Sunday, May 30, 2010

The BOYS are here!!!!

Well, if official. The boys have taken over. For years, it's been all about pink, princesses, fairy tales and all things GIRL! Now, Calee and I have been taken over by trucks, trains, tractors, and all things BOY! It is so funny to me. Calee and I decided at about 8 p.m. last night we were going to have a "girls" night out! We loaded up and went shopping and had a late dinner. During our big outing, Calee said " you better call and check on the boys!" I love to think of Justin and his little boys hanging out and playing. They really are such a joy and have added so many smiles and laughs to our family.  Here is a few pictures showing you what I am talking about! Ames loves CoCo's bouncer! I FINALLY got a smile from Cohen to show you his sweet cheeks and dimples!

Thursday, May 27, 2010

May 27th

Hello everyone-

Cohen is having a good week, the nurse came Tuesday and weighed him. He was 10 lbs. 7 ounces this week! Amazing! She was so impressed!

The nurse that visits us is from Nurses for Newborns. It is a non-profit organization that visits many preemies, multiples, and some special needs babies. It has been a great blessing to us so far. Our nurse, Christen (how could you not love her =) is a former PICU nurse at Vanderbilt. She is really knowledgeable and sweet. She is great with the G tube, so that has been a good resource for us. She also weighs him every week, and saves us a weekly trip to our pediatrician. She will continue to visit for several months, but it will start to be bi-weekly soon, then monthly.

We have been doing more nebulizer treatments this week that normal, since he does seem a little more congested. So far, so good----he LOVES the treatments. I took some pictures during it last night I will post soon. The mask still looks so huge on his little face.

I also realized last night that June 9th, our next Vandy appointments, are in just over a week. I have shoved the thought of Cohen being casted again to the back of my mind. I dread him having cast (s). I keep telling myself it will be fine, he will never remember any of this. Thank Goodness!

Well-----everyone has been asking me what I am doing about work. I have been incredibly fortunate to have had the school year off since November, when I was originally put on bed rest. Justin and I have been talking about this non-stop for weeks now, trying to figure out what the best thing to do is. I carry the insurance, so that has been our big issue. I have made 100 phone calls in the last 2 weeks trying to get things worked out in the best interest of Cohen, and all of us.

The challenge for us has been Cohen's care if I do return to work. Our ENT told us he thought he should be kept out of daycare/mothers day out situations for at least 2 years. We completely agree with him-we don't want to take any chances on compromising his health. That being said, we haven't had success in finding in-home care for him, so as of now, I am not returning to work this school year.

It is bittersweet. I want and feel a need to stay home with Cohen for at least his first year. I think I can meet his needs better than anyone else can. I do think by next summer, when Cohen is 18 months old, we will know more about what his specific/special needs are, if any. I then will decide rather to go back to school or continue to stay home. In the meantime, I am also going to do an online program and add a couple more teaching endorsements to my license.

I know I am like a broken record, but I do love my job and school. Many of my closest friends are also my co-workers. I will miss all of you! I will ovcourse be at school plenty, with Calee being there. Speaking of Calee, she is having a little bit of a hard time with me not coming back. She is used to me being right next door, being able to hop over and talk to me anytime. I know she understands, but it is still a change for her. Calee is such a trooper, I am so thankful for her sweet spirit and attitude through all of this.

I have a HUGE respect for stay-at-home moms. I just have never really been one. I took one school year off when we moved here from Lebanon, but I worked as a sub and had Granny and Granddaddy to care for then. I am sure I will love it, it's just going to be an adjustment! I have already started making a daily schedule for Ames and Cohen. Ames will go to MDO on Tuesdays and Thursdays, then stay home with us the other days. I am planning music, art, bible, fitness and reading times so far. Hopefully they will have a good, long NAP time as well. (I will need it =) Calee is going to help me start all this during the summer, she is going to be the art teacher. (I can just see her, sitting at the table trying to get Ames and Cohen to cooperate for art projects)

Once we made the "final" decision,  Justin's only question was, "so if you stay home, you'll cook every night, right?"

Please pray for us as we start this new chapter. I am excited, but nervous. Thank you for the ongoing support and love for our family. We love you all.

