Today...

....Nate was sleeping so deeply when we arrived that we didn't have the heart to wake him up. We would normally raise the top on the isolette or pick him up and hold him. Today we just watched him peacefully sleep and quietly grow....but tomorrow all bets are off- he is ours to hold- asleep or not!

Mommy and Daddy

Every day is a new day...

...and a new first. Yesterday Patrick was able to hold Nate for our visit. Nate was very calm and slept most of the time. They got some good father/son bonding time in. We heard him sneeze for the first time last night. That was pretty darned cute!

Tonight my mom (Linda) was able to hold Nate. She had never held him and was quite apprehensive at first, but figured out quickly that he is not as fragile as he looks and she wouldn't break him. After that I do not think that we could have pried him out of her hands. The next time they visit it is my dad's (Larry) turn to hold him.

He really is growing fast. 3lbs 3 ounces tonight!! (1455 grams).

The sound of our son...

...was heard tonight. We actually got to hear Nate cry tonight for the first time since he was extubated this weekend. I was able to get him out of the isolette tonight and hold him. He was very vocal for a few minutes until he found a comfortable spot on my chest, at which point he went to sleep and stayed asleep and quiet. He was wide eyed at first and kept lifting his head and looking around, turning his head side to side. I had no idea he had that much strength already. I had seen him turn his head, but not lift it up, hold it up, and look around. I kept telling him- "I don't think you are supposed to be doing that yet", but he wasn't listening to me. I have a feeling this is the first of many things he won't be listening to.

Leeann and Patrick

Another step today....

...Nate was taken off the mask CPAP and placed on the high flow cannula. He is still on no additional oxygen- just air to keep the lungs inflated. He looks good and his face is much more visible and much less scrunched without that tight mask. He is proving himself to be a fighter every day!

Breathing freely....

....well, close. Nate had his breathing tube removed at noon yesterday. He has been off of the ventilator for over 24 hours now and doing well. He is now on a CPAP machine. A continuous positive airway pressure (CPAP) machine was initially used mainly by patients for the treatment of sleep apnea at home, but now is in widespread use in intensive care units as a form of ventilation. The CPAP machine blows air at a prescribed pressure up the nostrils to help keep the airway open. He is on very little additional oxygen. He does have a mask over his nose and a hat on that is helping to hold the mask in place as you can see by the pictures. By the beginning of the week, we hope that he can change to a nasal cannula so we can see his beautiful face.

He is 3 pounds now!!

Don't forget you can click on the pictures to enlarge them.

Leeann and Patrick

Our son....

...is doing very well. Today he had his first eye exam. Many premature babies have ROP. Retinopathy of Prematurity (ROP) causes a disease of the retina. It affects prematurely born babies. It consists of abnormal retinal vessels that grow mostly in an area where normal vessels have not yet grown in the retina. ROP is divided into stages 1 to 5. Nate's score was a zero- meaning his eyes are good! He will have them reevaluated in 2 weeks. I will keep you updated on this as well.

Also, tomorrow they are going to begin to do blood gases once daily instead of twice daily and he will have his ventilator rate decreased by 2 breaths per minute each day as long as he can tolerate this change. Hopefully this will lead to him no longer needing the ventilator soon.

We were warned when we started this journey that this would be a roller coaster of good days and bad days. Yes, we have had a few speed bumps, but no terribly "bad" days so far. We consider ourselves very lucky and we appreciate all of the support and prayers of our friends. Furthermore, we are grateful to the wonderful staff at All Children's hospital. They are amazing. We are fortunate to have such a valuable resource here.

Leeann and Patrick

This weekend...

...Nate did well- his ventilator settings are slowly being weaned down- I was told that if all goes well, we can expect him to be off the ventilator in 10-14 days- I was told that on Friday. Today they increased his caffeine medicine dose- the caffeine is to facilitate the drive to breathe- as he gains weight, they have to increase the doses of his medicines. Also, he was started back on small feedings through his feeding tube today. He had been off since a few days before surgery. In the second picture you can see the incision from his surgery-- it is looking good and should heal up nicely! He looks good and is looking so much like a little baby now.

Be sure to click on the pictures to enlarge them!

I got to enjoy spending some time with my son tonight. When I got to All Children's, he appeared to be grumpy. After being suctioned and turned to his stomach his mood appeared to improve. Although he was not as feisty as usual, he was grabbing my finger and then going quickly to sleep. He appears to be recovering from his surgery nicely.

Patrick

Today was the day...

..... Patrick and I both went to work today. I received a call at 7:50 am from the PA for the cardiac surgeon. She informed me that the surgery was scheduled for 4 pm today. I called Patrick and we both arranged to leave work after noon to go to the hospital. The surgery did happen as planned and Nate did very well. He is pretty heavily medicated to prevent pain, but looks great. Hopefully we can start to wean the ventilator later this week. We will keep everyone informed!

Cancelled......

... we arrived at All Childrens at 9:30 am- two hours early as requested. We were told that the surgeon was running behind because his first case was started late. At 1:10 pm we were told that the surgery was canceled because the surgeon was not feeling well. It may be rescheduled for Wednesday - so I guess we will both take another day off of work on Wednesday.

Patrick and Leeann

Tomorrow....

.....is Nate's heart surgery. Tomorrow they will fix the PDA and a few days later we can start to wean off of the ventilator. He has had a good weekend. Yesterday his nurse said he was a "wild one" when she turned him to lay on his side. He is still much happier laying on his belly. He has lost that micro-preemie look and started to fill out a bit. He is now 2 pounds 5 ounces. In 9 more ounces he gets to start wearing preemie clothes!! YEAH!! Here are some recent pics from yesterday.







We will update everyone tomorrow night on how the surgery went.

Patrick and Leeann

They call it PDA... Patent Ductus Arteriosus... click picture below for an enlarged image.


This is a normal in a fetus, but closes after birth. Nate's has not closed despite 3 rounds of medication and this is preventing him from establishing a normal blood flow, which is not allowing him to receive as much oxygen rich blood as he could if it were closed. So sometime this week, Nate will have heart surgery to close this PDA. From what I have been told, it is a common surgery in preemies and not a difficult surgery. The good thing is that after the PDA is closed, hopefully they can start to try to wean Nate off of the ventilator. When he is off the ventilator, they can start to try to get him to feed. We still have a couple of months in the NICU, but he is making progress.

Oh and he is now 2 pounds 4 ounces!

Leeann

Sunday....

......today I got to hold Nate for nearly 3 hours. He was very calm and slept almost the entire time. He gained another 30 grams yesterday, so he is 2 pounds 1 1/2 ounces today. There are no other significant changes to report today, but I will write as soon as there is.

Leeann

Daddy's Turn....

Tonight I got to hold Nate for almost three hours. It was a good feeling to be able to hold my son. He was very mobile today and he had very definite opinions about how he should lie on my chest. His Neonatal Intensive Care Unit (NICU) nurse would position him and then he would shift into a position he preferred. After many tries, Nate found a position that he was comfortable in and his ET (breathing) tube was in a functional position that his NICU nurse approved of. It was amazing how strong he is. He moved his head and used his fingers and toes to moved his body around. I look forward to more movement in the future. I feel hopeful that he has made so much progress. While he has been in NICU, he has maintained good breathing, and is gaining weight. Today he is just over two pounds. On the way out of NICU, Leeann and I got stopped in the hall by another parent. I realized that he was going through almost exactly what we were three weeks ago. I realized how lucky I am to have a child who is progressing as well as Nate is and the support of family and friends that we have.

Patrick

PS- You can click on pictures to make them bigger.