All Smiles!

I wish I had my camera with me to capture the smiles on Wyatt's face today when I said hi to him. He gave me a big smile followed by a few little smiles. My mom, who took my place after I left today to pick up Chloe also said she got a few smiles from him too. Wyatt has been going to the playroom for a while each day.... almost 2 hours with his friends. The child life specialist told me today that Wyatt is the only baby to stay awake during the entire "playroom time." His friends tend to fall asleep after a while. Wyatt is gaining weight and no changes have been made in his care. I am hoping we just stay status quo until surgery on Tuesday. He has been spitting up, but it's formula color so that's a good sign. Overall, he had a great day!

All settled in ...

Above- Wyatt with Pam
Below- Wyatt getting transported from Hopkins to Mt. Wash.

Wyatt is all settled in at Mt. Washington. I feel good about being there because Wyatt's crib is against the nurse's desk and the nurse is in the room 24 hours a day. Wyatt took a field trip to the playroom today for 1 1/2 hours today. He now weighes 11 lbs, 12oz and was visited by Grandpop, Mom-Mom, and my mom's co-worker Karen. No changes in Wyatt's care has been made, which I am really happy about. I want to keep Wyatt stress free until surgery. Tomorrow, he'll spend the day with Daddy. Thank you to Pam and Paula for spending time with Wyatt on Monday when I could not be there with him. It means the world to me!!!

Frog Legs

Wyatt was so alert and happy today. Since he was moving around so much, the oxygen buzzer kept going off because of movement!! He was okay. Wyatt's visitors included Aunt Carole and Uncle Pat, my parents, and grandmother. Thank you!!! My friend Amalia gave Wyatt a really cute outfit that looks like frog legs!!! See picture above. The only change today is increasing his calories to 30. It's probably the highest he will go and then it's likely his feeds will increase to 30 ml. Hopefully he will gain weight after this since he has not gained in the last few days. Chloe only weighs 19 lbs and Wyatt weighs around 11 lbs so it's in the Koger genes not the gain weight... not the Marconi's!! Chloe had the opportunity to eat in the Hopkins cafeteria during the switch this evening and she loved it!! She walked around everywhere just exploring. Tomorrow we go to Mt. Washington for about a week then back to Hopkins for shunt surgery. To top the day off... I got a parking ticket because I parked in the shuttle zone!!! $42.00!! I thought I was saving money on a Sunday to park in the street for free. I took pictures because I really don't think I was in the shuttle zone.... another court date I will have to attend... just like when I parked in the bus zone at the Metro station!!



Do you see this sign in front of my car... I don't!!!


My car was the only car out of all these cars with a ticket on it's windshield!!


But it's worth it :)))

Happy Birthday Wyatt's friend's mom!!

It's Vicki's birthday, Jack's mom who is Wyatt's CDH friend. Jack and Wyatt have shared simliar experiences at Hopkins and now Jack is home and healthy. His ng tube was just removed and he is doing great. Vicki received the best gift of all... Jack! You can check out Jack's story on www.carepages.com and search for JackJensen. Happy Birthday Vicki!

Sleepy Saturday

Like daddy like son.... like mommy like son...

Peaceful Saturday

Benji and I are here together at the hospital all day today and Wyatt is asleep in his arms. It's so peaceful!! Wyatt's calories are going to increase from 24 to 27 so he can gain more weight. I am sitting here in the chair next to them on my computer. It feels like home! Benji and I played with Chloe this morning and brought her to the hospital to switch her over to my parents. Unfortunately, she was unable to visit Wyatt, but her eyes were so big just looking around. It was the first time she was ever inside Hopkins. I want to say hi to my family in Italy who has been checking the blog. It's amazing how small our world is!!

TGIF

Wyatt had a great day today!! He only spit up once and it was white/clear which is a good sign. The abdominal x-ray was normal too. He was awake for much of the day and I even got a few smiles from him today. Dr. Chandler plans on increasing his calories so that he will gain more weight since he has not gained much in the past few days. If he gains weight, then we will go to Mt. Washington at 12:30pm on Monday and stay there until Feb.5th at 5:30am. Then we will come back to Hopkins for shunt surgery. I talked to Dr. Carson's secretary today and she said that we had to be at Hopkins at 6am on Feb 5th for surgery with Dr. Carson at 7:30am. I like that Wyatt is the first to get surgery. I just want to make sure that Dr. Carson gets a good night rest the day before and eats breakfast!!! Heather, our neighbor was Wyatt's nurse today, so that was fun!! She takes very good care of him. I'll miss Hopkins... besides the excellent care, I can access the Internet in his room and watch TV, and not wear mask, gown, gloves and look like an alien to my child!!

