Lots of Ups and Downs

I know I don't update the blog much but there are too many ups and downs for that. Every time I call or go over to the NICU there is always something different. Sometimes it is a good different and sometimes it isn't so great. For example, both boys have been doing well. Benjamin has really taken off and has done the best. He is on a nasal cannula right now and he is tolerating his feedings. He is also 3lbs 14oz and he keeps gaining weight. He is so much fun to hold and he is just cute. Jacob has had a harder time. I think it is directly related to the fact that they had Twin Twin Transfusion Syndrome and he was always behind. He is off the ventilator and hopefully he stays off of it. The doctors gave him a steroid that has pretty nasty side effects at a high dose. It is something I worry about though but that steroid is keeping him off the ventilator for now. Last week I was able to go in and help bathe him and I was also able to hold him for about an hour after that. That was Thanksgiving day. Since then I haven't been able to hold him because he works so hard to breathe that some days he doesn't do well and the nurses won't let me hold him. I hate those days. Jacob seems to do well when I am allowed to hold him. I hold him about once or twice a week and that is it. I hold Benjamin every time I go in to visit. Thank goodness there are two. If I can't hold one I can hold the other. It isn't the same because Jacob is different but that is okay. Doug hasn't been able to hold him yet so I can't complain much.

Being in the NICU Thanksgiving day was very interesting. We have so much to be thankful for. This pregnancy was full of downs and finally in the end there were some ups. I feel like I can breathe now although the boys are in the hospital and not with us. They were born and were able to gain a body. I love that. I am so grateful for that. Even though there are a lot of ups and downs these boys are true miracles. I didn't think the boys were going to get past the 16th week of pregnancy. Doug and I thought we were going to lose them back then. The fact that they are here is amazing and I feel very lucky and privileged that they came to me; even though it wasn't fun at all during this past summer.

We can't wait for them to come home but we do know that they are in the hospital for a reason and we will be more than okay bringing home 2 healthy babies. We can wait for that. We have waited this long for them to get here. What will another 7weeks do?

Hopefully This Lasts

So, today I went in and was able to kangaroo hold Benjamin. Remember that is when I take my shirt off and I hold the baby to my chest for as long as they let me. It was great and at the end Benjamin let out a yelp right before he went to the nurse. It was so cute. He weighs a whopping 3lbs 14oz. He is doing really well with his food. The nurse also told me that his picc line should be out by the weekend. That is great because I will be able to get him in and out of his isolette without the nurses and I won't have to be as careful of his foot. I am careful with him but with that out if I hold his foot I don't have to worry about the picc line coming out.

Jacob is off of his ventilator!!! For now anyway. The doctor is really hoping he can stay off the ventilator. I didn't hold him tonight but I think I will push for that tomorrow. I hope he will be good and stay off the ventilator. He is on CPAP now. It is at a high rate but they are watching him really closely to see if he is good or not. I am praying he is done with the ventilator. I know he hated that thing. I heard him for the first time today. He is pretty cute as well. I can't wait to hear him yelp like Benjamin did today.

Little chunkers

I just have to write that Benjamin is now 3.5 pounds. What a little chunker!!! I haven't called about Jacob yet so I am waiting to see what he weighs. They are pretty close to each other so it is great they are gaining so much weight. I am so excited about this but they are still very small babies. Benjamin's head fits in my hand still. :)

I just called about Jacob and the nurse said he is at 3 pounds now. They are increasing his amount of breast milk. She also said that they might be taking his tube out in the next 24-48 hours. Then he will go to CPAP and we will be able to start holding him. I am so excited. I don't want to jinx it though. Please pray that he will be able to get off the ventilator.

So Cute

Have you ever heard a squeaky dog toy? You know the kind you squeeze and it makes a cute high pitched sound? Well, that is kind of what Benjamin sounds like when he hiccups. It is really cute because his hiccup is very high pitched because he is so small. When he cries...it kind of just makes you laugh. He cried a little bit for me last night when I started holding him. He can pick up his head and move it from side to side. He has great control of his neck and it is weird seeing a baby this small move his head so well. He also runs out of steam really quickly so as he would move and stretch around he would fall asleep in the middle of stretching. This made for some hilarious positions and most of the nurses would stop and stare for a minute, although they were really busy last night. Oh and did I tell you...Benjamin is off of his CPAP and he is breathing through a nasal cannula. He started yesterday out at 3 liters of oxygen and by the time I arrived there last night he was down to 2.5 liters. When he gets down to about half of a liter they will take him off of that and let him try to breathe on his own. That is exciting.

