I realized today that the bradies do NOT freak me out. That is, as long as Evan is still nice and pink--instead of grey or bluish--I don't overreact. He had a couple today while I was feeding/burping him and I just rubbed his back and it stopped. So maybe I am more used to it than I think.
The doctor (let's call him Dr. #3, but this one is Evan's primary doctor) said this afternoon that he will probably go home Tuesday. Then this evening it changed to Friday at the earliest. I feel like I haven't completely trusted the doctors, which is unfair. These are some of the best neonatalogists in the country, and I need to trust them. Evan is just unpredictable, and when we think he's about ready to go home, he shows us that he needs a little more time. He is 6 lbs, 2 ounces, is gaining weight, eats well, so in terms of everything he is doing great. He just needs more time to outgrow the episodes, which are probably caused in part by his reflux.
As JR says, we need to stay excited about him coming home and not get frustrated. I am feeling much better than even a couple days ago. I can't wait to hold him whenever I want! Today it broke my heart to put him back in his bassinet, when he was sleeping so peacefully against my chest (and he showed his displeasure by promptly waking up and crying). I had to leave quickly because the nurses were about to change shifts and do reports and parents aren't allowed then. Sometimes, too, Evan is crying for 5-10 minutes until a nurse has time to get his bottle. It will be nice to have more control over these things, like feedings, when he's home. Slowly I'm gaining more control and confidence, though--today I gave him his reflux medications and fortified my breastmilk. Baby steps, even for me.
Sunday, July 30, 2006
Saturday, July 29, 2006
When is he coming home?
That's a common question around the NICU. Here's the timeline that JR and I have been told--it has been crazy.
So about when will Evan come home?
Day before yesterday: around Sunday (7/30)
Yesterday morning around 9am: Doctor #1 says 7-10 days
This morning around 10am: Doctor #2 says "tomorrow" (which is Sunday, 7/30)
Today around 5:30pm: Doctor #1 says around 5 days
What will they say tomorrow? It all depends on little Evan. He's "the boss" as the nurses say.
He had another brady this afternoon, so the soonest would be 5 days from today. Doctor #2, who has a very calm nature about him, came over and told JR about the 5 days. He looked at me and said "You are SO nervous. You need to calm down." That was the first somewhat judgemental comment from him, and I thought I liked him so much. Ha ha. Again before he walked away he looked at me somewhat bewildered, moved his hands as though he was pressing down on a table and again told me to calm down. "You have to get comfortable with the bradies," he said. Sure, I thought, comfortable with my baby's heart dipping down to abnormal levels? Are you insane?! I guess I should be used to those things by now. But I guess I am just high-strung right now...quite different from my usual self. I just want Evan to be healthy--which he is. He just needs to outgrow these episodes. I just need to be patient. And calmer, maybe.
So about when will Evan come home?
Day before yesterday: around Sunday (7/30)
Yesterday morning around 9am: Doctor #1 says 7-10 days
This morning around 10am: Doctor #2 says "tomorrow" (which is Sunday, 7/30)
Today around 5:30pm: Doctor #1 says around 5 days
What will they say tomorrow? It all depends on little Evan. He's "the boss" as the nurses say.
He had another brady this afternoon, so the soonest would be 5 days from today. Doctor #2, who has a very calm nature about him, came over and told JR about the 5 days. He looked at me and said "You are SO nervous. You need to calm down." That was the first somewhat judgemental comment from him, and I thought I liked him so much. Ha ha. Again before he walked away he looked at me somewhat bewildered, moved his hands as though he was pressing down on a table and again told me to calm down. "You have to get comfortable with the bradies," he said. Sure, I thought, comfortable with my baby's heart dipping down to abnormal levels? Are you insane?! I guess I should be used to those things by now. But I guess I am just high-strung right now...quite different from my usual self. I just want Evan to be healthy--which he is. He just needs to outgrow these episodes. I just need to be patient. And calmer, maybe.
Sans Tube
Here are photos I took this morning--finally, no more feeding tube! It was actually removed 4-5 days ago, so I finally just took pictures. This first one is so funny, I think, the way he's looking right at me. Nice hole in the T-shirt, too, don't ya think?
Giant hand:
Small smile?
Giant hand:
Small smile?
Thursday, July 27, 2006
Patience
Evan will not be coming home for at least another 3 days. At this point I think it will be longer, maybe a week or so. But that's just speculation.
