Ivy's Lip Repair

Ivy had her lip repair surgery on November 1st. The picture above was taken three weeks after the surgery. The surgery went really well and the plastic surgeon was very pleased with how Ivy handled the surgery itself. It was a tough day for me though. Chris and I took Ivy to Doernbecher early in the morning. We went back to the prep area and put Ivy in a sweet little hospital gown and waited for the nurses to get things in order. The surgeon and anesthesiologist came out and answered all the remaining questions we had. When it was time for surgery I got to carry Ivy to the "kissing corner" where Chris and I gave her a kiss and told her we would see her soon and then the nurse took her to the operating room. I had held it together up to this point because I really didn't want her to see me cry or sense my anxiety. The tears started as I gave her a kiss and then they really started after we turned and walked away from her.

My mom got to the hospital after taking Lily to school and the three of us went to breakfast and then back up to that waiting room to talk, do crossword puzzles and wait. About halfway through the surgery the nurse called us from the operating room and told us that everything was going well. Ivy handled the anesthesia really well and the surgery was going to take a couple more hours.

When the surgery was done, the surgeon came out to talk to Chris and I about what to expect when we go to see her. After that we waited about twenty minutes more before we could see her. We walked back to the recovery area and saw her laying in the bed. Her face was swollen and bloody and she was just coming out of anesthesia. Her lip was together and she had nasal stents in place. These looked like two straws up her nostrils that were stitched in place. She was groggy and still highly medicated so she was just laying there staring at nothing. She didn't recognize my face. That was hard. I know she knew me but the meds kept her from reacting. She looked different but that was mainly from the swelling. After just a few minutes we were able to walk with her rolling crib and take the elevator up to her room where we would stay the night. I tried to stay where she could see me because she looked so unsettled. We got to the room and the nurse took some time getting the wires all reconnected to machines and got her settled in her crib. Chris and I touched her and talked to her and told her she was okay. When the nurses finished I was finally able to pick her up and hold her. She was so out of it from the meds. She was in pain and groaning and it was hard to hold her in a way that seemed comfortable. She had wires and an IV connected to her foot and arm restraints on her arms. Her face was swollen and she was in pain. It was hard to see. I just held her for a long time while she fell asleep. My mom had been there all day with us and then we were joined my my dad, my sister, Lily and Chris' parents. Everyone tried to just be calm and quiet so that Ivy could sleep because when she was awake she was in pain. After everyone left I took a nap while Chris held Ivy. I knew the night would be long so I wanted to be prepared for it.

Ivy had a pretty predictable routine. She would wake up in a lot of pain and cry and groan. We would give her meds and try to feed her and then she would moan and groan until she fell back asleep and then three hours later the cycle started again. The nurses came in often and checked all her vitals which would wake her and she would cry more. The next morning was more of the same but Ivy was stable and the pain meds where keeping her pain under control so we were released.

The next few days are a blur of giving pain meds, cleaning the wound, sleeping and trying to get Ivy to eat. Each day got a little better and a little better. The wound healed and Ivy's sweet and happy personality started to come back. On the fourth day after surgery we got to see a glimpse of her new sweet smile. Despite Ivy appearing to be on the mend she still was in a ton of pain specifically when we cleaned the wound under the nasal stents. The skin looked very raw and I thought the wound might be infected so I made an appointment with the surgeon for the following Monday. At that appointment the surgeon removed the nasal stents and we were able to see how raw and irritated the skin was under the nasal stent. We had been unable to clean the skin under there enough for it to heal like the wound on the lip. The rest of the week Ivy was still in a lot of pain when we cleaned that skin that was under the nasal stent but after a few days the skin started to heal.

The second and third week after surgery kept getting better and better until we were able to wean her completely off the pain meds and she was ready to be out and about more. She had to wear the arm restraints for three weeks up until the three week post op check up with the surgeon.

It took a few weeks to get used to Ivy's new look. I adored her cleft lip so much. I felt she was the most beautiful little baby with the sweetest little "wide" smile. There was a big part of me that didn't want her to have the surgery. I loved her just the way she was and I never want her to think that we got her the surgery because we didn't like her cleft lip. I was afraid that I wouldn't like her new lip. I know it probably sounds funny but it took me a few weeks to mourn the loss of her perfect little cleft lip and to fall in love with her new perfect little lip. As I watched her heal over the weeks I realized how little the surgery actually changed her. Her eyes still had the same sparkle. Her chubby little cheeks still looked oddly out of place on her skinny little body. The top of her head still had no more than peach fuzz. And the best part about surgery was that afterward she no longer has to wear the NAM!

It is now two months later and Ivy is doing great! Her lip look wonderful. The surgical site has healed up wonderfully and her nose is still perky. We continue to massage the surgical site in hopes that we can get the scar tissue to relax and her lip will come back down as it is pulling up slightly now. She is so beautiful and amazes us everyday by just being her. We love her so much.

READ POST BELOW BEFORE WATCHING - GRAPHIC

READ THIS BEFORE WATCHING VIDEO!