Clowny Thursday

Today two clowns came by to visit Wyatt and he really enjoyed them, especially when they were blowing bubbles. I forgot to get my camera out!! Benji worked a super long day today so I stayed with Wyatt for a little while and then my mom took over. While she was holding him, he spit up brown stuff which was dried up blood. So tonight he will get an adominal x-ray and hopefully we will find the cause of it. I also talked to the discharge nurse today explaining that I am fine with Wyatt going to Mt. Wash, but for just 11 days I don't want to stress him out. When a new patient arrives at Mt. Wash, they are tested for RSV, blood work, and usually some changes are made in their diet, plus it's a new environoment for Wyatt. I just want Wyatt to stay staus quo so he can have shunt surgery on Feb. 5th. So far there is not a bed available at Mt. Wash until Monday.

Update

Wyatt's chest x-ray shows more fluid, so hopefully the lasix can take care of it. When I left the hospital he was peacefully sleeping and his stats looked good. I talked to his surgeon, Dr. Chandler tonight and it looks like we may have a plan. Dr. Carson would like to wait about one month for his shunt surgery. The general surgeons would like to wait for the g-tube surgery... until after his swallow study and shunt surgery. So it looks like we will stay at Hopkins for a little bit until his feeds are stable and then go to Mt. Washington until shunt surgery. Benji will be with Wyatt all day tomorrow. Keep cheering and praying for Wyatt. Thank you!!!

Say a cheer for Wyatt!!!

I am sitting here by Wyatt's bedside watching him sleep. I must of sounded really down based on my last entry because a few people have e-mailed me some really encouraging words... thank you and I am fine. Wyatt is in good hands and it sounds like we are getting close to a plan. Today so far is an ok day for Wyatt. His oxygen saturation kept de-stating so the docs ordered lasix to remove the extra fluid and a chest x-ray. His heart rate and respiration has increased as well. The feeds have stopped until further results. He is finally sleeping now, so hopefully when he awakes everything will go back to normal (in my perfect Disneyland World). I just heard that Dr. Carson would like to wait for about a month to do the shunt surgery and we would like Wyatt to come in as an outpatient. So the question now is do we do G-tube surgery or wait??? Does he come home with a shift nurse or go to Mt. Wash or stay here???? We'll find out and will do whatever is best for Wyatt.

Quiet Monday

Benji and I took shifts today to be with Wyatt. I worked in the morning while he was at the hospital and he worked in the late afternoon while I was at the hospital. Then I picked up Chloe at my parents and was home around 9pm for some playtime with Chloe. She was allowed to go to bed late... around 10pm. Our lives are hectic, but that's life and we have to accept it and make the best of it. Wyatt is starting to use his hands more, so we brought in a thing that he can lay under and swat at the hanging toys with his hands. He is not too thrilled about it, but he will be soon! His feeds are now at 27ml/hr and he is tolerating it nicely. Keep your fingers crossed!! Next the doctors are likely to increase his calorie intake from 20 per hour to 24 per hour. We requested a family meeting with all his doctors so a plan can be in place for future surgeries and possible time when he will be able to come home. Wyatt gets new roommates almost everyday. Most families sleep with their kids, but I have to remind myself that they are usually there for only a couple of days and Wyatt has been in the hospital since October 9th. It's heart breaking to hear the nurse say that he was really upset after his cares and we are not their to comfort him. Childlife has been wonderful by organizing volunteers to hold him when we are not there. I wish I could be by Wyatt's side all the time, but that's impossible. I have another child, a job, a house... so we are there every possible minute that we can be. I am looking forward to the day we can be under one roof. When Wyatt comes home, I don't want to go anywhere for a long long time!!! Childlife gave Chloe a baby doll with an ng tube in his nose so we can teach her to not touch it when Wyatt comes home. When she saw the baby doll, she pointed to the ng tube and said "boo boo" and stayed away from it!! It was a holiday today, so it seemed like a Sunday in the hospital and Wyatt seemed to like the quietness.

