Tuesday, November 24, 2009

Eye Test

Yesterday Killian had his first eye exam. Thankfully, the results showed that he has not developed any cataracts (common among preemies), and the nerve endings appear to be attaching properly to the back of his eye. They said that he still has underdeveloped blood vessels, which is to be expected when you come out three months early, so they will go back and test his eyes again in two weeks to make sure they continue to form correctly.

He's continues to gain weight - yesterday he was 3lbs 5oz - and he seems to be very pleased with himself now that he is wearing clothes. Nina certainly enjoys being able to dress him every day with a new outfit.

Sunday, November 22, 2009

Stretching Out

Taking a little stretch after a nap with Mom before being put back in his isolette.

Killian, Small and Fierce

Killian, taking a nap with Dad under a blanket kindly made for him by my brother-in-law's great aunt. The blanket reads:
Killian Patrick Madrid
Small and Fierce
October 18, 2009
2lbs 2oz 14 inches

Killian at One Month

Today was the first day Killian was allowed to wear clothes. He seemed to enjoy the change and fell fast asleep as soon as the shirt was on him. His first outfit was an Irish-green shirt that read "I am the boss." He's a cute little fella.

After one month of life, our little Killian continues to grow and make good strides in recovery. He did very well with the surgery last week and now has small scar on his back to show for it. His breathing has been improving as a result, and his general health as well. He is on the nasal cannula and the doctors are currently trying to wean him off that - the first attempt today did not go well, so he is back on it for a couple days before the next try. He broke the 3-pound mark over the weekend and tonight came in at 3lbs 3oz. He is now taking exclusively breast milk for his feeds with a small amount of calorie fortifier to help him gain weight. This past week he has become noticeably bigger - it really is amazing to see him grow. He's still tiny compared to a normal baby, but he is huge compared to what he was a month ago.

All of his IV lines have come out and the only tube going in his body at this point is his feeding tube; all the other wires are just sensors and monitors. He had to spend some time with an IV in his forehead and we were very happy to see that come out! We hope and pray to see more improvement from Killian and are grateful as always for your prayers.

A couple days ago he was moved from Small Baby Pod to Baby Pod 1. The move literally 30 feet to the next room was very significant for Killian as it meant that he is no longer considered high-risk and the focus of his care at this point is not to resolve existing conditions, but rather to give him all the means necessary to grow, gain weight, learn to breath on his own, and learn to eat from a bottle. It is a major milestone in the eventful life of a preemie, and we are grateful and proud of Killian for reaching it so quickly after his surgery.

Wednesday, November 18, 2009

Thank You

Throughout this unbelievable journey that our Lord put before us, Nina and I have often felt overwhelmed by the tremendous show of kindness and love from friends, family and strangers alike.  It has been humbling and touching to receive all your notes, best wishes and promises of prayers for our son, Killian, and it is difficult to adequately express our gratitude. We wish we could thank each one of you individually and assure you that each of you, your families, your own needs and struggles, are all in our prayers.

As a very simple but heartfelt way of trying to thank you, masses will be celebrated on December 2nd and January 2nd for the specific intention of the friends and family of Killian Patrick - all of you who have been praying for his safe delivery, successful surgery and continued recovery. Thank you, again, and may God bless you all.

Tim, Nina and Killian

Tuesday, November 17, 2009

Growing Day by Day

We're now at Day 5 post-op and Killian continues to make steady strides of improvement and growth. As I mentioned in the previous post, the surgery on Thursday went well and he has been recovering since. He had be put under general anesthesia and they administered a paralyzing drug so that he wouldn't cough or move at all while they were operating close to his heart. That made it necessary for him to be intubated with a ventilator, and they had to give him all his nutrition through the IV. He had already gotten to know the feeling of having food in his stomach, so for the final 24 hours before the operation when he had an empty stomach he was not a happy camper! He was fussy and when Nina held him for the last time before the operation he was sucking on anything he could get near his mouth in search of food. It was heartbreaking to see him so hungry and we couldn't give him food, but he made it through all that and is on the mend now.

On Sunday, after the latest round of blood tests came back positive, the doctors decided to let him off the ventilator early as he was breathing so well. They pulled the tubes out of his throat and put the CPAP on instead (a mask over his nose). Killian was happy to have the ventilator out, but he wasn't satisfied with just that so he immediately began pulling and tugging on the CPAP. He's determined to get out of that place quick!

Right after the operation they had to give him another IV line for a third blood transfusion. He already has one in his leg and another in his hand, and they had attempted to give him one in his other hand and leg already. That meant the best option left was to apply it in his head just above his right temple. Of the many tubes and wires I've seen hooked up to my son, this was the toughest to see. Killian handled it very well and did not seem to mind, but it bothered me and Nina a lot to see that line going into his head. He received the blood on Friday and, following protocol, they kept the IV line in until it wouldn't flush anymore. Luckily for us, it closed up over the weekend and they removed it shortly afterward.