The past couple night he's had "bradies"--the kind of episode where the heart rate dips down low and nurses needed to stimulate him some. Not as visually scary, because he didn't turn grey, and these were during the night so I wasn't there. It might be reflux, it might be because he was taken off the reflux medication. The doctors all say they just need to wait and watch him. He needs to go 3 days without having any such episodes before going home. Since these episodes happened at night while he was sleeping, those are the type to be concerned about; he certainly cannot be at home because if he had that while we were all sleeping we wouldn't know.
Yesterday was very hard for me. Today too, I guess, but I'm a bit better. I want him home but at the same time I want him to stay at the hospital on the monitors as long as possible to make sure he's okay. It's been a month now since he's been born. It feels like an eternity to me. Sometimes I wonder how I can keep functioning... But I will do anything for my sweetheart, Evan.
Other than those episodes, he's doing well. And he is sooo adorable! He has really big, bright eyes (the nurses all comment on how big his eyes are) and chubby cheeks and when he moves his head back a bit he even has a double chin. More photos to come...
The past couple night he's had "bradies"--the kind of episode where the heart rate dips down low and nurses needed to stimulate him some. Not as visually scary, because he didn't turn grey, and these were during the night so I wasn't there. It might be reflux, it might be because he was taken off the reflux medication. The doctors all say they just need to wait and watch him. He needs to go 3 days without having any such episodes before going home. Since these episodes happened at night while he was sleeping, those are the type to be concerned about; he certainly cannot be at home because if he had that while we were all sleeping we wouldn't know.
Yesterday was very hard for me. Today too, I guess, but I'm a bit better. I want him home but at the same time I want him to stay at the hospital on the monitors as long as possible to make sure he's okay. It's been a month now since he's been born. It feels like an eternity to me. Sometimes I wonder how I can keep functioning... But I will do anything for my sweetheart, Evan.
Other than those episodes, he's doing well. And he is sooo adorable! He has really big, bright eyes (the nurses all comment on how big his eyes are) and chubby cheeks and when he moves his head back a bit he even has a double chin. More photos to come...
Monday, July 24, 2006
Getting ready
For the past few days, the nurses have been giving JR and me not-so-subtle hints about when Evan will be coming home. Like the nurses going down their special checklist and asking if we know how to do things like give him his vitamins, give him a bath, etc. Or like this morning when the nurse said we need to set up a carseat trial. I know from my readings that their policy is to do this the day before or the day of going home. I looked at her stunned. "What, you don't have one yet?!" she said. "Uh, no, I mean, yeah, we have one...It's just not installed yet..." I stuttered. "Well you better get going on that!"
Of course we have been waiting for this day to come. Of course we are thrilled and eager to get him home. But suddenly we're racing against the clock to get everything ready. With coming 7 weeks early, then the stress of him being in the NICU for nearly 4 weeks, we haven't prepared much.
Not that I'm complaining! Every time I wake up in the middle of the night to pump (oh, the joys of pumping breastmilk 8 times a day!), I am less groggy because I just think how soon I'll be waking up to my adorable Evan's cries and not the beeping of an alarm clock. And I get so happy thinking about having him next to me all the time, where I can pick him up all the time and hold him in my arms...
So far the estimate homecoming is "Thursday-ish". They can't give an exact day yet, because it all depends on Evan and how he does. So far he's doing wonderful--"nippling" (yes, that's a verb in the NICU) all his feedings and then is hungry for more. That's my little champion!
Of course we have been waiting for this day to come. Of course we are thrilled and eager to get him home. But suddenly we're racing against the clock to get everything ready. With coming 7 weeks early, then the stress of him being in the NICU for nearly 4 weeks, we haven't prepared much.
Not that I'm complaining! Every time I wake up in the middle of the night to pump (oh, the joys of pumping breastmilk 8 times a day!), I am less groggy because I just think how soon I'll be waking up to my adorable Evan's cries and not the beeping of an alarm clock. And I get so happy thinking about having him next to me all the time, where I can pick him up all the time and hold him in my arms...
So far the estimate homecoming is "Thursday-ish". They can't give an exact day yet, because it all depends on Evan and how he does. So far he's doing wonderful--"nippling" (yes, that's a verb in the NICU) all his feedings and then is hungry for more. That's my little champion!
Saturday, July 22, 2006
J'espere que ce n'est pas de famille...
