Wednesday, August 27, 2008

Boys are home!

We have our boys home - they are on apnea monitors but that's giving me some peace of mind anyway. We got word suddenly so we were go, go, go until late at night. We are exhausted! Gretchen is impressed - she thinks they are cute. Anyway, I will post some pictures later. I need to go eat something. I'm tired, hungry, thirsty, and need to hold a baby.... : )

Saturday, August 23, 2008


At least in these outfits, they no longer look like wards of the state...


Well, I don't know what to think. Sean had another episode this morning. He gets really close and then has an episode. I am frustrated and heartbroken. Maybe next weekend. They are talking about preparing Evan to leave Monday or Tuesday but it's really hard for me to believe anything anymore.

Friday, August 22, 2008

No News

The nurses were asking me today when the boys were going home. I looked at them and said "don't you know?". The doctors have not given me a date. I know with Sean we are waiting for five brady/apnea episode free days (Saturday is the fifth day). Evan is unclear but he should be close too. He has done well off of the caffeine so I asked them to get the car seat test done for him (that's a step to going home) as Sean has already passed. They both passed their eye tests today (no ROP) but they have to go back for a follow up in two weeks. We're planning on hitting Babies R Us this weekend to get some final stuff. It feels like there is a light at the end of this tunnel but I don't want to be too excited. I just keep praying for their health and safety.

Thursday, August 21, 2008

Month Old

Tomorrow the boys will be a month old. They are definitely getting bigger. Sean hasn't had any episodes since the 19th so Sunday would be the earliest he goes home. Evan is doing well off of the caffeine. He is scheduled to get his circumscion this week. Both will get eye exams tomorrow. Both are gaining weight. Sean is close to six pounds and Evan is close to five pounds. I am feeling upbeat but you never know what will happen!

Tuesday, August 19, 2008

Tuesday Was Better

After yesterday, I was kind of dreading the hospital today but of course I could not avoid being there. Sean (is the baby without the hat in these pictures) was a little fussy in the morning and was desatting (dropping oxygen levels) here and there. I was worried about him again and my confidence was shaken a bit by the last few days. The afternoon went better - he seemed more peaceful and was breathing nicely. The doctor talked to me about possibly taking Sean home with a monitor when he has made his five brady-free days. A home monitor sounds daunting but I will be a nervous wreck when he comes home so maybe it's good. I'll post more when I know more about it.

Evan (pictured with a hat on above) had his feeding tube taken out because he's taking all bottle feeds now. I was happy to see his little chubby two chinned face! He seems to be doing good. Like I posted yesterday, I do not want to get too excited. He has a history of setbacks so I don't want to celebrate yet. So just check out his little cutie pie face!

Tomorrow Steve is off so we are taking Gretchen to Six Flags. Part of me would rather be at the hospital but it's better to take advantage of the time we can spend with just her since we will not have that kind of freedom very soon. When I think of it that way, I know it is the right thing to do.

It's Going to Be a Long Week

It turns out Sean had another brady on Sunday evening where he required oxygen. The nurses assure me this is just due to prematurity but it is hard to take. On Monday he another brady in my arms which is hard for me to cope with too often (last time it happened while I was holding was over a week ago). I am worried for him and have been praying for him. Other than the brady episodes, he has a little diaper rash. They had him laying with his naked butt in the air to help dry out his bottom. I got a picture of it but haven't posted it yet. It's cute...

Evan is seemingly getting his act together. He took two bottles for me in under ten minutes when it was normally taking him 30 minutes. The nurse on Monday said "maybe the light bulb in his head finally went off". It's a funny way to put it but let's hope she is right. He is off the caffeine and is still gaining weight. He is now four pounds and ten ounces. He hasn't had any apnea episodes but part of me is holding my breath.

Monday was rough. I came home crying (the nurses were hugging me which I take as a bad sign) because of the brady Sean had in my arms. Steve made me feel better. I know intellectually that all will work out in time but that does not always help emotionally. Tomorrow is another day thankfully!

Sunday, August 17, 2008


Feeling better today - I was in the dumps yesterday. Sean is fine - no more episodes. He's eating, gaining weight, filling diapers... He is healing from his circumcision (poor thing). Evan is still working on bottle feedings still. He is getting better with each feeding. He got his last dose of caffeine today. They will keep an eye on him to make sure he is not desatting (oxygen level in his blood drops). If he has issues, they will put him back on the juice. So we'll see.... Maybe next weekend will be the magical weekend that a baby comes home. You never can tell!

We have had a lot of support from family, friends and our church. People have been bringing us food, emailing us, calling us and we greatly appreciate it. I don't always get back to people as quickly as I would like to but I am trying! Thank you all for being so generous in time and spirit!