Quiet Sunday

I spent the entire day with Wyatt just holding him. Two of the four kids in our room left today which was nice to see. Wyatt was a bit fussy, so the nurse gave him Tylenol rectally and he pooped it out! After that he felt much better! I got a few smiles out of him today. He had a great sleepover with his Dad and only woke up one time!! His feeds are up to 23ml/hr... almost to his goal of 27ml/hr.

Saturday's Pics

Wyatt enjoyed his vistors today. He was wide awake and happy. I spent the afternoon with him and Benji is spending the night. His feeds are 20ml/hr and his goal is 27ml/hr, so he is almost there and he is tolerating them well. Dr. Ahn,neurosurgeon, came by to visit and said that Wyatt's head is looking good so far and we can wait a little longer for surgery. He will look at him again on Tuesday. I would love for Wyatt to hang out where he is and get healthier and stronger until Feb. 5th and then have surgery to place a shunt in his brain that will drain to his abdomen, then recover, then home!!! Wyatt's oxygen is slowly getting weaned and he is now on 1/8th liter. All that is left is 1/16th and then no oxygen. I like taking the slow steady course for weaning the oxygen. I don't think he is completely ready to come off yet.

Mr. Hollywood...

Here are the pictures from the past couple of days. Wyatt in his swing, Wyatt with his serious face, Wyatt with my friend Nicole and Benji, and Wyatt sleeping.

Snowed in with Wyatt...

I felt like a real mommy to Wyatt. After work on Thursday, I traveled to Hopkins and was pleased to find out that I would be snowed in with Wyatt all night long...since I'm terrible at driving in the snow!! It was our first sleep over together. I enjoyed not having to look at my watch all the time and holding and rocking him for a long period. I slept in a pull out chair beside his crib. He only woke up about 2 times after his cares, so I held him and soothed him back to sleep. He even read a "teacher book" with me.

Medically, it looks like we may have a plan of action. The surgeons are not in a hurry to place a G-tube in and neither are we. We feel comfortable with bringing home Wyatt on the NG tube. There are pros and cons, but Wyatt has endured three surgeries so far and if we can delay one more, it would be great. He is tolerating his feeds very nicely. They are increasing them by 1ml every 8 hours. He is currently up to 18ml/hr and 27ml/hr is our goal. Dr. Carson is away this week, so Dr. Ahn is seeing Wyatt along with the PA, Judy, who is wonderful and answers my millions of questions. Dr. Ahn said if Wyatt is not going to have G-tube surgery in the near future, then he would like to wait to place the shunt. He said, since his soft spot is still fairly soft, that it's not critical to have surgery and it's better to wait for Wyatt to get healthier, stronger, and him tolerating his feeds. He will be re-assessed by neruosurgery on Tuesday. It was decided to do surgery next week instead of Feb. 5th, but now that plan is scratched. It looks like for now the plan will be feeding Wyatt towards his goal and giving him time to grow and get stronger. Maybe a miracle will happen and a shunt will not be needed. The surgeons are debating to allow it to drain in his abdomen, which is most common or his heart. They were first leaning towards his heart, since he may have possible g-tube surgery. But I am not a fan of it draining to his heart and Dr. Chandler said she plans on leaving the central line in for a while, so now the surgeons are thinking about allowing it to drain into the abdomen.

Thank you to Amalia for surprise visiting Wyatt today!!! Also, to his NICU nurses that have been with him from the very beginning... Charla and Melissa who came by to see him.

The waiting game...

Wyatt had a nice day today. We are waiting to hear the plan. I talked to many of Wyatt's doctors today. Dr. Leften-Gref would like to wait about two more weeks for the swallow study and neurosurgery suggested that we wait for Wyatt's organs to heal more. Wyatt's soft spot on his head is still soft, but it's swollen and a little more firmer. So it sounds like we will be waiting for Wyatt to become healthier and stronger. I had a great day with him! Wyatt's nurse, Brandon was FANSTATIC!!! She stayed in his room for most of the day and tended to all his needs. She really cared about his comfort and we appreciate that soooooo much!!! I sent out an e-mail to our family and friends about visiting him while we are not there. If you like for me to send you the e-mail, just let me know.

Hot Topic Tuesdays: Are Mothers Doctors Too?

Danielle's perspective:

Ok, all you non-moms out there -- which besides me include none of this blog's audience -- How nuts does it drive you when your mother thinks she knows every possible sickness under the stars?

