Ethan's Day 8 Update

Eric's Update:

Hello all...
Well today was an interesting day. It started off real well. Ethan eat well all night long, and his bilirubin count was down. They took him off the lights today, and they decided to increase the volume at a more rapid pace. The doctor that spoke to Jayme this morning even indicated that they could wind up sending him home early. Then they did his last echo, although we have not gotten the results back on that yet.

Then later today, Ethan did keep up with the increase in volume of formula. As a result, the reinserted his feeding tube, so that they could give him the formula he did not finish. Tonight I went to feed him, and they nurse filled the bottle with 50ml. That is almost 2 full oz. In the 20min they gave him to eat the bottle, he finished 35ml, so they fed him the last 15ml through the feeding tube. Then Jayme went into the room, and the nurse informed her that until he is eating the full 2oz through the bottle, they won't be sending him home. She also told Jayme that she does not expect this to happen by Monday.

This is a little upsetting because it is in stark contrast to what she was told by the doctor 10 hours earlier. Especially considering he has not back slid at all, it is a little disturbing. Part of what is upsetting is that when Loryn was born, she was not eating a full 2oz until she was about a month old. She was just a slow eater. even now, she doesn't typically eat all that much. At 30 months, she has only gained 19 lbs since birth. My mother says that both my brother and I were slow eaters too. Every kid is different, and if everything else is ok with him, I think they need to think this through. Tomorrow I will be talking with the doctor, not the nurse, and I will inform him of my thoughts. Then we can see what his thoughts are, and go from there. Jayme is upset right now. I am just a little annoyed.

All in all, Ethan is still improving every day. That is what is most important. The rest will take care of itself.

Tomorrow, I will let everyone know how my discussion goes with the doctor, and we will let everyone know if there are any changes. Till then...

Eric, Jayme, and Loryn Steinbach

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Jayme's Perspective:

Yesterday was a trying day for us with the nurses. In the daytime, Ethan had his same nurse again (Denise). I like her, she isn't always as talkative, especially yesterday as she was so busy with a new baby, she has been with Ethan now 4 of the days he has been in there, which is helpful to have the same nurse repeatedly. She is the one that put the feeding tube back in when I was with Ethan. At his 11:30am feeding yesterday, he was given 35 ml and took 30, so not a big deal they didn't force that back on him. At 2:30, he was given 40ml and took maybe 25 (he spit some of it back out), and so they had to put 15ml in his feeding tube. If they had made him go within a 20 minutes time period like last night's nurse did with Eric, he would have had more in his feeding tube.

There are some inconsistencies with what the nurses are saying, which is a bit frustrating and something we are planning on mentioning today.

When I called this morning, they did stop his iv fluids earlier this morning. Which is great news. Now they can stop using my baby as a pin cushion. Poor kid has so many bruises. This also means that we are starting the 24-48 hour observation of how he does while eating only from a bottle (and apparently feeding tube-for now). With the iv out, today Ethan should be getting his hearing screening and possibly his circumcision. We will know more when the neonatologist that is on today calls us.

Eric will send out an update later tonight with how Ethan is doing on Day 9 in the hospital.

Also, thank you for all the calls and emails on your concerns for how I am doing. I am doing fine. Just very tired trying to balance trips to the hospital and spending time with Loryn. As far as my health goes, I am healing well and losing weight much faster (so far) than I did with Loryn. I definitely have more inches to go, but as of yesterday, I only have 9 pounds left to lose to get to my pre pregnancy weight. I can't wait to get back to the gym as I feel that will help to give me a bit more energy.

Ethan's Day 7 Update

1 week old, and better every day. For the first time since he was born, there were really very little changes.

He is still under the heat lamps to break apart his bilirubin, but his count is declining. They are hoping to remove him from the lamps tomorrow.

That will leave us with only two steps remaining to get him home. First one is that they want him taking 2oz from a bottle. Right now he is at 20ml, and at 11:30p tonight that will up to 25ml. With 60ml = 2oz, that means we are almost half way there in only 1 day !!! The other good thing about him taking in more formula, is every other feeding, they are also reducing his IV volume. He is at 13cc now, and they keep kicking that down by 1.5cc at a time.