Jacob is still on his ventilator but he is slowly gaining some ground. He is getting a little better each day. I don't know when he will be off of that but for now I can change his diaper and I can help give him a bath, if I am there when they do that. If I can't time it right I sit beside him and I put my hands on his back and we just sit there. I do that until he gets agitated with that, then I go and see Benjamin.

The incisions on their backs are getting better. They aren't so puffy anymore. I kept thinking that would be how we could tell them apart, but they both have the same scar in the same spots. When they get older the scar will be so small you won't be able to use that to tell them apart either. I keep looking for something that is noticeable to everyone but there isn't much to go by. I can tell them apart now. They weigh about the same now which is great considering Jacob weighed 10 oz less than Benjamin just 3.5 weeks ago. They are both tolerating the breast milk well. The doctors increase the amount of breast milk they get every day. Sometimes the amount the boys get will go up several times a day. That is great because they need the fat to help them maintain their warmth. I don't think the boys have a problem with this though. They are little heaters. I held Benjamin last night for about 2 hours and he was very warm when I put him back in his isolette. At some point the nurses will start to bottle feed Benjamin. I think this happens next week. Jacob would also be able to bottle feed if he wasn't on the ventilator. When I hold Benjamin I bother him with sticking a pacifier in his mouth so he can try and suck on it. He hates it but he is doing well with it. The nurses said that babies will forget how to suck if they don't keep persisting with the pacifier. Anyway, I think that is all I have for now. I will try to take some pictures of me holding him and without his CPAP so everyone can see on of them. Oh, and just for documentation purposes these boys have blonde hair and blue eyes...for now anyway. :)

A Great Day

I had a great day today. Two days I was able to start holding Benjamin. I wasn't able to do kangaroo care with him but I was able to hold him. kangaroo care is when you hold your baby bare chest to bare chest. The nurses put a gown on you and a little privacy screen goes around you so you aren't exposed. Anyway, kangaroo care helps preemies improve faster than expected and it helps preemies with their breathing as well. In the end, kangaroo care with your preemie can also mean less NICU time for your baby. Of course there is an added benefit of holding your baby and bonding. Anyway, I was able to hold start holding Benjamin a few days ago. Even though he was all wrapped up he still cuddled right next to me. We both enjoyed it.

Yesterday I went in to visit the boys and I was told I could help bathe Jacob. I was so excited because Jacob is still on his ventilator and touching him other than putting my hands on him seems impossible. The nurse let me bathe him. She stood right beside me and instructed me on what to do. It was exciting!! He really liked me. As I was washing him he did decide to pee. Of course there was nothing covering him and he sprayed quite a bit. I am still learning all of this with boys. If I would have been standing 2 inches to my left I would have been sprayed. Instead he sprayed the floor. I didn't have to clean that up. :) All of the nurses died laughing because they know these are my first boys. It was kind of a good thing Jacob did that because his bedding needed to be changed after that. That meant I had to hold him for the nurse so she could change his bedding. At first she asked if I wanted to change his bedding or hold him. I picked to hold him, of course! Then the nurse asked me if I had held him yet. I told her I hadn't and so she grabbed the ventilator and I was able to cuddle with him for just a quick minute. He cuddled right up to me and went to sleep. I loved it. It has been three and half weeks since he was born and I was finally able to hold him. I was so excited, even if it was for just a minute. Jacob won't be coming off of his ventilator for a while though, so I won't get to hold him that often. I really pray a lot that he can get better and heal enough so he can graduate from the ventilator to CPAP. Then I can start kangaroo care on him.

Today, I was able to bathe Benjamin. That was fun as well. Since he if off of his ventilator you can hear him cry now. It is the cutest thing you have ever heard. His cry is so small and quiet. I love it. He didn't cry a whole lot though, which shocked me. I figured he would because most babies cry while you bathe them because they get a little cold. He loved it. The little bit of crying he did do was short lived and absolutely adorable. After I bathed him the nurses bundled him up and I was able to do kangaroo care with him. YEA!!! We both enjoyed it. He cuddled right next to me and he went to sleep. I held him for almost and hour and a half. The nurse let me hold him a little longer because he was able to hold his temperature really well. In fact, his temperature was a little on the high side. He is a little heater and that is great he can hold his own temperature. I can go and hold him everyday like that if I want. When I was holding him his breathing was steady and his heart rate was great. He kept sliding around a little bit and he would settle right over my heart when he heard it. I kept moving him so it was easier to hold him and he would scoot back down again. It was funny and after I realized what it was he was looking for I stopped moving him. He was happier after that. I can't wait until Jacob is off of his ventilator so I can do kangaroo care with him as well. I will patiently wait though. I have waited 3 weeks to hold him for just a minute, I can wait a little longer, I am sure.

