Children's Hospital

On Friday, I was told that a "bug" was put in the cardiologist's ear regarding surgery for Ethan. I really figured that nothing would come out of the comment. But instead, Friday night I was told that Ethan is going to be transferred to Children's Hospital on Sunday. I was quite surprised, but was told that the doctors are fearful that if he got another infection he may not come out of it as well as he did this time. Additionally, due to the high pressure of his ventilator, his lungs are often over expanded on his x-rays. Not wanting to compromise his lungs any longer, the neonatologist feels that the time is right for surgery. The cardiologist and the cadiac team echoed this feeling. An added bonus is that since he recently was on so many antibiotics, his body is "clean" and ready for a surgery. Everyone feels that Ethan is telling us that it is time and that he won't grow much more.

He has reached 5 lbs 10 oz and is doing well. He is digesting his food again. He was taken off the iv's a little early as he literally didn't have a vein left without surgically putting one in. Not only does he have my veins, but also his circulatory system is so compromised right now that it makes finding a vein in his extremities very difficult.

He does still struggle to breath whenever he is put on his back. (Due to the pulmonary arteries compressing his bronchi.) Ethan has been sleeping on a pillow on his stomach. This trick has done wonders for his breathing as it is a softer surface and doesn't push on his chest. Not surprising, our amazing nurse, Mel, figured this out and Ethan has had a few good days.

While we are excited that we are moving towards surgery, we are of course, scared. We know that there is a potential for the worst, but we have faith and hope. We love him dearly and can't wait to bring him home. The sooner the surgery, the sooner he can come home. I am sad to leave Presbyterian/St. Luke's as I have become close with so many of the staff members; I know about their families and lives. They care dearly for Ethan and I know that they are excited for him, but sad to see him go. There is a fairly good chance that Ethan will be transferred back to PSL after he recovers from surgery. There are many things he still needs to do before he is allowed to come home.

I am allowed to accompany him for his ambulance ride to Children's. We have checked back into the Ronald McDonald House, but we have checked into the one right near Children's. It is brand new and close to Ethan. (And it seems to have internet in the room, so keeping the blog up to date will be easy.) We hope to know by Tuesday when surgery will be. The surgeons are meeting Tuesday morning to discuss his case and decide on a time line.

More to come as the time approaches. Right now we pray for a safe transport as though he is considered stable in the NICU, he is considered high risk for transport. We trust that the Lord will continue to be with him (and us) as we move to Children’s and prepare for surgery.
Thank you for your prayers and we continue to ask that you pray for us this week as we are approaching a big hurdle for Ethan to jump!

Moving Along

So far, Ethan is doing well despite his recent infections. He continues to gain weight, though most of it is likely fluid and not true dry weight. I can tell that he is hungry and therefore fussy. The doctors hope to resume feeds today starting at a low amount of breast milk. They hope to work up fast, but it all depends on how well Ethan digests his food.

His heart condition becomes much more evident whenever he has something else going on. He just does not have the reserve for extra circumstances. While he still likes to lift and turn his head to show his protest, he has had trouble keep his oxygen levels up lately. This will improve with time, as he begins to feel better and as the infection heals.
More pictures below. (If you look closely, you can see the head i.v.)

Infections

Ethan developed two infections over the weekend. One infection is in his intestines and the other in his throat. It is believed that having to be reintubated caused the one in this throat and the intestinal infection is quite common in preemies. Luckily, his main night primary nurse spotted the infections and they were able to get antibiotics going quickly. She felt that he wasn't his feisty self and that there was something wrong. Everyone, but especially us, is singing her praises as the intestinal infection, in particular, can be very serious if not caught early.
So, now he has an i.v. in his leg and head. His head i.v. is the sad looking one and I am sure he doesn't enjoy it. However, he was alert when we saw him today and was able to be held. Due to all the activity on Friday and coming down with the infections, he couldn’t be held the past two days. He already looks better from what I saw on Friday. For the time being, the doctors have suspended his feedings until the intestinal infection is over. Feeds should resume in 7-10 days. Until then he will receive nutrients and fat through his i.v. He has actually gained weight while on his i.v. and is back up to 5 lbs. It is amazing how quickly his weight can fluctuate!

