Cleft Lip – All the things

Harvey, 365 days later

April 1, 2015April 1, 2015 Jessica

Harvey is ONE! I never shared his birth story, even though I typed it out a few weeks after he was born so I have decided to share it now!

March 31, 2014…. It is Kamden’s birthday! I woke up feeling a little like labor was in the air. But I wasn’t really sure. I had been in pain for weeks and sweet baby boys position had just made me miserable. I had an appointment that morning. I found out at the appointment I was progressing, and was in between a 3-4 and 50% thinned. (sorry for all of you who that is way too much info for, but this a child birth post).

I left and went to pick up a few last minute birthday gifts for Kam. Then I ran to Walmart and picked up a few groceries. By the time I got to the house to eat lunch with the fam, I told Joel I was really thinking I might go into labor that day. He reminded me that I had all the others at 38 weeks and 2 days, and waiting until Friday (it was Monday) was much better for his schedule. Of course we both laughed at that, knowing we don’t have any control.

I had already been praying that I could wait until AFTER Kamden’s birthday. I did not want to miss his day. I was able to go to dinner and Goody’s for dessert. I was having a few contractions throughout the evening but they were not consistent however by 8:45 when we were at Goody’s they were pretty strong. When we got home we got the kids ready for bed and I went ahead and made sure all the bags were ready. By 11:00 I laid down hoping that I could just sleep. I had contractions 10 min apart for an hour and decided I should wake Joel up. By the time he was awake enough to know what was going on, my contractions were now 3 minutes apart and we both knew we had to hurry! We got to the hospital at about 1:00am (had to wait for someone to get here, then we had to drive to the hospital)

It was a very rushed process with lots of skipped procedure (like being admitted before stuff starts happening) But I was between an 8 and 9. They called my doctor and by the time he got there I was ready to have a baby! We will skip all the fun stuff, and jump ahead to 2:20am, when this perfect little boy arrived! He was so gorgeous and wonderful! Funny how all the chaos disappears and you just fall madly in love with this tiny baby they just laid on your chest! He came into this world 2 hours after his big brothers birthday ended, on April fools day! We didn’t text too many people at 2am but I just knew when we told people the next day they would think it was a joke! We sent photo proof with our text the next morning!

For those of you who may not know, Harvey was born with a incomplete unilateral cleft lip and a notch in his gum line. He had surgery July 2014 to repair his lip. He was so incredibly perfect before and I love looking at all of these pictures of him before his surgery! He is just as perfect now though and I kind of feel blessed he has two smiles! Melts my heart!

This boy is so funny! He loves to play with his big brother and sisters! Everyone spoils him rotten though! He is not walking yet, but crawling and climbing on everything he can get to. He has not been a big fan of baby food, table food, bottle OR sippy cup (mom is his favorite!) but he is finally coming around to table food as long as we let him feed himself. He loves pizza, peanutbutter sandwiches, and ice cream. He is obviously a health nut!

I have said it so many times over the last year, but this boy has taught me SO much about life! I don’t know if I will ever be able to express all of the things he has helped me to see. All I know today, is that I am honored to be his mommy. To watch him grow and learn. To be his teacher and guide through life. I look forward to holding his hand as he walks, helping him memorize scripture and showing him what it means to love Jesus.

My prayers are big for this little guy. I pray God gives me all the strength and wisdom I need to be the best mommy I can be for him. That he knows our love for him always and knows he came into this world perfect in our eyes. I pray that he knows Jesus deeply and knows how loved he is by Him.

I’m ending it with this picture, because right now, he points at everything and says “dat” but it is also a good reminder that he is really ONE! Look how smart he is, holding up one finger- hehehe!

Cleft Lip, Encouragement, Family

Lessons from Harvey

June 19, 2014June 21, 2014 Jessica

When I was 22 weeks pregnant and told that our baby would have a cleft lip, I was devastated. Emotions and thoughts flooded my mind in the days that would follow. I vowed not to google anything that day and stood by that for a few weeks. To be honest, at first all I could think about is how different he would look. My other 3 babies all looked so very similar at birth and we would get told over and over “oh that is a Meinardus baby”. I feared that he would be different. Would I fall instantly in love with him? Would people stare at us at Walmart? Would I need to constantly defend my child? Will his siblings care that he looks different? Those were really my first thoughts. Vein, insecure, selfish thoughts.

