And Home Again

It seemed like a long night last night as I lay there feeling my lungs become more congested and knowing that meant I would need to get up and pack for home. I long to be in Toldedo and be sure Toby gets the "mothering" he needs, beyond the physical care from the doctors and nurses. My comfort is the certainty that God sent this illness to direct me to where and what I should be doing for the good of all. So I am home again, with a doctor's appointment in the morning and the chance to do a few more things here. For plans beyond tomorrow, I will wait and see.

Toby was doing ok when I left. He has continued to have poor gasses so the doctor again made changes to the ventilator. He actually switched modes and settings back to where he was 3 or 4 weeks ago, if I remember properly. I was not able to talk to the doctor, but this does not feel like progress. All along, the doctors have said that they let the babies tell them what they need. So let's thank God that Toby is getting what he needs and continue to pray that his lungs improve.

And we're back . . .

I arrived back here in Toledo last night after a weekend home, resting and sorting out a few things. It was good to be home and it is good to be back. I missed Toby all out of proportion to his size and entertainment value. I saw him a couple times today and he basically continues to just lay there. (And yes, look cute.) His cheeks are a little chubbier; he is flirting with the 3 pound mark. But he does not seem to have learned any new tricks. He also has not made any progress towards getting off the ventilator. Today the doctor ordered an increase in the support Toby is getting from it because of another poor blood gas. But basically, we continue with the status quo and the waiting game. I did not visit for long or help with his care today. I do not want to take any chances until I am sure this virus I had is completely gone.

7 weeks and 1 pound later . . .

Yes, Toby is now seven weeks old and has officially reached the 2 lb 13 oz mark, one full pound above his birth weight. He has been gaining weight rapidly this week, esp. when compared to the week following surgery. We are praying that he quickly gains the strength he needs to breathe on his own so he can get off the vent and on to the next stage.

I have picked up a virus someplace and am not able to help in his care, temporarily. Respiratory infections are very dangerous for preemies, so as difficult as it is, I am not able to be in the NICU. Please pray that I recover quickly and also that I did not pass it on to Toby before I knew I had it. I am going to make my first trip home today and try to get a few things done there.

playing dress up

It's been said that clothes make the man,
and here he is-
with his new image.













































Toby has begun gaining weight again this week. He had been at a bit of a standstill after surgery, but is making up for lost time. Today the official numbers were 2 pounds 12 ounces- up about three ounces from last week. His official length is now 15 inches, significantly above the 12 1/4 he began at. The extra weight really shows in his face; his arms and legs remain quite long and spindly. I think that's why the clothes make him look so different.

Two steps forward and one step back describes his relationship with the ventilator. He had made some progress but lost ground because of poor blood gasses. He has continued to have a few problems today with maintaining the proper oxygen level. It may just be a matter of his lungs needing more time to develop.

It is amazing to me to compare the current photos with the older ones and see how far God has brought him. We can only watch and marvel at His goodness and the quality of His workmanship.

Here are some more pictures of Toby. It's possible to see his taped-up incision from heart surgery. It's also possible to see his beautiful eyes.

Saturday

2 happy developments:

Toby's PIC line (long term iv which he has had since about the end of his first week) was removed. This means he is doing well with his feedings and they do not anticipate any problems. He is now able to freely wave his little left hand around and it is one less tether to deal with.

He is clothed for the first time. When I arrived this morning, he was wearing a little "onesie"- made possible by the removal of the PIC. He looked very mature.

6 weeks old!

I was finally able to connect with a doctor for the first time this week. I wanted a summary of the big picture and this is what I got:
The heart is no longer a problem. The feedings are going well. So the main focus now will be the lungs- with a goal of weaning off the ventilator. However, his blood gasses are not good enough to be able to progress much in that area right now. It may be a slow process. Part of it is just that time is needed for the lungs to continue to mature. (They check his "blood gasses" by drawing blood and analyzing it. The levels of the different gasses in it and also the ph tell them mysterious things I have not figured out yet. I am still asking questions.)

Toby had another sponge bath tonight and is worn out, but resting comfortably with his clean, fuzzy head. He handled the bath surprisingly well, considering his behaviour earlier today which included a number of alarm bells. And he has not had any morphine since about 9 this morning; so the day is definitely ending on a positive note.

