1st Days Home

Boys oh Boys! What a great last few days. Ashley was welcomed home with some sweet signs taped on to the house, which was a nice welcoming for her and the boys. The signs said “it’s a boy, welcome home Braylon Michael Howland and Kaden Darold Howland.” They were from Ash’s family. The boys and I took Ashley (mom) to a nice mother’s day lunch and after that went for a walk. We took mom on the 5 mile walk, which was from bridge to bridge, since she wasn’t able to walk with us on the march of dimes. We took so good pictures and then we just went home and relaxed. That has been the theme the last few days, just settling in getting used to being a family in our home. The boys have been doing great, Kaden has 4ft tall 30 inch wide oxygen tank with his 50 ft cord so we can walk around with him in our house. He also has a few portable tanks that we can take with us on walks and when we run around town. Braylon has been doing great with his apnea monitor, and it hasn’t gone off yet.
The boys have been very comfortable in their new home, and I took some cute pictures of them lying in bed with mom. They look really sweet together. Today we took the boys around their new neighborhood, but they didn’t seem too excited about it. They slept the entire time. Well that has been our week so far. It has been so nice having other people in the house and being able to wake up to two screaming boys telling us they need to be changed and fed. It sounds bad but it’s a great feeling, at least for now.

Guess where we are

Sorry it has been so long since we have posted but it has been a long week. We had to room in with the boys and it was on separate days. We roomed in with Braylon on Monday and were able to room in with Kaden last night. So Braylon got his taste of the RMDH for 3 days and then he was reunited with his brother last night and it was a long night. Braylon stayed up most of the night and his brother held his own, as he slept most of the night. We still wake up every 3 hours for their care times and it has been catching up with us but it has been worth it. Braylon will be on an apnea monitor for a while and his brother Kaden will home with some help from a huge oxygen tank. They just brought it to our house.
Ya, that’s right we are finally home after 69 days at the NICU. We got into to town today around 3 o’clock and have just been enjoying the house. Its back to a clutter, but a happy clutter. I finally have other people in the house and we can start our journey. The boys don’t really seem to notice as they have been sleeping but I’m sure they are jumping on the inside. We are going to take this week to calm things down and have some family time for one whole week as I have taken the time off. So we ask for this week that in case people want to stop by and see the boys that they just hold off for a week or so and let us get settled in. We are so glad to be home it is such a warm feeling to actually get to sleep in our own house all together. Thanks to everybody for keeping us in your thoughts and prayers, for all of you were in ours as well. Too all the mothers happy mother’s day and we hope that you will have as great of a mother’s day as we will. We will put some pictures up soon and will try to keep the blog updated as much as possible.

Roid Rage

Yesterday was my first day back since hearing the good news. We found out that we get to room in with Braylon on Monday and he will be breaking out of the NICU. It is a happy sad feeling because we will have one boy out and the other will still be in. I guess it’s more of a positive feeling because we are moving in the right direction. They say that Kaden isn’t very far away and he has been nippling a lot of his feeds. If he nipples them for 48hrs the tube will come out of his nose. There might be asterisks next to his name because the boy has been taking steroids. I don’t know what the drug testing is like in the NICU but they might give him a 1 or 2day suspension before taking out his feeding tube. Maybe we will push for an appeal and get it knocked down a little. He does seem to have a lot more energy since being on the steroids and he is doing a lot better but he has had some roid rage recently. That’s about all the good news that we have for now hopefully more will come in the next few days.
Also yesterday was the March of Dimes in Lewiston. It was a long grueling walk but we all made it. I think there were about 60 people for team Beau, they raised over $9000, surpassing every other team. Way to go.