Dr. Arlene (my mama) HAS to be one of the worst. Paraphrased, a tad exaggerated, but you'll get the idea:

"Grandma's throwing up? Well the doctors are wrong. It's not because of old age, she has gallbladder disease. Wyatt sounds stuffy? Tell the doctor to check the fluid around his lungs."

Zero out of two right on the above. I always tell her that she should have put her good skills to use and have become the real deal. She already diagnoses like an M.D. with a bad track record and in addition we could enjoy the financial comfort.

Though, it's not fair for Dr. A alone to be picked on for this. (Mom, please forgive me for the above outlash.) She is one of many. The question is, when does it begin? Does it start when you have your first baby? Or after you've been through many runny noses and achy bodies? Is this my fate as well? Is it every mother's?

Only you, mothers alone, can answer that. It seems though, in extreme circumstances, Dr. Mom is just as necessary as those who actually hold the license. Take Gina for example. When I was in the room with her and Wyatt she threw around lingo that I could have sworn she could have only learned in the med school she went to that I never knew about. One of Wyatt's whatchamacallits came undone. Alarms went off, machines started beeping, Danielle panicked and Gina calmly walked over, reset the machine, reinserted the tube, explained to me what it was in medical jibberish and gave a little nod to the nurse that everything was now A-Ok. You go Dr. G! No wonder you are so popular among the nurses, you give them a chance to get off their feet and rest a little. I once heard one nurse shout to a nurse in the other room,

"Oh, Gina's here. Break time!"

I realized how important it is for parents of CDH kids to maintain their vigilance. My mother, Gina and Benji do a good job of asking questions, inquiring about prescribed changes, and speaking their mind if they disagree. With all the nurse rotations, weekend on-call doctors, only you, their parents, best understand your child's routine.

Here's a list I came up with for parents of CDH kids.


1.Don't feel guilty if you bother your medical team with a concern about your child and it turns out to be wrong. You are not make-believing your concerns. You are going through this disease together with your child and along the way have become more knowledgeable because of it.

2. Represent your baby. You are your baby's best health care advocate. If you have concerns or doubts, voice them. No matter how silly they may seem.

3. Write down or keep a record of your concerns. If you are at your baby's bedside at 8 a.m., notice something, but the doctor doesn't free up until lunch, chances are that your sleep deprived brain won't be able to convey let alone remember all of your original worries. Plus, having a logged history will make it easier to notice repetitive symptoms.

4.Butter up the hospital's staff. You are going to be seeing a lot of each other. The closer you are the easier it will be to receive and give honest opinions.

5. Be fun and innovative when it comes to the crib. Your baby's in a hospital --which that simple fact completely sucks in itself -- and the only home he or she has known up until this point in their life is the tiny box in which they reside. So make it cozy and cycle toys in and out often. Even though your baby is bed-ridden his or her mind is still a little sponge.

6. Try to get a few things done for yourself.
You still have a life. And although just "you time" is out of the question, being productive on non-CDH related things still feels nice.

7. Look for extra help. People ask my sister, "Is there anything I can do?" Luckily, she learned early on to say yes. Visiting your child, taking care of your pets at home, going to the supermarket for you, cleaning your house. One thing I gather from every one of Gina's entries is that her support network continually takes action, and she is always grateful.

8. Stay healthy. Take care of your body, try to sleep well. Stay away from the hospital if you feel under the weather.

9. Give yourself a present once a week. Even if it's splurging on a Starbucks Venti Iced Caffe Americano w/ a shot of Caramel Syrup. Indulge yourself with a present at least once every two weeks.

10. Send flowers. This one is for all the husbands out there. You are going through the same thing that your wife is, and if you are anything like my sister and her husband, you are like passing ships on your way to and fro from the hospital. Have flowers waiting for your woman. Have bubble bath and candles (not yet lit) set up tub side. Ladies - leave your men love notes. Supporting each other will energize you for the 28 hours of duties you pack in a 24 hour day.

