Wednesday, March 31, 2010

Day 99 Part 2

During rounds this morning the doctors decided they think the infection/fever Cohen has is not caused by a "wound" infection. Now, they are trying to determine if he has pneumonia, a partial lung collapse, or some other virus. They took blood for a viral panel. In the big picture, they said it really doesn't matter what the cause is.....the solution is pretty much the same. Continue antibiotics and keep a close eye on him. 

The only other concern is a test that came back positive for e-coli.  All I can think is who has touched my baby without washing their hands?? Anyway, we all apparently have this in our system and it sometimes "outbreaks" and can cause people to be really sick. They took another culture and will watch it for 48 hours to see if it grows anything.

Hopefully Cohen can overcome all these little complications soon. He was not near as fussy today,  and let LuLu and I snuggle and hold him for hours.

Today was officially the last day for our doctor team. They now move on to some other rotation in the hospital. I have really liked the team, and felt like they all really cared for Cohen and his best interests. One of the residents, (Sunny) and I have formed a sort of friendship. She has been such a blessing to us in our month at Vandy. I cried like a baby when she came and told us goodbye this afternoon. She has definitely left a hand print on my heart. I have no doubt she will do great things with her career.

Thanks to you all for your support and encouragement during this time. We are hopeful that Cohen can be back on the road to coming home soon! Love you to all.

Day 99

There is no doubt now that we will hit the 100 day mark here in the hospital! At school we always have big 100 day celebrations. The kids make posters and have a party. I don't think we will go that far, but I am thankful we are nearing the end of our hospital stay. (I really think we are just a couple of weeks away)

Cohen is calmer this morning, they ended up giving him some pain meds last night. He had screamed and cried for the entire day, which is so unlike him. This let him get a good nights sleep last night. He is still sleeping this morning, so I haven't gotten him out to hold him yet. Mom and I are hanging out waiting on the doctors to round. I want to question them further about the infections and  fevers.

The surgeon still thinks the infection has nothing to do with the G tube.  I honestly hope it doesn't, as I don't want to constantly be concerned about it being infected.

They had to move the vapotherm back to 3 liters last night. This morning he is using 30% oxygen. That is up from the last 2 days. The nurse said its probably just because he doesn't feel well. Still not sure if they are going to put in another PICC line. Should find out today.

Will update you again soon!

Tuesday, March 30, 2010

March 30th

Yesterday I told you Cohen was vocal and crying----well, crying turned into screaming and obvious discomfort. He spiked a fever about 5p.m. They thought the "G" tube was infected, so they called the surgeon to come and check. He didn't come, but called on the phone and said that this was normal. So, they then assumed the PICC line removal could cause a small infection and blamed it on that.

When I got there today, Cohen was still super cranky, the "G" tube was leaking and smelled. When I found out the surgeon STILL hadn't been by, I was furious. We are only 5 days after surgery, and he hasn't checked on him since Sunday morning? They paged him and told him I was there and wanted to see someone. They sent an intern who literally told the nurse and I he knew nothing about "G" tubes---then the nurse practitioner came and looked. She is the one that you see in the office with "G" tube problems, so she knows her stuff. She thought it did not look infected, but was concerned about it leaking.

So here we are....the surgeon said he would be by later today. He is supposed to call me----we will see if he does. I just don't think its too much to ask for them to come and check, especially since he is starting on antibiotics due to the fever. 

The good news is it's not affecting him as far as the vapotherm goes. They turned him down to 2 liters and he is on room air. Yeah! They are talking about putting in another PICC, which I am not excited about, but may have no choice. They have to have IV access somehow.

The poor little man can't catch a break! Hopefully this will be a small obstacle that is figured out quickly. Talk to you all soon.

Monday, March 29, 2010

Day 97-March 29th

Good Morning from Cohen! He is bright eyed and soooo vocal this morning! That is my nice way of saying he is crying....we think he has some air in his tummy from being back on the vapotherm. We are "venting" the G tube now, trying to get some of the air out.
Cohen is also finally getting his PICC line out today! He can wear hats again---and let me tell you, with that huge bald spot they shaved he is going to need a hat!
Also, we moved down to 3 liters on the vapotherm, and he is using about 21% (room air) on oxygen. Its a GREAT day so far!

Since our doctor team is changing completely, I caught a few of them and took their picture this morning. They weren't that excited about it--but they were good sports.  I also took a shot of our 2 primary nurses here at Vandy.

This is only about a a quarter of the team, but I took what I could get! Left to Right-Resident Angela, Resident Sunny, Neonatologist Dr. Walsh Primary Nurses Rachel and Susan

Sunday, March 28, 2010

Welcome to Holland

My new friend Kim sent this to me a few days ago. It truly spoke to my heart. Kim and I were connected by Dr. Haynes at Baptist. Kim's precious daughter, Mary Farris ,was only 1 lb 3 ounces at birth, and spent 148 days in the NICU. She also had over 6 surgeries. She is now 22 months and nothing short of spectacular! They are an awesome family and Kim is kind enough to be my "G tube buddy" teaching me the in's and out's of it all.

