Small Talk: The Prayer Closet

[lookeyloo]

I can imagine the thoughts going through your head, Wanderwoman.  But, as Micks Picks says, babies are very tough.  Lets hope this is just a mere hiccup in precious Maisie's continued journey to going home with nothing that can't be resolved with some time and maybe some therapy.

[Skittl1321]

 

Whatever happened to a woman being surprised when a man proposed? (Or vice versa in some cases.)

My now husband did pick out an engagement ring without me being there (though we had talked about what I kind of wanted, square cut...)

 

And I didn't know the exact date/time he would actually "pop the question", but I absolutely knew he intended to ask me to marry him, as it was a decision we made together.

 

For me, I had NO desired to be "surprised" by a proposal. A marriage is a partnership, and the idea that one partner "surprises" the other, tells me the partnership has not been formed.  In our marriage, important decisions are made jointly, and the decision to GET married was the most important one of all. It shouldn't just be up to one party to initiate that. The decision should be made together to begin life as 'one' instead of two.

[wanderwoman]

The sun has risen once again and after a worrisome night, Miss Maisie seems none the worse for the day before. She does have an infection, so she's got antibiotics running into her line. I'm glad we left it in place after all. The only concern is that they've looked at her ears, throat, urine, lungs, and all the normal infection areas and she looked fine. It's only her fever and that febrile seizure that say sick baby. I don't know anymore. Kids get fevers, I know. This just feels like a step back. Every time I get excited or comfortable with her progress, it turns and I feel like my enthusiasm was misplaced. There's another family in here that's doom-and-gloom and I eat with them once in awhile. They are two days from discharge and they still are the first to point out that they could be back and you ""never trust a premature child", just like our favorite litter breeder. I used to think they're negativity was misplaced. I'm starting to see that it might be a coping mechanism. If you never get excited, you're almost prepared to be disappointed. I try very hard to stay positive by thinking that these are days she'd be gestating and I get to watch it happen. Yes. It's really fucked up, because I'd rather be waddling around like a whale or posting chalkboard selfies, but that's not our reality. This delicate balance of life and death is our reality now.

In good Maisie News, her fever is persistent but so is she. Around two a.m., they came to draw labs and take vitals and the nurse was trying to operate in stealth mode. I was sleeping in my oh-so-comfortable (you should read that as sarcastic as possible because these chairs are straight of Satan's IKEA) chair and I hear the nurse clucking at Maisie because every time she she moved her foot out of the swaddle bag, Maisie yanked it back in and got Betadyne all over the swaddle bag. After she tried pinning her foot with one hand, while reaching for the syringe to draw off the blood line with the other and Maisie opened her eyes and, hand-to-God, did a pouty lip. I've never seen her do that. I didn't know that was inborn. It can't be a learned behavior. When the nurse started to change her stained swaddle bag, Maisie started fussing. Like I said a few days ago, it's like a lightbulb went on and her personality was delivered by the personality fairy at 35 weeks, 3 days.

Today's ensemble is a turquoise with tan polka dotted sweet pea gown made by DH's co-worker. We never got to do a baby shower. Not that we needed one financially (we waited until we had enough socked away to have kids), but that means we didn't go shopping either. We thought we had time. The outfits people brought are coming in handy now.

Edited March 9, 2015 by wanderwoman

[amitville]

The sun has risen once again and after a worrisome night, Miss Maisie seems none the worse for the day before. She does have an infection, so she's got antibiotics running into her line. I'm glad we left it in place after all. The only concern is that they've looked at her ears, throat, urine, lungs, and all the normal infection areas and she looked fine. It's only her fever and that febrile seizure that say sick baby. I don't know anymore. Kids get fevers, I know. This just feels like a step back. Every time I get excited or comfortable with her progress, it turns and I feel like my enthusiasm was misplaced. There's another family in here that's doom-and-gloom and I eat with them once in awhile. They are two days from discharge and they still are the first to point out that they could be back and you ""never trust a premature child", just like our favorite litter breeder. I used to think they're negativity was misplaced. I'm starting to see that it might be a coping mechanism. If you never get excited, you're almost prepared to be disappointed. I try very hard to stay positive by thinking that these are days she'd be gestating and I get to watch it happen. Yes. It's really fucked up, because I'd rather be waddling around like a whale or posting chalkboard selfies, but that's not our reality. This delicate balance of life and death is our reality now.