Saturday, August 16, 2008

False Alarm

Sean was supposed to come home today. However he had a very bad apnea/brady episode last night so he will not be coming home. I am disappointed but really scared for him. The doctors say it just happens from prematurity but it's hard not to worry.

Evan is doing good. He is up to 4 lbs and 7 oz so maybe he will catch up to Sean. He is only bottle feeding every other time since he gets tired. Evan is on his own time schedule that's for sure.

I was worried about having the boys separated if Sean came home but I guess they will be together now for at least five more days......

Thursday, August 14, 2008

Going Home?

Sean might be coming home this weekend - we're in a wait and see mode. I am not getting my hopes up again. Even though I was scared to bring him home last time, I was so heartbroken when we didn't get to that I am not getting excited until they call me and tell me to bring his going home outfit!

Evan on the other hand will be there for a while. He is slowly getting better at bottle feeding. Once he is taking all of food in a bottle, they will wean him off of the caffeine. Once that happens, they have to wait several days until it's out of his system completely to see if he is breathing okay on his own. It sounds like Evan won't be home for at least a week and half more. I am hoping to get him home by Labor day (that's my worst case scenario day in my head).

I am very lonesome today - the carpet for their room is being installed so I am not sure when I will get to visit them in the hospital. Like the weekends, I get kind of ancy if I don't get to hold my babies.... At least the room will be close to ready...

Tuesday, August 12, 2008

Turning a Corner Maybe?

Sean is doing good - no more brady episodes so far. He is 5 pounds now and is eating great! Evan is off of the nasal cannula but still has a feeding tube. He is still on a bed instead of an isolette or crib but the nurses were talking about moving him to a crib today. He is starting to take bottles but not at every feeding. They don't want to push him too hard and I agree. He still has tape on his face for the tube and possibility of the cannula (that's him in the picture!). I am hesitantly excited to see his progress but it's possible he will still need oxygen but maybe the caffenine is finally working! At any rate, I feel positive! Maybe this will be over in 10 days or so... Joy!

Monday, August 11, 2008

Waiting Game

Sean has had another bradycardia this weekend (an episode where the heart rate drops) which is not uncommon for a baby his age. Preemies forget to breathe sometimes and their heart rates drop during apnea spells. Anyway, the hospital wants him to be "brady free" for five to seven days before allowing him to go home so it will be at least another week from today for him to go home. Sigh.... While I am relieved a little since it's scary for him to have these spells, I am heartbroken at the same time. I do wish I didn't feel anything at all sometimes because it would make this a lot easier but I can't help it. I am growing very attached to my little babies. They have little personalities and funny faces. I know it will be over soon - I just have to keep reminding myself of that....

Evan is doing better I am happy to report. He is off of the high flow nasal cannula and on a regular oxygen nasal cannula. He is gaining weight and has started bottle feeding. I gave him a full bottle (35mL) today and he did great. Maybe in this week he will finally catch up to Sean a little. I don't want to get too excited though since I know he needs to go at his own pace.

All in all we are okay and coping. I know some of my friends are worried for me. I can say that I am pretty good for six out of seven days in a week. I usually fall apart a little one day a week but Steve jumps in when he sees my face fall and takes care of me. I am glad he knows me so well!

Here are today's pictures of Sean and Evan. Plus another video of Sean.... (only because I want to show them off....)

Saturday, August 9, 2008

Long Weekend

Well, Sean had a few episodes last night that may or may not compromise his release. I will know more later today hopefully. Evan is still on two liters of oxygen but it's room air so he is relying on the flow more than the oxygen purity. He lost a little weight but we expected that. Yesterday I got a lot of time with Evan - I feel like he needs it though I spent a lot of time feeding Sean. Sean had an apnea episode yesterday that scared me to death. I was feeding him and he forgot to breathe and lost all the color in his face. His oxygen level dipped. I stopped feeding him and started burping him to get him to breathe. It worked but it really freaked me out. My heart was racing for a few hours after that.... His nurse says it's normal for that to happen to preemies and that she was glad I experienced it in the hospital so I understand how to deal with it if it happens at home. Yikes! I was getting nervous about Sean coming home but now I am not sure when that will happen based on last night. It's up and down for us I guess.....

Here is a video of Sean and one of Evan. Evan is wired and antsy (I think from hunger and maybe caffeine). Sean is drifting to sleep.