Let me also say this. We don't know exactly what the future may hold for Cohen. We do know we will appreciate EVERY milestone and moment as they happen. When I was pregnant, and even after Cohen was born, I never dreamed we would have been where we are today. Justin and I have learned so much already-and can't wait to see what else our little miracle will teach us!


Welcome To Holland


by

Emily Perl Kingsley





I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......



When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.



After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."



"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."



But there's been a change in the flight plan. They've landed in Holland and there you must stay.



The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.



So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.



It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandt's.



But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."



And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.



But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

March 28th

Day 96-

Cohen had a calm and restful night. He is MUCH more himself today. We are so happy the doctors took him off CPAP this morning and  put him back on vapotherm (did I really just say that?).  He is on 4.0 liters of flow and about 28% oxygen. We counted up this morning that it took 87 days to get off the vapotherm before surgery......hopefully, it will just be a few days or a week this time!

They also discontinued his pain medicine drip and put him back in his regular crib. Rachel and I even gave him a good soap bath and dressed him. He looks way healthier.

We are a little sad and nervous that our entire doctor team will be switched this week. They only do a month at a time....so we will be back to all new doctors and another learning curve. Hopefully the transition will be smooth. They also told us it might be possible to go back to Baptist after the surgeons clear him. We were excited since we thought this was not longer an option----we will see if it pans out.

On this Sunday morning, Justin and I have had some quiet time with Cohen to give thanks to God for our many blessings. We are so grateful for his improvements and his fighting spirit!!!!

I also wanted to welcome my friend Kari (Caviness) Harvey's little boy Ethan to the world! He was born late last night. He weighed 5 lb. 9 ounces. Kari is very familiar with the NICU in Amarillo and has been a HUGE supporter and blessing to me during our NICU time. She is amazing and I am so thankful Ethan is here and doing great!

Here's a couple of pics of sweet  baby Cohen this morning after his bath.




Saturday, March 27, 2010

March 27th

Cohen's night was better. He is still having trouble with his lungs, the right is back up, but the left one fell last night. All in all, he is still improving. He is more awake and fighting the CPAP (a good sign that he can come off it soon). He is also taking his paci again, we had  worried he wouldn't want it after being intubated again.

Justin and I stayed in one of the "sleep" rooms again last night. It seems we are the only people in them that need actual sleep! All I heard was people carrying on all night! Its like living in a dorm again. We are grateful to have had a shower and somewhere to sleep for a bit--

I haven't seen Ames and Calee since Wednesday night, so I am going to try and go home tonight if Cohen has a good day. Our nurse this weekend, Rachel, is one of your favorite and most trusted. I know he will be in good hands with her.

They are also going to try and feed him through the G tube today....we are anxious to learn how it works and become accustomed to using it.

Here is a pic Justin took this morning----he looks happy on his nice clean bed and sucking on his paci.

Friday, March 26, 2010

March 26th Evening

Just wanted to give a quick nightly update. Cohen seems to be retracting less and working a little more comfortably to breathe. He is by no means back to where he was, but he is less painful to watch. The night nurse is letting him rest and trying not to mess with him too much. We think this is a good plan. Justin and I are both staying at the hospital again tonight. My mom came into town today to help relieve Justin's mom a bit with Calee and Ames. I already feel better since she has gotten here. She was supposed to head to the beach for spring break---we totally messed up her plan! She and I did have a good laugh about Justin's collapsed lung comment this morning.  We tried not to be insulted that he is blaming my family-haha.

J and I  hope to get a few more hours of sleep than we did last night! It's amazing were are both still upright and moving-------

They will do another X-ray late tonight/early morning to check his lungs. We think they will show improvement since he is a little better. Will let you know in the morning.

CPAP

Here is some pics of little man this morning on his CPAP. He has managed to stay off the vent for now. He is still working really hard.....they have ordered another X-ray to see if the lungs are coming back.

He is starting to wake up and look at us some. He is such a little trooper.

March 26th

Today is day 94. We are about 22 hours after surgery. The first 12 hours were great....he was breathing over the vent and looking good.
Then, we extubated. I was so excited about him getting the tube out------Cohen was not so pleased with it. Within 5 minutes, he was retracting his chest and laboring super hard to breathe. It looked awful. They had him on the vapotherm at 6 liters of flow and 40% O2. It wasn't helping. They did an X-ray and showed his right lung collapsed, and the left lung was well on it's way to being down too.
The RT (respiratory therapist) came and did a breathing treatment that seemed to help him a little.  The doctor compared his airway as trying to breathe in a snorkel for many hours.

It has been a long night, needless to say.

As of now his right lung is still partially down but improving. His left lung is looking better as well. They now have him on a CPAP machine and positioned on his belly. He moves air alot better on his stomach. He still looks pretty bad, but seems to be coming out of this a little. The next step would be to re-intubate and get back on the ventilator. Our doctor said they would avoid it unless absolutley neccesary.

This is exactly why Justin and I were so weary of the surgery. The doctors say all this is fairly normal and he should be better in a day or so. After rounds when the team walked out, I said to Justin " they acted like a collapsed lung is normal "and Justin quickly stated " he didn't care what they said, in his family lungs just don't collapse." I had to laugh at him. It's amazing what our new "normal" is!