A Giant Leap for Mom-Kind

For the past several days mommy has been absolutely exhausted both physically and mentally. Physically in the fact that for about 62 days I have been going through the same routine of getting up and getting dressed every morning in order to feed and hold my little boys while continuing to pump in between care times. I generally live off of 1 to 2 large meals a day because I hardly have enough time to eat with everything that is going on. The nurses keep encouraging me to be better about eating and taking breaks but it is a little difficult when you are the only one with the proper equipment to breastfeed the boys and they are also encouraging me to breastfeed Braylon almost all of the care times that I can go to and Kaden about two of his care times. It takes about an hour for each baby, and that is if things go smoothly, and by the time you are done with both it is time for the next set of cares. I know it will get easier at home because all we will have to do is feed them and change their diapers, not take their temperature, change the probe on their foot, wait for the nurse to do their assessment, wait for the nurse to get the milk out of the fridge and warm it, etc.
Now, for the mentally exhausting part. So for about a month I have been questioning to myself if Kaden would benefit from steroid therapy. The doctors and I all agree that Braylon probably got the entire dose of the one steroid injection I received before delivering and that is why he has fared so much better in the respiratory department. So I have been thinking to myself, why can’t we give Kaden steroids now to help his lungs. I am not the type to go raising an issue unless I have gathered some information first. Plus, I have been trying to keep the mommy side of me and the nurse side of me separate and just let the doctors do their jobs. But, lately I have been feeling really, really, frustrated with how little progress we have been making, especially with Kaden’s respiratory status. He has remained on high-flow cannula and although we have been able to turn the flow down he has needed more oxygen to maintain his saturation. Not to mention that his respiratory rate has continued to creep back up and he has to work to breath, so much that he has been too exhausted to eat from a bottle and has needed to have them through his tube. So with my frustration I finally mustered up enough courage to bring the idea up to Dr. Egger, who nicely but immediately shot it down. While in the mist of our conversation, in which he shot my idea down, he mentioned that another doctor is more likely to use steroids. So when that doctor was the one to make rounds on the boys the following day I thought I would take the opportunity to ask him his opinion.
At first it sounded like he agreed with Dr. Egger but after he gave me the opportunity to explain my thoughts we were both on the same page. He said that it is not a common practice to use steroids on term babies but he did not see why not, since Kaden is no longer too small to be at risk for some of the side effects. He told me that he did not want to step on Dr. Egger’s toes because he was the boys’ primary doctor but he felt that my points were valid and worth discussion.
Yesterday, Dr. Egger was back and rounded on the boys. I could tell that things were a little tense and I felt almost as though he was avoiding rounding on the boys while I was in the room. Finally he did make his way in and he said, “So I hear you and Carl had a discussion about steroids for Kaden.” I explained that I wanted to know his opinion. He asked me why it was so important to me and I explained my thoughts. He again shot my idea down by saying, “I’m not going to do it but I am going to be off for the next six days so if another doctor wants to write the order….” I was a little shocked by his response and when he left the room the tears started to well up in my eyes out of frustration. All I wanted was for him to give me a good reason why he would not consider it.
Usually when the doctors round they leave the room and then come back after reviewing the charts. This time took longer than normal so I thought he wasn’t going to come back. Eventually he did come back and as he walked in the room he said, “Can I reserve the right to change my mind?” and I responded “Yes.” He said, “I do want to try a course of steroids and in fact I would like to take it one step further and use steroid breathing treatments also.” He explained that he did not realize that although we were turning the liter flow down we were needing to turn the oxygen up which really is not progress. He warned me about getting my hopes up because it was a guarantee that Kaden would improve while on the steroids but may rebound once the course is completed. I told him that was fine and that the worst thing would to be right back where we were that day.
That brings us to today. Kaden had had a total of two doses of the steroid by the time we showed up this morning. In that time they were able to turn his oxygen levels from 50% to room air and his liter flow from 1.5 liters to 1 liter and could have gone down further if the equipment had allowed it. At that time Carl, the doctor who had agreed with me, stopped by just to chat. He asked how things were going and I told him great but that I knew it might only be temporary. He said, “I don’t thinks so. You usually don’t see this big of a change this soon if it’s not going to work.” He also said, “I think this is what he needed. We are headed in the right direction.” This made me feel so much better about my decision. I had been feeling unsure about whether or not I had done the right thing.
The doctor that rounded today, who is usually against steroid use, came in and assessed Kaden and was amazed and also agreed that it was the right move and did not feel that even if there were a rebound effect that it wouldn’t be without progress.
During our afternoon care rounds there was some trouble with Kaden’s high-flow because they had turned to liter flow down so far. Because there was not enough air flowing through the tubing condensation kept building up and squirting in Kaden’s nose, so the nurse took it off to fix it. While she was fixing it she watched Kaden’s monitor and could not believe it when she noticed no change. We let him be without any cannula for several hours and he continued to do better and better.
When I came back after report the nurse from day shift stopped me on the way in. She said they had decided to put Kaden back on a cannula only because he had been grunting and holding his breathe so much trying to make a poop that he kept setting the alarms off. They decided to put him on a regular cannula so they could continue to turn the flow down without getting water up his nose. Basically he is on room air with a little bit of air blowing at him.
At this point he is where he would need to be, oxygen wise, to be able to go home. The doctors think that it may have even been enough of a step in the right direction he may not need to go home on oxygen. All he would have left to do is the nipple all of his feeds, which has also been better since he does not have to use all of his energy to breath. We are keeping our fingers crossed that this was the solution and there won’t be a big rebound. We will know in about four days if it is going to work.
In the mean time Braylon has been put back on the caffeine to help him breathe through the reflux and he has been put on straight breast milk. He has gone over 24 hours without a brady spell and the doctor today said that they won’t be doing anything right now because it’s the weekend but that he will have the home monitor people come work with us on Monday and for us to be prepared to room-in with Braylon Tuesday night, assuming he doesn’t have any brady spells for a total of five days and he passes his car seat test.
I am afraid to say it, but, I think we may be on the home stretch.

