Saturday, March 29

The official results of the heart ultrasound are back and show that the duct did not close with the first round of medication. Tobias will start another round tomorrow. He is using today to rest up. His weight is holding steady at 2 lbs 4 ounces today, the same as yesterday. His feedings were increased to 12 ml every three hours and his nutrition through the iv has been eliminated, at least for now. It does not seem like anyone could survive on just a couple teaspoons of milk, but he's pretty small and I guess the doctors know what they're doing. I was able to hold him today (for the third time!). He did ok, not as well as Thursday, but well enough that we were able to have a little bit of time. He seems even smaller when he comes out of the incubator into the real world.

I will let you know when we have any more news. I think it will be a long, slow process. As always, we appreciate your prayers and good wishes.

3 weeks old today!

Tobias has had a good day today. He now weighs 2 lbs 3 3/4 ounces and is looking good. His belly is positively round. He caused some excitement in the wee hours of the morning by trying to remove himself from his vent- and proving he is not quite ready for that yet- but has been very well-behaved since then.I was able to hold him this morning (for the second time!) and he did just fine. No alarms or funny numbers, just settled down and napped. Quite a change from the boy who did not even want to be touched. And he continued to be fairly stable all day without a lot of the usual yo-yo numbers that keep the nurses running in and out. He was displaying some of his old tricks before I left tonight, but I imagine we wore him out.

He also continues to do well with his feedings and is finishing up the first round of his heart medicine today. He will have an ultrasound tomorrow to see how his heart is doing. Other than that, the immediate plan is sleep and grow.

The Toledo News

Greetings from Toledo-

The good news is that things are progressing slowly here. The doctor told me that bad things happen quickly and good things happen slowly. So we are content with the pace here. Much of the time is spent monitoring a variety of things- numbers, numbers, numbers,- and attempting to maintain the best balance possible.

The news in a nutshell-

The results of the heart ultrasound are in. Before a baby is born, the heart has a bypass which allows the blood to skip the lungs since they are not yet functioning. This duct often does not close properly in preemies and that is the cause of the murmur. Toby has begun a 3 day treatment w/ drugs to encourage it to close. It will be checked again at the end of the week. The doctor says they will try drugs 3 times before judging them a failure and considering surgery.

Tobias had his second blood transfusion yesterday evening. He feels much better now! For several days he had been unable to tolerate stimulation and I had even had to give up touching him. (It made some of those aforementioned numbers go crazy.) He is working so hard just on his basic body functions that he has no energy left over. And that was compounded by the anemia and blood lost to the monitoring so he was feeling a bit run down. He is doing much better today, though still not welcoming too much hands-on. (Interesting fact- a baby his size has only about two and a half ounces of blood and will not be able to maintain his supply for several more months. Expect more transfusions.) He officially passed the 2 lb mark today. (I think the added blood helped. Is that cheating?)

He is now receiving almost 2 tsps of milk every 3 hours through his feeding tube and is tolerating it well. The rest of his nutrition is still through an IV. He is expected to remain at this level the rest of the week while the heart problem is treated.

Thank you all for your prayers and support. You are a big encouragement to us. God is faithful and you are an evidence to us of that.

They will be taking an ultrasound of Toby's heart tomorrow, to see if the suspected murmur is real or not. If the murmur is real, they will be able to assess the extent of the damage.

He is adjusting well to being fed, and they have increased the feedings to 4 miligrams every 3 hours.

The Ronald MacDonald House continues to take good care of Mom. A group came in this morning and cooked a wonderful Easter breakfast. She is healing well.

Two Weeks

Happy 2 week birthday, Toby. He has had a pretty good week. It's been 3 days now on the regular ventilator and he is handling it ok. The doctor explained to me today that his lungs are damaged and beaten up from being on the ventilator when he was born. But the x-rays show that they are not getting any worse, so it will just be something to deal with and which will require extra care when they attempt to wean him off the vent. He has an on again off again relationship with the light to deal with his bilirubin. About what I would expect. And there are some other things which are a balancing act between the damage that treatment can do and the hazards of not treating. But all in all, I think he's doing pretty well. No major problems to deal with yet. God has indeed been merciful and sustained Tobias through all this. And tonight-I have just returned from holding my son for the first time. What a sweet privilege! He seems even smaller wrapped up and placed in my hands. No bigger than a minute. I think there were more tubes and wires than there were baby. Our time had to be cut short because of some problems with his breathing tube and heart rate, and the minutes we did have went by in a wink (Isn't time funny the way it speeds and slows), but thanks be to God who gave us the good gift of that time. It made this mama very happy. And thanks to all of you who are praying with us and for us. We know that God is good and in control and we thank him also for the peace He has given in this "storm".

Nancy

Another update from Toledo

I spent the morning with Toby. He is doing well and enjoying his new ventilator. His numbers on it are improving and he is not working the nurses so hard. His weight this morning was 1 lb 14 ounces- so he is back up to and a teeny bit above his birth weight. The morphine was changed to "as needed" status, and his nurse this morning found that he did not need it. So that is good news. And joy of joys (whoever thought this would be good news?), I was able to change his diaper this morning. How exciting it was. If he continues to do well, in a couple days I may be able to hold him. He IS back under the light and not cooperating fully in every area, but overall, he's doing pretty well. Praise God and keep praying, as do we, that as God promised, His lovingkindness will not depart from us.

changes

Toby has been taken off of the oscillating respirator, and put back on the calmer one. He is also receiving one milliliter of milk every four hours to see how his little stomach will handle it.