Oui, c'est la chambre de David et Romain. Jean-Robert et moi, on se prepare avec Evan parce que je pense que tous les garcons sont comme ca... Je ne connais pas la vie de garcon--eh em, pardon--de mec, parce que j'ai grandi avec ma mere, ma soeur, et mes 13 cousines (et un cousin). Alors je prends des photos pour bien etudier et comprendre le comportement mysterieux des garcons. Interessant, l'odeur sous le lit...Non, vraiment, ils sentent bon. Surtout avant de sortir pour une soiree a San Francisco. Jean-Robert etait comme un pere avant le "prom", il prenait des photos de David et Romain pour l'evenement. Et ils n'ont meme pas raler. ;)
Attention les filles!
Friday, July 21, 2006
Pour Papi
Salut, Papi! Maman ecrit toujours en anglais, mais moi, je suis bilingue alors je t'ecris en francais!
Je vais tres bien (pardon, je ne mets pas les accents, mais je suis juste un bebe apres tout). Je peses 2,5 kg (ou 5 pounds 8 ounces--ils sont bizarres, ces Americans), et je manges bien. Peut-etre aujourd'hui ou demain il vont augmenter les "nipple feeds" (=sois le biberon sois le sien) a 6 fois par jour. Maintenant c'est 4 fois par jour, et les 4 autres sont par le tuyau. Parfois c'est tres fatigant de manger, et je m'endors. Mais je grossis et deviens fort. Quand je peux manger 8 fois par jours, sans le tuyau, je peux rentrer avec Maman et Papa! Enfin, je verai ma chambre, mes affaires, les jouets!
Hier j'ai fait peur a Maman parce que j'ai arrete de respirer quelques secondes. Elle a eu tres peur, mais il faut qu'elle comprenne que ca arrive, que c'est normal pour les bebes prematures. Elle a bien fait pour me "reveiller", les infermieres ont dit. Ces "episodes" sont de moins en moins frequents.
Ce matin, je pleurais parce que j'aimes bien quand Maman me tient, mais elle partait. L'infermiere m'a prit dans ces bras, et ca allait mieux. Quand Maman est revenu 30 minutes apres (avec le lait qu'elle vient de "pomper"--yummy!), elle ne pouvait pas me trouver. La femme qui repond aux telephones me tenait. Je suis tellement mignon que tout le monde veut me tenir! Aussi, je sais deja que si je pleures, quelqu'un va me chercher!
Il me tard de te voir, Papi! En Octobre je serais beaucoup plus grand, et on peut jouer ensemble. A bientot, Papi!
Je vais tres bien (pardon, je ne mets pas les accents, mais je suis juste un bebe apres tout). Je peses 2,5 kg (ou 5 pounds 8 ounces--ils sont bizarres, ces Americans), et je manges bien. Peut-etre aujourd'hui ou demain il vont augmenter les "nipple feeds" (=sois le biberon sois le sien) a 6 fois par jour. Maintenant c'est 4 fois par jour, et les 4 autres sont par le tuyau. Parfois c'est tres fatigant de manger, et je m'endors. Mais je grossis et deviens fort. Quand je peux manger 8 fois par jours, sans le tuyau, je peux rentrer avec Maman et Papa! Enfin, je verai ma chambre, mes affaires, les jouets!
Hier j'ai fait peur a Maman parce que j'ai arrete de respirer quelques secondes. Elle a eu tres peur, mais il faut qu'elle comprenne que ca arrive, que c'est normal pour les bebes prematures. Elle a bien fait pour me "reveiller", les infermieres ont dit. Ces "episodes" sont de moins en moins frequents.
Ce matin, je pleurais parce que j'aimes bien quand Maman me tient, mais elle partait. L'infermiere m'a prit dans ces bras, et ca allait mieux. Quand Maman est revenu 30 minutes apres (avec le lait qu'elle vient de "pomper"--yummy!), elle ne pouvait pas me trouver. La femme qui repond aux telephones me tenait. Je suis tellement mignon que tout le monde veut me tenir! Aussi, je sais deja que si je pleures, quelqu'un va me chercher!
Il me tard de te voir, Papi! En Octobre je serais beaucoup plus grand, et on peut jouer ensemble. A bientot, Papi!
Thursday, July 20, 2006
Rough morning
I expected this morning to be like the recent mornings: Evan to breastfeed well then fall asleep peacefully. The nurse asked me, "So is he usually kept hooked up to the machines when he eats?" I told her no, that he has been disconnected because he hasn't had any episodes while eating.