It has been a long time since we worried about hermdacrites and blood gas levels. These are things we were consumed with in his first days of life.  Hopefully this setback will be fast and temporary. Seeing our baby like this is so hard, after seeing how far he has come.

Please continue to pray for Cohen and his recovery.  We thank you for all your support during this time.

Thursday, March 25, 2010

Surgery Day- 3rd update

Justin and I are basically sitting and staring at Cohen. That is why I have had time to post 3 times so far today! He is doing very well, still hasn't fully woken up, but is starting to wiggle and move his arms and legs. He remains on the ventilator, but hopefully will will extubated soon. They are continuing giving him meds to control his pain.
They were able to do the surgery laparoscopically. He has three small circular incisions in his middle where the camera and arms went in. His G tube site will stay covered for 7 days, so we haven't seen exactly what that looks like yet. He looks pretty good, except he is still painted orange in spots from the surgery sterilizing gunk.
I took some pics from before and after surgery.  This one is before he went into the OR. He was sleeping peacefully even though he hadn't eaten for 8 hours!
The next 2 are in recovery. You can see one of the lesions from the camera above his diaper and in his belly button.

The dreaded ventilator. No, we are really thankful for this machine that can help during surgery. We just hope we don't need it for long!

Surgery Day- 2nd update

Just talked to the surgeon and everything went great. We are in the waiting room hoping to see him soon!!!! Will let you know how he is doing-----

Surgery Day- 1st update

They took Cohen back around 8 a.m. for the surgery. We were told it should take around 4 hours to complete everything. Dr. Wooten, our ENT doctor already came out and talked to us. He performed a bronchostomy before the surgery actually got started. He said Cohen's anatomy looked pretty good, but he did note he has a smaller than normal and oddly shaped airway. It looks more like a football shape than a round hole. Hopefully, this will grow right along with him, but we will have to have him rechecked in 6 months to make certain.  It will be an outpatient surgery type procedure to check.
He said that Cohen will be more likely to be sicker if he got the flu, RSV or anything like that. We kindof already expected that due to the chronic lung disease. We will just have to be careful.

I will keep updating as we get more info. Thank you for the continued prayers.

Wednesday, March 24, 2010

March 24th

Cohen is one week old today! (not really, but that is how they say it now in rounds)
We are hanging out with him enjoying every moment before surgery. We also are still waiting for the surgeon to come by and meet with us. Hoping that happens pretty soon.

In rounds this morning, our attending doctor told us to expect a rough 24-48 hours after surgery. He said it would be more like the early days of when Cohen was born...he will be sedated, lethargic and all around pretty yucky. We are dreading seeing him like this! This morning he is awake, playing and super healthy looking! He has come so far, it will be sad to see him go backward, even for a short time.

We are concentrating on the light at the end of this tunnel---Cohen will get to come home very soon!

Later today we should find out what our surgery "number" is, so we can have a better idea of timing for tomorrow. I will let you know what we find out.

Tuesday, March 23, 2010

Day 91--March 23rd

We have hoped all along Cohen's stay would be under 100 days. I don't know why, I guess 100 days just seems so much longer that 90 something!

Looks like it's going to be close!

 After lots of consulting with doctors, nurses, speech therapists and anyone else that would talk to us,  we have decided to go ahead with the surgery for Cohen. It has been a tough decision, but I do feel like we have waited  an ample amount of time and tried everything they have available. The estimate if we don't do the surgery is 6 more months in the NICU. Then there is no guarantee that he will be healed. I just can't imagine him staying here until he is 9 or 10 months old. More than one doctor told us we would be "insane" not to do the surgery.  I do feel a small amount of  defeat and disappointment that this is where we have ended up.  As you know, we really believed Cohen would outgrow this by his due date and this would not be a choice we had to make. But----this is where we are. We are moving forward and being as positive as we can!

The G tube/ fundiplication/nissen surgery is set for this Thursday. They will also circumcise Cohen and the ENT doctor will do a  repeat bronchostomy while they have him sedated. It's alot for a little bitty bundle! Our neonatologist said he will go home next Tuesday, barring any complications. THAT IS A WEEK FROM TODAY!!!!

Now, that day may change, based on what happens and getting all the home health supplies, CPR training, car seat checks done. But none the less, I am thrilled to have an actual time frame to take him home! I can't wait to have everyone together finally!

In the meantime we are just hanging out holding and loving on Cohen as much as we can. We know we won't be able to for a day or two after the surgery.

We do ask for your continued prayers in the next few days. We are a nervous wreck about the surgery, even though we think it is the right move for Cohen.

Here is a pic of Cohen and Justin hanging out this morning. If I had waited 2 minutes, the picture would have been BOTH of them sleeping!

Monday, March 22, 2010

Repeat Swallow Study

We just finished up the repeat swallow study. We were able to go down and watch this time. Sadly, there has been no change or improvement in the last 3 weeks since the original study. We are disappointed, we really thought that he had improved in this area.  We are waiting on the attending doctor to come and give us the recommendation....we assume they will want to go ahead with surgery. I will let you know what they say.

Cohen has improved greatly in other areas...he is now completely off oxygen/nasal cannula as of this morning! We are thrilled about this! The only downside is that if he does have surgery, he will have to likely go back on oxygen to go home...but we won't dwell on that just yet.