In good Maisie News, her fever is persistent but so is she. Around two a.m., they came to draw labs and take vitals and the nurse was trying to operate in stealth mode. I was sleeping in my oh-so-comfortable (you should read that as sarcastic as possible because these chairs are straight of Satan's IKEA) chair and I hear the nurse clucking at Maisie because every time she she moved her foot out of the swaddle bag, Maisie yanked it back in and got Betadyne all over the swaddle bag. After she tried pinning her foot with one hand, while reaching for the syringe to draw off the blood line with the other and Maisie opened her eyes and, hand-to-God, did a pouty lip. I've never seen her do that. I didn't know that was inborn. It can't be a learned behavior. When the nurse started to change her stained swaddle bag, Maisie started fussing. Like I said a few days ago, it's like a lightbulb went on and her personality was delivered by the personality fairy at 35 weeks, 3 days.

Today's ensemble is a turquoise with tan polka dotted sweet pea gown made by DH's co-worker. We never got to do a baby shower. Not that we needed one financially (we waited until we had enough socked away to have kids), but that means we didn't go shopping either. We thought we had time. The outfits peel brought are coming in handy now.

I love that our Maisie  did the pouty face she has spunk, reading about Maisie is the bright spot of my. Try to get comfortable and maybe rest in Satan Ikea chair.  Hugs  kisses  a proud member of the Maisie News Network 

Edited March 9, 2015 by amitville

[Barb23]

Boy what a mentally & physically draining night you had Wanderwoman, esp since it happened after your husband headed home. I like that she had her fingers in her mouth after her seizure &testing probably wondering what all the fuss was about. I agree with Amitville, the pouty lip shows spunk. I love reading about what she is wearing. Hopefully when Maisie comes home & things settle down, your friends & family can have a Welcome Home shower for you. You most certainly deserve one.

[GEML]

Oh, that pouty lip!! They come out knowing that!

[Lukeysboat]

Love the pouty lip! I was overjoyed to read about Maisie's boring day and glad to hear she is weathering the fever. She's blessed with a terrific mama, too!

[Wellfleet]

The sun has risen once again and after a worrisome night, Miss Maisie seems none the worse for the day before. She does have an infection, so she's got antibiotics running into her line. I'm glad we left it in place after all. The only concern is that they've looked at her ears, throat, urine, lungs, and all the normal infection areas and she looked fine. It's only her fever and that febrile seizure that say sick baby. I don't know anymore. Kids get fevers, I know. This just feels like a step back. Every time I get excited or comfortable with her progress, it turns and I feel like my enthusiasm was misplaced. There's another family in here that's doom-and-gloom and I eat with them once in awhile. They are two days from discharge and they still are the first to point out that they could be back and you ""never trust a premature child", just like our favorite litter breeder. I used to think they're negativity was misplaced. I'm starting to see that it might be a coping mechanism. If you never get excited, you're almost prepared to be disappointed. I try very hard to stay positive by thinking that these are days she'd be gestating and I get to watch it happen. Yes. It's really fucked up, because I'd rather be waddling around like a whale or posting chalkboard selfies, but that's not our reality. This delicate balance of life and death is our reality now.

In good Maisie News, her fever is persistent but so is she. Around two a.m., they came to draw labs and take vitals and the nurse was trying to operate in stealth mode. I was sleeping in my oh-so-comfortable (you should read that as sarcastic as possible because these chairs are straight of Satan's IKEA) chair and I hear the nurse clucking at Maisie because every time she she moved her foot out of the swaddle bag, Maisie yanked it back in and got Betadyne all over the swaddle bag. After she tried pinning her foot with one hand, while reaching for the syringe to draw off the blood line with the other and Maisie opened her eyes and, hand-to-God, did a pouty lip. I've never seen her do that. I didn't know that was inborn. It can't be a learned behavior. When the nurse started to change her stained swaddle bag, Maisie started fussing. Like I said a few days ago, it's like a lightbulb went on and her personality was delivered by the personality fairy at 35 weeks, 3 days.

Today's ensemble is a turquoise with tan polka dotted sweet pea gown made by DH's co-worker. We never got to do a baby shower. Not that we needed one financially (we waited until we had enough socked away to have kids), but that means we didn't go shopping either. We thought we had time. The outfits people brought are coming in handy now.

 

Pouting from a female preemie - that's awesome.  PS - wanderwoman, better start eating your Wheaties. Now. You're going to need your strength for Maisie's teen years, I fear...  LOL.

[Mrsjumbo]

I LOL'd at the pouty lip!

Get some rest for yourself, too, Mamma. Why don't they have comfy chairs? How annoying.

[wanderwoman]

The fever has left the building. :) She has been fever free since about 5am. Yay!

