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

A Big Move

The boys have been reunited once again. They are now co-bedding again and both have Tucker Slings which helps keep them up right on the incline in their bed. Our nurse today didn’t think that it would be a problem to have Kaden elevated too. We are happy to see them together again.
On another note, we have been moved out of the East Pod to the Center Pod today for staffing purposes. We almost had a window room and a roommate but I threw a little fit and told them I preferred privacy over a window. There was absolutely no reason why we should have a roommate when there were several empty rooms (the staffing problem is that things are slow). I think our nurse felt bad because I think she could tell I was not happy with the move. There are people whose babies have only been there a few days and will be going home sooner than ours that could have moved. I am a little irritated that they would move someone who has been there as long as us and still has some time to go. We had made our other room feel more comfortable and then we had to move. Oh well, maybe we will have better luck in this room and we will get out of there sooner.
Both boys are making progress. Braylon has less brady spells and Kaden’s respiratory rate has been normal. They were even able to decrease Kaden’s high flow cannula from 3 liters to 2 liters. Once he can get down to 1 liter and nipple all of his feeds he will be really close to going home, even if it is with oxygen. He has a few brady spells but not nearly as many as his brother did. The nurse tonight said that he is improving by leaps and bounds and thinks that he won’t be too far behind Braylon. He is nippling every other feed and would nipple all of them if he had the stamina which will only come with a little more time and practice.
Braylon has had several massive poops today after being stopped up for over 24 hours. Thank goodness we moved him out of preemie diapers into size ones just in time because he would’ve had several major blowouts today.
I was able to hold both of the boys together tonight and it was so entertaining. They were both wide awake and interacting with each other. They were grabbing at each other’s faces and staring at each other. Braylon grabbed a hold of Kaden’s tubes and Kaden tried to suck on Braylon’s fingers. Brenda was able to get lots of good pictures and I will try and post them tomorrow.

Last night was a calm night. Both boys are doing well. Braylon is still having trouble pooping and they gave him prevacid, which helps with his reflux and some pear-nectar to help him poop. The reflux has been getting a little better, but he was still having trouble keeping in his stinky surprises for too long, but hopefully last night he gave the nurse a big ‘ol diaper sized pudding dessert. He hasn’t gone for over 24hrs so I’m sure when he does go it will be a big one.
Kaden has been doing well. He has been nippling every other feed and his respiratory rate has been staying down. He will be getting an increase in his protein, which will hopefully help him grow more, and he will now start stinking it up with his brother. The doctor also told us when he thinks the boys will be ready to come home. He said Braylon could be getting out in a week or two, and Kaden would be about a month or so. I would rather them just tell us a day or two before they knew exactly when they would be getting out. Braylon has been supposedly getting out for the last 3 weeks, and it kind of gets our hopes up.
Its been a long road, and I know things can only go up from here. I have two strong, healthy boys, and a beautiful strong wife, who hasn’t seen our home in over a month. She has been doing very well up here without me being around all the time, and I’m proud of her for that. So hopefully in the next month we will be out of Spokane and won’t come back for a long time.

more ups and downs

It’s amazing that in less than a week the boys change so much. They look bigger, have more color, and are more alert every time I come back and see them. Both boys are doing well, and have been separated again. Braylon was having to many brady spells and needed to be more elevated after he ate. The nurses didn’t think that would be fair to Kaden since he was doing alright just the way he was. It also makes it easier for us to do their cares. The crib sharing was fun while it lasted. Plus I think Kaden was getting tired of Braylon bragging about breast feeding and nippling all his feeds and stinking up the place.
Kaden was able to nipple a couple of feeds today. They have put him on lasix, which helps him get out the extra fluids that he is holding onto. This also allows his respiratory rate to be lower and then he is allowed to eat from a bottle or mama. We leave it up to him. They also said to not be surprised if he loses a little weight since they put him on it, but as of last night he weighs 4lbs 9oz. He is starting to be a little porker. Ash and I decided to try and nipple feed him every other care as long as he is up to it. We hope that it will help him grow and hopefully get him out of here faster.
Braylon has been doing a lot better with his brady’s since being elevated. As of tonight he only had a hand full, which is a move in the right direction. It seems to be with him whenever one problem gets better another occurs. He has been getting some stomach problems we think. Before when he was done feeding you could guarantee that he would have a surprise waiting in his diaper, today and yesterday it hasn’t been happening. After he eats he doesn’t really want to burp or leave a surprise and that has been irritating him. He will fuss and fuss and all we can do is try to get it out. The nurses brought him some gas drops and it seems to work but it takes a little while for it to sink down into his system. Hopefully he will do better tonight and he will let out a good one for his nurse. Even with his recent strike on pooping, he has gained weight and is now at 6lbs 1.2oz. At the rate he is going he will be crawling out of the NICU.