Here are some shots I took during the study. Justin was mortified that I wanted to take pictures! One is Cohen on the table before, and one is him in the tunnel during the test. The last pic is of Cohen with no oxygen and no feeding tube! This is only the 2nd time we have ever seen him with nothing on his face! So sweet!



Sunday, March 21, 2010

March 21st

Tomorrow is the big day....we hope. The doctor put in the order for Cohen's repeat swallow study for Monday morning. The swallow specialist comes back from vacation in the morning, so hopefully her first day back isn't to hectic and she can fit Cohen in. I won't be shocked if it happens Tuesday. We will just have to wait and see.

In the meantime, I have been researching and studying harder than I ever have in my life. I didn't even study this hard on organic chem in college. I am just trying to make certain we make the correct decisions when it comes time. I just never want to look back and wish I had known more, or understood more. We are going to make informed choices with no regrets.

 I pray that the swallow study will be so improved the "G" tube/nissen surgery option will be thrown out the window and we don't have to worry about all this! I have been telling Cohen it's time to be a big boy and get home!

Cohen has been doing fine in the meantime, he is still on nasal cannula at 1 liter of flow and room air. We tried to wean him to .5 liters of flow, but he was not happy about it so we returned to 1.  He is still hovering around 7 lbs. Some days a little above and some a bit below.

Last night, when Justin and I were getting on the elevator we heard someone call our name. When we turned around we realized it was the parents of a  sweet baby girl we knew at Baptist. We were so shocked to see them there, we thought they were home by now! Their little girl, Olivia, was also born December 23rd, just a couple of hours before Cohen. They also have a 10 year old and a 20 month old just like us. Cohen and Olivia were neighbors from the first day....I guess she missed him and threw a fit to come to Vanderbilt. They are having a hard time adjusting to the change, just like we did a few short weeks ago.  We are hoping they can get things worked fast and get her home.

Also, many of you have been asking about Cohen's buddy/ girlfriend at Baptist, Emma Claire. She is coming right along and growing all the time. She is really a little warrior. Her mom, Emily, has an awesome blog explaining and interpreting lots of the NICU info.....I thought some of you would want to check it out and see what a little doll Emma Claire is!
http://emmaclairewarren.blogspot.com/

Thanks for your continued support and prayers for Cohen. We are hopeful for the test tomorrow and know that God will guide us through. Love to you all.

Do not be anxious about anything, but in everything, by prayer and petition, with thanksgiving, present your requests to God. – Philippians 4:6

Friday, March 19, 2010

March 19th

Just wanted to let you know Cohen is still hanging in there. Not much new to report, we are still just waiting on the swallow study on Monday. Cohen is still on nasal cannula (yay!) and doing well.

Let me explain what should happen after the swallow study.
1. If the study is "normal" and Cohen has worked out his issues we will start giving him bottles and take him home within a week. (The doctor said next Friday to be exact)
2. If the swallow study is not improved or "abnormal" they want us to do the G tube/fundiplication surgery as soon as next week and he would go home in a 2-3 week period with the G tube and oxygen.
3. If the study shows just "some development" or improvement we wait in the hospital and retest in another month.

To be honest, I am not sure what I think. I do believe he is better....how much better, I am not so sure of---
A week ago I had no hope that Cohen would go home on no oxygen. Now, I am thinking it might be a possibility.

No matter what the outcome, Cohen has proven he is a little fighter and I have no doubts that he will be well and home soon! Hope you all have a wonderful weekend!

Wednesday, March 17, 2010

Big Sis time

I got Calee out of school a little early yesterday so she could spend some QT with her baby brother. Calee has been a real trooper through all of this, but lately, I can tell she is struggling a little more. None of us thought Cohen would be here this long. We spent all afternoon with Cohen and then had a girls dinner in Nashville. Seeing Calee with Cohen still tugs at my heart strings.....she is just so great with him! I can't wait until our whole family can be together for the first time. I don't know what Ames will think of his brother!!!!

DUE DATE DAY!

Today is the day baby Cohen was supposed to make his grand entrance. Early on, I had envisioned St. Patrick's Day themed birthday parties, with green punch and kids dressed up like Leprechauns. Obviously, Cohen did not follow this plan! He is now 12 weeks old and we will be having Christmas themed birthday parties!

I have felt all along that Cohen's due date would be a magic time where things for him will just fall into place. I am still carrying some of that hope. I know he is still here in the NICU, but he really has improved over the last several days. We have stayed on the nasal cannula since Saturday afternoon, they were also able to move his NJ tube back to NG (higher into his stomach) and he is tolerating that really well. Having the tube at NG placement is much easier to deal with, but in the past it has contributed to his spells. So far, he is doing great with the adjustment. Another change today is stopping continuous feeds, and going back to feeding him every 3 hours through the pump. I think this is a great step toward getting him on a better schedule. Continuous feeds can really make for a tough schedule when we do go home!

The plan for now is just to wait until the swallow study Monday.  I will post some pics from Calee's visit with Cohen yesterday in a bit.  Happy St. Patrick's Day!

