge part of him is now gone. I am slowly, very slowly, getting used to his new smile. Dr. Morales was his surgeon, and he did an excellent job. I would recommend him to anyone and everyone whose kid has a cleft. I think he really is the best.

Our day started off super early. Dallin woke up at 1:00 am to eat, and really didn't go back to sleep until 3:30- what a night to have an off night! I was planning on waking him up to feed him at 3:30, since he couldn't eat past 4, but decided to let him sleep since it took him so long. He actually woke up at 4, though, and I decided to just feed him (don't tell anyone:) ). We were on our way at about a quarter to 5.

Mr. Bright Eyes! Getting ready to head down there.

We checked into the hospital around 6:30. A nurse practitioner checked all of Dallin's vitals and his weight and gave him the okay for surgery. Dallin was put in his hospital gown, which I thought was so adorable!

He wasn't really a fan:)

We then went into the surgery waiting room. Greg was able to get Dallin back to sleep which was so nice. The poor boy was hungry and could not understand why I wouldn't feed him! I was grateful he was able to sleep. The surgeon, Dr. Morales, came to meet with us in the waiting room. He explained the procedure and answered our questions. He really is a fantastic surgeon! I've heard some people complain of his bedside manner, but I think he was very professional and kind. The anesthesiologist came next and explained what he would be doing. I wanted to make sure he'd be watching my baby the whole time, and he assured me he would. We figured he could be trusted once we noticed his BYU lanyard:) Then came the hard part. We walked with the anesthesiologist to the doors that led to the operating room, and handed our baby off to him. I started crying the minute those doors closed. I knew that was the last time I would see his sweet little cleft.

We went into the family waiting room to wait during his surgery. My friend Brittany had sent us a hospital pack to take with us that was really a lifesaver! We had snacks to munch on, and a puzzle book to keep our minds occupied. While we were waiting, our friend Casey Udy (remember her?) came to visit us. She brought a toy for Dallin and for Hunter. I thought that was amazingly sweet of her to stop by! It sure made waiting easier.

We were told the surgery would last an hour and a half, so at 9:30 exactly, I started getting anxious. I went to ask the sweet ladies at the check in desk if they had any news. They said we should probably give them about 10 more minutes and then they would call. About a minute later they let us know that the surgery was over and Dr. Morales was coming to talk to us. She said he wanted to meet with us in the private consultation room, not because he had bad news, but because he thought that was more respectful. I thought that was nice of him. He let us know that everything went great and that Dallin did good. He gave us instructions on how to take care of everything, and then we went back to waiting until we could go see Dallin. After about 10 minutes I heard, "One parent for Dallin." I told Greg I was sorry, but I got to be the one parent:) I was so nervous as I walked back to the recovery room. I walked back to bed number 3 and saw my sweet baby's new smile for the first time.

Looking back now, I can say that he looks so good! But then, I just cried and cried and cried. I couldn't even talk to the nurses because I was crying so hard. The thought running through my head was, "I hate it. I hate it. I want his old smile back." One of the nurses said, "Isn't is so exciting to see him put back together?!" Um, yah. Not what I'm thinking at all. I don't "exciting" is the word I was looking for. I got to hold him and again I just cried and cried. He was pretty calm, but had an occasional wail that just broke my heart. The breathing tube he had during surgery dried his throat out and made that cry sound so sad. After a few minutes we were able to go upstairs to his room.

We spent the rest of Tuesday and Wednesday morning hanging out while Dallin pretty much just slept. We had some visitors which was so nice! It was great to feel their love and support.

Thanks everyone for stopping by!

Dallin wasn't very interested in nursing, or eating anything for that matter, all day Tuesday. He had an IV that was keeping him hydrated. I was really missing nursing him and started wondering if he'd ever want to do it again. I was thrilled when, at 1 in the morning, he nursed like nothing had changed! And he's been eating great ever since. The nurses were amazed that he nursed so early, and said he was definitely above the curve. Go Dallin!

When Dallin woke up on Wednesday morning, he was so swollen! I really wasn't prepared for that. I didn't think he looked like himself at all! I kept rubbing his hair, because that's the only part that really looked like him. It seriously broke my heart.
Fortunately the swelling went down fairly quickly and he started looking more like himself.

Around noon we got the all clear to head home! YEAH!

We are home now and are doing good! Dallin has so many fluids in him that he just looks so chunky! I've never had chunky babies, so it's kind of fun:)

I want to thank everyone for your text messages and phone calls while we were in the hospital. It meant so much to us to know that people were thinking of us and praying for us. We are so blessed to have such amazing friends and family!

Tuesday, August 2, 2011

Quick Update

Dallin's surgery went well this morning. He is in recovery now. He's been sleeping most of the day. We still can't get him to nurse, or eat anything for that matter. He's been awake a few times and acts pretty sad when he does wake up. It's so sad to see him like this! I am excited to get my happy baby back. I think he looks pretty good, considering what he went through. I cried and cried when I first saw him- he just looks so different! Dr. Morales did an excellent job, though, and we are excited to fall in love with this new smile.