Same thing different day

Sorry it has been so long since we posted. Really as of right now there haven’t been very many changes. Beside the fact the boys have been moved to a different pod, they are both doing very well. Braylon is still on his 5 day countdown to going home, and he weighs 6lbs 14oz as of last night. He is looking so chubby now it is hard to believe on how small he was. His little feet are getting to fat for the pulse-ox to stay on, but we don’t talk about it around him he seems to get fussy about us talking about his chubbiness.
Kaden is still getting better. They have moved him down to 1.5 liters for his oxygen, which means he needs to get down to 1 liter and nipple all his feeds and hopefully he will be ready to come home. He weighs 5lbs 7 oz and is gaining about 1.5 to 2 oz per day with his thickened feeds. Both he and his brother are in big boy diapers, and it was good for Kaden because he had a big blow out the other day. He had 3 different outfits in a matter of a day because of his blow outs. Tonight we are going to give both boys a bath, and for me it will be the first time. Hopefully we will get some more pictures up and I will remember to post on the blog.

The boys are continuing to make progress although it never seems fast enough for me. It is always encouraging to hear the nurses, who have not seen them in a while, say how good they look. Both are gaining weight and Kaden has entered the 5lb Club as of last night. Braylon is still a member of the 6lb club. Everyone laughs about how plump he has gotten. He actually has rolls on his arms and thighs.
Kaden is still nippling about half of his feeds but keeps plugging away and does a little better each day. They have been able to gradually turn down the flow on his cannula and he has tolerated 2 liters from 3 liters for the past couple of days. Our goal is 1 liter of flow in order to go home on oxygen.
Both boys have their own obstacles to overcome before they are able to go home. Braylon has to stop having his brady spells and pass the car seat test. He is having lots of trouble with reflux which is the primary source of the drops in his heart rate. Kaden has to get his liter flow down on his oxygen and be able to tolerate it at 1 liter, although he has very few brady spells he has to outgrow those, be able to nipple all of his feeds, and pass the car seat test.
I am hoping that we will be home by their due date because they were due on Mother’s Day and that would be the best Mother’s Day gift ever. The nurses keep telling me that one day everything will just click and they will stop having the bradys, etc. I just keep waiting for that day to get here.

Here are some more cute pictures from everyone to enjoy.

P.S. Today is Daddy's Birthday but we can't say much yet until he is here to open his gifts.

Pictures As Promised