Thursday, August 7, 2008

Patience is a Virtue I Don't Have Sometimes

Evan is still struggling a bit with his oxygen levels. The neonatologist looked at his chest x-ray and explained that what is happening to him is not that unusual. Apparently the little sacs in your lungs should be soft but Evan's are stiff due to prematurity. They will be giving him doses of caffeine to help keep the sacs open in his lungs so he does breathe, the breaths will be deeper. He doesn't have an infection as all of his tests have come back okay. He is also on a high flow nasal cannula that is delivering oxygen to him so he doesn't drop in oxygen levels. If he does well with the caffeine, they can take him off of the oxygen. There are no long term effects of caffeine so I am hopeful that is helps him. Sadly it is a setback in terms of going home soon but it's something time will heal hopefully.

Sean is doing much better - in fact they are saying he is a big show-off because he is doing stuff he shouldn't be doing yet. He is taking all of his feedings from a bottle, he is maintaining his body temperature and has been transferred to an open air crib. They removed his feeding tube as well so he almost wireless. If his weight gain persists and he continues to do well he may be able to come home in four days. However, babies burn calories bottle feeding when they are this young so it's possible his weight gain will slow down.

So I have mixed feelings. I would love to be able to take them home together but it's not going to happen. I feel good that at least Evan is likely to get better. I just need to be patient!

Wednesday, August 6, 2008


Evan is better. He did really well on the oxygen. His x-rays were okay. They did see a small spot on his lung so they thought it could pneumonia. The neonatologist did not think it was that so I am not sure how long he will be on antibiotics. They are feeding him again though and he seems much better. So I am hoping this was just a bump in the road. Of course they will have to increase is food slowly and decrease his oxygen slowly so it may take a day or two to get him back where he was.

Sean is doing well. I got to nurse him a little on Tuesday. I am so amazed a baby that small knows exactly what to do. I also bottle fed him. He seems to be doing really well with the bottle feeds. They are slowly bringing down the temp in his isolette to help prepare him for maintaining his own temp.

Finally, the other two babies that have been in the nursery with the twins went home this week. Their parents were so happy. I can't wait for that to be us. Maybe in a few weeks.....

Tuesday, August 5, 2008


The doctor called us at 11pm last night to let us know that they were putting Evan back on oxygen and an IV. He was having episodes were his heart rate and oxygen saturation were dropping all day (I witnessed it a few times myself) and his color was bad so they felt it would be good to help him with the breathing. It sounds like it is related to the stomach problems he was having so they gave him an x-ray that came back okay. They also did blood work that came back okay. He is on antibiotics in case it's an infection. We'll know the results of the blood cultures in 48 hours which presumably will tell us if he has an infection. It's probably nothing but it worries me of course. I was feeling too calm I guess so now I have something to worry about..... Heading to the hospital early today so I can spend extra time holding Evan. I don't know if it is true but they say frequent contact with your premature baby helps make them stronger while in the hospital...

Monday, August 4, 2008

Two Week Birthday

is tomorrow.... And they have made progress. Evan's IV is out and he is taking feedings in a gavage tube (through his nose) consistently. He is up to 35mL at each feeding. He is still having some apnea episodes that the nurses are watching. I think he might get a cannula if it persists but they have not done that yet. Both have surpassed their birth weight finally (all babies lose a little weight after birth) so they are growing. Sean is eating consistently so much so they tried him on a bottle Sunday which went well. He took 25 mL in a bottle the first time and 15mL the second time. They are only going to do one or two bottle feeds a day so as to not wear him out. Sucking/eating from a bottle is a learned experience where babies have to learn how to stop the flow of milk and breathe. All in all it is going well but the progress happens slowly so we're still looking at 3 more weeks probably. Sigh.... One of the other moms told me that it will go by quickly. I hope so.

While we waiting, we are finishing up the babies room. The room was measured for new carpet which we hope to get installed in the next few weeks. We are shopping for the second crib now as well so it will be ready. I will be pulling out the bottles and washing the clothes we have for them too. We have received some very nice gifts from several people so I have many thank you cards to write. We are touched and overwhelmed by the generosity of our family and friends. There are not enough words to express our gratitude but I will do my best as I write the cards.

Friday, August 1, 2008

My Boys

The boys are progressing nicely. Both are gaining weight (joy!) and their sucking reflexes are developing slowly so hopefully next week we can start bottle feeding. They still have episodes where they forget to breathe but that is normal for premature babies. They start breathing on their own again in seconds. Tonight Steve went to a concert and Gretchen went to a slumber party at her cousin's house so I went to the hospital at night. It was a mad house. They had seven babies in the NICU (including another set of twins). It was a good reminder to me that it happens all the time (premature births). It also made me appreciate how well our boys are doing considering the circumstances. I have posted more pictures and a little video of Sean.