Week Two

We have now entered the waiting stage. Over the next few weeks, there really isn't going to be much to update. The doctors will continue working on stabilizing Toby and keeping him breathing. This week, they will start giving him milk, a milligram at a time. They will continue to monitor his lungs carefully, and perhaps try to take him off of the oscillating ventilator.

An email update from Toledo

The doctor said the ultrasound of Toby's head was normal. This means he made it through the first week without a major bleed. He could still have one, but the chance is now much less. Previously, we had been told it was 40%.

The three main areas of concern now are:

1. Infection- always a danger.

2. Respiratory- He has been receiving daily chest x-rays. He was put on the oscillating ventilator because the tests showed that his lungs are leaky. The most recent ones have shown that he is not getting worse in this area. The doctor would like to see signs that the problems have resolved before he attempts to put him back on the other ventilator. Several times this ventilator has been described to me as "tricky" and "as high tech as it gets." We will not be able to hold him or consider a transfer as long as he remains on it. But he is tolerating it and his #'s are ok on it.

3. Feeding- maybe this weekend or early next week, they will begin to introduce milk to his system, beginning with 1cc at a time (1/5 of a teaspoon) through a tube into his stomach. He is currently totally nourished through his IV. If there are no problems, it should take 3 - 4 weeks to get him up to "full feeds", or receiving his nourishment through his stomach. But his system is so undeveloped that it is not likely to go that smoothly and he will be closely monitored for the many complications which can occur.

He came off the light yesterday as his bilirubin #s were good and we can now see and enjoy his little face. He has his long term IV in place and the catheters into his umbilical site have been removed. He has to be sedated while on the oscillator but is still somewhat active. He does not like to be disturbed and needs a low stim environment.

Praise God that he has survived the critical 1st week. Happy 1 week birthday, Toby. He was born at 24 weeks gestational age, 16 weeks early. I have been reading the book and literature I have. The charts and info do not deal with any younger gestational age because he was truly at the outside edge for survival. Since the doctor who did the surgery observed evidence that the bleeding had been occurring for some length of time (weeks), we are praising God that his timing is always perfect and he held everything together and allowed Toby that necessary time in utero. Looking at him is like looking at perfection as he is so fearfully and wonderfully made. So tiny, yet so perfect. Two things we know about God- his power and his lovingkindness. (The end of Psalm 62)

Tobias means "The Lord is good" and Nathaniel means "gift of God". Please pray with us that his life would be God-glorifying. Thank you so much for your kind thoughts and prayers. Please also pray for the older siblings who have had their world turned upside down. Thanks to the kind ladies who brought them down for a visit today. We will need a lot of wisdom as we make decisions in the next days, weeks, months. We have been told to plan on a hospitalization which lasts until his due date of June 21st

At the end of the first week

I should have more to update later, but for now, this is it.

The doctors took an ultrasound of Tobias' head today, and there were no signs of bleeding. This is very good news, as the possibility of bleeding and subsequent brain damage was very high, especially in this crucial first week. We are so very happy to hear this wonderful news.

The kids were able to go visit today. The younger ones especially were thrilled to see their mother. It has been a long week for them. We are immensely grateful to the wonderful people from Cement City Baptist who drove the whole passel of kids all the way out to Toledo.

More Pictures

Cindy and Janet spent the last night and day with mom, helping her get moved and settled. While they were there, they took some really good pictures.

I received an update from Mom this morning, below is what she had to say about Toby.

"Toby is pretty much the same. He started having episodes yesterday morning- and continued through the day - in which his heart rate drops way down and then recovers to its normal pace. The nurse says this is normal, but it is something new and a bit disconcerting to observe. Also, I asked about holding him after they remove the umbilical catheter and put in the PICC line ( I don't think I spelled that right). She said that I will not be able to do that while he is on the oscillator and until he has been off it and stable on the other respirator for several days."

On to the fifth day

Mom has moved into the Ronald McDonald House. From what I hear, it is a wonderful place. It will provide her with lodging, transportation to and from the hospital, and there are even volunteers who come in and cook food. We are very grateful for this provision.

Tobias had a simple night with no changes, so continues to do well.

The mailing address for Mom is:

Nancy Hendrickson, Room 7
Ronald McDonald House
3883 Monroe Street
Toledo, OH 43606

It's a Miracle!

We have just received wonderful news. There is room in the Ronald McDonald house for Mom, and she will be moving in there probably by nine o'clock tonight. This is definitely an answer to prayer and a wonderful development.

P.S. I was recently informed that commenting was disabled and have fixed that. Please feel free to leave any comments or messages.

Day Four

Mom is being released from the hospital today, so she is recovering quite well. Toby had a blood transfusion this morning. Poor guy, the doctors keep taking the little blood he has, and his body can't produce enough to keep up. It sounds as though the transfusions will be a fairly regular thing, at least for a while.

End of Day 3

Mom and Tobias continue to do well. Tobias is doing fine with his new ventilator and oxygen level.

We're still not certain where Mom will be staying when she is released from the hospital, but it sounds as though there are a few possibilities.

An Early Birthday

Tobias Nathaniel

born Thursday, March 6 at 3:28pm

1 pound, 13 ounces

13 inches long