Tuesday, March 16, 2010

March 16th

We found out this morning that the swallow study we have been waiting on for the past 2 weeks will be postponed until Monday. The specialist is on vacation this week. They offered to let another speech pathologist do the study, but I think it's best to have consistency, so we can see for certain if he's made progress or not.  Plus, the lady doing it is supposed to be the best there is. She is the reason we came to Vanderbilt in the first place.

In the meantime, we just hang out and be thankful we are still off the vapotherm and doing AWESOME on nasal cannula! This is terrific progress!

As we wait, I have been playing with Cohen and trying on as many hats (you know how I love hats) as I can get over the PICC line .......I thought this bunny hat was the cutest thing EVER! Hope you have a "hoppy" day!

Monday, March 15, 2010

March 15th

 Today is going to be a good day. I talked to a friend for an hour this morning on my drive to the hospital, I needed the advice and encouragement she gave me. I got an awesome parking spot in the monster, always packed garage. I am having a fairly decent hair day, despite the rain. We have our favorite Vandy nurse, Susan working today.We even have several old buddies coming to visit. Cohen and I have already discussed what kind of behavior we should show while people are visiting. Let's just hope he was listening!

I was also touched this morning to see a nurse come in on her day off just to "visit" a baby next to us. This baby girl  has been here for 8 months and is going home this week. What an awesome blessing and gift from God for this family!

Cohen is such a precious blessing to us, and this just makes me get more and more excited about the day he will come home!

 Cohen is doing well today, not much to report. Just waiting on repeat swallow study on Wednesday, and we will go from there. I am hopeful for good news and I know that the Lord will not give us more than we can handle in one day. "For I can do everything through Christ, who gives me strength." Philippians 4:13

This picture is from Cohen's  Albuterol treatment yesterday. They tried it once to see if it could help...It didn't, but Justin and I laughed at the silly mask. He actually loved the treatment and the air blowing in his face!

Sunday, March 14, 2010

March 14th

I have written this post 3 times. I keep deleting. I am trying to find the simplest way to update all of you----

Basically, on Friday after a long day of misery for Cohen because of an impatient and frustrated nurse, I was over the edge. (It took all day to get his NJ tube back in place. He had 5 x-rays in 2 hours!)We made the decision to be transported back to Baptist as soon as the swallow study was repeated this week. We have been here for 2 weeks, and there is no more concrete information than when we got here. I do really like the doctors here and I know they have done every test they have available and tried hard to help Cohen.
But let's face it, they are with him 30 minutes a day. He is with his nurse the other 23 hours and 30 minutes. We have had a couple of great nurses, but no where close to the consistency and knowledge of the Baptist nurses.  I called Baptist early Saturday morning to let them know we were ready to be back .

Cue to Saturday......I made sure I was here at 7:30 to attend early rounds. I wanted to tell the Vandy doctor team myself that we would be requesting the transfer. I had no idea they would give me the "final recommendation" from the team. Justin would have come with me if we had know this was going to happen.
I probably should have expected this, being that his due date is looming over us in 3 days.

So, the consensus from them is he should have a nissen/fundiplication "G" tube surgery. They think this will help let his throat heal and develop without the strain of the NJ tube in place. The "guess" is he would have this a year. He would come back monthly for swallow studies to help determine when we could try to bottle feed him again. Until then, he would be fed 100% through the tube, directly into his stomach.

At first they were going to cancel the repeat swallow study, but as of this morning, they are going to go ahead and do it.....My opinion is we should do everything that we can reasonably do before a surgery. I will not let them cut on my almost 7 lb baby until I know it's the only option.

Let me say all that to say this: If the surgeon could guarantee me this surgery would "fix" him, I would schedule it tomorrow. However, that is not what you get------this is just going to be a temporary solution to a swallowing problem he will outgrow. The question is when will he outgrow it?

I know this is alot of information and pretty complicated! If the swallow study this week shows no progress, we will probably go ahead with the surgery and bring him home within a month. If the study shows any progress, we will likely go back to Baptist and wait 2-4 more weeks and repeat it again.

This is where we are today. I hope and pray he can overcome this without a surgery, but Justin and I are trying to be realistic. He may need a surgery. Please pray for Cohen and Justin and I as we try to muddle through the information and make an informed, correct decision.

Ohhhh.....I almost forgot to mention they took him off the vapotherm yesterday to try the regular nasal cannual again. So far, he is doing GREAT on 1 liter at 40% oxygen. Hopefully this time he will stay off the vapotherm for good!

Thanks for reading! I will update you tomorrow!

Thursday, March 11, 2010

March 11th

I know I always say this, but what a difference a day can make! Cohen had a great night and is doing wonderful so far today! The doctors were really pleased during rounds this morning, they really think he may have had a virus and is getting over it. They lowered his vapotherm back down to 3, and increased the amount of formula he is getting per day. He has lost about 5 ounces this week, he is back to 6lb 8 ounces, but I think part of that was fluid he was retaining.  We thank God for answering our prayers for a better day.

We wanted to also give thanks for our friends, the Cooper's (Jennifer, Brian and Grant) who just welcomed a new son into the world this morning. Luke weighed 9 lbs 4 ounces! I can't wait to see Cohen and Luke play like big brothers Ames and Grant do! Cohen and Luke's due dates were only supposed to be a day apart!

Justin and I are so encouraged this morning------we love you all and thank you for your support!