New Room, Brain surgery, and no swallow study

Today my mom and dad spent the day with Wyatt since Benji and I were unable to. One of us will go after Chloe goes asleep. The swallow study was postponed until Wyatt starts showing that he can handle his feeds. The feeds were started at a low rate today and will increase slowly. Wyatt is congested so he got a chest x-ray and was tested for RSV. Dr. Carson just came by while my mom was with. Somehow Dr. Carson makes everyone feel good, because my mom called very happily. Wyatt's ventricles are getting larger and after he is more stabilized, he will need a shunt in his brain. Dr. Carson said many athletes and happy, healthy people have shunts. He said Wyatt is fine for now, and will keep on checking up on him until brain surgery. It looks like Wyatt will be in the hospital for a while now. Wyatt was also moved to another room today out of intensive care, therefore there is not a nurse in the room at all times. It's his first time alone without a nurse. He is near the nurses station and is in the bed closest to the hallway. Lets just hope a nurse can hear him when he cries.

Wyatt's mom is in trouble!!

Wyatt was wide awake and alert for most of the day. I even got a few smiles out of him!! His favorite activity is watching TV, even though I tried to slip in some book reading. Wyatt likes to make his own decisions. Today the nurse said that she had to cover his left hand because he was trying to pull out his repogle tube (ng tube). While I was holding him, I told the nurse that I was going to let his hand free and I'll watch him. Well, about 5 minutes later he pulled the whole thing out with out me even noticing!!! He is so sly!!! The nurse was sweet and laughed and it turns out that the surgeon said we could just leave it out. The only change made today was increasing his nutrition so that he can continue to gain weight even though he is not getting fed. Father Paul came by to visit Wyatt and gave him a blessing. Tomorrow is a big day for him.... he has his swallow study and Dr. Carson will read his CT scan. Lots of prays please. My camera batteries are charging, so pictures from the weekend will be posted tomorrow. Thank you to my cousins Vicki and Jimmy for visiting and Aunt Paula. He also had a visit from my parents.

Tiny step backwards, but still happy

Today started with my morning phone call to Wyatt' nurse. She said that he had a rough night last night and vomited twice with dried up blood. An x-ray was taken, blood work, urine sample, and a stool sample. His white blood cell count is high at 35,000 so he is now on two antibiotics and his feeds were stopped. He currently is on TPN (nutrition), fats, and fluid through his central line so he can continue to gain weight. Because of this little step back, he gets to remain in the IMC section which I am really happy about. He also had his head CT scan this morning and Dr. Carson will read the results on Monday. Wyatt had a great day! He was awake and alert for his visitors today... my high school friend Nicole and her husband Matt, and Wyatt's NICU nurse Charla. Benji and I took shifts today so I could spend time with Chloe at my parent's house. Benji read a few books to him, but Wyatt seems to move his head to look around the book to watch TV. Lets hope to make more progress on the feeds. I just made my nightly phone call to his nurse and he is sound asleep and happy.

Happy Camper

Today I was able to spend a long time with Wyatt at the hospital. Since Chloe was sick, I only saw him for 2 hours this week until today. He had plenty of visitors in my abensce since I could not go. Thank you to my cousins Laura and Christine for spending a long time with him yesterday. Thank you to all the nurses that hold and cuddle him. I heard last night was spa night for him. Three nurses gave him a bath and lotioned him up. Wyatt gets plenty of attention on the 6th floor and we really like our spot there. Tonight Wyatt's nurse was our neighbor Heather, so I know he got ALOT of attention tonight. She's the best!!! The reflux study yesterday showed that he did reflux (surprise!!) however, he did not aspirate which is a great thing!! Wyatt is currently on reflux medication to help decrease the refluxing. Over the weekend he will get a CT scan of his head and Dr. Carson will read it and see him on Monday. Also on Monday, Wyatt will get a swallow study done to check for aspiration. Our next steps will depend on the swallow study. The possibilites will be going back to Mt. Wash or coming home and a nurse will be with him at night while we sleep (best case senerio!!). Wyatt is currently in the IMC section on the 6th floor where there is a nurse by Wyatt's bedside. The charge nurse was talking about moving him to a room without a nurse tomorrow. I am not comfortable with him being in a room without a nurse for two reasons. Wyatt can not be heard when he cries, so how will a nurse know to come in his room to soothe him. More importantly, Wyatt may aspirate by pulling his ng tube or choking on vomit (which is the reason why he can not come home). If a nurse waits until the monitors go off, it may be too late. I would much rather him home with us or even at Mt. Wash if this is the case. I asked the nurse to call me before he is moved. We will see.... otherwise, Wyatt is happy and gets plenty of attention on the 6th floor. We are very happy!!! I would even be happy if he stays put in spot #5 until he comes home!!

