Friday, May 28, 2010

Memorial Day Weekend

Another busy week over. I am so looking forward to the long weekend and spending time with Jesse (and Paul). Paul gets to be with him all week and I must say I am slightly jealous. He does have his hands full and I am sure I would too if I were in his shoes. Someone has to work. I have a half day today, so 3 1/2 days off! Maybe I'll get some sleep. Plus, the weather should be beautiful. We invited people over on Sunday and Monday I think we are going to my sisters. They haven't seen Jesse in like a month. Jesse had his weigh in on Tuedays and Thursday Paul had another steroid injection, so we are due for some relaxing. We are going to find somewhere to walk this afternoon, maybe the zoo again or just walk around in downtown Naperville or something. Walking is good for his back. Him and Jesse walked in Naperville after his appointment on Tuesday, he was still talking about it yesterday how much he enjoyed himself. I plan on taking lots of pictures this weekend, hopefully I actually do. I usually get caught up in things I forget the camera. Some photographer I am. Ha ha

Wednesday, May 26, 2010


It's a Go!

So 2 weeks ago we were at the plastic surgeon. They said Jesse wasn't gaining enough. He was averaging 23g a day and his target was 25-30g a day. He was 9lbs 1oz. Today they said he's averaging 30g a day. He's 9lbs 15 oz! He's cleared for surgery as long as he's good at the wellness check with the pediatrician in 2 weeks. He's getting his shots then too, so we must hope for no reactions to them.

Monday, May 24, 2010

Canoe Trip

We had a blast! I think the time away was good for both of us. Jesse stayed with Paul's parents and that went really well! What a relief! He didn't really eat as much as he should have, but overall he did well with them.

The canoe trip was a blast and we had perfect weather for it. Not too cool and not too hot. I think it was in the high 70's. Plus there was no drama. We like it when there's no drama. There were 12 of us that did the canoe thing. We tied all the boats (6) together and just floated down the river and did some drinking and laughing. It was awesome. We got back to the campsite, cooked dinner and almost everyone passed out. We stayed up and hung out wuth Becky, Rory and Shawn. Lots of laughs are good for the soul.

Friday, May 21, 2010

My first week back at work

Well, I did pretty well for my first week back at work. My boss helped by having a beautiful bouquet of flowers here when I arrived. He also took me out to lunch on Monday. I probably needed the break from Jesse and Paul. Yesterday I started feeling like I was missing out on things at home, but I am thankful Jesse is home with his Dad and not at daycare. So I am a little jealous of Paul in that sense. This week I did some research and sent out some emails and got connected with some other mothers of children with clefts. It's nice to know I am not alone. Not just being a mother of a child with a cleft, but I am not alone in my thoughts and feelings. By exchanging emails and seeing their pages I realized I didn't need to hide this, so I posted his picture on babycenter and facebook. I am not sure why I was hiding it, but I was. He's beautiful and there's no reason why I can't share that.

We are going on a canoe trip tomorrow, then camping overnight. We are leaving Jesse with the MIL. I am thankful we have her to watch him, but she's not my favorite person in the world. I am a little nervous about the whole thing. Plus, I feel like I have hardly seen him all week, now I am giving him away overnight? Paul says I need this. I think it's him that needs it, or us as a couple. I must be crazy for agreeing to this. I suppose if I am miserable, we don't have to spend the night. I hope I can just let loose and have some fun. Even though it's been an emotional week for me.

Thursday, May 20, 2010

I think I am mostly caught up

I will say, being a mother is amazing. I love every second of it, even if I am exhausted at times. I admit, I do have bad days. Sometimes I feel a lot of guilt. Sometimes I have a lot of stress too. I think back to my pregnancy and try to figure out what I did to cause this. The truth is no one really knows what causes it. There are certain medications (like siezure, anxiety and depression medications) that are known to cause it, but I didn't take any of those medications. I didn't take any medications when I was pregnant except Benedryl and Tylenol, which are both approved. In my third trimester I took Ambien a few times, but that's also considered safe. The face and palate are formed between 5 and 10 weeks of gestation, so I keep trying to recall what happened then. I can't come up with anything. I wasn't even sick. Even if I could come up with something, it's not like I can go back in time and change it. My aunt told me, "God game him to us for a reason. He was given to us because we are strong and can handle this." I am not even a very religious person, but that meant a lot to me.