All dressed up in my suit

This picture is from a few days ago but I think this outfit is too funny not to show you! Cohen is dressed up and ready for business!

Wednesday, March 10, 2010

March 10th Evening

Just wanted to let you know Cohen had a good day. Justin and I stayed with him all day, and I got a lot of good snuggle time in. We even took a little nap in the recliner.
They did get his PICC line in, so we are glad that's over. The doctors today were concerned about the spells overnight, but I wouldn't say they were overly upset about him going up on the vapotherm. In all honesty, I think the night nurse overreacted a bit about the spells.  I guess its better for them to overreact than under react. Regardless, we are thankful he had a good day!

We are still not sure what is causing all his upper airway congestion. I know some of it is his swallowing problems, but he is also stopped up in his nasal passages. Hopefully he can work some of this out and have a better next few days! They are continuing the antibiotics and keeping a close eye on everything.


Thank you all for your continued prayers and support. We are appreciate all of you.

March 10th Morning

Cohen had several spells overnight, so Justin and I are both here this morning. We are in the waiting room while they try to get the pic line in again. The nurse said she suctioned alot of bile type fluid out of his stomach this morning, and it seemed to help him.  We were pretty alarmed by all the overnight spells, but when I got here and looked back on the computer screen, they weren't as bad as what the night nurse acted like on the phone. They were what I would call  mid-grade spells (thats just my terminology) but they were high as far as the amount he had.  They did move the vapotherm back up to 4. Hopefully this will give him the help he needs to heal whatever is going on with these spells.

Mostly, I wanted to show you this picture of Cohen's first haircut he got this morning. I know it looks awful! They saved me the hair in a little baggie, and it looks just like what we kept from Ames' first haircut just a few weeks ago.
Bless his heart! He is such a little trooper!!!

Tuesday, March 9, 2010

March 9th

Cohen is doing good today ,but if he could talk he would probably say he's had a rough day--they are trying to put in a "pic line" (not sure of the spelling) since they are having a hard time keeping an IV in him. This will be a more permanent IV for while he's in the hospital. The nurse and doctor told me the lady that puts these in could get an IV in a rock. Well, she wasn't able to get one in Cohen. She is going to try again in the morning, but has to have my signature to SHAVE OFF PART OF HIS HAIR to get one! My poor little man!
They are giving him antibiotics for 7 full days due to a infection they have discovered in his lungs. The chest xray he had late yesterday showed a small area of "clouds" that they want to take care of. That is why they decided to go ahead with the pic line. 

The repeat staph culture came back negative so far, but they will watch it in the lab for several more days.  He still sounds really congested, but it doesn't seem to be bothering him. He has lost a little weight in the last couple of days, but just a small amount, nothing to worry about. 

All in all, Cohen is doing good! Still just waiting on the next swallow study and hoping it shows an improvement.

Talk to ya'll soon.

Monday, March 8, 2010

March 8th

Cohen had a much better day today.  We still don't know about the staph infection, but the doctor feels sure it was a contaminate. We will hopefully know for certain in the morning. Cohen's doctor team did make some changes today, to try to help his upper airway congestion. They moved his NG tube (feeding tube in his nose) lower down next to his stomach. The hope is that it will let him have less secretions, so he has less aspirating into his lungs. They also want him to be positioned on his left side, to help his weaker lung have less pressure. The nurse today felt like this was helping him. They left him on the 3 liters of flow on the vapotherm. The only real negative information that they said is if the things we are trying don't help, and he is still aspirating his own secretions, there is nothing that can fix that. Basically, there is no way to eliminate saliva from the body. It would just be time before he can deal with it-----not sure how much time.

The physical therapist also came and worked with him, he loved it! He was wide awake looking at her the entire time. She felt like his legs are looking good. She has taught me how to do the routine so I can do it on the days they don't come. I love feeling like I can do something to help him. 

It was such a beautiful day today---I am hoping spring is here for good! I talked to my friend Tara today, she and her sister are my oldest friends from home, and tomorrow another dear friend is coming to see Cohen and have lunch with me in Nashville. I am so thankful for them and all the wonderful family and friends in my life. We just can't wait for the day we bring Cohen home and he can meet everyone!

Sunday, March 7, 2010

March 7th Part 2

Lots happened after I wrote this morning. The doctor had said it would be a boring day for Cohen.....we should all have known better than to say that. There is never a dull moment in the NICU. Right after the rounds, a bloodwork culture came back showing a staff infection. Now, this is possibly just a contamination, since the baby across the hall was positive too. They think the person that took the cultures originally might have touched both tubes. Even so, they had to re-draw blood and get an IV to give him antibiotics, just in case.  This was an ordeal.  No one could get him stuck, so they had to have several people come and try. He got so upset. It was awful. He had already been mad about getting a bath, and the blood sticks put him over the edge. He had 3 bad spells after this.....his heartrate dropped really low each time.  They ended up putting him back on 3 liters of flow on the vapotherm. He had been down on 2 liters for almost 2 weeks, so we are disappointed to go back up to 3. Hopefully this will just be temporary. We won't know for 24 hours from the draw if he really has staff. Please pray that this is just a contaminate. Cohen does not need any further complications. 