He has been breathing well; his CPAP is giving him 25% oxygen (room air is 21%) and providing a little pressure to help his lungs expand and contract. They started his feeds back up - he is getting 6ml (1.2 teaspoons) every 3 hours and that will increase as his stomach builds up its tolerance to food again. Last night he weighed in at 2lbs 14.5oz and he is starting to look more and more mature each day. He's still tiny, but he's   already grown big in our eyes, and in our hearts...there's nothing bigger.

Our Lord has been so good to us in blessing us with this little life to care for. He has become in so many ways our greatest joy in the world and, indeed, has become the focus of our world. In the midst of the daily ups and downs, the emotionally draining episodes, and Killian's continual battle to grow and develop, God has kindly granted us an underlying peace and happiness that only he can give. "Find your delight in the Lord who will give you your heart's desire. Commit your way to the Lord; trust that God will act." (Psalm 37)

Thursday, November 12, 2009

Surgery Was A Success!

This afternoon at around 2pm Killian underwent a successful surgical operation to close his PDA! Thank you everyone who prayed for this intention. Nina and I are immensely grateful for all your kindness and the beautiful comments you have left us on the blog.

The operation lasted about 20 minutes and there were no complicating factors (first time we've heard that in a long time!). Killian is on a ventilator - a tube that goes down his throat to his lungs and provides artificial breathing - and he is sleeping off the sedative medication he was given. The doctors expect him to start responding and waking up this evening and become gradually more active again tomorrow, along with slowly getting back to normal feeds.

Everything went as well as could be hoped for and now we just have to see how he does in recovery. The medical staff all said because he was surprisingly strong and active going into the surgery he stands a good chance of having a speedy return to good health - please keep up the prayers!

In closing I need to mention an unexpected, but very welcome, visit from Fr. Mike Lumpe, pastor of St. Catharine's Parish in Columbus. He is a good friend of ours and had heard that Killian was having surgery this morning and decided to stop by afterward to check in on us. He did not find out about the change of time for the surgery, so he ended up walking into the NICU just as I was signing the consent papers moments before the operation began. What a blessed sight to see God's ordained priest before us right as our son was going into surgery! He was kind enough to give Killian a special blessing and then went with us to the waiting room where he spoke with us for some time and then gave us Holy Communion. Having such wonderful priests as Fr. Mike, Fr. LaCasse, Fr. Blau and Fr. Stash and others so present and available to us through all of this has strengthened us in the walk of faith. Thank you Fathers, and thank you everyone who have been praying for Killian and his parents. More pictures to come after we catch up on some sleep...

Tuesday, November 10, 2009

Killian getting ready

Here's a pic of Killian from this evening, looking at Mom and Dad and hugging his teddy bear blanket.

Killian has been doing very well over the past few days. A couple days ago he was doing well enough with his breathing that the doctors decided to let him try it on his own without any aid. He did his best for two hours but then grew tired and had to be put back on the CPAP. He continued to do well after that so they shifted him to a smaller (and more comfortable) nasal cannula which you can see in the picture. He is already responsive to our voices when we are near his isolette and opens his eyes to look for us. Yesterday we witnessed his beautiful smile for the first time and he has flashed it numerous times since then...nothing like it!

He is a strong little lad. Today as I was holding him he decided he had enough with the position he was in, so he squirmed a little, then lifted up his head and turned to lay on his other cheek. Nina and I were both amazed.

The sad news is that Killian's echo test came back and he will need surgery on Thursday to close is the PDA (Patent Ductus Arteriosus). We had been hoping that the blood vessel would close on its own and he could continue to recover and grow stronger, but our Lord had planned otherwise. Killian will be put under general anesthesia and they will enter through his back to close the vessel near his heart. This is one of the most common operations among preemies and the surgery itself is not typically dangerous, but it will put him back at square one as far as his recovery goes. As I mentioned, he has been doing so well with his breathing, but he  will be put on a ventilator just before the surgery begins and he will be on it for around two weeks. He will have to learn how to breathe again and build his lung strength back up. This morning he was taking 19ml of milk, but starting this afternoon he will be weaned off the milk and sustained with nutrients through his IV, and after the surgery it will be another gradual acclimation to receiving milk again. The toughest part of all this for us is seeing all the wonderful progress he has been making erased and starting back at the beginning again.

Please continue to pray for Killian, particularly on Thursday that all goes well and according to Our Lord's will.

Taking a nap with Dad

He already has a full head of hair.

Monday, November 9, 2009

Test Tomorrow

Killian has now posted two consecutive days without any episodes of bradycardia or apnea and in general seems to be progressing along well. He is taking 13ml of milk at feeding time, is breathing room air and has the CPAP on one of the lower pressure settings. Looks like all your prayers are having their effect on him.

Tomorrow (Monday) the doctors will conduct another echo test on his heart to determine how large the opening in his blood vessel is, and then make the decision on the surgery. Please say a little prayer that everything checks out okay and he can continue on without the surgery...

Friday, November 6, 2009

We Are Family!

Killian holding our wedding rings. We were absolutely in love before we met our little Killian, but he has brought us together in ways that only a baby can.

Sleeping with the angels

He already has a Marian devotion

Killian enjoying some time with Nina and checking out the medal of Our Lady of La Leche that was given to her by Joan Eppick

Goodnight kiss


He's already playing games with us!

Daddy's here.