Tornado

As if life didn't feel like one already, a real tornado ripped through Northern Colorado yesterday afternoon. I was on the phone with a friend and was disconnected. It has just started hailing and the power went out. We resumed our conversation via cell phones and that is when she told me that there were tornados spotted in Miliken (just a few miles east of us) and that a massive one hit Windsor (just a few miles north of us and where we used to live.) The one in Windsor did extensive damage to the town and the windows in some of the condos where we used to live were blown out. What an afternoon!

I figured driving down to Denver to see Ethan would be the safest thing, since I would be heading away from the storm. When I returned, we still didn't have power. We took a trip to Target and bought coolers and flashlights. Luckily our dear friends in southern Johnstown still had power and we were able to put frozen items in their freezers. Power came on early this morning, as Craig was getting ready for work.

Ethan had a rough day yesterday. He needed his tube retaped and if you look closely in some of the pictures from the other day, you can see that his upper lip is starting to scar from the tape being ripped off and reapplied. Then he was given a blood transfusion. Ethan has my veins...veins that are not great for putting in i.v.s. When I got there he was so upset and his little chin was quivering. He did not settle for quite some time, but did better once I was holding him. Eventually, he drifted off to sleep for the rest of our time. With all of that going on and the extra lasix he received after his blood transfusion, he lost a good bit of weight. While he was at about 5 lbs yesterday, he was at 4 lbs 10 oz by last night. He was settled the rest of the night, but needed his tube retaped again before the evening was over.

Today they will repeat an echocardiogram to check his heart. He hasn’t had one for a couple of weeks and it will be nice to hear if anything has changed.

Thank you all for your emails regarding the storm yesterday. We are safe and now have power!

More Pictures

Commuting

So far, my commute has gone well. I still am able to spend a few hours holding Ethan each day. Last night he moved into a new room. This room is smaller and much quieter. I was told that they wanted him to have a space that has less noise so that he can continue to grow. And, that he is doing. Ethan is up to 4 lbs 13.5 oz. (Yes, the .5 really does make a difference to me!!)

Soon they will be moving him into a crib, as they feel he has outgrown the isolette. He is past the weight and gestational age for the isolette, but they hope to get as much growth as possible while he is still in it. Like any almost 6 week old baby, his awake periods are getting longer with him looking around. He enjoys being spoken and read to. And he hates having his face washed.

I was told today that he will likely have another blood transfusion soon, maybe tomorrow. His hemoglobin is low again and they still have plenty of Craig's blood on hand.

While it has been nice to be home and to sleep in our own bed, we feel that something is missing. It feels so incomplete. I can't wait for the day that we drive up with Ethan in his car seat and bring him home. I know Ethan is eagerly wanting to watch a Cubs game and to be kissed by Maverick. :) Summer is here and we also can't wait for those walks around the block, with a complete family.

Enjoy the new pictures!

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Home

After much thought, Craig and I decided that we should move back home for the time being. Since Ethan is stable at the moment and surgery is on hold for a few more weeks, we thought getting some much needed stability in our own lives would be beneficial. I will commute down to the hospital everyday and spend my normal time with Ethan. But, this will allow us to be in our own bed, have home cooked meals (especially since I do love to cook) and overall, give us normalcy.

Once Ethan is ready for surgery, or if he would become in stable, we will move back down into the Ronald McDonald House. At that point, he would need us available at a moments notice. It is also helpful that after five weeks, I know his nurses well and I am confident that he is taken care of wonderfully.

Ethan is at 4 lbs 10 oz and doing great. He loves his nurses and they take such great care of him. He was able to meet his Grandpa and Nana (Perciante) these past few days. And we were treated to many good meals outside of the Ronald McDonald House!

More pictures to come soon.

A little longer

Well, maybe a lot longer. That is what came out of the conference yesterday. The doctors do have a weight in mind, but they refuse to tell us. (And let me say how well that went over with the two of us!!) Anyway, from reading a bit in between the lines, we think they are going to wait for him to double his birth weight. Granted, that was what we were told in the beginning. I was informed that they do have a plan if he went into distress and needed surgery as an emergency. Honestly, they are waiting because they want him to survive the surgery. We can't argue with that, as we want that as well. Like I have said before, the bigger the baby the better chance of survival. At the same time, they aren't going to wait months on end until he is really big.