We saw the plastic surgeon again last week, she said we could schedule his surgery, so it is set for June 30th. I thought it was hard watching Paul go into surgery, now I have to watch my 3 month old son go through it. It's scary. We just have to make sure he's eating enough between now and then so he's healthy enough to go through it. He will get checked 2 weeks prior to make sure he's gained enough weight and has nothing else going on. The first surgery will repair his lip and nose and he will also get ear tubes. If all goes well it will be an outpatient procedure. When he gets the palate repair (between 6 and 9 months) he will be in the hospital for a few days. Both procedures are being done at Edwards, so at least it's close.

Aside from all this we are dealing with Paul and his back. He isn't getting any better. It's nice that he's able to be home with Jesse while I am at work, but I wish it wasn't under these circumstances. He's going to need a bone fusion. We don't know when yet, I hope we have plenty of time for Jesse to heal before I have to nurse Paul too. His recovery will be long. 3 months in a brace, 2 months of physical therapy and 2 months of work hardening. Then he has to find a new career. Fun.

At least I am healthy!


So we got home, it was so nice being there. Jesse slept the first day for like 6 hours. I guess he was exhausted from being poked and prodded too! Not only was the adventure of being a parent beginning, but now we had to start seeing doctors and early intervention people. I was scared but interested in what they had to say and anxious about when we can get him fixed up. I wasn't sure how to react to people seeing him. I was a little nervous having visitors. We had family over on Easter Sunday. I think having family over first really helped. They all knew and I didn't need to explain anything.

Our first appointment with the Children's Facial Center was on April 13th. We were meeting with the plastic surgeon, a speech pathologist, a geneticist and the ENT doctor. We saw the geneticist first. She asked us all kinds of questions. She asked about our family history, if I took prenatal vitamins, if I took any prescription medicines, if I had any major illnesses during pregnancy, stuff like that. It got my wheels turning. I started thinking more about my pregnancy, looking for something, anything to blame it on. There was no family history of clefts, so I thought it had to be something I did. The geneticist said that this happens 1 in 700 children and there's no concrete evidence of what causes it.
Next we saw the speech pathologist. She wanted to see him eat, so I fed him. She was quite impressed. She said he was a "good sucker". We just need to keep using the preemie nipples with a cross cut in them. No special bottles needed! She even got her video camera and recorded his eating because he was doing so well. She mentioned that he will probably need speech therapy later in life to help him with certain sounds, but all in all, he's doing really well.
Next the plastic surgeon came in. She explained how she does the surgery and she showed us her before and after pictures of other children. I must say, she does nice work. She told us he would be able to have his first surgery (for the lip) between 8 and 12 weeks if he's growing and developing properly. He's need to come back in a month to be checked and make sure he is gaining enough weight.
Then the ENT. Aside from their office being overcrowded and waiting over an hour, seeing him wasn't too bad. He checked Jesse's ears and said they already have fluid in them, so he's need ear tubes put in when he gets the lip surgery. I have had ear tubes, so I know it's not bad at all. He said that he may need several sets in his first couple years and if he will need them through most of childhood, he would put perminant ones in so we wouldn't have to keep going back over and over.

We had a sense of relief after we met with everyone on the team, but I must say that I started thinking more about the questions the geneticist asked. I still wanted something to blame the clefts on. I wanted a reason.

Monday, May 17, 2010

The Day After Birth

The next morning I was a mess. Woke up crying. I was so confused. My baby wasn't in my room, he was in the NICU. At least now I could walk, the feeling in my legs had finally come back from the epidural. I wanted to see Jesse but they wouldn't let me. The doctors were doing rounds. They said it might not be until 11 or 12. They don't want visitors during rounds to protect the privacy of the other patients. So I wait. Paul was very upset, made some comment about "a child should be with his mother". Around noon another doctor came in and told us that Jesse was being released from the NICU! The heart murmur had gone away. He explained to us that many babies are born with it and it usually goes away within the first 48 hours. They wanted to make sure that because his lip and palate weren't fully developed, that there wasn't a larger concern with his heart. My sister and mom came to visit that day. Paul went home in the afternoon to try and get some sleep, he wanted me to get some sleep too. I couldn't sleep. In the early evening Paul's family came for a visit. We told the nurses we only wanted immediate family visiting, unless approved by us. We were very fragile, me especially. You expect your baby to come into the world and be perfect, but it doesn't always happen that way. I was thankful there was nothing more major wrong, but it was still very shocking.