The recovery from surgery continues. Tobias had a pretty uncomfortable day yesterday so the pain med has been restarted. (One thing he is quite able to do is to communicate his wishes!) His feedings are increasing every 12 hours and he is now receiving 17 ml per feeding. Yes, that IS over a tablespoon! He was at the 13 ml level before surgery so has now began to progress in that area. He should max out sometime tomorrow at about 22 ml and stay there for a while. The iv supplements are also scheduled to stop although they will leave his PIC line in. (The nurse says it's Murphy's Law; if they remove it, he will no longer tolerate his feeds.) The latest x-ray showed that the post-op mucous problem in his right lung has been resolved, so he no longer needs treatment for that and has returned to his pre-op regimen. His ventilator support has been turned down just the teeniest bit. The weaning process begins!

As Kathryn noted, Toby is beginning to have periods of alertness and showing an increased ability to interact instead of retreating from all stimuli. Most of his time is still spent in sleep, but we appreciate the moments he is looking and listening. It is exciting to see even small steps in his development and to know that God is continuing His good work.

Monday's news

Toby continues to improve and is bouncing right back from the surgery. He has amazed some by skipping the expected post-op swelling, but we are not too surprised at the goodness of God. He also seems to be quite comfortable with no more need for pain relief. He started out on small feedings again yesterday and they are now going to be gradually increasing. The treatments for the mucous and lung congestion continue and seem to be helping. And best of all, his heart is no longer swooooshing but is beating strong and clear. He has lost a bit of weight in the past few days. But with the heart problem solved, he should now be able to concentrate a bit more on growing and solving some of his other problems. Smiles all around!

The Weekend

Kathryn here -

I was able to visit Toby very early Saturday morning. He greeted me with eager blinks and seemed very aware. The nurses informed Dad and I that Toby was very much a night baby, and tended to be awake for them. They sounded happy about that, but Mom was not quite as happy, since that will be indicative of his schedule once released from the hospital. As I said, he was very aware. He kept trying to look around and locate the voices. The nurse also told us that he had not experienced any post-surgical swelling, and none of his settings for the respirator had needed to be changed at that point. So, his recovery is going extremely well.
The chest x-ray did indicate that there were some problems in the right lung which needed to be treated. However, it was explained that this was fairly standard for babies that young after they have had surgery. Supposedly, he is going to be put back on milk, either yesterday or today. Overall, things are going well!

Tobias is doing great after his surgery. The procedure itself went very well. The doctor did confirm that the ductus was large but encountered no problems. Toby is now very stable and recovering. He is sedated again and back on the iv for nutrition (no feedings for a while) which seem a bit like steps backwards. But after a few days, he should be moving forward again. We are thankful to you for all the prayers and to God for His continued mercies.

And the wait is over . . .

Dr. Moront showed up here about an hour ago (4 o'clock). He is the heart surgeon who will be doing the operation on Tobias. He has an opening about noon tomorrow. Just to recap, the surgery involves clamping off the ductus which failed to close at birth and is currently allowing blood to flow in directions it shouldn't. This is causing additional strain on the heart and on the lungs. The expectation is that after the surgery, Toby will have 2 or 3 days of recovery during which he will be "sicker" again. But then he should be able to improve more rapidly, including beginning to be weaned off the vent in time. There are all the usual risks of surgery plus a couple specific to this procedure. And the same God ruling over every detail.

The past few days here in the NICU have been good ones. His nurse describes Toby as "a different baby from last week." He has been able to sail through procedures and interactions which formerly would have been stressful for him. He has also gained some more weight and now is 2 lbs 8 ounces. One nurse told me that she thinks surgery will not be as difficult for him now as it would have been had it occurred earlier. We are thankful for the confidence we can have that God's timing is perfect.

Still waiting . . .

I know a lot of you are wondering what we've been up to- and the answer is: waiting. Yesterday, we waited until late in the afternoon for the ultrasound of Toby's heart. Then we waited until this morning for the official results. (As expected, it showed that the duct remains open.) The rest of today was spent waiting for the consult with the heart surgeon whom I was told is quite busy. I have not heard from him yet, but it is my understanding that he plans to do the surgery at some point this week. I will let you know the "when".

Tobias has continued to improve the last couple days. He is very stable between feedings. I am also able to touch him quite a bit more without worrying that it will stress him unduly.

