Let's try an experiment...

Today the doctors tried a little experiment. They removed the oxygen cannulas from Wyatt completely to see how he would do. He was off oxygen for about 3 hours and did fairly well. However, his oxygen saturation kept de-stating to the low/mid 80% Ideally, his oxygen saturation should be between 96%-100%, so the decision was made to put him back on oxygen at a very low setting. As far as feeding, Wyatt took about 9 ml from the bottle for me today. Wyatt was not a happy camper... our nurse Cheryl seems to think it's withdrawal from the medications. He was just a little fussy. Hopefully in another day or two, he will feel more comfortable. Our schedule with Wyatt is now more structured since he is learning to feed from a bottle. I am giving him a bottle from 12-3pm and Benji tries to give him a bottle from 7-10pm. We are like two passing ships, but it's important that Wyatt has a parent with him during to feel secure about taking a bottle. Also, with all the traffic, my ride home takes about 1 1/2 hours. To spend a little time with Chloe, I took her to see Rudolph the Red Nose Reindeer tonight at the Carrol Arts Center. It was fun! Also, I wanted to thank everyone again for their support. In just the past few days, I have heard from co-workers from North Harford (where I worked 7 years ago), New Windsor, Central Office, and neighbors. Wyatt has received adorable art work from Dan and Grace,prayer cards and special wishes. Thank you... as much as I would like Wyatt not to go through all this, it is a blessing to know how kind everyone can be. thanks :)

Good Bye IV pole!

Over the Thanksgiving weekend, Wyatt was weaned from his sedation medication and seizure medication. He no longer needed the pole that held his IV pumps!! He started with two poles full of IV pumps and now none. Wyatt is now awake more often and loves to be held. Doctors think that the mysterious bump of the back of his head is a pressure sore. His head bleed seems to be stablized. The next step will probably be getting an MRI but will need sedation for it. For now, we are encouraging Wyatt to eat from a bottle or breast feed.... which he will do for a few minutes and then stop. Wyatt associates things in his mouth as being bad since he had a tube in this throat for several weeks and was suctioned every few hours. Wyatt now has a tiny cry. His vocal cords are slowly healing and if you listen closely, you can hear a cry... yeah!! The pictures below is Wyatt sucking on his pacifer and Wyatt's Thanksgiving card that he made us with the help of his awesome nurse, Charla.

This is Thanksgiving...

Wyatt is the true meaning of Thanksgiving. He is a little miracle baby and we are so thankful that he has progressed this far. Just thinking about the hurdles that he jumped over from ECMO, diaphragmatic hernia repair surgery, silo surgery, chest tube, oscillator, ventilator, CPAP, brain hemorrhage, oxygen, feeding tube, wound in his neck... he is Thanksgiving. Today he took 15 ml of milk from the bottle (first time!!) His feeds are condensed over 2 hours instead of 4 hours. The doctors are even talking about taking him off oxygen. There is a mysterious bump, like a cyst on the back of his head. We need to figure out what it is... but it does not seem too concerning. Our surgeon believes it is from ECMO. We will see. I requested a consultation with the occupational therapist and physical therapist to get Wyatt up and moving!! His little voice is returning slowly. Because of the breathing tube, his vocal cords were probably damaged and need time to heal... so for now he is quiet Wyatt. Happy Thanksgiving, beside being thankful for Wyatt, we are thankful for Chloe and for all the family and friends that are praying for Wyatt and supporting and thinking about us. We would also like to thank Wyatt's nurse, Charla who always goes over and beyond the call of duty to care for Wyatt. Today Wyatt gave us a Thanksgiving card with his handprint.. thanks to Charla who helped him make it. Thank You.

No More IV fluid!

Wyatt is almost on full feeds now so his IV was removed and now he gets all his nutrition from breast milk. His CT scan yesterday showed no major changes. The blood in his right temporal lobe is absorbing. However, there is a slight increase in dilation in his ventricles but it's not causing a major concern with the neurosurgeons. They are continuing to watch him closely by measuring his head daily and making sure the soft spot on his head is still soft. Wyatt has a grade 4 IVH which could possibly cause hydrocephalus (fluid on the brain). So far... so good... keep those prayers coming! Today, Wyatt was awake during my visit... maybe I keep him awake?? Wyatt enjoyed his bouncy seat today, listening to the Hungry Caterpillar, getting held, and listening to me sing a bad version of the Itsy Bitsy Spider. Wyatt is growing to be a strong boy... he now weighs 9 lbs 10 oz. I am hoping to have a consultation with occupational therapy to help Wyatt get even stronger. Since he has been in bed for 6 weeks, I think it's important that he stretches and starts using his muscles.