The second step will be for him to pass his final echo, and his hearing test. Although these both sound easy, the hearing test has me a tad concerned. Infants who have had PPHN sometimes have hearing troubles as a result. I am not sure of the science behind it, but this is what I have read, and been told by the docs. Then in addition to that, Ethan's daddy has very poor hearing on top of that, so I am praying that I did not pass down those traits to him.

If all continues to go well, and right now all involved believe it will, our little monster will be home with his family on Monday.

Tomorrow is another day, and I will again provide another update for those who are interested. Thanks again everyone, for all of your continued support.

Eric, Jayme, and Loryn Steinbach

Ethan's Day 7 -Early Morning Update

Since we have been home, I call to check on Ethan around 2am and 6am every morning. When I called at 2am, his nurse was out on her break and the other nurse asked me to call back to get an update. When I called at 6am, I was put on hold as Ethan was now eating ( I seemed to have a knack for mealtimes today).

Ethan has been a very good boy since we left him last night at 6:30pm. Not too fussy for the nurses and he has been taking to his feedings well. When we left he was on 5ml (1 tsp) every 4 hours, which they increased to every 3 hours sometime around midnight. He has been taking that very well and has had no residual. His neonatologist has said that they can start to increase his feedings, so at 6am, he was given 10ml and he also gave a nice burp and went to sleep instead of fussing for more food. So happy they are starting to feed him more :)

His schedule now will be feeding every 3 hours, and at every other feeding if he is handling things well, they will increase his food intake by 5ml. After they do an increase, the next feeding they will decrease his IV fluids by 1.5ml. This is a huge step in the right direction as we want him off the iv.

Our next update from the hospital will come when we get our daily call from the neonatologist. It is my goal to be back at the hospital around lunch time in order to visit Ethan.

On a side note-Loryn has been asking to visit the "baby room" several times a day. Last night when watching Kermit the Frog on tv, she asked him "what's wrong?" followed by asking him if "he wanted to go to the baby room too". She is very interested in seeing her baby brother and all the other babies and she loves to go to the hospital and look into the window of the nursery on the other side of the floor from the NICU.

The next update will be from Eric later tonight.

Ethan's Day 6 Update

Another day older, and our little boy continues to get better. Today Ethan had a really good day. Last night, Ethan decided he was tired of all of the breathing tubes, so he ripped them out. The nurses decided to let them stay out, and see if he could handle breathing without them. Sure enough, he did exactly that. He kept breathing, without desaturation all night long, and also all day today.

This morning's x-ray showed more growth in the lungs, and that is absolutely wonderful. He is doing very good with his lung growth and we couldn't be any happier about that. He also, as I mentioned yesterday, got his first meal through a feeding tube. He did alright with it, but this morning they found a little bit of brown substance in his belly. They believe that is was blood, ut they think it could have been from all of the tube being inserted and removed from him. As a result, they only allowed him a teaspoon of formula, four times today. He did however take it from a bottle, and that is wonderful. If there is no further evidence of blood tomorrow, they are planning on upping the quantity of formula.

And despite how good all of this news is, the best news of the day was that Jayme and I both got the chance to hold our little guy today. Jayme held him for a few hours in the middle of the day, and she got to feed him. Then I had my chance to do the same after work this evening. It was really a special moment for each of us.

The doctors tell us they love the improvements he has made, and they still expect that we will be able to get him home on Monday. We are all very excited, but we are trying to remember that things can change on a dime, so we are trying not to get too excited just yet.