Happy 3 month Birthday Wyatt!

You are 3 months old today! Happy Birthday little man. You have come so far, and have fought incredibly hard in this world that I am going to give you a present that lasts a lifetime: an age widget that keeps on ticking! This is your Aunt Danielle. I thought I'd give your mom a blog break today and do the honors myself.

Ever since you were born I have been praying and rooting for you from afar. I have continuously admired your mother's unwavering support, selfless love and genuine certainty of your 100 percent recovery.

Not until two weeks ago when I met you for the first time, did I understand why. I walked into your room alone, painfully watched your silent cries as the nurse prodded your ankle with a needle, then curled you in my arms. At that moment, I took my first look at someone and fell in love. That someone was you.

You are not the helpless baby that I sympathized for from across the world. While rocking you, in your blue eyes I witnessed a thirst for life, in your temperament I saw an inexplicable calmness.

Wyatt, you should not be pitied, rather, you should be praised. What I saw in you, few people that have lived a life time possess: tolerance for the world and patience for time.

You are not just going through a life-threatening illness, you are going through it with grace.

I pray for you today on your third month birthday that the only traces of this sickness that will stay with you in the future is the serenity that you possess now, and of course, this blog. ;)

a kiss, a hug and abounding love, - aunt danielle

Wyatt looks great! Chloe is doing a little better!

Well it's 1:00 in the morning and Chloe just fell asleep. She is doing much better today. We went to the doctor for a follow up visit and he prescribed more antibiotics for her ear infection. Today I actually saw her smiling and walking around. Thank goodness!! She is very clingy and will only sleep if she is holding on to me. Because I was with Chloe, I was only able to see Wyatt from 5-7pm tonight. The computers are down at McDaniel College so Benji is working from 8pm and through the night. I tell you... when it rains it pours!!! I can't complain, because our little boy Wyatt looks fantastic!! The nurses are trying to wean his oxygen and he recieved the RSV shot today. Wyatt loves to watch TV. His favorite station is a channel that shows nature stuff and plays music along with it. Mother of the year I am... encouraging my child to watch TV!! We recieved the best gift today. My friend and neighbor, Heather who works on the 6th floor and was there for a meeting today held Wyatt for 45 minutes today during her lunch break. What an awesome gift for a mom who can not be with her child and for Heather to give up her lunch for Wyatt. The only way to soothe Wyatt is to hold him and when Heather told me that today, it made my day!!! Also, I got so many e-mails from my family and friends asking if they could help in anyway. Thank you so much and hearing your encouraging words keeps us going and thinking positively. I put a counter on my blog at the bottom during Christmas week and since then 848 people checked out Wyatt's blog!!! Wow!!! I am amazed and blessed for all the people that support, care, and pray about him. My assistant principal from New Windsor Middle made him a prayer blanket which was also very thoughtful. I can't thank everyone enough. Thank you.

It's not fair that Wyatt is the only one in the hospital, says Chloe!

Well, today Chloe wanted all the attention. She had the stomach virus last weekend and this weekend on Saturday she had a fever, runny nose, and was breathing hard. Today I took her to her doctor who then referred me to the ER. The ER confirmed that she has RSV and an ear infection. She looks so sick and is very sleepy. We arrived at the ER around 3:30pm and just came home around 1:00am. What a long day, but Chloe is now sound asleep in her crib. She had a shot of an antibiotic, Albuteral, and Motrin. She looked a little like Wyatt with an IV laying in her hospital bed. I love Chloe with all my heart, but I must say that I think Wyatt is a better patient!

Wyatt on the other hand is doing great! I just called and his nurse is getting ready to move him to the step down floor-6th!!! Let hope for a speedy recovery! It's going to be tough trying to divide our time up with Chloe at home and Wyatt in the hospital, plus work, but we can make it work and one day we will all be home.

Starting to eat again...

Wyatt looks great! He is ignoring his pain medication and likes to be wide awake looking around. I changed out his moblie today so that he has something different to look at. Wyatt is starting feeds today.... very little about 3 cc's every hour for three hours. Hopefully he will tolerate it so it can be increased. Chloe is sick so I divided my time up with her and Wyatt. It's tough because I want to be with both of them all day long. If all is well, Wyatt will move to the 6th floor on Monday... hopefully to the IMC section where there is a nurse near him at all times.

