Since Isaac is finally home and a part of our family, we are going to post all of his updates from now on in our family blog. Please visit us anytime at www.joyofjonah.blogspot.com for updates on Isaac and Jonah and other fun stuff.
Thank you again for your prayers, your love and support. It has meant the world to us and has truly sustained us during the last five months.
Tuesday, May 29, 2007
Sunday, May 27, 2007
Okay--update time. Overall Isaac has been doing well since coming home. He was about 7 lbs when he left the hospital, and two weeks later is 8 lbs and change (I know! 8 lbs!). I'm ecstatic about that--especially since he's only getting breast milk. For his height, he's totally obese. It's great. He's got rolls everywhere.
The first week was a real challenge. Isaac's reflux was really bad and he wouldn't sleep at all at night. Jaska and I were complete zombies and I was secretly terrified that this is how it would be for the next 6-12 months. Luckily, things began to settle down this week and he actually sleeps in between eating at night.
We had a scare this week and almost had to bring him to the emergency room. He had been coughing constantly for a couple of days and at first we thought it was his reflux acting up. He started running a fever on Wednesday evening and was completely miserable. He wouldn't eat anything and wouldn't sleep. Our first thought was to take him in to the emergency room, but then we remembered that we have this network of specialists, on call nurses, and doctors to go to during just such a time. So we called his Pulmonologist (Lung MD) at about midnight and he talked us through it and prescribed some steroids for Isaac with the plan that if he didn't get any better by morning we would admit him to the hospital.
Thankfully, by morning he was doing noticeably better. His at home nurse came the next morning to check him out. We happened to have an appointment with Pulmonary two days later, so he was able to be evaluated without having to be admitted to the hospital. By then he was doing basically fine. It appears as if he caught a little cold or virus--weird. Very scary, but we got through it.
Other than that--Isaac is basically your typical newborn. Neurologically and developmentally he is one month old. He's right on track for that age developmentally which is awesome. He puts his hands in his mouth, tracks objects, stares at us and anything interesting with profound interest. Normal stuff, but it is so exciting for me because every milestone he meets means only good news for his prognosis.
We are finally settling in to being a family. It's funny how much you forget about newborns until you have another one. Constantly Jaska and I are saying, "Oh yeah--I remember this part." (and not always with fondness :)
Jonah is the best big brother ever. We'll catch him hugging (very gently) and singing to Isaac all the time. He gets embarrassed when we catch him, but it is so very sweet.
The first week was a real challenge. Isaac's reflux was really bad and he wouldn't sleep at all at night. Jaska and I were complete zombies and I was secretly terrified that this is how it would be for the next 6-12 months. Luckily, things began to settle down this week and he actually sleeps in between eating at night.
We had a scare this week and almost had to bring him to the emergency room. He had been coughing constantly for a couple of days and at first we thought it was his reflux acting up. He started running a fever on Wednesday evening and was completely miserable. He wouldn't eat anything and wouldn't sleep. Our first thought was to take him in to the emergency room, but then we remembered that we have this network of specialists, on call nurses, and doctors to go to during just such a time. So we called his Pulmonologist (Lung MD) at about midnight and he talked us through it and prescribed some steroids for Isaac with the plan that if he didn't get any better by morning we would admit him to the hospital.
Thankfully, by morning he was doing noticeably better. His at home nurse came the next morning to check him out. We happened to have an appointment with Pulmonary two days later, so he was able to be evaluated without having to be admitted to the hospital. By then he was doing basically fine. It appears as if he caught a little cold or virus--weird. Very scary, but we got through it.
Other than that--Isaac is basically your typical newborn. Neurologically and developmentally he is one month old. He's right on track for that age developmentally which is awesome. He puts his hands in his mouth, tracks objects, stares at us and anything interesting with profound interest. Normal stuff, but it is so exciting for me because every milestone he meets means only good news for his prognosis.
We are finally settling in to being a family. It's funny how much you forget about newborns until you have another one. Constantly Jaska and I are saying, "Oh yeah--I remember this part." (and not always with fondness :)
Jonah is the best big brother ever. We'll catch him hugging (very gently) and singing to Isaac all the time. He gets embarrassed when we catch him, but it is so very sweet.