A few weeks after our initial diagnosis, we met with my OB and he suggested we research a surgical team. So that is when I started googling. I soon found ACH had a cleft team and made a few phone calls. After a phone consult, my emotions suddenly shifted. I was overwhelmed by the information given. Suddenly, my thoughts were flooded with concerns. Now I am reading blogs and forums of parents whose children are on their 7th, 8th, 9th surgeries and still have more to go. These children have to undergo so much pain. My heart started to break. I couldn’t even imagine my child having to have one surgery, let alone 10. I had already been praying but now I was praying even harder. I knew I needed to rely on my faith now more then ever.

Slowly, my fears eased and I started to feel at peace with everything. We went to Children’s for a prenatal consult where we were given even more information. We left overwhelmed again but were glad we had all the information. We knew he would be having surgery at around 3 months of age and that was about the only thing we knew for sure until he was born.

That day at Children’s they told us that after surgery, parents often will morn their child’s appearance. That they miss the way their babies looked. I remember thinking then, “I can’t imagine that. I am sure we will want to have that fixed for him so he will look normal.”

But……. Harvey Powell has changed everything. This boy has shown me so much. He has shown me what perfection is all about or maybe what it is not about. Harvey has shown me that what some people see as a flaw, is actually the most beautiful thing imaginable. He has taught me that joy can be found in the most unsuspecting places. He has, more times then I can count, brought me to tears with his beauty. Harvey is truly a gift.

Now, looking at him, I can’t imagine him any other way. I can’t even picture him “normal” and I really don’t want to either. His smile is enough to melt the polar ice caps! When he is sleeping and that sweet lip is split, it is all I can do not to just kiss him all over! When his tongue comes through that sweet cleft it puts the biggest smile on my face! I am telling you the joy that flows from him is incredible!

When I think about how I see Harvey, I can’t help but think about how God sees us. I know I see myself as a flawed, imperfect human. Some days, I pick myself apart so badly it doesn’t even feel like there is anything left to pick at. I see physical flaws every time I look in the mirror. I often wonder what others are seeing when they see me and I assume they are seeing the flaws. But when God sees us, I don’t think he sees our flaws, I think he sees our beauty. Isn’t that amazing? Harvey is teaching me to see the world differently. With eyes that look past flaws and see beauty. When I see Harvey, all I see is beauty.

Tonight as I write this blog, I have been looking through some pictures that I have taken to preserve these precious memories. In a few weeks, Harvey will have a new look. Not a better look, but a new one. I have so many mixed emotions but tonight I am just plain thankful. Thankful for him and for the perspective he has given me. Thankful for cameras (and good friends who let you borrow macro lens) that allow me to capture his natural beauty. Thankful for a God who never leaves us. Thankful for loving and supportive friends and family. Just thankful. I hope you enjoy these beautiful photos as much as I do!

Cleft Lip, Family

Harvey gets the go!

May 9, 2014June 21, 2014 Jessica

Yesterday we went to our monthly checkup with our Doctor at Children’s. (We got to go to Lowell again though!) I can’t say enough about how wonderful they have been already! Feeling blessed to have them!

We were told last month that they would not be able to schedule surgery until closer to time. Probably would be June before Harvey was cleared for surgery. Well yesterday, after seeing how big he had gotten, how great he was eating, and that there had been zero issues so far, they cleared him yesterday! So now, we won’t be going back to see them until the day of surgery! That is such great news and a huge blessing!

Harvey weighed 6.13 at birth and 6.5 when we left the hospital. He weighed 9.14 yesterday! Almost 10 pounds already! I am so happy that he is nursing without problems and gaining weight so well! We feel so incredibly blessed by him! He is beating all the “norms” for a cleft baby and I know a lot of that has to do with the fact that his lip is not as severe as it could be, and that his palate was not affected, but that in itself is a HUGE blessing!

So now they will call us with a surgery date. We will go to LR for surgery, then have several follow ups for suture removal and to check his lip. We are just praying for all of this to go smoothly. It is always scary when your child is being put to sleep and having surgery. The surgery will last about 3 hours.