Okay Here You Go

I figured I can post 2 pictures of the little ones. I will not be using their names though. If you haven't heard what their names are then you can email me and I will let you know. Anyway, these babies have come a long way and they still have a long way to travel but the road isn't as bumpy anymore (I hope). Baby A is almost off of his ventilator and Baby B is much closer to being off of his ventilator than his brother is. I woke up sick on Tuesday and I have been banned from the NICU until tomorrow. That is pretty hard not being able to see your babies. The nurses keep asking how I am when I call and I keep asking if the boys are sick or not. I really worry that they will get what I had. I don't know what would happen if they would get sick right now. So far the boys are okay though. They are both being fed breast milk. They have both recovered fairly well from their surgery. They are off of their pain medicines and other medications they had to be on for the surgery. Baby A weighs 2lbs 10oz and Baby B weighs 3lbs 3oz. The boys have sandy blonde hair and we still can't tell what their eye color will be. Their hair does seem to be getting lighter with every bath they get though. I am hoping it stays that color. I think that is all for now. I will keep everyone posted on whether or not they get sick. These pictures were taken right after they were born. They have gained a lot of weight since then.

I do have some funny stories about these two though. Our boys apparently are very feisty. Baby A has taken his ventilator out successfully by his self. He was being bathed the other day and he took it out. He is also successful at taking his leads off and scaring the nurses. Baby B is about the same. He was on his stomach the other day with his ventilator in. The nurse walked away and about 15 minutes later she looked over and he had lifted his head and turned to face the other way. The ventilator didn't come out but she was shocked by this. Every time the boys are on their tummies they will scoot all over the place. This also takes the leads off. The nurses all know these two right now. Every nurse I talk to has heard stories of these 2 little ones and they are only 2 weeks old. We are in for it, I think. :) I have other stories but I will save it for another post.

And Then You Feel Grateful

I went to a meeting for NICU parents this past Friday. It is a support group. I sat there and listened to everyone's stories and the heartache they are going through. Several thoughts crept into my mind after that meeting. One, I am so lucky I made it to nearly 28 weeks. Two, I am even luckier that I had those wonderful perinatologists watching over me (even though it wasn't fun in the hospital). Three, I am grateful I was given the steroid shots exactly when I hit 24 weeks because these babies are breathing really well compared to the other babies whose parents I met. I am thankful I get to touch them as much as I have been able to. I don't think you can touch the babies born at 23 weeks because their skin is still too fragile. It will be a long road in the NICU but our road isn't as long as some others. The baby next to me has been in there for 10 weeks already (he came around 24 weeks) and we think they have about 8 more weeks or so to go.

In the end, yes I am happy and grateful I sat in the hospital for 4 weeks bored out of my mind. I am grateful I have had the best doctors on my side for my entire pregnancy. I am so grateful my time in the hospital was able to buy our boys some great growing time inside. That is what I am thankful for this holiday season.

Sometimes this is frustrating

Doug and I knew we would have premature babies. It was the nature of this pregnancy. After the laser surgery I had we were told that the babies would need to be born at about 34 weeks. We were okay with that because our oldest was born that early. We didn't think much else would go wrong with the pregnancy because of what had already happened. We didn't think we were exempt from having other problems we just figured not much else would go wrong. It took us by surprise when the babies came at almost 28 weeks. I figured I have dealt with one preemie before I can do it again. So far things have gone well. The babies are doing as well as they can right now. They are still recovering from their surgeries. Both have gained some weight. Baby B is pushing 3lbs!! Baby A is pretty close behind his brother. That is great as well. They are premature though and I am reminded of that almost constantly. Premature babies are different. They really don't like to be touched or talked to because they aren't used to it yet. Last week I was able to touch them and very quietly talk to them. I did notice that sometimes they didn't like it. I think I reached my limit when I tried to touch Baby A last night and he freaked. His oxygen went down. Then I just tried to talk to him and his oxygen level went down again. Then I tried to just sit there and keep close but I had to move my hands out of the isolette that he is in and I had to shut the doors. That was the frustrating part. What were we doing there?! If we couldn't do anything but look we felt useless and in the way. So, after about 5 minutes of just sitting there and only looking we headed for Baby B. We washed our hands and pulled a few chairs close because he always lets us hang out with him. I put my hands over him and the same thing happened. Well, I didn't even bother to talk to him I just pulled my hands out and shut the door. I was seriously frustrated. We really didn't stay for long to stare at him. We left right away. There wasn't a real point to us being there. The nurses felt pretty bad as we left right away. We really didn't say much to anyone on the way out.