Eating more...

My sister is a gifted writer and she recently added a comment on the blog that was very touching. She said, "Wyatt, I really enjoy your blog. My past time is to start at the bottom and scroll up. It is proof of the miracle God performed on you. Given your strong fight for life, I can only imagine what you will be when you grow up." Wyatt is making a difference in this world already and we are so proud of him. Wyatt's feeds are now increased to 22 ml per hour. When we reach 28 ml per hour, he will reach his maximum feeds... we are almost there. He also had a CT scan of his head today and we will receive the report tomorrow. His daily head measurements have not changed and he is not having seizures... all good signs! Wyatt still has fluid, but is getting suctioned less. Because he is weaned off his narcotics, he his much more alert, so to keep him busy, we hold him, put him in his bouncy seat, and a swing. He loves looking around. I want to say thank you to my good friend from college, Laura came to visit Wyatt over the weekend.

Keeping Wyatt busy....

Wyatt feeds are increasing to 12 cc's every hour. Even more exciting is that he is completely weaned off his narcotic- hydromorphone and is awake more during the day. Now that he is awake, we are trying to keep him stimulated. We installed a mobile on his crib and we plan on bringing the bouncy seat in tomorrow for him. I think he is tired of me reading the Hungry Caterpillar to him and playing the same CD over to him!! He is just so darn cute!!!!

Wide Awake!!

Wyatt is the bully of the NICU... he weighs a whopping 9lbs 5oz! Chloe, his big sis was weighed today and she weighs 19lbs... Wyatt is almost half her size in weight!! He is a strong little boy and today he was awake from 9:45am until 2:00pm! I held him most of the day and we starred into each others eyes all day long. It was so nice! Wyatt's feeds increased to 9cc's every hour and his hydromorphone (narcotic) is down to 3. He still has fluid in his chest, but he has been coughing more which is a great sign. Wyatt's staples were removed from his chest and the incision is healing very nicely. The wound in his neck is healing as well. It still looks gross... but the nurses are changing the dressing daily and it looks better.

Lucky

Our family is lucky to have excellent care for our son and a wonderful support network of family and friends. We have so many people to thank. A new team of doctors, Dr. Lawson (Director of NICU) and his team, will be caring for Wyatt for the next three weeks (they rotate every 3 weeks). We want to thank Dr. Gilmore, Neonatologist, and her team of fellows and residents for caring for Wyatt for the past two weeks. With their expertise, he was able to get off the ventilator, CPAP, and have a great decrease in his pain medications. He also started eating. We also like to thank our pediatrician, Dr. Goldstein, who goes over and beyond his call of duty. He regularly checks Wyatt's progress and calls us at home. Wyatt's doctor who placed in on ECMO in the PICU, Dr. Berkowitz, Director of ECMO still checks in on him, even though Wyatt is no longer his patient. Today, I requested to talk to a neurosurgeon and he called shortly after from the operating room to answer my questions!! Wyatt's surgeon, Dr. Chandler checks in on him everyday too and is super sweet! The nurses are wonderful too... they go the extra mile with Wyatt. Most importantly, our friends and family that e-mail, call, make us lunch, and offer to help. People that we have not talked to in years are contacting us as well as complete strangers. So many people are offering to help and the only help we need is your prayers for Wyatt. Thank You!!!!!! We are lucky.

Wyatt is doing great! His feeds are now 6 cc's every hour and he seems to be keeping it down. His hydromorphone (narcotic) is down to 6 (from 45). Wyatt still has fluid around his lungs which is making his respiratory rate higher than normal... so he breathes faster than normal. The wound in his neck from ECMO is healing slowly. It looks really gross!! It is still open about 1 cm, but the surgeons reassure me that it is going to heal. A wound nurse examined him today and placed a different type of dressing on it to accelerate the healing process. His head sonogram showed no major changes. It showed that some blood is getting absorbed (which is good!) and also showed some diliation in the ventricules (which is not good), but it's not too major and his head size is not increasing so the neurosurgeons are not worried.
Overall, it was a nice calm day.

Looking better than ever!

Another good day for Wyatt. He is almost weaned from his narcotics so he was wide awake this morning. It was so nice to hold him, looking into his eyes. Very exciting! He is also on continuous feeds and seems to be digesting the milk. Wyatt still has fluid in his lungs that needs to clear up, but in my opinion he is looking better than ever.

Happy Wyatt!!