Sunday, May 23, 2010

5 months old

I can't believe it has been a week since I have written! My excuse is we are having a hard time with our internet service. It is just so slow and unreliable! I guess that's what we get for living out in the country. No pizza delivery and no DSL!

Cohen is 5 months old today!!!! It's unreal to me that we have already hit the 5 month mark. I guess since he has only been home a month I feel like he is younger.

He is doing just wonderful- He is more playful and alert everyday. He even laughed out loud for the first time this week. It was while taking a bath...he LOVES a bath. We give him one every night just because he loves it so. I have tons of new pics to post if the computer will cooperate! He is just getting so big----he weighed 10 lbs when the nurse came last Monday! 

Things with his G tube are much improved. He still has some granulation tissue around it, but it is not much. It has been almost 2 months since the surgery and it seems to be healing and working correctly. I can't tell you how thankful we are for this--Justin and I were stressed to the max with all the G tube drama!

We have had a super busy week. Calee had practice every night for her dance and musical theatre recitals. She was in 2 shows yesterday, and she did great! Justin's sister, Amy, offered to watch Cohen last night so I could go and watch her. I was so thankful-----Calee works so hard all year for this, so I am thrilled I got to be there!

Calee heard from a friend at her dance studio about an audtion at the Murfreesboro Center for the Arts. She talked me into taking her last Sunday night. I was reluctant for her to do this with everything else we have going. Calee is a real joiner---she loves to try everything. I am so thankful she has this attitude, but it makes for some busy, busy schedules!

Anyway, she was amazing----I was shocked at how she jumped up on that stage and belted out her audition song in front of a huge group of strangers! ( I was a nervous wreck) She got a callback for last Thursday, and then they called yesterday and offered her the part of "Baby" Louise in the play Gypsy! She is beyond excited! The play will run 3 weekends in September. Come out and watch her!

I feel like we are all getting in sync with Cohen and adjusting really well. Ames loves him and asks to "hold it" all the time. He is such a mess! Cohen and I sat on the porch tonight and Justin set up a sprinkler for Calee and Ames. They ran and laughed until they were ready to drop!

I am constantly amazed at how fast life can change. The last 5 months have been the most challenging and the most rewarding of my life. We have been blessed beyond belief by baby Cohen. I feel like God has granted me a new perspective in so many ways.

 Justin and I are continually floored by the kindness and generosity of people. Thank you to all of you for the love and encouragment you give us daily. We love you each and every one!

Sunday, May 16, 2010

May 16th

It has been a great weekend! My mom, Lulu, came to visit and help us with Cohen. It has been wonderful to have some extra hands. She even babysat him so the rest of us could go to church together this morning! It was so nice for Justin and I to be able to go somewhere together. I think the hardest part of keeping Cohen at home all the time is Justin and I split up to take Ames and Calee where they need to be----we aren't used to that! Cohen has loved all his "Lulu" time!

Here are some pics we took this afternoon....I am so excited Cohen can now wear this outfit my friend Sara got him. It's one of my favorites! I think green might be his color!

Thursday, May 13, 2010

May 13th

Good Morning!
Cohen is having a good week. He is keeping us really busy----day and night! He is going through a little "phase" (I hope) where he does not sleep much at night. He goes down really well at about 10:30, sleeps until about 1 a.m., and then that's all she wrote! He is up and down every few minutes until he falls into a deeeeep sleeeep about 6 a.m. We usually get up about 6:15 to get everyone ready for work and school! Needless to say, we are a little tired, but that's a small price to pay for such a precious little man!

The new "mini" button the G tube clinic put in is working well. It does still leak some, but not like some gushers we have had before.  Hopefully this one will last us a while.

We have started increasing his nebulizer treatments a little, since Cohen is having some nasal congestion and a little cough. I am terrified he will get a cold, or worse------I know this is a silly fear and I am aware I can't control this completely, but I am still freaked out by the thought! We are just praying with the hot summer months coming he can stay healthy. I told Justin I am going to go ahead and order a "bubble" for him for the fall and winter!

Hope everyone is having a good week. Usually at this time of year, I am counting the days (and sometimes the hours) until school is out for summer. This year, I am missing all my work buddies and sweet students! I am excited about Calee being home for the summer. She will stay busy with lots of theatre camps and activities, but it will be nice to have her home!