That is all for tonight folks. We are all very excited, and Jayme, Loryn and my mom are all already asleep. Momentarily, I will be joining their ranks. Thanks again for all of your wonderful words. The emails we get in response to these posts have been very appreciate by all of us. Thanks again, and I will send out another update tomorrow.
Eric, Jayme, and Loryn Steinbach
Ethan under the lights. This is where he was supposed to be resting all day. (He had a mind of his own and wanted to be held all day). Hopefully his little temper tantrum won't force him to stay under the lights for more time.
Mommy feeding Ethan for the first time
Ethan in mommy's arms after he was done eating. They let me hold him for an additional 30 minutes. :)
After being put back into his incubator, Ethan proceeded to cry for an hour straight with no way to soothe him. The nurse decided he should be held again. He sure knows how to manipulate the system. As soon as I was holding him, he was quiet and back to sleep. (he stayed with me for about 2 hours)
Daddy getting to hold Ethan for the first time

Ethan's Day 5 Update

Eric's update:

Well today was another good day for our little fighter. Jayme and I are really proud of the little guy for continuing to improve. Early today, the doctors did another chest x-ray. They again saw improvement over yesterday, and this along with his strong vitals, gave them the confidence to remove the c-pap machine, and replace it with a cannula. As I mentioned yesterday, this is another big step forward. All day long Ethan remained on the cannula, and had no "desat" episodes. In fact, by this evening, the cannula was only providing him 21% oxygen, which is equal to the oxygen volume in the air that we all breathe every day. This is leading the docs to believe that the PDA valve in his heart is continuing to close, and this means that we are one step closer.

Another big step forward today came in the form of nourishment. Up until today, the only nourishment Ethan was getting was from the IV. Today, they cut back on his IV volume, and did his first tubular feeding. He is not quite ready to jump on a bottle just yet, but that will be his next step if his improvement continues. The plan is to continue to ween him off the IV feeding, and make him reach his nutritional needs get me through formula, just like he is supposed to.

Although the news was primarily positive, we did have a little bump with his bilirubin count going up. He is very jaundice right now, and because his body is so focused on breathing and growing his lungs, it is not doing enough to break down the bilirubin. The docs placed him under a heat light today, and they expect him to be there again tomorrow. These lights are designed to break down the bilirubin so that the baby doesn't have to do it all alone.

All said, today was a real good day for our little guy, and we feel as if we are one step closer to having him home with us. Thanks again to everyone for all of your support. We will check back in tomorrow with another update.

Eric, Jayme, and Loryn Steinbach

***Jayme's Update:

While I was visiting with Ethan in the evening, he was as usual being the little fighter that he is started to pull once again on his tubes. Not surprising, he pulled his feeding tube out. This is no big deal as he wasn't being fed at the time and they can replace that easily. He also decided he was done with the canula and continued to pull it out of his nose to chew on it, or just try to push it off his face. The nurse let him keep it off to see how he would fare. She and I sat there watching him for a few minutes, which then turned into 45 minutes before I left. Ethan kept his oxygen levels stable the entire time, which was a huge milestone for him. Especially if you consider he was very agitated last night with all the tubes and the head covering to keep his eyes protected with the lamp on him. He has a strong little voice and a mind of his own.

He has learned to like a pacifier and has a decent suck. So hopefully the transition to bottle will be easy. Once he is off the lamp for his bilirubin, then he will be moved to a crib and not the incubator he is currently in. This means, that we will actually be able to hold him. YAY!!!!

In the morning, they will repeat all of his usual tests and do another chest x-ray.

Again, we thank you for your thoughts and prayers and just can't wait to bring our little boy home.

Ethan's Day 4 Update

So today Ethan did very very well, and both Jayme and I are so happy. Last night, he was doing very well, so they made the decision to extubate him. So they took out the tube to his lungs, and placed him back on the nasal c-pap that he was on two days ago. His oxygen saturation remained strong even after this, and that is a wonderful sign. The they did his daily x-ray, and they also did his second echo.

The x-ray showed continued development of the lungs, and that is really wonderful. The attending physician said that this shows to him that he is becoming increasingly capable of producing his own surfactant, which is essential for him to get better. We were also told that the echo is showing that the PDA valve in his heart is starting to close up. This indicates increased pulmonary blood flow, and the beginning of the end of his PPHN. It is not over yet for him, but he is improving every day and that is all we can ask for.
Jayme spent a good amount of time with him today, and she had the opportunity to change diapers, and even had the chance to pick him up, albeit briefly, while they moved some things around under him. When I visited this evening, I changed his diaper for the first time, and I also got to take his temperature. They are letting us interact with him more physically now, because he is less irritable about it.