We were obviously upset because before the surgery we would be able to always touch them and at least talk to them. Not now. :( I know it isn't a personal front to me, but it would hurt anyone's feelings if they touched their own kid and the breathing would go down right away. You feel as if you are helping the decline of your own child. So, I came home and cried a little on the way home. I am not talking full on sobs but I had some tears. It was extremely frustrating. I know they have been through a lot. I suppose as parents we need to feel the love because we need to know we are wanted and needed. I know there is no way they could have prevented the babies from coming that early. Trust me, they did try but when you go from being dilated 2-8 in one hour there isn't much time for anything. They did try to stop it. So, I know this isn't my fault they are so early. I just want to touch them. I don't think it helped that a lot of parents were also able to hold their babies last night. We haven't been able to do that yet either. I think that adds to the hurt we were feeling. If you would have talked to me last night I would have told you that I didn't want to go back until they were much better in several weeks.

I woke up this morning and I needed to go to the hospital to get some paperwork done. I decided to just pop my head in and say hi. I wasn't going to touch them at all. I honestly didn't want to touch them. I couldn't touch Baby A because he was already having a fit from the nurse touching him too much. I did open the bed he is in and I said hi and that I loved him. His breathing evened out a little bit after I shut the door again. I stayed for a minute to look at him but there is nothing else I can do. So, I went to check in on his brother. Baby B was just waking up for the moment and his nurse took off his eye mask for me. He opened his eyes and looked at me. I wasn't going to touch him either because I don't think I could have been rejected two days in a row. The nurse encouraged me to go and wash my hands so I had the option if I wanted to. His vitals looked fine enough. I washed my hands and opened the little door. I just talked to him though. I wasn't going to touch. I couldn't. As soon as I said his name his eyes popped open and he tilted his head toward me. The nurse loved it. She told me to go ahead and touch him. She could see my hesitation and told me it isn't me, its the noise that he doesn't like and the stimulation from it. I tried. I touched his head and he cuddled right up to my hand. I felt loved again. :) I know they love me but it is nice to see it as well. We did this for a while. Then I put my other hand in and pushed his legs against his body so he was squished together. He really likes that. He was in heaven for the little while I was able to be there. That made me happy. We still can't hold them but for now this works. I still can't wait to hold them; that will be a while though. They both need to be off of their ventilators before that will happen. Like I said, this whole process is frustrating. Patience must be what I am supposed to be learning. Patience is something I don't have a whole lot of. I suppose this is why I must learn patience. :)

update on twins

I wanted to update everyone on our twins. They had surgery today on their hearts. They had a PDA that wasn't closed so the surgeon went in and closed it. Usually, when babies are closer to full term this artery closes by itself. Since the babies were so early, it didn't close. It is important for this surgery because if the PDA isn't closed the heart works very hard to pump too much blood to the lungs. Eventually the boys would have had problems from that if we didn't do the surgery now because they don't need that much blood going to the lungs. Now, since their PDA's have been closed the lungs will get the proper amounts of blood and things will start to work better. The boys should be able to breathe better and they can continue to heal and grow bigger and get healthy enough to come home at some point. It will take a few days for them to recover from this surgery before we start to see more improvement. We stayed at the hospital today to be with the boys before and after their surgeries. It was exhausting. During baby b's surgery we went over to Sweetwater Tavern because we were both really stressed and we couldn't go and sit with baby a because we were just reminded of what baby b was going through. The root beer was really great. I have never had root beer with an anise taste. Doug and I are convinced there are some other flavors in it although they wouldn't tell us what it was. We had never been there before and it was nice to be out of the hospital and we were able to concentrate on something else for a little while.

After baby b had his surgery we went in there to check up on him. He was still asleep and the nurse let us see his scar which was good for us because then we could see what happened and it wasn't as bad as we thought. It was also very hard to see them and not be able to touch them or kiss them. Preemies are very different and too much touching is not a good thing. That was the hardest for me anyway, not being able to just hold them and talk to them. I hope we will be able to hold them soon. I really can't wait for that part.

Thank you to everyone who fasted and prayed for us and our little boys. I believe all of our prayers have been heard and answered. That is honestly the only way we have been able to get through any of this. I will keep updating this blog about the twins and maybe here soon I will post some pictures of the boys.