Here is another pic of our little sleeping "sweetie"!!!!

Monday, May 10, 2010

Vanderbilt Ortho/Nutrition Update

Cohen has had a busy day with lots of appointments. He was a real trooper through it all. He never made a peep until we were almost back to our house!
We started out with the Nutritionist at 11 am. He weighed 9 lbs. 8 ounces! Justin and I thought that was great! The nutritionist did not really agree---she said he needs to have gained a little she upped his feeds. In the "growth curve" she showed us, he was going up but still under the line of a "normal" 4 1/2 month old weight (of course). The part I disagree with is they are starting the chart with the weight he was when he came to Vandy on March 1st. They aren't counting the 4+ lbs. he gained while at Baptist. He only ever gained just a few ounces at Vanderbilt total. Regardless, he is doing great in this area! I mean, 9 lbs! That is amazing considering everything he has come through.

After that, we ran over to the G tube clinic just to let nurse Toni take a peek. We felt like the tube was "loose" yesterday due to granulation tissue around it. Turns out, his mic-key button balloon was busted AGAIN! She said to have 2 busted balloons this soon is unheard, she put in a mini-button to try this time. It's smaller and seems good so far. We will hope for the best! SO glad we ran by there, we would have likely been making the trip tomorrow or tonight when it popped out!

The last appointment was with the Orthopedic doctor. Let me back track on this a little. Cohen has been seeing an pediatric ortho doctor from about day 5 or 6 of life. The first one we saw at Baptist originally told us nothing needed to be done. Then he came back about a month or so later and put cast on him for 5 days.

When we moved over to Vandy, I requested that we have a new ortho doctor for a 2nd opinion. My main reason is because the 1st one would not call us back after we missed seeing him at the hospital. He never consulted with us on any decision. I guess he just did not communicate well, and I just didn't see dealing with that long term. I am really glad we made the switch. Our Vandy ortho doc is great. He is really down to earth and understands he is working with our tiny baby! He does think he needs a series of casting. We will go back June 9th to being the process. The good news is he thinks that is all he will need. I point blank asked him if he felt Cohen's left foot (the one he doesn't move as much) will be a working limb he can walk on. He said he was almost certain it would be. He said the worst case scenario would be an outpatient surgery in a couple of years to clip the heel cord, but only if casting doesn't fully fix the problem. I felt like this news was as good as we could expect. All in all, it was what we wanted to hear.

It was a good day at Vandy. Much better than last week. We even ran into Dr. Walsh and Sunny in the hall! (our old NICU doctors) It was great to see them, and they made a big fuss over how great Cohen looked.

We are thankful for great doctors and nurses who will be continuing to look after Cohen for years to come. Our prayer today is for Cohen's continued healing and strength. Love to you all.

Sunday, May 9, 2010

Mother's Day

What a special Mother's Day this has been-----finally having all 3 children under one roof is a perfect gift.  It has been a great day and I am so grateful.  I hope all of you Mama's have had a wonderful day, and know how special you are to your "little" people. The world is a better place with all of you in it!

I wanted to say a really special HAPPY MOTHER"S DAY to my Mom, LuLu. I hope that my children always feel the love from me that you have constantly given Chad and I. We know how lucky we are-----LOVE YOU!

Cohen has 2 appointments at Vanderbilt tomorrow-Orthopedic and Nutrition clinics. I feel like he is making great progress in both the areas, but I am a little unsure of what the ortho doctor will think.  I sort of hope they don't want to cast him again....but I guess we will see! The last time he wore casts, he was still sick and small and they didn't bother him. Now, that he is big and strong, I think he would have a fit!

We are hoping and praying for a good report tomorrow-------

Ames is really starting to want to "play" with Cohen. He is sooo funny asking to hold him. Here is a pic from last night. Ames was super excited and Cohen wasn't so sure.....

Wednesday, May 5, 2010

First Vanderbilt Appointments

Cohen had his first couple of specialist appointments in clinics at Vandy today. We have been seeing these doctors for months in the NICU, so it was strange to actually go to the offices and see them.

Justin and I made sure we left home super early this morning, so we would have plenty of time to get there. We sat in traffic for about an hour and barely made it to the first appointment. The interstates and side roads in Nashville are still having a ton of problems from the unbelievable floods we had here in Middle TN over the weekend.