Wyatt was extubated!

Wyatt seemed to enjoy his day today. He was calm and sleepy (they increased his meds since he was mad yesterday). All his blood gases looked good so around 5pm, he was extubated and connected back up to oxygen and it went smoothly. So now, he just has to recover from his operation and then we can work out the feeding issues. Benji and I took shifts at the hospital to spend time with Chloe... because she is not feeling well. Overall, it was a good day for Wyatt.

Wyatt is mad!!

Wyatt was very alert today, but looked uncomfortable. His breathing tube bothers him and it's difficult for him to fall asleep. Wyatt was very mad today!! The doctors are weaning him from the vent, but because of not so good blood gases, things have slowed down a little and it looks like they will try for tomorrow. The tube in Wyatt's throat is size 4 which is a little too tight. Size 3 1/2 is a little too small so Wyatt is given steroids to prevent his airway from swelling. Since the tube does not fit perfectly, Wyatt is probably uncomfortable. It just breaks my heart to see those silent cries. Otherwise, I can't complain. His stats look good and so far, his surgeon said he is doing great! On a side note... Wyatt's friend Jack (his CDH sidekick) was in the ER today, but Jack is fine and was able to go home. One day, these boys are going to have play dates and compare their scars!! Also, please pray for Wyatt's NICU neighbor Drew who is getting tested for Leukemia. So far things look fine and we continue to pray for him.

Wyatt's Big Day!

Wyatt's Surgeon- "SUCCESS!" which was the first word out of his mouth after surgery. The day started with a phone call from Wyatt's surgeon saying that there was a cancellation this morning and that they would like to start the day operating on Wyatt. We gave our consent and were on our way to Hopkins. Wyatt entered the operating room around 9:30 am and left around 3pm. The doctors started with putting an arterial line in Wyatt's leg to measure blood pressure and correcting his central line (it was in too far). The operation to repair the diaphragmatic hernia started around 11:40am. The surgeons cut an opening in Wyatt's chest on his left side under his arm pit. They also placed a chest tube in. Part of his intestine herniated into the chest in the middle of the patch near his heart. They patched the current patch and found that most of his left diaphragm was missing. After surgery, we sat by his bedside and saw that he looks fantastic compared to his past two surgeries. His colored looked good, stats stable, and opened his eyes for us. He is currently on a ventilator and will be weaned off it soon. He is also back at the PICU. Thank you again for your support and prayers. The above pictures are after surgery.

Surgery on Thursday!!!!!!!!!!!!!!!!!!! Surprise!!!!!!!!!!!!!!

Today was an eventful day for Wyatt's mom! It was her first day back to work. Wyatt's mom really enjoys her job and works with a great bunch of people! But when she called Wyatt's nurse to see how he was doing, she said he was crying!! Now, you don't tell a mom on her first day back to work that her baby is crying!!!!!!!!!!! But all is well, she picked him up and everything was fine. THEN.... Wyatt's surgeon called and said surgery is scheduled for tomorrow!! Wyatt will be an add-on and that we have to be there in the morning and he will have surgery when their is space. The surgery will be to repair his reherination since part of the intestines is in his chest. It reherinated in the middle of the patch near the heart. The surgeons will enter through the chest above the diaphraphm to repair the hernia. The feeding tube will be a seperate surgery if needed. Surgery is a BIG deal so please, please, please pray. Wyatt is our little miracle and this is just one more hurdle. Tonight I took Chloe and Abby to my parent's house, one hour away, then drove to the hospital, 45 minutes, then back to my house, another hour. It's 1am and I am ready for bed!!! Wyatt was great tonight. His color looks fanstatic, he is getting a blood transfusion to prepare him for surgery and he was wide awake watching TV. Yes... I said TV!!! I know we avoid Chloe from watching TV, but Wyatt discovered this nature channel that shows flower, cloudes, grass, etc... and music plays along with it. He loves it!! He was happy this evening and very alert. See the above pics.

It's the step down unit for Wyatt!!- The 6th floor!

The above pictures were from the PICU when he first arrived. You can see the IO in his leg. BUT now... today he was moved to the 6th floor which is the step down unit!! Wyatt is doing and looking much better. His chest still has a lot of fluid in it, but his stats are good and his surgeon returns tomorrow so a plan will be established. Overall, the day was uneventful and I think he likes his new home!