Thursday, May 24, 2007
The Smell of Puke in the Morning
So--obviously we haven't posted in a while. Mostly because we are crazy exhausted and overwhelmed, but also because I don't really know where to begin. I feel like I should write down all my feelings about Isaac coming home, but since I don't have the emotional energy whenever I have a minute, I just put off writing anything. (Just know that we are beside ourselves happy and content with having our boy home. It's been crazy, but worth every bit.) So--I'll get to that aspect another day and instead deal with our cold hard reality--in a word: Puke.
Puke? Yes, puke. Or if you'd rather, vomit, upchuck, spit-up (HA!) wretching, cookie tossing--whatever you like. Essentially--our lives right now are centered around the fact that Isaac has some awful Reflux. He's on medication and we basically have to keep him upright 24/7 but he still pukes on us regularly. Just so you know it's not baby spit up type throwing up but exorcist shoot across the room type of stuff.
Frankly--it's awesome. It's gross obviously, but we're mostly just amused by it. It's kind of entertaining to watch--not so much so on the cleaning up part. There was one morning this week where the sun was shining, the birds were chirping and I was thinking, "What a lovely morning--I can almost smell the springtime." And then I got a nice whiff of the soaking bucket full of puke clothes.
I wouldn't be so glib about it if it was more serious--it may become so in the future, but right now it's more of an annoyance than anything. If he's puking so much he stops gaining weight, then we'll have a problem.
Puke? Yes, puke. Or if you'd rather, vomit, upchuck, spit-up (HA!) wretching, cookie tossing--whatever you like. Essentially--our lives right now are centered around the fact that Isaac has some awful Reflux. He's on medication and we basically have to keep him upright 24/7 but he still pukes on us regularly. Just so you know it's not baby spit up type throwing up but exorcist shoot across the room type of stuff.
Frankly--it's awesome. It's gross obviously, but we're mostly just amused by it. It's kind of entertaining to watch--not so much so on the cleaning up part. There was one morning this week where the sun was shining, the birds were chirping and I was thinking, "What a lovely morning--I can almost smell the springtime." And then I got a nice whiff of the soaking bucket full of puke clothes.
I wouldn't be so glib about it if it was more serious--it may become so in the future, but right now it's more of an annoyance than anything. If he's puking so much he stops gaining weight, then we'll have a problem.
Sunday, May 20, 2007
Welcome Home Baby Isaac
(I've been putting together this video for a while, I just had to put in the pictures and video of our final days in the hospital and Isaac coming home. But wouldn't you know it, the day Isaac comes home, our camera breaks--taking with it all the pics and video I've been meaning to use to finish this video--erghhh. (Irony thinks it's funny--I told it to shut up. ) So--it's not the way I wanted it and as soon as we get our camera back from repair I'll put up the pictures that are stuck on there of him coming home. )
Thursday, May 10, 2007
I brought Jonah with me to the hospital and we had a great (but stressful) day. There is a playroom with all kinds of toys for Jonah to play with and so he never wanted to stay in Isaac's room. I finally convinced him that it was a good idea (I needed to pump) and so I set him up with a show and the PCA brought him a Popsicle.
I had a hard time seeing Jonah because I was pumping on the other side of the crib, and after a few minutes I couldn't hear him anymore. I assumed he was really into his show, (Backyardigans) but this is what I found when I was done pumping. (Notice the red Popsicle stain :)
Tuesday, May 08, 2007
Yay! I found a computer at the hospital. We have a laptop, but the wireless capability broke a long time ago when Jaska dropped it on the bus (not his fault).
One of my laments is that I cannot write more of the day to day happenings of our lives in the hospital. By the time I have time to sit down to write, I only have the time and energy for the biggest most pressing things--like pictures :) (I promise--soon. He is the cutest thing ever and such a big boy now).