As some of you know, I am a member of an online community of moms that also have children with clefts. They have been a wealth of knowledge and a source of comfort, support and encouragement. They have amazing little boys and girls at all stages of the cleft journey. Some are just finding out via ultrasound and others have children that are already in grade school. A few of the member themselves were born with clefts. It's fun to find families in the same area or that go to the same hospital with the same surgeons. It make it feel less lonely. They are always so eager to offer advice and support and I have a very safe place where we can post pictures of our kiddos and not have to explain anything or think about what other people are thinking. They even help each other out by sharing stories and even supplies. Like on mom sent me a pair of special arm restraints that are more comfortable then the hospital issued ones. Another mom had sent them to her to use and when I am done with them I will send them to another little one about to have their first surgery. I really can't say enough about these amazing moms and their adorable kids. I wish I could steal a few of their pics just to show you how sweet and precious they all are!

So, the actual reason I wanted to write tonight was to share with you a video that one of the moms posted. It is of her son's cleft lip repair surgery. It is a great video that explains the cleft and the repair. If you are curious about the surgery then you can watch the video. However, if you are AT ALL squeamish about surgical procedures and blood (there isn't too much blood) then you should not watch or turn your head when they are in the operating room because they do show pieces of the actual surgery happening. To view the video see the post above.

What's new??

Ivy turned three months old on September 19th. Wow how the time flies! My great friend Angie took some awesome pictures of her! I opted to take her NAM and tape off for the photo shoot in order to really capture who Ivy is. I am so happy that I made that decision. The pictures turned out incredible and really highlight Ivy's perfect smile! Ivy is scheduled to have her lip repaired on November 1st and it is really bitter sweet. I LOVE her sweet face and "wide" smile, as it is referred to in the cleft world. She couldn't be more perfectly beautiful to me. She will look different after the surgery so I am trying to take every chance I get to savor her natural beauty because she will never look the same. It is hard to get my head around that. But, as always, I try to find the upside to everything and so far I have found two upsides to surgery: 1 - I get to go shopping (we need side snapping shirts for Ivy so we don't have to put clothes over her head) and 2 - there is a Starbucks in the lobby at Doernbecher so I can get a cinnamon scone every morning we are at the hospital if I want! Mmmmmm.....cinnamon scone.....

On another note....Ivy is being a bit of a stinker! She had developed reflux which we believe has been caused by a food sensitivity. She has been extra fussy and cries during feedings. She is so wiggly trying to pass the gas in her tiny gut. It is hard to watch her be in such pain and discomfort. I have cut dairy and nuts out of my diet and I am also off sugar (including all fruits) right now because I am battling a yeast infection in my breasts. I am not exactly happy...it's hard to find stuff to eat and still avoid those things plus some other foods like soy that people are commonly allergic to. The upside is that I have lost about 7 pounds in the last week and a half. The biggest concern I have though is to continue to take in enough calories to keep my milk supply up. I feel hungry almost all the time but that is probably more in my head than anything else. Hopefully Ivy will have some relief soon from this issue and we can figure out exactly what is causing it so I can avoid those foods in the future. And hopefully this doesn't mess with my "Mmmmmmm........cinnamon scone..." plan.

Lily is a fourth grader!

Lily started fourth grade today. I can't believe she is that old!!! Wow...it seems like not long ago I was dropping her off at her first day of kindergarten. She had a great first day. A couple of her good friends are in her class and her teacher loves peace signs so Lily thinks that is cool. The classroom is decorated in dogs and her teacher refers lovingly to her class as the "dog pound." So Lily gets a kick out of that!

Ivy and I are officially on our own during the day! I look forward to getting into a better routine so that I can get more, or anything, done during the day. My goal for tomorrow is just to take a shower! Oh, and pump more than once...that would be really helpful! So if someone can let Ivy know that she should nap so mom can pump, shower and eat that would be nice. I keep trying to tell her but she doesn't listen to me....it's all about her!

Newest member

I want to introduce you to the newest member of Ivy's NAMMY WAHMY....it's her Nasal Stent! This is permanently attached to her NAM with a wire. It is made from a softer acrylic material than the rest of her NAM so we have to be careful not to damage it. The purpose of it is to help shape the cartilage in her nostril as she grows so that after surgery both of her nostrils will be rounded instead of having a flat nostril on her cleft affected side. She has adjusted very nicely to it. She only seems bothered by it if it slips into her nose a little too far but that is easily fixed with some Fixodent on her NAM.

The orthodontist said that it will be about 7-9 more weeks before her surgery. They are going to be scheduling it soon. I don't really want to think about it but it is coming quick!

Craniofacial Acceptance Month

Did you know that September is Craniofacial Acceptance Month? Well now you do! You can check out this website, http://www.ccakids.com/, to learn more about various craniofacial conditions. Cleft lip and palate are the most common but there are many others. So let's celebrate all the faces out there: big, small, short, tall, clefted and not. Happy Craniofacial Acceptance Month!!!