1:00 am update: Dallin just nursed! What a champ! He just latched on like nothing has changed. The nurses were amazed and said he is way above the curve! Way to go, little man!

August 3rd, 10:30 am update

We are on schedule to come home today! Dallin is nursing well and is off his IV. Swelling in his face is at its peak today, which is hard for us to see. He doesn't look like himself at all. Dallin is still extremely tired and out of it. We are anxious for him to get back to normal!

Monday, August 1, 2011

Surgey Info

I can't believe that Dallin's surgery is tomorrow. Today has been emotional and stressful as I try to get ready for our hospital stay. The hospital just called me and told me the schedule for tomorrow and I thought I'd share since a lot of people have asked.

No food after 4:00 am

Check into Primary Children's at 6:30 am

Surgery at 8:00 am

The surgery will probably only last an hour and a half. That will be a long hour and a half!

Thank you to EVERYONE for your love, support, encouragement and prayers! It makes this whole experience so much easier.

Well, wish us luck!

Wednesday, July 27, 2011

A Smile a Day

The countdown to Dallin's surgery has begun. 6 days. It's not a happy countdown. I think I have mentioned how heartbroken I am that his adorable wide smile will be changed forever. I love this little boy exactly how he is. How can you "fix" perfection?

Since I only have 6 more days with this smile we love so much, I decided to take a picture a day of his smile.

I love this cute boy!

Thursday, July 21, 2011

Amazing Support

I have been overwhelmed with how kind and generous everyone has been with Dallin.

Today, my friend brought me some cupcakes from Temptation Cupcake and some aromatherapy lotion that's supposed to relieve stress. She is moving this weekend and won't be here when Dallin has his surgery and wanted to show her support. I was so touched by her kindness!

After Dallin was born, my visiting teaching partner who I love so dearly came to watch Hunter for me while I went to a doctor appointment for Dallin. She brought a cute little outfit for Dallin and another gift that really touched my heart: she made a donation to Operation Smile in Dallin's name. It brought me to tears. I thought it was amazing that she honored Dallin by helping another child with a cleft.

These are just two examples of how thoughtful people have been. Thank you, everyone, for your support and love!

Saturday, July 16, 2011

Dallin's Smile

I asked a friend (another cleft mom) for advice about Dallin's surgery:

"It is hard as a mom because I loved, and still love, that face. When I look back at pictures, it is still beautiful to me. . . I think you will be like I was and want and dream about seeing that little cleft face again, but maybe one day you will, when you will be able to hold someone else's newborn baby who will have a cleft lip and you will be able to comfort that mom because you will love that face like she does. . . This new smile that Dallin will have will be the smile you will know the rest of his life. . . I promise you will love his new smile as much as you love the cleft one. And I promise that you will never forget the cleft one."

I was overcome with sadness today thinking that in just two weeks, I will hand my baby over to a stranger, and I will say goodbye to his sweet, beautiful cleft smile forever. He will come back to me looking completely different. I am going to miss his wide smile so much. This post is so I don't forget.

Thursday, July 14, 2011

Kidneys- Hydronephrosis

I know this blog is technically about Dallin's cleft, but today I'm going to write about his kidneys. For those who don't know about Dallin's kidneys, read about them here.

We went to Primary Children's today to do some testing and meet with a pediatric urologist. I was apprehensive about the appointments. As strange as it may sound, I was mostly worried that they wouldn't find anything wrong. Or rather, wouldn't find what was causing the kidneys to be dilated. Greg and I wanted answers. A solution, so we could start working towards it. The unknown is scary.

We started out with a lasix renal exam. Dallin was given a catheter and an IV where a dye was placed in his blood stream. They then took pictures of the kidneys every 15 seconds for 45 minutes. This was to determine if there was a blockage. Poor Dallin had to have weights on his arms and legs to keep him from moving. That combined with the catheter and IV made him a very angry boy. It was heartbreaking to see him cry! We got him calmed down with some flavored syrup on a binky. He looked at me with teary eyes and had the saddest face! Like, why are you doing this to me?! Poor baby. (I failed to mention to him that this was mild compared to what's coming in a few weeks:))

After that procedure, he had a VCUG to check for reflux. This one didn't need an IV and was much shorter, so it wasn't as bad.

We ate lunch at the hospital and then met with the urologist. Funny story; the lady called us back to meet with the urologist. He came in and talked to us a bit and then started bringing up the x-rays to look at. He asked us where "the name" came from. Thinking he meant Dallin, we said we just liked it. He clarified that he meant our last name. Greg said something about he thought it came from England originally or something. I didn't realize Pickett was so weird, so I thought it was a weird question. Then he started showing us the x-rays and eventually we realized, "that's not our child!" He had the chart for someone with a last name that had like 20 letters in it, mostly consonants! No wonder he wondered about the last name! He probably thought we were weird when we said it originated in England:) The kid's first name was Galwyn, and when the lady called it, we thought she said Dallin. Looking back, we cracked up thinking what they must have thought when we stood up when they called for a Galwyn Leevxanoino- or whatever it was. There was an Asian family in the waiting room as well. It must have been them. Whoops! Well, that's one way to be seen faster:)