A very proud Dad

Killian is taking a nap behind me

Chillin Out

My Main Man!

Kangaroo Time

Nina enjoying some time with Killian

Living with Hope

The day we returned from the hospital (the first time) this solitary rose had bloomed in the autumn frost beneath our kitchen window...we called it Killian's rose.

Almost two weeks have gone by since Killian was moved to Children's Hospital and since we have been able to post any updates or pictures. So much has happened in that brief timespan that it seems more like months, yet in many ways the situation is very much the same: supported by the prayers and love of so many friends and family, we continue to keep watch by Killian's bedside as he fights to improve daily.

In the last post I mentioned that he would need to have surgery to close a blood vessel close to his heart. The team of doctors decided to postpone the operation for the time being because he was not showing very many symptoms from the condition. The hope is to at least give him more time to gain strength and weight before the operation, and at best give the vessel a chance to close on it's own. At the latest test yesterday the "murmur" was loud which could be a good sign that it has constricted and the blood is making more noise as it tries to go through a more narrow passage. On Monday they will conduct another echo test where they will be able to determine the size of the opening. Those results will determine the next step. If the surgery does happen Killian will have to be put on a ventilator and as the nurses tell us frankly, "he will get sick before he gets better." Again, this operation does not necessarily put him in grave danger, but it definitely puts his recovery back significantly and opens the doors to other possibilities. We are praying that he will be able to continue on without the surgery.

In all other ways, he continues to beat the averages for his age and condition. As a medical fact, white boys tend to have the toughest time as premies - hence the name they've been given in NICU, "Wimpy White Boys." Killian seems to be more of a Feisty White Boy. He has gone from 2lbs 2oz to yesterday's measurement of 2lbs 10oz and is now very happily taking 11ml of Mommy's milk every 3 hours. He loves to kick and throw his arms around, and when he gets mad he will let you know about it with a little cry that surprises all the nurses for it's strength. His favorite position, though, is with both hands next to his cheeks - exactly how he was on our sonogram picture.

This week started off with three bad days and two bad nights when he had severe spells of bradycardia and apnea. One of those times the nurse called us at 2am to tell us that the spells had become so severe that they had to increase his doses of caffeine to the highest level and they upped his CPAP to the highest pressure. They also took blood samples and found that his white blood count was high, so they gave him a general antibiotic for infection. It turns out that the blood count was high because of a urinary tract infection that he had gotten over a couple days before but his system was still adjusting from it. After all that he needed a second blood transfusion. Mom and Dad had a little talk with our boy the next morning and told him that he wasn't supposed to be doing all that. I think by the time he has his first birthday I will have a complete set of gray hair!  Those are the kind of things that he does day to day to keep us on our toes. Since those rough times he has done VERY well the past couple days and nights.

Last night Nina and I attended a Parents' Pizza night for the parents of kids in the NICU. It's a chance for couples get together and spend some time with other people who are going through the same situation so we can support each other. There were about 20 people there and we all gave a little intro about ourselves and our babies, where they had been and where they were at the moment. It struck us that some of the other people in the room had extremely difficult situations with their children. One young woman told us that her son had been in the hospital for 2 years and had every imaginable condition with his lungs, heart, digestive tract and brain. Others were also dealing with heartbreaking circumstances with their children and most all of them showed a joy that could only come from a suffering love such as theirs. We realized that, though our spot is a little difficult and not what we expected, there are many others that are suffering so much more and are so heroic about it. Killian is very healthy to so many of the babies around him and as of now he does not have anything that will be a permanent condition, so our heart goes out to those whose children are suffering from serious conditions. We are grateful for the many graces our Lord has granted Killian so far, and we continue to ask him to guide us on the path that he wants us to travel as a family.

One of the many resources that Children's provides for the parents is a monthly newsletter and information packet. In that packet was a something written by two parents of a child who was in NICU. Nina and I both identified with it in some ways and we wanted to share it with you as a way of expressing some of the emotions and experiences we are going through, as some of you have gone through as well:

I am not the patient, but please:

Help me
I am not supposed to be here. This wasn't supposed to happen. What is going to happen to my baby? Three months till discharge, you have got to be kidding. We can't see that far into the future. I am afraid to hope.

Support me
The story book image of pregnancy and birth has crumbled before my eyes. I feel alone, everyone else that we know has had a normal pregnancy. They don't understand what we are going through. How do I balance family life with life in the ward?

Counsel me
I feel broken and defective. What did I/we do wrong? The gremlins are knocking on the door. How can I get through this? You say that it might be 3 months before we go home. All of the everyday pressures are compounded by my child's illness, finances or job concerns and family issues to name a few. The bills are mounting, what should I do?

Involve me
I feel inadequate. I'm the dad, the fix it guy. There is nothing I can do to help my child. There are daily decisions regarding my child that are potentially life altering. Lacking any medical knowledge, I still want to make an informed decision. The technology you use to assist my hcild is intimidating. Allow me to understand what is going on.  I'm the mom who has someone else taking care of my baby.

Empower me
I am supposed to be my child's advocate, let me get started. I know I can do this if you let me. I don't care how insignificant it seems, it starts the healing process for me.