Now we are going to just enjoy this sweet boy and that adorable lip for a few more months. I am going to take a million pictures of him before they fix it. I love it just the way it is- but know we have to fix it. So until then, I am going to just document him like crazy! And who am I kidding, I will document him like crazy after the surgery too, I mean, its just what I do! Here is a few pictures (just from my phone) that I took before we went to the doctor. He got all dressed up with his bow tie 🙂

Cleft Lip, Encouragement, Family, My Story

Meet Harvey

April 11, 2014June 21, 2014 Jessica

This sweet boy has already made such an impact on our family! He decided to wait 2 hours after his big brothers birthday ended to make his appearance. At 2:20am on April 1st, Joel and I got to meet this incredibly handsome boy! Life has been a little crazy with doctor appointments, adjusting to life with 4 kids, and everything else that goes on in life, but Harvey has been an amazing baby (I just knocked on wood and realize that today will probably be the day all that changes). Kamden, Jade, & Garner LOVE him. He gets passed around a lot and loved on even more. Garner has adjusted well and is doing great as a big sister. She just adores him. I know so many have been waiting on an update so here goes! Harvey weighed 6 pounds 13 ounces when he was born. He started nursing minutes after being born and has been doing fabulous ever since. This is a HUGE blessing and something so many of you have prayed for me. We knew there was a good chance with his cleft lip that he might not be able to nurse but Praise The Lord he is doing well! He is gaining weight too, which is another blessing. As long as he continues to gain weight, I can keep nursing! Yesterday we were able to go meet with our doctor at Children’s. Children’s has a clinic in Lowell, which is a lot closer for us. Our doctor comes once a month to see patients there so we were able to do our first appointment there. We found out that they will allow us to continue to come there for our monthly visits in Lowell. Another huge blessing! The doctor said Harvey looks great! He does have a notch in his gum that looks to be a pretty good one. We won’t know what all this will entail until later on. It could effect a number of things, but right now we are not going to worry about it because they can’t fix it until later on. His surgery on his lip will be at 3 months which will fall at the first of July. We will get a surgery date soon. One thing that I was concerned about was his eating after surgery. We knew that he could not take a binkie after surgery (so we decided not to give him one) but I wasn’t sure about feedings. We found out yesterday since he is nursing, it won’t effect anything! He gets to continue to nurse after surgery! Another blessing!! If he was bottle fed, we would have to use a syringe to feed him. So, as of now, Harvey is doing great! {and he is absolutely gorgeous, if I do say so myself!!} He is eating well, his cleft looks minimal, and we just feel incredibly blessed! Thank you all for your prayers, calls, meals, and visits!

Cleft Lip, Family, My Story

Our Baby boy

January 31, 2014June 21, 2014 Jessica

I finally feel like it is time to share some information about our baby boy. It has been something I have hesitated to share so publicly, simply because we just didn’t know enough. But I truly feel a calling in my life to be transparent about everything, which is part of the reason I am starting this blog.

In December we had a routine ultrasound to make sure our little boy was growing properly and that everything was as it should be. We were able to see that he had a cleft lip. At that point we didn’t know much beyond that. Suddenly a wealth of information was available. There were so many “could be’s” and unknowns. For 5 weeks we just prayed and ultimately gave it all to God. We found out about the Cleft Clinic at Arkansas Children’s hospital and made an appointment for a prenatal consult. We also were able to schedule another ultrasound for 27 weeks.

2 weeks ago we had that 27 week ultrasound and were able to see this precious baby more clear. He is so perfect and beautiful! We were told that ultrasounds don’t do a great job at diagnosing cleft palate, but from what they can see it does appear that he does not have a cleft palate. His cleft lip also looks very narrow which is great!

Wednesday we were able to meet with the team at Children’s. They were wonderful. They had an overwhelming amount of information to give and we are thankful to have it all. At this point there are still so many unknowns that we will not know until he is born. We know the first year of his life is going to be a little crazy, full of trips to ACH, and at least one surgery. There is so much more to a cleft lip/palate then we could have ever imagined. The good news is, no matter what it is, they can fix it! We know that the diagnosis could have been much worse and we are thankful that it is not. We fully trust God with all of this!

Now we are just looking forward to meeting our sweet little Harvey Powell!