You would think after 75 days in the NICU we would be used to the ups and downs! We are concentrating on all the improvements Cohen is making and hope he can continue to overcome and grow.  I hope everyone has had a great weekend and is ready for Monday!

March 7th

Cohen had a much better night last night. Justin and I came early this morning to try and be here for the doctors rounds. We got here about 2 minutes before they showed up. I wanted to hear from them about all the bloodwork and urine samples they took the day before. Friday night he had 6 back to back spells, so they were testing him for RSV and other things. It all came back negative. For now we are assuming the spells are caused by either reflux or secretions in his throat.  I am thankful last night was better, no spells at all.
Justin and I almost called Baptist this morning to try and have Cohen transported back. I have been somewhat frustrated by his nursing care  since we have been here. At Baptist, he has always had his temp. checked and diaper changed every 3 hours when he was fed.  He also has always gotten a water bath every night and a soap bath every 4 or 5 nights. His bed was changed at least every couple of days.
 Now that he is here and on continuous feeds they don't have to be in his room as much, so I think some things have fallen to the wayside. He hadn't had a bath since he's been here. He also had not had his bed changed until yesterday when I did it.I have really felt like he is getting lost on the shuffle. They have over 400 NICU nurses here, so the chances of someone taking a personal interest are less. Bigger is better in some ways, but definitely not in all.
 All that said, we have a WONDERFUL nurse today. By the time we got here she had everything organized and a bathtub ready, without me having to say anything.  The bad thing is she only works every other weekend! I am just praying God will place a primary nurse for Cohen in our path. That we can feel more secure while we can't be with him.  Leaving him has always been hard, but I think all this is making it worse.

Justin and I are focusing on the positive, and trying not to get overly stressed about other things. Thank you all for the continued love, prayers and support.

Saturday, March 6, 2010

Vanderbilt

Thanks to my friend Emily who taught me how to post this little virtual tour of Cohen's room! I am a little slow when it comes to all this!    This is the first thing I saw when we entered the room......please take note of spelling. 
Someone must have noticed by the next day and they changed it.
The view from outside our room with door open.
The trusty Vapotherm machine. This is the high flow nasal cannula that helps him breathe. The 2.0 setting in white is liters of flow per minute. The 26 green number is the amount of Oxygen. The red number is the temp. of the O2 sent in.
This is the monitor that keeps up with his heartrate (top green) his respitory rate (middle white) and his oxygen saturation (lower blue) the screen is the same at Vandy and Baptist.
This is Cohen's new machine. It is a pump that gives him continous feeding 24 hours a day.

Friday, March 5, 2010

March 5th

Cohen has a good day. His "team" at Vanderbilt made just a few adjustments to his care today. They increased the calories in his formula since he has lost weight since the transfer. They also put his feedings on a continuous cycle through a pump to try and help his reflux. They think the spells he is still having are caused by reflux.  Hopefully this can help him have less secretions in his throat he has to manage, until he is stronger.

The plan and hope for now is we wait a couple of weeks and repeat the swallowing study. We will not give him any bottle feedings during that time, in hopes that we can let his lungs dry up and strengthen. If he shows enough improvement in that time, we will try with the bottles again. We also hope during this time that he can be removed from the nasal cannula and oxygen. The ENT doctor last week said he felt this problem with swallowing would not heal in weeks, that he thought it would be months. The swallow specialist at Vandy told me this morning she was not sure. She said things can improve fast in some cases.  His original due date was March 17th, so that is around when we will repeat the test.

We also got a second opinion from another orthopedic doctor today. He felt that Cohen's left foot has a tight heel cord, which can be a sign of club foot. Alot of the doctors at Vandy have refered to this foot as a "club foot", and his right foot as "rocker bottom".  I don't care for either term......anyway, the doctor said he did not think it was a club foot, and with time it should be fine. He may need more casting later, but he said he does not cast babies under 6 months or so......He thought even though the right foot looks worse, it would be worked out with no problems also.  So, the concencous is that his feet will be fine with just a little follow-up. We are so thankful for this!!!!!

Please pray that time improves Cohen's swallowing problem and that he can come home soon!!!! We are ready!

Hope you all have a great weekend. Love you much!

Thursday, March 4, 2010

MRI Results!!!!!!!

MRI was normal! This is great news! The doctor gave an example saying that just because you have a hand doesn't mean you can use it. Only time will tell us for sure, but having the correct anatomy is really important! MRI's don't show much except for the correct parts, but I am still thankful for the news.

Wednesday, March 3, 2010

Over and Done

Well, it's 10:46 pm, and Cohen just got done with his MRI. They let me sit in the room with him, so I was happy with that. They wrapped him up, strapped him to the board, and put huge ear muffs on his ears. I wanted to take a picture but no cameras are allowed! He took it like a champ---the heartrate monitor wasn't picking up correctly and it was giving me MAJOR anxiety! The doctor with us kept coming in and checking on him just to make sure. I am so glad it is over, I hope I never, ever see one of my kiddos in that thing again.

Hope to have results by mid-morning. Will letcha know.

March 3rd

Cohen is 71 days old today. Hard to imagine! Several things have happened, I will start with the most positive. Cohen's heart is in great condition. The echo showed nothing significant as far as pressure or damage. This is a big sigh of relief, as the fear that pressure put on the heart from the lungs could have caused damage. Not the case and we are grateful!

