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Saturday, April 28, 2007

April 28

We had a nice long visit with Miller Lee tonight. His breathing is progressing very well. He's alternating CPAP and Cannula in 4 hour intervals and his rare apnea episodes have almost disappeared.

We learned a couple of interesting things today...Miller's blood type is O negative, which is very rare. His mom is O positive and his dad is AB negative. The interesting thing is that his namesake ( His Great Grampa Lee ) was also O negative. In fact, since Miller's been in the NICU, we've felt his Great Grampa's presence all around us.

We also reviewed his APGAR scores for the first time. From what we understand, APGAR is a test administered to newborns to gauge their overall health at 1 minute, 5 minutes, 10 minutes, and 15 minutes (if necessary). Miller scored 3 on the 1 minute test, 6 on the 5 minute test, and 9 on the 10 minute test (At'a boy!!!).

The thing that still worries us though is the grade 4 IVH. We've talked to a couple of the Nurse Practitioners and a Neonatologist. The popular opinion seems to be that the IVH puts him at an increased risk of developmental problems associated with hearing, sight, speech, motor skills and, in rare cases, cerebral palsy. Of course, we are very concerned about all of these issues and we hope and pray that Miller's health isn't severly impacted by any of them.

The good news is that he's exceeding everyone's expectations for his breathing. There will be bumps in the road ahead, but he's really doing exceptionally well in that area. His movements are normal and he kicked ass on his Apgar. He's digesting the colostrum just fine and all of his vitals are on the very high end of the scale.

We continue to focus on the positives. Yes, we're worried about all of the other stuff but all we can do is support him with as much love and encouragement as we can.

Thanks for all of you thoughts and prayers.