While it was the news we were anticipating, it was a hard realization that we will be here much longer. At least 4-6 weeks, if all still goes well, until he would be transferred to Children's. At that point, he may either have the surgery or they may continue to grow him there. The biggest concern from the nurses is that he has gotten so strong (and with continued growth comes continued strength) that he may pull out his ET tube again. He is very strong for his age and feisty as well. I still can't figure out who he got that from! ;)

We continue to wait on the Lord as He is the only concrete thing right now. We know He has the plan and it will be according to His will.

Mother's Day

By now, most moms have done things with their baby that I am still waiting to do. My dear nurse understands the difficulty of celebrating a day that implies I have been able to do all sorts of activities with my baby. So, on Saturday, she gave me the opportunity to give Ethan his first sponge bath. He absolutely loved it; especially getting his hair washed. What a gift she gave me for Mother's Day...to actually feel like a mom. We had so much fun. And, with her help, Ethan made me my first Mother's Day card, complete with handprints and footprints!

On Sunday, Craig took me out to Flat Irons to get away from the everyday scene I have here. We enjoyed the beautiful weather while walking around. That night we went to J. Alexander’s for dinner. It was fabulous.

Ethan has lost weight the past few days, but it is actually a good thing. He had a lot of water weight and was looking like a sumo wrestler. He is back to 4 lbs 8 oz and that is good. (In between posts, he had gone up to

4 lbs 12 oz.) Below are pictures of his first couple of outfits. (And yes, the shorts are shorts and not pants!) :)

Today our cardiologist is meeting with the surgeons at Children's to discuss the next step with Ethan. We are looking forward to hearing about the conference.

22Q11

While that title may not mean much to most, Ethan was tested to see if he was missing part of the 22nd chromosome. This is also referred to as DiGeorge Syndrome. DiGeorge Syndrome falls on a spectrum and includes various mental and physical difficulties that children diagnosed with it endure. We had been told at an appointment early on with Children's, that 22Q11 can be genetic or spontaneous. At some point we were planning on having Ethan tested and if need be, we would be tested as well. Yesterday I was informed by our neonatologist that the cardiologist had ordered a fish test (a type of genetic test) be done to determine if Ethan has DiGeorge Syndrome.

I was specifically told not to look on the internet until we knew the results. While I was holding Ethan, the test results were faxed in and we found out that he DOES NOT have DiGeorge Syndrome. Praise God!

He has been put on more diuretics, as his weight gain is continuing, but at quite a high pace. As of yesterday is was up to 4 lbs 8 oz. (I have asked him what he is sneaking into that feeding tube of his to help chunk him up!)

Happy Mother's Day to all moms!

Eye Exam

I wanted to let everyone know that Ethan's eye exam went well. It only took about five minutes and I stayed for it. The exam really wasn't as bad as I was anticipating and Ethan tolerated it well. There are no problems with his eyes at this point.

He is still gaining weight and had another big weight gain last night. He is getting a little more swollen, so we are curious how much of the weight is just water. My "take charge" nurse is on today and she will get to the bottom of the situation! :) I can't say enough what a blessing she has been for both of us and Ethan.

4 lbs 6 oz!!!

WOW! He looks like a little chunker! Everyone has commented on how big he is right now. Ethan has put on major weight gain this past week. While some of it is feared to be just water, he doesn't look very puffy. He now towers over some of the other babies in the room.

Either today or tomorrow, Ethan will have his eye exam. I will spare the details, but it isn't a very pleasant experience.

Since he pulled out his ET tube on Monday, he has been on continual morphine. And, as much as we don't like that idea, it has truly helped. If I had to pick between the severe episodes or morphine to allow him to sleep and grow, I would pick the morphine.

I was given a good reminder from our friend, Rebecca. We forget that Ethan should still be in utero. He should not have to do all the things that are being asked of him--digesting food, etc. Therefore, allowing him the most sleep and least stress is what we want. Using morphine to help aid him in his growth seems to be working. Not only has he had less episodes, the ones he does have last only a few minutes, compared to 20-30 minutes.