If his improvement continues throughout tonight, tomorrow will bring with it some more changes. As long as his saturation levels remain strong, tomorrow they will remove the c-pap, and replace in with a cannula, which is a thin tube that rests under his nose, and delivers oxygen. Unlike the c-pap, the air from the cannula will not be pressurized. Should he take to this well, and maintain his O2 saturation, they also plan to try and feed him a small amount from a bottle tomorrow. Before Ethan can come home, he has to be able to eat, so this will be a big step for him. The doctor warned that it could take a little time before he catches on to this because of some of his respiratory distress, but he expects that it will not take too long. The also have designs on moving him out of his incubator, and into a crib sometime in the next two days if his progress continues.

The doctor told me tonight, that based on his improvement thus far, and his expectations for the next few days, he thinks it is completely reasonable for us to expect to have Ethan home with us on Monday the 11th. He reminded me that this is completely dependent upon Ethan, and his continued improvement, but it is still a nice target for us to have.

Tomorrow is another day, and with it, hopefully more good news, and of course another update to email to you all. Thanks again for everyone's continued support.

Eric, Jayme, and Loryn Steinbach

Ethan's Update - Evening, Day 3

When we came home in the afternoon, the nurses in the NICU had given us a package for our daughter. Inside there was a little doll with a diaper and a coloring book with crayons. Loryn has loved to practice putting the diaper on her new doll and has been coloring up a storm. While Lisa and I went out to visit with Ethan, Eric and Loryn set up the swing in the living room and practiced how we would swing Ethan when he gets home. Loryn thinks he should swing "higher" and Eric has been trying to convince her that Ethan needs to be pushed softly and slowly. Curious to see how this all plays out. Loryn also may have a cold, so we are watching her very closely to see if we need to take her to the doctor. She is a bit clingy right now, and we think it has to do with the fact that she knows something is wrong. She continues to ask us where her brother is, and we keep reminding her that he is in the hospital because he is "sick". We continue to show her pictures and video and she loves to see him.

At 8pm, we were able to go back to visit Ethan in the NICU. Eric stayed home with Loryn and Lisa and I went to go and see Ethan. I had called around 5pm to check on him and was told that he was still doing very well but they did have to move his iv from his hand (again). Poor kid is having his iv moved every 2 hours and was running out of places to put it. They warned me that it may be placed in his scalp. So I did prepare myself going in for that. Yup, that is where they stuck it. And it appeared, they had to try a few times. Poor baby now has pieces of his hair missing (looking like he is going bald) and he has bruises all over. As Eric put it, "he looks like he got into a fight". I was very worried about him, considering that he isn't on pain medication anymore, but the nurse said he was fine and his levels have stayed stable. They lowered the amount of oxygen support they were giving him just a little bit and even let me help take care of him. I was able to again take his temperature and change his diaper and also help to clean off and moisten his lips. (I am having trouble uploading the video-if you want to see it, please send me an email)

He definitely is a feisty little kid. He kept trying to take off his heart rate monitor, so for an hour, I kept moving his hands and putting the stickers back on his chest. Ugh, I really wish he could understand that hearing beeps going off, is not a comforting sound.

I called to check up on how he was doing at about 2:30am and again at 6:15am (Monday April 4th). They took out the breathing tube, and he was put back on the c-pap machine. Ethan is breathing entirely on his own, but with a little help from the c-pap machine. His oxygen levels are at 29 and they are administering the pressure at +6. He is resting comfortably. After his chest x-ray and echo cardiogram this morning, they will decide what to do next. He had to have his iv moved again, I think it was moved to his arm this time.

We brought a few blankets for him, so that he could have a brightened up little area that was less hospital and a bit more like home. We also left a disposable camera so if there are any more firsts, we won't have to continue to miss them.