Love, Danny and Stephanie

PS - Katrina's King Ranch Chicken is Awesome!!!
Please forgive the back to back updates. It must be therapeutic because I'm drawn to post whenever we have any news at all.
Today's little setback was a tough one. An Intraventricular Hemorrhage sounds really scary. However, we've learned that they are very common in pre-term babies and they are usually so slight that, if not for the brain scans, you would never know it happened at all. The baby's system will tend to reabsorb any IVH blood naturally over the first few weeks, just as the blood from a bruise would be reabsorbed by the body. Now, Miller's situation is a little more than slight. He's a grade 4, as opposed to a grade 1 or 2. But, all of his other signs continue to point in a very positive direction and that continues to bolster the prognosis that he'll pull through this just fine. He went back on the cannula tonight at 8 PM and, as of 9:30, he had yet to experience an episode of apnea. So, he's getting stronger and learning how to breathe more efficiently. We hope and pray that his IVH dissipates naturally and he experiences no lasting effects. This is a distinct possibility, and probably a likely one. Please keep the faith and keep sending us your thoughts and prayers!
Love, Danny and Stephanie
Miller's cranial ultrasound came back and the findings aren't as ecouraging as we'd hoped. With all of his other tests going so well, the staff really expected his grade (severity of the bleed) be in the 1 to 2 range. Miller's was a 4. It was contained to one area on one side, but it is concerning. What does this mean?
Unfortunately, they can't tell us. According to the doctors, a lot of the pre-term babies having bleeding and most of them get through it with no problem. However, with the bleeding, there is a higher risk of problems down the road.
So, the bottom line is that we hoped not to see any bleeding at all on the scan. The fact that we did see some bleeding concerns us, but it's not devastating. We knew there would be setbacks and I think this is our first one. Tomorrow's a new day.
Thanks for all of your thoughts and prayers. Love, Danny and Stephanie
Well, today begins chapter 2 of our little story. Miller is doing just fine and momma got discharged from the hospital. It was a quite a chore loading up all of the flowers and gifts, but I have no doubt that the spirit in which they were given is what gives Miller his strength. Thank you so much for that.
Little Miller is off of the CPAP for the time being. The nurses replaced it with the cannula this morning at 10 AM. He's had to work a little harder for his breath and tends to get a little wiped out. He'll reach a comfortable rhythm and relax to the point where he forgets to breathe. This is called apnea, and he'll experience an episode every now and then. The good news is that his episodes are shorter with each occurrence so we hope that means he's figuring it out. If the extended cannula experience proves too be a little much for him, they'll back him down and resume CPAP treatment.
Miller also had a cranial ultrasound this morning. This will tell us if he's had any bleeding in and around his brain. All of the signs thus far point to a clear scan, but we won't know for sure until they read the pictures.
Momma's having a tough time...her message is below:
Hello Everyone,
I just want to thank you all for your unending support, love, and prayers. Danny & I have been so comforted by your amazing response to Miller's early arrival. I was released from the hospital this afternoon and am resting at home. Today has been quite a challenge and I am having a a little trouble but I know we have the strength to get through this time and be the best parents Miller could ever wish for! I consider his isolette his new womb and his nurses his surrogates. We are still planning to bring home a bouncing baby boy in July. The next few days may be tough since I am still raw with emotion from leaving our son in the hospital but we know he is in great hands and he will pull through this. Thank you all again for everything. Love to you all-
Danny & Stephanie
Miller continues to improve. They're challenging him, though. We were able to some Kangaroo Care today ( skin to skin with momma ) for about an hour. In order to do this, the nurses had to remove his CPAP. They replaced it with a cannula, which is about the closest you can get get to zero assistance.
With the cannula, he would have streches of grunting, an indication that he had to work a little harder to keep his airways open. After a bit, he would relax and breathe normally to the point where his breaths became a little too shallow. This would start the cycle of grunting again. It will probably take him awhile to make the adjustment, but we're still very encouraged by his progress.
The Kangaroo Care was awesome. Momma got to hold him real close for about an hour and it was a sight to behold.
We have a big test tomorrow. Miller gets his cranial ultrasound to determine if there is any bleeding in his little brain. We are optimistic, but as always, your thoughts and prayers are much appreciated.
Love, Danny and Stephanie
Miller's got his work cut out for him today. The doctor has reduced his CPAP air pressure assistance to level 5, the lowest setting they use before removing it all together. He's laboring a little bit but hopefully that means he's building strength in his lungs.
The nurses have relocated his IV a couple of times. They say it's normal, and I think it's a result of his activity. They're talking about inserting a PICC ( peripherally inserted central catheter ). This is a more permanent type of IV and will give the nurses direct access for medications and supplements. It will also protect the lines from his karate chops.
So, Miller has a lot going on for the next few hours. It will probably be a little rough on him, but he's a tough little guy. We hope to have a photo session today and we'll post them if we do.
Thanks for all of your thoughts and prayers.
Love, Danny and Stephanie
Miller's had a great day so far. His breathing is stable with the CPAP. His current air pressure setting is 6, one level above the lowest. A level 5 means he would be getting almost no air pressure at all from the machine. The plan is to bump down to level 5 tomorrow and maybe even remove the entire apparatus by Thursday.
He was quite vocal today and he's developed a nice little karate chop with his right hand. He seems to have a healthy skin tone.
Momma's doing great. They've pulled all of her IVs and she's back on her own diet. We hope to take her home on Thursday.
Miller's hanging in there and I think he's encouraged by all of your positive thoughts and prayers. Keep 'em coming!!
Love Danny and Stephanie
This is our attempt to keep evryone in the loop. It's a public group so please send it on to extended friends and family.
Baby Miller is doing great. He was admitted to the NICU at 3:30 yesterday and was immediately put on a ventilator to help him breathe and stimulate his lung function. At about 10:00 PM, the doctors told us he had advanced to the point where they wanted to take him off of artificial respiration. He's now on a CPAP, which pushes air into his pathway but does not breathe for him. He's been breathing normal air for a little more than 12 hours and the short term prognosis is very good. Little Miller is exceeding the doctors expectations right now but he's got a long way to go. There will be numerous tests over the course of the next week and we'll do our best to keep you all updated. We're taking it day by day and cheering him on every chance we get. Thanks for all of your thoughts and prayers.