I just finished feeding him. He's been having all kinds of issues with feeding lately. He's got some mad reflux which is fun if you're partial to kid vomit all over you (and the screaming is fun too). Yummy. He's also super gassy--which for those with babies, you know how unhappy everyone is when that happens. We (in otherwords--me) are in the process of trying to figure out what is causing it. As long as Isaac is gaining weight, the docs don't seem all that concerned as to whether he is super fussy or screaming or won't eat well. It's very frustrating and just makes me want out of here even more so I can figure it out.
Despite his eating issues, Isaac has been gaining weight the last couple of days. The plan as of now is to give him until Thursday. If he's still gaining weight then he'll be taken off the O2 for a few days. If he does well and still gains weight then he can go home without the O2. Otherwise, he'll go home with it. Either way, it looks like Sunday or Monday is the day. That's of course assuming no other issues pop up. I'm not holding my breath (ha. ha.)
The only things I can imagine would postpone him from going home is if he needs hernia surgery, or if he has some sort of G.I. problem that is causing his discomfort beyond gas.
We'll keep ya'll posted.
One of my laments is that I cannot write more of the day to day happenings of our lives in the hospital. By the time I have time to sit down to write, I only have the time and energy for the biggest most pressing things--like pictures :) (I promise--soon. He is the cutest thing ever and such a big boy now).
I just finished feeding him. He's been having all kinds of issues with feeding lately. He's got some mad reflux which is fun if you're partial to kid vomit all over you (and the screaming is fun too). Yummy. He's also super gassy--which for those with babies, you know how unhappy everyone is when that happens. We (in otherwords--me) are in the process of trying to figure out what is causing it. As long as Isaac is gaining weight, the docs don't seem all that concerned as to whether he is super fussy or screaming or won't eat well. It's very frustrating and just makes me want out of here even more so I can figure it out.
Despite his eating issues, Isaac has been gaining weight the last couple of days. The plan as of now is to give him until Thursday. If he's still gaining weight then he'll be taken off the O2 for a few days. If he does well and still gains weight then he can go home without the O2. Otherwise, he'll go home with it. Either way, it looks like Sunday or Monday is the day. That's of course assuming no other issues pop up. I'm not holding my breath (ha. ha.)
The only things I can imagine would postpone him from going home is if he needs hernia surgery, or if he has some sort of G.I. problem that is causing his discomfort beyond gas.
We'll keep ya'll posted.
Monday, May 07, 2007
Sorry to all who've wanted updates--to say we are exhausted doesn't even begin to cover it.
They moved Isaac over to the Child Breathing Program on Wednesday night. Jaska and I have been trading off staying at the hospital each night since. I'll stay during the day, and then one of us will stay the night.
The new floor of the hospital that he is on is very different from the NICU. For one, Isaac has his own room--nothing fancy, it's just a hospital room, but it's still a room. Also, no one knows Isaac and his quirks and disposition, so Jaska and I really have to take the lead in his care. I have to make sure the nurses do things a certain way, at certain times, etc. I tell them how much he eats, etc. This is really great--but also really exhausting--having to be aware like that all the time, making sure they are doing what is best for Isaac. We are also in "training" to bring him home--so we have to prove that we can care for him on our own--give him his meds, feed him around the clock, handle his O2, etc. Add to that the fact that Isaac has had a really tough time transitioning to his new home and we are so beyond spent.
Having to do the toughest/most exhausting part at the end is just torturous. Our energy levels are already at zero. The last 2-3 weeks have been without a doubt the darkest and most difficult of my life. We are trying desperately to hang on to our sanity and keep our family together. We weren't prepared for all of this--we thought he would be going home from the NICU. It's a necessary step for Isaac, but one we weren't prepared for.
Isaac has had trouble with reflux which has been acting up since his move. He refused to eat for three days--which was my favorite thing ever. Being there while he screamed and screamed for three days, knowing that for every minute he cried was expending valuable energy and basically ensuring an extended stay in the hospital sent me spiraling down into despair. We are trying desperately to get him home, but it just feels like things are stacking up against us. I have tried to remain positive throughout the last four months--for lots of reasons, but I admit it's mostly for my own sanity. This week however, I ran out of energy to fight my despair. I've been a total zombie. Every scrap of energy I have had, has gone to Isaac and Jonah--and to repeatedly trying to pull myself together to keep from losing it.