I want to say, before I continue, that the nurses here are simply wonderful. I've never seen anyone do less than their very best and they really do feel invested in the health of their charges. I was beyond tired last night and I started crying, big, ugly sobs out of nowhere. I just couldn't stop. There wasn't even a great reason for the tears. Mais' was sleeping comfortably. DH had called and said all was ok at home and he had made it ok. I just lost my composure and any semblance of dignity. A nurse trainee came in and asked if I needed anything and I broke into pieces. Poor girl! One of the senior nurses just pulled me into a giant hug. She didn't say anything. It was so instinctive and needed. She let me cry for a while and then told the other ladies we were taking a walk. I didn't want to leave Maisie because on of the unwritten rules DH and I have adopted is that Maisie needs a 24/7 advocate. The charge nurse came down and sat with our girl.

Our nurse took me up to this open air mezzanine where you can see the city and get some fresh air. While we were up there, she produced a box of Kleenex and told me to voice every fear I have for Maisie. She didn't interrupt and, when I was done, she pointed out how far Maisie had come and how much her odds have changed since we first got to this hospital. She addressed every one of my fears. It was very cathartic. When I got back to Maisie, Satan's IKEA chair had been replaced with a "broken" recliner from another floor. They were just finishing cleaning it up and putting warm blankets on it.

I felt so bad for putting more work on their shoulders and involving the charge nurse. But, I am so thankful for the love and empathy they provide us. This post is just to tell them thank you. I don't want to forget their kindness or let it go unnoticed when I finally get this in her baby book.

[Absolom]

It has to come out.  Don't feel bad about it.  All the stress and pressure needs to be relieved and that was actually a healthy way to do it.  I'm so happy you're at a wonderful hospital with great, caring people.  Also extremely glad to hear the fever is gone.

[Westiepeach]

Wanderwoman, I just want to hug you and take you home with me and feed you ... but just hug you. You are going through something wonderful and scary and wonderful. You have no idea how much your little family means to so many people. Many, many cyber-hugs are going out to all of you. :)

[GEML]

You poor thing! Yes, she needs a 24/ 7 advocate, but if you and your husband don't care for yourselves, you won't be that effectively. It's not about the numbers as much as it's about being there when you need to be there. So if you need to go back up on the roof, you go. Maisie obvious has a good team, and she will let you know when she must have only you. And she will continue to let you know that the rest of her life! :)

[maraleia]

After careful consideration and much discussion the mods (Rhondinella, frenchtoast and myself) have decided that this thread should revert to its former name The Prayer Closet.

Feel free to talk about Maisie here to your heart's content as well as other non-Duggar related stuff.

Thanks!

[abseedee]

I'm getting over a cold I got from Sin City and today was the first day that I haven't felt stuffed up but after reading your last post wanderwoman....well I'm all stuffed again.  But I'm not complaining!  I'm so happy that Maisie has a wonderful and caring team.  ((((HUGS))))

[Catlyn]

You poor thing! Yes, she needs a 24/ 7 advocate, but if you and your husband don't care for yourselves, you won't be that effectively. It's not about the numbers as much as it's about being there when you need to be there. So if you need to go back up on the roof, you go. Maisie obvious has a good team, and she will let you know when she must have only you. And she will continue to let you know that the rest of her life! :)

GEML is right: You and your husband, both need to take care of yourselves so you can take care of Maisie.  Thank heavens the nurse was there to see you also got what you needed. I think with everything you've been going through, you really didn't have time to have a good cry. Cyber hugs to you.

[kaleidoscope]

{{{HUGS}}} Wanderwoman.  Sending blessings and love ♥

 

[amitville]

The fever has left the building. :) She has been fever free since about 5am. Yay!

I want to say, before I continue, that the nurses here are simply wonderful. I've never seen anyone do less than their very best and they really do feel invested in the health of their charges. I was beyond tired last night and I started crying, big, ugly sobs out of nowhere. I just couldn't stop. There wasn't even a great reason for the tears. Mais' was sleeping comfortably. DH had called and said all was ok at home and he had made it ok. I just lost my composure and any semblance of dignity. A nurse trainee came in and asked if I needed anything and I broke into pieces. Poor girl! One of the senior nurses just pulled me into a giant hug. She didn't say anything. It was so instinctive and needed. She let me cry for a while and then told the other ladies we were taking a walk. I didn't want to leave Maisie because on of the unwritten rules DH and I have adopted is that Maisie needs a 24/7 advocate. The charge nurse came down and sat with our girl.