ANYWAY, when we finally had the right chart and x-rays, the doctor discovered that Dallin has a blockage at the uteropelvic junction, or UPJ. That is at the base of the kidneys, as they connect with the ureters. The blockage is preventing the kidneys from eliminating the urine like they should. Normal elimination time is 12-15 minutes. His right kidney is eliminating in 22 minutes, and his left is taking 89 minutes! Yikes! However, his kidney functions are well within normal. So now we wait and watch. There is a 50/50 chance that he'll grow out of it by age two. If at that point it is still a problem, he will have a surgery to remove the part that isn't working. It doesn't sound like a pleasant surgery- he'd be in the hospital for a few days. But we are very happy that it is not something more serious! Definitely something we can handle. Since the blockage is up by his kidneys, he isn't at a high risk for infection so he can be off the daily dose of antibiotic. Another yeah!

Primary Children's is such a hard place to be. There are so many children there fighting serious problems. It always breaks my heart to see the children, and to see parents crying in the hallways. We feel so blessed that our visits are for minor things.

Well, Primary Children's, we'll be back soon. Not looking forward to our next visit. But grateful that we got answers today!

Sunday, June 12, 2011

My feelings

It is my hope that one day, this blog will be found by someone who has just found out their baby will be born with a cleft. When their heart is heavy and they are feeling overwhelmed, I hope this blog will give them answers and peace. This post is for them.

During my pregnancy, I was often scared and overwhelmed. I put on a brave face, and tried to pretend a cleft lip was no big deal. But really, it was a big deal. At least it felt like a big deal. I remember thinking how I hoped they could just fix it as soon as possible. I remember hoping I would still think my baby was beautiful. I wanted to be able to look at him and see him, not his cleft. I looked at countless pictures of babies with clefts, tried to picture what my baby's would look like. I tried to pretend that some of the pictures didn't scare me. I remember many tearful nights, crying together with Greg. It was a rough 5 months.

Now that I have my sweet Dallin here with me, I could not feel more different. After all the wondering of what it would feel like to have a baby with a cleft, now I can tell you- it feels totally normal! My pregnant self would have never believed it, but it's true.

Here are some answers to the questions I had:

Will I still think my baby is beautiful? Will I be able to see him, and not his cleft?
ABSOLUTELY! As soon as Dallin was born, I fell in love with him. He is so perfect to me. Dallin's cleft is such a part of him, I hardly even think of it. In fact, it doesn't even occur to me that he looks different than any other baby. Dallin's cleft isn't very severe (in fact, sometimes I feel like an imposter being friends with other cleft moms, because I feel like Dallin's cleft isn't that big of a deal) but even when babies are born with severe clefts, I know the moms feel the exact same way.

Will I be sad when it's time for his surgery?
I heard other cleft mom's say that surgery was bittersweet. They said they were so in love with their baby's sweet wide smile, they were sad to see it go. I really couldn't believe that could be true. But now, I know exactly how they feel! To me, Dallin's smile doesn't even need to be "fixed". I think it is perfect how it is! His lip gives him so much character. I know that his surgery is for the best, but it will be hard to see my little baby change. We have fallen in love with this version of Dallin. It's hard to imagine him any differently.

What will other people think or say?
I was so worried about what other people might think of Dallin. I was worried that I'd have to explain his situation all the time, or warn people before they see him: "This is Dallin. He was born with a cleft." I realize now, though, that his cleft does not define him. It's not who he is. So people see him, and I don't have to make excuses. He is adorable how he is, and I think others can see that, too. Some people ask questions. Some people just comment on his other adorable features. But everyone has been so kind. I haven't been offended or felt defensive. The other day, a lady came up to us in a restaurant and asked if she could see our baby. She looked at him and oooed and awed over how cute he was. When I got home, I wondered if she really thought that, or if she was just being nice. But I just have to realize that I love him and think he is super cute, and not worry about what other people might think.

Sometimes I do keep his blanket over his car seat, though, so I can avoid a million questions from strangers.

So basically, having a baby with a cleft lip isn't nearly as scary as I thought it would be. Thinking of his surgery in the future is still a little scary. I know it won't be easy to see him go through that. But all the other worries I had have been washed away by this amazing love I feel for my baby.

For everyone else who might be wondering. . .

I don't need to be consoled about his condition. It doesn't feel like a trial at all.

People can ask me questions, any questions they want, and I am happy to answer them.

His cleft isn't anything that I am ashamed of or wanting to hide.

I am scared of his surgery and having to see him go through that. I think I will need a lot of support during that time.

If you know anyone who finds out their baby will have a cleft, please send them this way! It really helps to have support from someone who has been there.

I think something my friend told me really sums up how I feel about everything. Her baby was born with a cleft lip and palate about a month before Dallin was born. I met with her for a play date when I was about 38 weeks pregnant. I had a lot of questions for her! One thing she said really stuck with me. She said that if she has another baby born with a cleft, it really won't be a big deal. It wouldn't be anything she couldn't handle. Now that Dallin is here, I feel the exact same way.

Newborn pictures

I love this little guy!