Sunday, April 6

Happy 1 Month Birthday, Tobias

As we celebrate the first month of Toby's life, here is a progress report.

Things I can not do (yet):

• breathe- My ventilator does that for me.
• eat- The nurses put milk up my nose and down into my stomach through my gavage tube.
• maintain my temperature- I need a heated isolette.
• resist infections- I am constantly protected from germs.
• turn my head- There are too many tubes.
• handle much stimulation- Exposure to light, sounds, and touch must be limited.
• cry loudly or even coo softly- The vent tube goes through my vocal cords.
• throw stones- My house looks like glass . . .

Things I can do:

• sleep
• stretch and yawn
• suck on my vent tube and try to get my fingers in there
• look cute
• open my eyes and look even cuter
• squirm and make faces
• wave my arms and kick my legs (when they don't swaddle me too tightly)
• the silent cry- It looks noisy.
• give my mommy a steady supply of diapers to change
• ring lots of bells and call all the nurses and respiratory therapists (my favorite!)
• glorify God as I display the perfection and intricateness of His design
• glorify God as He perfects the work He began in secret and which is now seen openly
• glorify God as others see His lovingkindness and mercy through the life He has given, protected, and now sustains

Psalm 8: 1-4

O Lord, our Lord, How majestic is Your name in all the earth, Who have displayed your splendor above the heavens! From the mouths of infants and nursing babes You have established strength Because of Your adversaries, To make the enemy and the revengeful cease. When I consider Your heavens, the work of Your fingers, The moon and the stars, which You have ordained; What is man that You take thought of him, And the son of man that you care for him?

Saturday, April 5

Jack was able to be here today and hold Tobias for HIS first time. They both looked like they enjoyed it.

Toby still has his murmur and the doctor sounds like the ultrasound Monday is pretty much a formality. They are expecting to do surgery next week. "When" is dependent upon the surgeon's schedule. I will let you know more as the information becomes available.

Otherwise, things continue to be stable and we continue to thank God for the "good things happening slowly."

Thursday, April 3

4 weeks old today- and I got to hold him for the 4th time. God is good.

Wednesday, April 2

Good news-
There have been positive changes with the ventilator the past couple days. This means Toby's lungs continue to improve and although he still can not breathe on his own, they are steps in the right direction. He also continues to do well with his feedings. Plus he was much more touchable today. His evening nurse even had me give him a partial sponge bath tonight and he did very well with it. (Don't any of you other kids get ideas about going almost a month without bathing)

For continued prayer-
The doctor says that the duct in his heart is still wide open. Tomorrow, he will begin the third and final round of the drug treatment. On Monday, he will have another ultrasound to check the results. At this point, there is only about a 10% chance that it will close. So the doc advises that we should be mentally preparing for the possibility of surgery next week. Pray that Tobias' heart will be healed and that God will be glorified whatever means He chooses to use. It puts me in mind of the verse where Paul says- "I planted, Apollos watered, but God made the increase." (The NEH version) I have certainly seen these past weeks that however much the nurses and doctors and hospitals do, it is always God who is the ultimate actor/ effector/ causation. I am struggling for the right word. But basically, if He doesn't do it, it doesn't get done. How true- "In Him we live and move and have our being." (Acts 17?)

Tuesday, April 1

We had a brief whiff of spring in the air this morning, but a cold breeze blew it away. We quickly returned to the same old winter chill. And other things remain much the same here, also. Tobias is awake only briefly when required for feedings and his other care. He continues to find even the stimulation involved in necessary activities stressful, so we don't bother him any more than is needed. He does continue to be fairly stable and this is definitely one of those "no news is good news" situations. If my math skills are functioning properly (one ounce is about 28 grams), then he did hit 2 lbs 5 ounces today. That is a half pound more than he weighed at birth. So pretty good! The nurse who was caring for him today let me listen to his heart murmur. It is definitely still there since even I can easily hear it. Today was the last day of round 2 of the medication to try to close that. So even though the ultrasound to check the progress in that department is not until tomorrow, I think we can already say it has not been successful. BUT GOD is certainly able, so continue to pray that the duct closes up and that the doctors have wisdom as they choose the next step. Toby is doing well in so many ways, so also thank God with us for His wonderful works so far.