Our first stop was our ENT (ears, nose, and throat), Dr. Wooten. Out of all the specialist we will see/have seen, Dr. Wooten is one of the most trusted.(we see over 10!).We met him early on when he came to Baptist to see Cohen. He always knows us and remembers lots of details about Cohen.  He has continuously been positive, but given us honest, good information. He is also great about calling, or waiting to talk to us and make sure we know everything going on with our baby. (he gets big points w/me for that)

I am not certain if I have mentioned this before on the blog, so let me back up for a minute. Dr. Wooten is who originally diagnosed Cohen with the laryngomalacia and subglottic stenosis,  and initially referred us to Vandy. He also discovered that Cohen has a paralyzed left vocal cord. This was found after surgery-(the cord moved before surgery)---sometimes this happens after babies are intubated. Some other reasons this could happen are sensory and neurological issues. We had hoped no matter what the reason, it would be healed by now.

 So, he did a full checkup on Cohen today, looking at his nose, ears, etc. He also did a "scope" down his nose and looked at his vocal cords and voice box again. I think this is the 6th time he has used this scope on Cohen. I have gotten to watch at least 3 of these. When he does this, we are able to watch on the screen in the room. Before Dr. Wooten said anything, I could tell that there was not improvement in the vocal cord. The left one just didn't move. He also still  had tons of secretions pooled in the back of his throat. Basically, the scope showed no advancements.

Dr. Wooten made a tentative "plan" for the next few months for Cohen's care. He reminded us that it is of utmost importance to keep him healthy---do our best for him not to get a upper respiratory infection of cold. He also is going to repeat the scope in October, and do a full bronchoscopy again in the O.R. in November. The only really alarming this he told us today is Cohen is still a possible candidate for a tracheotomy. Basically, if Cohen's small airway doesn't grow, and his swallowing does not improve, his airway will be too small for him to take the deep breaths he needs. It would be like him breathing through a snorkel all the time. Dr. Wooten also wants to repeat the MRI this fall. He is still not ruling out some neuro issues like a kiari malformation.

We have spent months praying for Cohen to come home, and thankfully, our prayer has been granted. I can't tell you how wonderful he has been here at home-----I think we have focused so much on how great he has done in the the last 2 weeks, that we forget he is still dealing with these issues.  I think part of me hoped some of this would just "disapear" and we wouldn't have to worry about it any further.

Today was a reality check for us. Now, let me say this. He has only been out of the hospital 2 weeks. That is not much time---All this could take up to 2 years to heal and work itself out. We ask that you pray for Cohen to remain healthy and continue to grow stronger everyday.

As for the G tube appointment, it went fine. The tube still has a mind of it's own---leaking and being all around difficult at times. The practioner gave me some new cream to put on it, and we go back in about 6 weeks.

Next week we see the Orthopedic, Pulmonary and Nutrition clinics. I think these are the areas he HAS improved on. I will update you after these appointments.

We still remain hopeful that Cohen will overcome ALL of this. He has proven over and over again how strong and willful he is! He is such a joy to us. I can't wait to share him with all of you. (as long as you don't have a cold or any contagious illness =) Thank you for your love and support as we start this new road of Cohen's journey.

Sunday, May 2, 2010

May 2nd

WOW----We are so thankful that Cohen is home and we are not traveling back and forth to Nashville in this weather. Vanderbilt Children's Hospital is flooding--the pictures on t.v. are unreal. I can't imagine all those parents with babies and children that can't get to them. I would be a complete basket case!!

We haven't had near the rain/flooding here at home. We are praying for all of our buddies in other areas that have been hit so hard by this storm.

Cohen is still doing wonderful---he seems to get stronger and healthier everyday. He is really coming into his personality. He smiles so much, and will mimic when I stick out my tongue and stick his out. So cute. The G tube is still giving us a little trouble, but not as bad as it was last week. Cohen does have an appointment at Vanderbilt this week to see the ENT doctor, and we will probably see the practitioner about the G tube while we are there, just to be sure all is well.

Here is a pic of our little Cohen Bear! My brother Chad always called Calee, Calee bear when she was little, so she loves to call Cohen, Cohen Bear!    

Love from Cohen Bear to all of you!!!