First, the lactation consultant never showed up for our 8:30am appointment. I took this calmly, thinking we'll just have to reschedule.
Then Evan breastfed for about 10 minutes and fell asleep. Usually he goes twice that long. The nurse prepared the rest of the feeding in a bottle and he gulped it eagerly after I woke him up. After a few minutes, I wanted to readjust the pillow under him, to put him more upright (helps with the reflux) so I had to pull the bottle out of his mouth. As I adjusted the pillow I watched his face. He seemed to be sleeping. Suddenly his face turned grey. I repositioned him, feeling panic coming on. He was still grey. I yelled out the nurse's name. No response. Evan's body was limp. I sat him up more, rubbing his back. I then cried out the name, this time desperate and crying: "MARTIE!!" In two seconds four nurses were with me.
"What? What?" They asked worriedly, because at this point I was bawling. "He turned grey..." I said. "No, he looks fine," the nurse said who now had Evan in her hands, burping him on my lap. "See? He's pink, he's fine..."
It turns out he had almost fully recovered by the time the nurses came. They all said it was really good I recognized his color change, that I stimulated him, that I did the right thing. I'm sure bawling hysterically is not included in doing the "right thing". As for me, it took me longer to recover. I was still crying as I held the beautifully rosy Evan in my arms. The lactation consultant was now there, and we rescheduled.
After that, time to pump! I went in the "Parents' room" specially reserved for pumping moms. Halfway through my pumping, a nurse just walked right in without knocking. She had the nerve to stand there staring at me asking when I'd be done because she wanted to eat her lunch there. I wanted to throw something heavy at her. But instead she left and I just cried some more.
After the pumping, I went into the NICU again and complained about the nurse, about all the people that just walk in on me despite the sign on the door that says "IN USE". The nurse I was talking to even led me to the staff lounge to look at photos of all the nurses, to point her out as if in a lineup. No photo of her.
Anyway, I think I want to erase this morning and start all over again. Can I just do that? It's all I can do.
First, the lactation consultant never showed up for our 8:30am appointment. I took this calmly, thinking we'll just have to reschedule.
Then Evan breastfed for about 10 minutes and fell asleep. Usually he goes twice that long. The nurse prepared the rest of the feeding in a bottle and he gulped it eagerly after I woke him up. After a few minutes, I wanted to readjust the pillow under him, to put him more upright (helps with the reflux) so I had to pull the bottle out of his mouth. As I adjusted the pillow I watched his face. He seemed to be sleeping. Suddenly his face turned grey. I repositioned him, feeling panic coming on. He was still grey. I yelled out the nurse's name. No response. Evan's body was limp. I sat him up more, rubbing his back. I then cried out the name, this time desperate and crying: "MARTIE!!" In two seconds four nurses were with me.
"What? What?" They asked worriedly, because at this point I was bawling. "He turned grey..." I said. "No, he looks fine," the nurse said who now had Evan in her hands, burping him on my lap. "See? He's pink, he's fine..."
It turns out he had almost fully recovered by the time the nurses came. They all said it was really good I recognized his color change, that I stimulated him, that I did the right thing. I'm sure bawling hysterically is not included in doing the "right thing". As for me, it took me longer to recover. I was still crying as I held the beautifully rosy Evan in my arms. The lactation consultant was now there, and we rescheduled.
After that, time to pump! I went in the "Parents' room" specially reserved for pumping moms. Halfway through my pumping, a nurse just walked right in without knocking. She had the nerve to stand there staring at me asking when I'd be done because she wanted to eat her lunch there. I wanted to throw something heavy at her. But instead she left and I just cried some more.
After the pumping, I went into the NICU again and complained about the nurse, about all the people that just walk in on me despite the sign on the door that says "IN USE". The nurse I was talking to even led me to the staff lounge to look at photos of all the nurses, to point her out as if in a lineup. No photo of her.
Anyway, I think I want to erase this morning and start all over again. Can I just do that? It's all I can do.
Tuesday, July 18, 2006
10 to 14 days
The doctor told me this morning Evan will be going home in about 10 to 14 days! In one way, it seems like an eternity (the past 3 weeks have been the longest in my life). On the other hand, it will probably fly by and we'll have him home before we know it. I asked the nurse this morning about the monitors, how it will be to not have them at home...what if he has an "episode" when we're all asleep? AAARGH! She tried to reassure me. I guess NICU parents get dependent on the monitors, and on the nurses as well. We're used to having someone else take care of him. It will be a shock, I think, when we get him home and have to do everything for him. Not that I'm complaining! I just worry about everything...