The swallowing specialist did conduct the suck/swallow test this morning. The report is not good. Cohen is aspirating fluid into his lungs everytime he sucks on a bottle. He does not cough or try to stop this from happening. During the study, every 3rd swallow went to his lungs. So, basically it is not safe to bottle feed him at this time. The neonatologist here at Vandy, Dr. Walsh told us we will tube feed him for several days and then repeat the suck/swallow test to see if his lungs have improved. He says the lungs heal fast, and if we leave them alone and let them heal, he MAY outgrow this problem within a matter of weeks. This would also allow him to be strong enough to not need the vapotherm machine.

The only thing that could throw a wrench in this plan is the MRI. It will finally be done late tonight. If it comes back normal, Dr. Walsh says we will consider this a preemie problem and give it time to correct, not try a "G" tube. If the MRI shows a neuro problem, we will have to decide how long we can wait on improvement before a "G" tube is a must. Dr. Walsh said he hates surgery, and will only do a "G" as a last resort. I like his thinking!

We were hoping to move back to Baptist when the study was over, but now that he will have another one, we will likely have to stay here at Vandy. The insurance company will not pay for backtransport if another study is scheduled. We already miss our Baptist family.

I am staying here with Cohen for the MRI tonight. Our prayer is that this will be normal, and he will not have any abnormal brain functions. Please pray for a good outcome. We should get the results in the morning, and I will let you know a.s.ap. I am able to write more now that I can use my laptop in his room.

Thank you for your support and prayers. Cohen is a strong little boy and I know he will be fine.

Tuesday, March 2, 2010

March 2nd

Vanderbilt is doing a great job with Cohen so far-----we have met lots of people this morning. Occupational and Physical therapy evaluated his condition and are going to give him therapy treatments 4 times per week. His hip ultrasound came back normal. They put off the MRI until after they complete the swallowing study tomorrow. The doctor that conducts the swallow study came by and gave him a bottle and evalutated him this morning, just to get an idea of what she is dealing with. Needless to say, he is worn out! He is sleeping like a log. I think the move has been much more traumatic for us than Cohen.
I have been trying to think of a good way to compare Baptist and Vanderbilt. Since I generally think in terms of school, I am going to give you that example.
My first 2 years of college were spent at Clarendon College in Texas. Clarendon is a tee tiny 2 year school in a small town in West Texas. It's the kind of place where everybody knows everybody.....a very family atmosphere. It's the kind of slow paced town where you create your own entertainment. (and we usually did that pretty well) There is no chain or big box stores like Wal-mart and Target for about 50 miles. We had a few sports and clubs, but not a ton of extra activities.
My last 2 years of my degree I attended Texas Tech University. For all my Tennessee friends, it would be equivilent to an MTSU. Pretty large city, lots of sports, clubs, Wal-Mart, Target, a mall...etc....
My point is I really loved the small atmosphere, but there were perks of the larger as well.
Some of the BIG perks here at Vandy are: Private room where we can use our laptop, cell phone, and we have a phone in the room. The Visitation-anyone over 18 can come with Justin and I and visit Cohen, anytime of the day. They NICU never closes. ALSO, CALEE CAN VISIT EVERYDAY FOR 30 MINUTES!!!!! This is the biggest perk so far! They also have "sleep rooms" for the parents, so I can stay in the hospital and be close to Cohen as much as we need too. I am going to stay tonight, as I think they will be doing an echo of his heart later tonight.
The downside is the loss of personal relationships. There are just so many people it will be harder to get to know the nurses, doctors, etc.

All of this being said, the most important thing is Cohen's health. I really hope that things get figured out soon, the ulitmate goal is for him to be HOME!

Monday, March 1, 2010

Moving Day

Cohen took his first ride today, and he didn't even have to sit in a car seat. He was transported to Vanderbilt Children's Hospital about 4 this afternoon. His ride was only about a mile, but I am sure he liked it. I literally followed the ambulance bumper the whole way.
It's hard to describe what the rest of the day has been like. Chaotic. Fast-paced....a little crazy at times. As soon as we got there, I met about 12 doctors. Since it's a teaching hospital they have interns, residents, fellows and neonatologists. Lots of young doctors.It's all very Grey's Anatomy.
They ordered all kinds of bloodwork, test, MRI's, ultrasounds, x-rays, etc. as soon as he rolled in the door. Things happen really quickly there. Tomorrow we expect a speech pathologist, orthopedic, ENT, radioligist and someone else I can't remember. All of this is in hopes of finding what is causing Cohen so many problems.
It was so hard to come home tonight. Leaving Cohen everyday at Baptist was hard. But...they knew him, they saw him grow from 3 lbs to almost 7. They have invested so much in Cohen.
Now, I feel like we are starting over. I felt like I was leaving him with a bunch of stangers, in a strange place.
I have to say I was impressed by the effiency and the promptness at Vanderbilt. I am just praying they can figure him out and find a solution. I pray that Cohen does well there, and can continue to grow and thrive.

Please pray for Cohen and us over the next few days ahead. We are hopeful this is the right place for him right now. Love to you all.