Today was another great day! Wyatt looked so peaceful, happy, and comfortable today. It's the first time I saw him sucking on a pacifier. He is also tolerating his feeds better. The breast milk is staying down!! Most importantly, he was removed from CPAP (pressured oxygen)to just oxygen thanks to his awesome respiratory therapist, Laura!! Laura and a few other nurses go the extra mile to help Wyatt progress more and to make his feel more comfortable. We are very fortunate that he has such great care. Finally, Wyatt enjoyed getting a visit from his cousins, Jimmy, Maria, and Vicki.

Wyatt eats for the first time!

Yum Yum!! says Wyatt after eating 13 cc's of breast milk every four hours through his NG tube (feeding tube that goes through his nose). At first he did not like it and spit the milk up. I don't think I would like food going down my nose either!!Then the nurses decided to vent his feeding tube and now he seems to keep most of it down. His stomach is probably smaller than normal since it grew in his chest cavity. The surgeons said that his organs are probably not in the proper places in his abdomen, so his stomach will have to adjust to food. Wyatt looked so comfortable today and his stats were great. I noticed that his respiratory rate is much lower along with his heart rate. He is not breathing as hard which is a great thing!! Wyatt also enjoyed having a visitors other than his parents. My neighbors, Heather and Janice were so sweet to visit, and my parents were able to hold him for the first time!

Happy Birthday Wyatt!

Wyatt is one month old. I am in amazement how much Wyatt has accomplished in one month. Wyatt is such a strong, brave little boy who has overcome so many obstacles, more than most people have experienced in a lifetime. He always looks so calm and peaceful and fights hard to make progress. We are so proud of him. The doctor's and nurses at John's Hopkins are the best. It's always a team of doctors to discuss a plan for the day to help continue his progress. The team is comprised of the NICU doctors, Pediatric Surgeons, Neurosurgeons, hematologists, nurses, etc... We have them to thank for Wyatt's progress. We also have our wonderful friends and family to thank for their support and most importantly prayers. Please keep praying for Wyatt. Even though he has accomplished so much in one month, he still has a long way to go. The bleed in his brain needs to diminish. Wyatt also has a lot of fluid around his lungs, which makes it difficult for him to breathe. Finally, Wyatt's digestive tract needs to accept breast milk. Please continue your prayers....

Today was a great day! I felt like a real mom to Wyatt. I had a chance to give Wyatt a bath with real soap and water! I also had a chance to see him with no wires or tubes on him during his bath. Finally, I had an opportunity to hold him for a while after his bath. I am very blessed to have Wyatt and Chloe and my life.

Celebrate the little things...

Wyatt is staying strong. Over the weekend, he moved from the ECMO bed to a real crib!! He no longer needs the warmer. Another HUGE step was moving off the ventilator today!! He is doing such a great job. He still has a lot of secretions that makes it a little difficult for him to breath and he needs to be suctioned. His blood gases need to improve a little, but we finally got to see him without tubes coming from his mouth. What a happy moment.... words do not describe, so I will show you pictures.

The Simple Things in Life

Today was a great day with Wyatt.... well every day is, but today we felt like we have a newborn baby. We changed his diaper, rubbed lotion on him, and best of all, we were able to hold him for the first time for two hours. It was incredible! Many parents take holding a baby for granted, but we were waiting for three long weeks for this to come. Wyatt was so happy and comfortable in our arms.... but I think we were more happy!! Just to wrap our arms around his body and whisper in his ear, and pat his little butt is something we will never forget. We have experienced so many exciting things in our life, but this topped it all! We are so grateful for your support and prayers.. which got us to this moment. We have video and pictures to prove it. It was truly a memorable day. The nurses said that maybe on Monday, he will start eating.

BOO! Happy Halloween!!

Wednesday - Wyatt meets a celebrity!

What a day! Wyatt was moved to the NICU which is a step forward. In the NICU he will learn to eat and it's a quiet environment especially for babies. Wyatt had a very stable day.

The highlight of my day was meeting Dr. Ben Carson, world-renowned neurosurgeon. I was sitting by Wyatt's bedside and Dr. Carson walked up to introduce himself and I said,

I know you!! You are a celebrity!!

Our 7th graders read your book "Gifted Hands" and watch your play.

I was star struck!!! I could not believe that it was just me, Wyatt, and Dr. Carson. No entourage. He was very modest and very nice. People wait for months for an appointment with him and here is was examining our son!! I was so star struck, I forgot to get a picture of him and Wyatt or even ask all the questions I had. He examined Wyatt and said that his team is keeping a close eye on him.

The type of bleed that he has usually resolves itself and he told me to pray :))) Wyatt had a great Halloween. Again, thank you for everything. As I finished writing this, I just called to get an update and the doctor informed me that Wyatt had a seizure on his left side so I have to meet with neurology in the morning. Keep those
prayers coming.