9 Jan PM

Tommy Update
Tommy did something amazing today...he was laying on his tummy with his face toward Tricia, and he lifted his little head up and turned his head so it faced the other way! Tricia was amazed! The nurses told her that did not surprise them at all. They use a padded flexible cushion that wraps around his sides and feet and kind of squishes him to keep him all tucked in and comfortable. They said that a couple of nights ago, he managed to get himself on top of the cushion and had his arms and legs dangling over either side! I told Tricia that it was no big deal that he lifted his head up--after all, it can only weigh a few ounces at most! Hee Hee.

Because of his many movements, IVs have not lasted very long. In the last two days, he has had IVs in three different spots, and when the IV tonight quit working as well, they decided it would be better for Tommy to get a more permanent IV that goes directly into an artery. Tricia had to sign a consent form for the procedure to take place, and they reported that they got it in on the first try and that it was working great. I'm still not sure where exactly it went in, but the research I did said it usually goes into an arm or leg. The IV is called a PICC line--that stands for something, but I forget exactly what. It can last up to a month because it extends farther into a large artery. That is good news for Tommy who already has to suffer from daily heel sticks to test his blood. His poor little heels look more like pin cusions with all the little sores on them! :-(

Tommy is still feeding well, and he is now just about 25 grams from his birth weight...that equates to about 2 pounds, 10.2 ounces right now. Wonderful news, huh? As they increase his feedings, they expect that he will rapidly gain weight.

One more Update

I just talked to Tricia--they had to move Tommy's IV again!!! Now it is back in his foot. But, they say that he is getting very close to the weight where they start letting him regulate his own temperature!! That is one of the criterion for him to come home! Then, once he gets to be 4 pounds, he'll be taken out of the incubator. Those little glimpses of hope are sure nice to see! They are also bumping his feedings to 8.5 ml tonight at his 11:30 pm feeding.

Also, while you are praying for Tommy, Karina Sones is another little girl worthy of prayer. Many of you know her, but in case you don't, you can visit her journal here

Basically, she had lukemia, and they did a bone marrow transplant on her (I think she is about 7 years old). The bone marrow took well, but now she is fighting some other infections that bubbled up in the last few weeks. They were stationed her in Altus and then moved to Washington DC. They are a very sweet Christian family, and we were blessed to know them while they were here.

Just a couple more days until more pictures!!

8 Jan PM

Tommy is still progressing well. He is up to 7.5 ml/feeding. They had to move his IV, and I guess Tricia had to wait for an hour while they did that--they had lots of troubles getting one to work, and I would guess that was pretty tough on our little guy. The IV is back in his head again, and that is so emotionally tough for Tricia to see. Today was the first time she has been up to see him without me being there, so it was a pretty tough day for Tricia. The good news is that they are decreasing the amount of IV nutrients that Tommy gets which means that in a few weeks, he won't have a need for the IV any more--as long as he keeps digesting the breastmilk well.

I went back to work today...only for about 6 hours or so. It was nice to get back into the swing of things. All three kids had school today (Kimberlyn, our youngest, goes to Mother's day out). I was pretty worried that they would have troubles getting going, but they all did just great! I am letting Robby stay up late tonight to watch the game--probably a bad idea, but he and my mom just love football, and I figured it would be a nice treat for both of them (and me) to enjoy watching the game together. As you know, being in the military makes it so the kids don't get to spend as much time with extended family as most other kids, so I think the benefits outweigh the costs in this case.

We had a wonderful dinner of sheppard's pie delivered to us...very yummy. We have delivered meals to people before, and you just don't ever realize what a huge help and blessing those meals are until you are on the recieving end! Thanks!

That's it for tonight. Thanks for your continued prayer support---God definately has His loving hand in our lives!

7 Jan PM

Tommy
Tommy is up to 7 cc's of fluid every 3 hours--which is about 1/4 of an ounce each feeding. So that makes a grand total of about 2 ounces per day of food. They are steadily increasing that, so hopefully, he'll be gaining some more weight soon! He is up to 2 pounds, 8 ounces.

Tricia left back to OKC after church today. It was a tough time at the Nance household, so I took the kids to the park and then we had Pizza hut for dinner. Just a little treat to help us all feel better. Kaitlyn was in bad shape--she was crying her head off as Tricia left, and of course, that was really hard on Tricia too. But, Tricia made it up there and saw Tommy (got to hold him for about 30 minutes too). And now she is settled down at Glenda's house.

Oh by the way, Glenda said her arm was feeling much better. She said that she had been taking some medication from the Doctor, but was not sure if that was the cure or what...I think God is blessing her through our prayers and through her sweet heart--opening her house to Tricia. Thanks to God for Glenda!!

I'll be out of pictures for a while as Tricia has the camera with her, but when she gets back, I'll make sure we get some updated ones!

6 Jan PM

Tricia Drives
Tricia drove today!! I had a notepad and pen and documented several driving infractions on our 2 mile journey from the hotel to the hospital...including rolling through a stop sign--just to be a stinker! She did great and feels safe to drive now. We are home at Altus now after two visits to Tommy this morning. She is planning on returning to OKC Sunday afternoon, and I'll stay here. My mom is planning on sticking around a couple more days before she heads back to Omaha.