While Paul's family was still there we got a visit from Dr. Semba, a plastic surgeon. Paul's family left so we could have some time with her. She told us she had a team of specialists to get Jesse all fixed up. He would need multiple surgeries to repair his lip and palate. She also had a speech pathologist, ear nose and throat specialist, and a genetisict on her team. She spoke to us for over an hour and told us what would happen. His first surgery would repair his lip, around 3 months of age. Between 6 and 9 months he would begain repair on his palate. This happens 1 in 700 children born. I had no idea and it's totally fixable. The question still in my head was why? What causes this to happen? Did I do something to cause it? We would find out more when we go see Dr. Semba and her team in 2 weeks.

Friday we were released from the hospital, BOTH of us! The pediatrician checked out Jesse and aside from the cleft he was healthy. I got checked by my doctor and I was healing well, so they let us both go home. The photographer even came in before we left and got some awesome shots! We got home about 3pm and our new life began.

Saturday, May 15, 2010

The Reality

The first moments after giving birth was a whirlwind of emotions. The first one was relief. I was so glad the labor was over. It was so hard. I had a few moments to breathe. The doctor said something about a cleft. I had no idea what that was, I was scared and confused. They placed him on my stomach and Paul cut the cord then they took him to examine him. I heard cleft again and I heard "his palate is in tact". I wasn't sure what was going on with him but I knew something wasn't right. They cleaned him up a little and brought him over to me. This was the first time I was able to see his face. His eyes were wide open. I looked at him and soon put it together. He had a cleft lip. I said to myself, "ok, I can handle this, just a little lip thing". I held him and looked into his eyes for what felt like hours. I tried feeding him but he didn't want to feed off me. Understandable because he had a hard time making a good seal with his lip. After about an hour or two they told me I could move to my room and they would take Jesse to the nursery to get cleaned up and they would bring him to me. I went to my room and Paul stepped out to have a smoke with Dave. I got to my room and got settled, Paul came back and they still hadn't brought Jesse to me after his bath.

Some more time went by and we called the nursery, but weren't getting any answers. Around midnight a doctor came in. He informed us Jesse was in the NICU, he called it the special care nursery. What?!? Why? He told us that Jesse had the cleft lip AND palate. They also found a heart murmur. That's when the emotions really hit. The doctor didn't speak very good English, so we really weren't too sure what was going on. He said we could see him in about 45 minutes, someone would come and get us. An hour went by and no one came to get us, so Paul went looking for him. There was no one around and Paul wandered the halls looking for this special care nursery the doctor spoke of while I waited for a nurse to bring me a wheel chair and take me. I wasn't able to walk still from the epidural. He came back because he couldn't find it. Finally a nurse came and they wheeled me to the NICU, I think it was like 1:45am. He was beautiful and sleeping. I held him for a good 1/2 hour then we went back to our room and I just cried. Nurses kept coming in to check on me, to have me pump breastmilk, take blood. By the time they let me relax and try to sleep I like it was 4:00am, then it all began again at 6am.

Thursday, May 13, 2010

Baby is here!

After my last post I went to the doctor and she told me that I started labor and my body was ready to have this kid! So she scheduled me to be induced the next day. We went in bright and early on March 31st, they got me hooked up to an IV and started giving me petocin around 8am. Soon after the real contractions started. They were uncomfortable but not unbearable. I decided I was going to hold off on the epidural for as long as possible.The contractions got stronger and more frequent as the day went on but I wasn't dilating more. My doctor came in and broke my water, that's when the real contractions began to happen. My family visited. The pain of the contractions got worse. Around 2-3pm I asked for the epidural. It worked, for a while. When my contractions got really strong it no longer worked so they turned it up.
The baby was facing the wrong way, "sunny side up" so my doctor had me on my side hoping he'd turn. I dilated more and around 6pm I felt the need to push, so the pushing began. He was still facing the wrong way so I pushed for a long time, I couldn't get him out! It was even harder because I couldn't feel what I was pushing, due to the epi. They turned it down, but it didn't help much.
At 7:45pm he was born. I was so relieved it was over. Paul cut the cord. Someone asked what his name was and Paul blurted out, Jesse! So Jesse it was. I was instantly in love.