Today was the first bright day in a couple of weeks. Nothing about Isaac's status changed, but I was finally able to muster enough spiritual energy to see my blessings and be grateful for what I have been given and to just enjoy the time I had with my boys.
The plan for Isaac was originally to send him home at the end of this week. He passed (barely) both of his stress tests that measure how he does without O2. The plan was that if he passed, he would be taken off the O2 for 3 days. If he continued to grow, he could go home.
Because he just barely passed his stress tests and because he has been losing weight--his discharge has been pushed back a bit.
Isaac finally started eating well today, so I'm hoping things in that department are on the up. If he gains over the next day or two the MD will probably take him off the O2 and see how he does. The MD would rather send him home on the O2. We're fine with that, but since he is so close to not needing it, we want to give him a fighting chance to come off of it before he comes home. She seems pretty flexible, so I'm sure we can come up with a good plan for Isaac.
I am aware that Isaac could come home next week, but I've grown a bit cynical. I'm in this, "I'll believe it when I see it" mode. It's just too hard to hope for it and plan for it, only to have it changed again and again. I'm just going to stop thinking about it and try to get through today.
They moved Isaac over to the Child Breathing Program on Wednesday night. Jaska and I have been trading off staying at the hospital each night since. I'll stay during the day, and then one of us will stay the night.
The new floor of the hospital that he is on is very different from the NICU. For one, Isaac has his own room--nothing fancy, it's just a hospital room, but it's still a room. Also, no one knows Isaac and his quirks and disposition, so Jaska and I really have to take the lead in his care. I have to make sure the nurses do things a certain way, at certain times, etc. I tell them how much he eats, etc. This is really great--but also really exhausting--having to be aware like that all the time, making sure they are doing what is best for Isaac. We are also in "training" to bring him home--so we have to prove that we can care for him on our own--give him his meds, feed him around the clock, handle his O2, etc. Add to that the fact that Isaac has had a really tough time transitioning to his new home and we are so beyond spent.
Having to do the toughest/most exhausting part at the end is just torturous. Our energy levels are already at zero. The last 2-3 weeks have been without a doubt the darkest and most difficult of my life. We are trying desperately to hang on to our sanity and keep our family together. We weren't prepared for all of this--we thought he would be going home from the NICU. It's a necessary step for Isaac, but one we weren't prepared for.
Isaac has had trouble with reflux which has been acting up since his move. He refused to eat for three days--which was my favorite thing ever. Being there while he screamed and screamed for three days, knowing that for every minute he cried was expending valuable energy and basically ensuring an extended stay in the hospital sent me spiraling down into despair. We are trying desperately to get him home, but it just feels like things are stacking up against us. I have tried to remain positive throughout the last four months--for lots of reasons, but I admit it's mostly for my own sanity. This week however, I ran out of energy to fight my despair. I've been a total zombie. Every scrap of energy I have had, has gone to Isaac and Jonah--and to repeatedly trying to pull myself together to keep from losing it.
Today was the first bright day in a couple of weeks. Nothing about Isaac's status changed, but I was finally able to muster enough spiritual energy to see my blessings and be grateful for what I have been given and to just enjoy the time I had with my boys.
The plan for Isaac was originally to send him home at the end of this week. He passed (barely) both of his stress tests that measure how he does without O2. The plan was that if he passed, he would be taken off the O2 for 3 days. If he continued to grow, he could go home.
Because he just barely passed his stress tests and because he has been losing weight--his discharge has been pushed back a bit.
Isaac finally started eating well today, so I'm hoping things in that department are on the up. If he gains over the next day or two the MD will probably take him off the O2 and see how he does. The MD would rather send him home on the O2. We're fine with that, but since he is so close to not needing it, we want to give him a fighting chance to come off of it before he comes home. She seems pretty flexible, so I'm sure we can come up with a good plan for Isaac.
I am aware that Isaac could come home next week, but I've grown a bit cynical. I'm in this, "I'll believe it when I see it" mode. It's just too hard to hope for it and plan for it, only to have it changed again and again. I'm just going to stop thinking about it and try to get through today.
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