The doctors are so happy with his growth, they are going to continue to let him grow before surgery. We had heard that they were thinking 2 kilos, but since he is calm and growing, they want him to gain more weight. The bigger the baby, the better the outcome.

That boy of mine...

...has something to say about his current situation. Early this morning he decided to show his discontent by pulling out his ET tube. Therefore, he had to be reintubated. Not surprisingly, he was not a big fan of this decision. He had quite the morning. Ethan will have a scope put down his throat at some point today to see exactly where he struggles with his breathing and to try to get a very accurate reading on what vent settings he should be placed on.

He gained more weight and is now up to 3 lbs 13 ounces. If he keeps this up, he should hit the 4 lb mark in the next few days!

We have our daily date later this afternoon. We received so many wonderful books at the shower this past weekend and now have quite the selection for our reading time. So far, Ethan loves Guess How Much I Love You, The Belly Button Book and of course, his Baby Bible.

Some of you have not seen his bedroom. Below is the picture we have in Ethan's isolette to encourage him that there is a place waiting for him at home.

Thank you all for the continued prayers, thoughts, cards, emails etc. We deeply appreciate them and they are very encouraging to us.

3 weeks

This past Thursday, Ethan was three weeks old. It is amazing how time flies, even when it seems to stand still.

Friday was a tough day for him. He had a few episodes in the morning. I ended up spending close to 10 hours with him in the NICU. Due to the early episodes, the doctor felt that he needed some morphine to relax the "floppy" part of the valve in his heart. (Thinking that this was the cause of the episodes.) However, instead of just relaxing the valve, it relaxed all of Ethan. And, I mean ALL of him. Within one hour of me holding him, he had at least 16 episodes. Seems the morphine relaxed the idea of breathing too. His nurse was such a wonderful advocate for him all day. She and I we able to show the doctor that his dose was way to high for him and that his vent settings needed to return to what they were last weekend, before other doctors and nurses changed it. I can't explain what it means to have a nurse that we love so dearly and loves our son the same. She fights for him all the time. We appreciate her so much! (Our only disagreement is that she is a loyal St. Louis Cardinals fan...I hope to convert her before Ethan leaves the NICU. We all know that the best team in major league baseball is the CUBS!!)

Once we were able to convince the doctor of the new vent changes and the change in the morphine, Ethan has had great days. Yesterday, my school threw a shower for me and Ethan. We are so blessed. My colleagues were willing to drive down to Denver to have the shower, allowing me to be close to Ethan, just in case. It was wonderful to see so many familiar faces and to have a nice break. While I was at the shower, Craig got to have his kangaroo time. Ethan showed his appreciation by "christening" his daddy during their time together. :)

Since Ethan was having such a great day and we knew his night nurse would be fantastic with him, we went home for the night. We haven't slept in the same bed, let alone a comfy one, for five weeks. It was so nice. We will be heading back soon so that we can spend some time with our little boy.

Ethan is now up to 3 lbs 11 ounces. And, I was given clearance for him to wear clothes! (He had his CVS line taken out, so all arms and legs are free!!) I was able to find some preemie clothes. Many of the stores that have preemie clothes have ones that are still too big for him. But, after they are washed, I will put some pictures on the blog of his new outfits. FUN!

New digs

Ethan has a new home...well, sort of. He has been moved into an isolette. They provide a much needed barrier from noise and light. Although, giving kisses is much harder to do now. At the same time, his move indicates progress, as the most serious babies have to stay in the open beds so that nurses and doctors have easy access to them in the event of an emergency.

Since he moved, he was weighted on a different scale. The new scale indicated a 80 gram weight loss. I was told that they keep this in consideration as they plan for surgery and will weight him again this afternoon. Using two different scales can lead to a large fluctuation in numbers, even if the direction of the numbers are wrong. While they are aware of this, they will go by the new scale numbers.

As I have mentioned before, Ethan likes to lift and turn his head. Below is a picture of him starting his motion.

Over the weekend we were able to visit Maverick. He is enjoying his stay with Mike and Elissa. Having a friend (Riley) to play with all day is much better than his kennel! We are so appreciative that Mike and Elissa are willing to keep Maverick right now!