The doctor also said Evan is going "above and beyond their expectations". I was so surprised! He also said he was very "smart", learning to eat so quickly. He also explained it will take time for his liver to "heal" and work properly. I guess that's how things go; with so many medications and things poked in his little body, it takes time to recover. But he's doing so well!
They increased his "nipple feeds" (bottle or breast) to 4 times a day instead of 3, as well as increasing the amount of milk by a little. Evan showed some protest with the first larger feeding. I was holding him "skin to skin" and he had a huge spitup (despite the fact I was holding him vertically). I felt so bad for the little guy. I also got my first lesson in spitup clothing management: bring an extra shirt and bra for me at all times!
So, overall he is doing great. The other day his cord stump fell off so he got his first bath (it was during the night so we missed it :( ). Then the next morning I came in and his soft fluffy hair was sticking straight up all over his head! It was hilarious--the cutest thing ever. I will have to get a photo of it next time.
The doctor also said Evan is going "above and beyond their expectations". I was so surprised! He also said he was very "smart", learning to eat so quickly. He also explained it will take time for his liver to "heal" and work properly. I guess that's how things go; with so many medications and things poked in his little body, it takes time to recover. But he's doing so well!
They increased his "nipple feeds" (bottle or breast) to 4 times a day instead of 3, as well as increasing the amount of milk by a little. Evan showed some protest with the first larger feeding. I was holding him "skin to skin" and he had a huge spitup (despite the fact I was holding him vertically). I felt so bad for the little guy. I also got my first lesson in spitup clothing management: bring an extra shirt and bra for me at all times!
So, overall he is doing great. The other day his cord stump fell off so he got his first bath (it was during the night so we missed it :( ). Then the next morning I came in and his soft fluffy hair was sticking straight up all over his head! It was hilarious--the cutest thing ever. I will have to get a photo of it next time.
Sunday, July 16, 2006
"Two steps forward, one step back"
That's the saying a lot of nurses have for how things go at the NICU. And Evan has been no exception. I try to remember how much better he is doing overall, that he is still gaining weight, that he is beautiful, that he will be coming home soon. And I am so grateful for that.
He is spitting up again, but they are just observing him for now. The breastfeeding session did not go very well this morning, whereas yesterday morning (and evening) were wonderful. Thank God he is not having any more "episodes" lately (that's when he forgets to breathe--very common among preemies). Hopefully he will not have any more, but I always speak hesitantly, with much caution to not get my hopes up too high... So many times I burst into tears in front of a nurse, because they tell me something not so good; it's not necessarily very bad, but it's always a jolt to my sensitive system. After all, some babies just spit up. Some do a lot. Especially with that nasty liquid vitamin they give him. As long as he is gaining weight....
He is spitting up again, but they are just observing him for now. The breastfeeding session did not go very well this morning, whereas yesterday morning (and evening) were wonderful. Thank God he is not having any more "episodes" lately (that's when he forgets to breathe--very common among preemies). Hopefully he will not have any more, but I always speak hesitantly, with much caution to not get my hopes up too high... So many times I burst into tears in front of a nurse, because they tell me something not so good; it's not necessarily very bad, but it's always a jolt to my sensitive system. After all, some babies just spit up. Some do a lot. Especially with that nasty liquid vitamin they give him. As long as he is gaining weight....
Saturday, July 15, 2006
Evan
These are the most recent photos of our sweet little Evan Aurel. The one with his eyes open was taken just yesterday (7/14). It seems he looks a lot like me when I was a baby... (shh! don't tell JR!)He's doing much better. After a few days of spitting up, it got quite bad so the doctor made some changes: a weaker fortifier, a formula with less calories (he gets formula in addition to my milk), and a special pump to do the tube feeding at a slower rate.
There have been so many changes in the past 2 weeks... The point is he is doing well now. He even got some milk from me from breastfeeding for the first time yesterday morning! He can breastfeed two times a day, since it's a lot of work for such a little guy. But this morning was even much better; he's a fast learner.
Thank you to everyone for your positive thoughts and prayers. Evan is looking forward to meeting you all someday!
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