Tommy
Tommy is still doing well. He is now on 25% oxygen through his nose--just to help him a bit more as he had a couple of incidents where he shallowed his breathing and his heart rate dropped. They don't seem to be worried about that at all, and they are just working on making sure he doesn't regress. After they checked his blood, they do not anticipate that he'll need to be on the ventilator again, so that is a blessing. There are lots of complications that come from the ventilator including wild blood pressure fluctuations and issues with blood vessles in the eyes, so keeping him off that nasty thing is their priority. Other than that, he continues to slowly gain weight and is now up to 6 cc's of formula every 3 hours. He has digested the last two days of feedings very well with either no remaining milk or about .5 cc's remaining, so that is just awesome.

The Altus Kids
I showed the kids some videos and pictures of Tommy when we got home. They had lots of questions, but mostly, they want to know when they can hold him--especially Kaitlyn. I really wish we could take kids into the NICU, but I know that they are little germ factories, so the potential danger to Tommy is just too great. They'll have plenty of time to love on him once he gets home!

I hope all is well with all of you, and thanks again for all the sweet emails, calls and support you have given us. We truly appreciate it!

5 Jan PM

Sense of Humor
Well, I think we saw the first glimpses of Tommy's humorous side--well, I really doubt he meant to do it, but it was still funny. The nurses weigh Tommy each night, and tonight was no different. Except for the fact that Mommy and Daddy were there to help, so he decided to put on a little show for us. First, the nurse disconnects his electrical leads to help get him out of the isolette. Then, she started changing his diaper. The original plan was to take his diaper off in the isolette and then lay him on top of the clean diaper which was already in the scale. As she put him in the scale, he started pooping all over the place! But, she had her hands full of him and the leads, so I helped hold him as he continued to poop right on the blankets in the scale. While I was holding him, the nurse got a new diaper ready, and while she was trying to put it on him while I was holding him, he decided to begin peeing! So, now I had pee all over my hands while trying hard to steer clear of his butt as it was pretty messy. What a crazy little boy! We finally moved him to a dry spot on the scale and got his diaper on before we weighed him! Whew! Then, I cleaned off my hands and the rest of the visit went smoothly.

If I remember correctly, he weighed in at 1128 grams which is about 2 pounds, 7 ounces--just 4 ounces from his birth weight.

With the nasal tubes delivering air to him, he had only a couple of episodes of lower breathing rates and lower heart rates--so it looks like that did the trick.

Glenda Booker
We also had a nice visit with Glenda Booker (Brent Booker's mom) who offered up her house to Tricia while Tommy is in OKC--what an incredible blessing she is! While you all are keeping us and Tommy in your prayers, say an extra prayer for Glenda for us...she told us her arm has been hurting her the last few days and said the doctor thinks she may have a torn rotator cuff. We pray that God heals her arm and totally eliminates her pain. She is such a sweet-spirited woman, and we are so grateful to have met her!

Tricia and I will be home tomorrow afternoon. I look forward to heading back to church Sunday morning!!

Friday, 5 Jan AM

Peeking out at Daddy

Tommy
Tommy is still hanging in there. He had a bunch (10-15) episodes of "low sats" (low oxygen saturation in his blood) last night. They only last from 5-30 seconds and then things are back to normal. It sets off alarms, and the nurses come and rub his back or move him around a little, and that takes care of the problem. They say that his brain is just immature and forgets to fully breath sometimes. So, they put the tubing that extends just a little way into his nostrils back in--it is not delivering any oxygen, but instead, it just gives a little positive pressure to his lungs to help remind him to breath.
Brain Ultrasound
Tommy's ultrasound came back about the same as last weeks. It was not any worse, so that is good, but it is not much better either. The Dr. reminded us that things like this generally don't change over night. They may take weeks or months. Having this low level of bleeding, he thought, should not raise his risk of mental retardation or any other problems over his already increased risk by being premature.
Tricia and I
Tricia is doing well physically. We both find that this whole experience has been emotionally overwhelming. I am tired, but I get plenty of sleep--even a nap after lunch. Tricia is the same way. While I don't find myself worrying very much, you can't help to think about the end results of all of this and what we can do now to help...the kangaroo care is really important for both Tommy and us, and us being here is also good for Tommy. I have decided that Tricia won't be able to be the sole provider for Tommy during the rest of his stay at the NICU--she is going to need a few days away from this every couple of weeks...like Tricia said, the NICU is just emotionally draining...it is kind of like Disney World--it is wonderful to be there and we love to see Tommy, but after you walk out the doors, you feel the weight of what you just experienced. It is a daunting task for a parent to see his little baby boy frail and helpless with tubes all over--I have great hope for the future, and I am thankful for God's love and everyone's support, but it is still very tough to see him that way.

I found an article a preemie mom wrote in a magazine I was reading--I think she summed up Tricia and my feelings really well. This is hard for me to read without becoming emotional...she wrote:

While I was busy planning a picture perfect future for our family, life took an unexpected turn. We never planned on having a preemie. We also never planned on depending on such wonderful neighbors...We never planned on becoming so close to to othher parents in the NICU sometimes not even knowing their names. And finally, we never planned so many prayers would be said for [our family] during the most difficult time of our lives. Ben's birth at 24 weeks cahnged our lives. We have learned to love unconditionally. As parents of a preemie, we don't worry about a 5 or 10-year plan for him. We celebrate life each and every day just by looking into his precious little face.

Like I told Tricia--no matter how this whole thing turns out. No matter whether Tommy is mentally challenged or worse, God has blessed us with a precious little boy created in His own image, and the more time we get to spend with him, the more we are blessed.