Our nurse took me up to this open air mezzanine where you can see the city and get some fresh air. While we were up there, she produced a box of Kleenex and told me to voice every fear I have for Maisie. She didn't interrupt and, when I was done, she pointed out how far Maisie had come and how much her odds have changed since we first got to this hospital. She addressed every one of my fears. It was very cathartic. When I got back to Maisie, Satan's IKEA chair had been replaced with a "broken" recliner from another floor. They were just finishing cleaning it up and putting warm blankets on it.

I felt so bad for putting more work on their shoulders and involving the charge nurse. But, I am so thankful for the love and empathy they provide us. This post is just to tell them thank you. I don't want to forget their kindness or let it go unnoticed when I finally get this in her baby book.

I am crying happy tears that every one was taking care of you, so touched they gave you a broken recliner from another floor with warm blankets.  i wish i could reach thru the screen and hug you and your husband .   

i

Edited March 11, 2015 by amitville

[Jellybeans]

Wanderwoman, maisie's pouty lips will be put to good use when she becomes a teenager and wants makeup, her driver's license, a car, boyfriend and triple pierced ears. Get ready! :-)

[msblossom]

Wanderwoman I'm not crying myself I'm excessively sweating from my eyes.

Brian, I miss your snarky, inappropriate & witty posts on the other threads, although it's been nice to see the softer side of you here. :) Come back!!

[msblossom]

I've been hanging with Brian Williams he's telling me about how he survived a visit to the Duggar compound, and how he compared that visit to the time he infiltrated the Isis compound.

Lol!! OK, well when you're done hanging with Brian Williams (I hear he's got a lot of free time on his hands these days), come baaack!

[Mrsjumbo]

Brian, I was just going to post the same thing! I didn't know Maisie was such an old (classic) name!

[Wellfleet]

Brian, I was just going to post the same thing! I didn't know Maisie was such an old (classic) name!

 

Maisie is in there with Gladys and Ethel, I believe. For anyone that interested, there's a section of the Social Security Administration website where you can see the popularity of first names, the top names of the year etc. I think some of the data there goes back over 100 years. Twas interesting, to me at least. Here's the link:

http://www.ssa.gov/oact/babynames/

[Sew Sumi]

LOL! I thought Brian was kidding, but NO! These Maisie movies are a real thing! 

 

wanderwoman, you are a far stronger person than I. I would have cracked weeks ago. As others have said, it's cathartic. I would worry if you were more like Mechelle Duggar, who never seemed to show any genuine emotion at all. She certainly kept what little emotion she had stuffed deep down, but seriously, that's not healthy.

 

Glad you got a comfy chair. Keep on fighting the good fight for our little pouty-lipped girl! (((((hugs)))))

Edited March 12, 2015 by Sew Sumi

[Micks Picks]

I have a min Australian shepherd, about 40lbs and beautiful.  He has a great personality, loves other dogs, people, going places, etc.  But tonight a small white dog, shit sue type (no I'm not trying to spell it-I can't) came into the yard and they played and then it came into the house and all was cool for quite awhile until he turned into a whining pain in the ass.  Now finally, first time ever, the aussie seems irritated.  It seems people shy.  But cray cray about my dog.  Oops here it is again, tail wagging and crying to get Mikey (that's the aussie) to play. Hope I don't have to chase him out.  Kind of nervous about letting him stay in tho.  Anybody want him?

[Catlyn]

Here is a movie that is playing now (11:36pm cst) and others through the night on Turner Classic Movies: Maisie Was a Lady. Ringside Maisie, Maisie Gets Her Man, Swing Shift Maisie, Maisie Goes to Reno, Up Goes Maisie, Undercover Maisie. There where several others before the first one listed. These are all 1940's era movies.

See all the things Maisie can be getting up to Wanderwoman when she gets older? If she turns into a showgirl that is. 

I didn't realize they were on, and I love Anne Southern! Her voice didn't sound so brassy as it did in her "Private Secretary" tv show.

[bigskygirl]

Maisie is being spunky and feisty. I like it! Do not feel bad for having a good cry. I remember having a few good crying sessions after my husband was diagnosed with Acute Renal Failure and after he got a new kidney. I even went off on my in-laws and so-called friends when they were being a major pain in the behind. Keeping your emotions inside is not good for you, your husband and for your sweet Maisie.

[Jellybeans]

bigskygirl, I am very familiar with renal issues and I am sorry. It is an ordeal... hopefully he is in better health now.

Just so ya'll know, I will probably not be commenting for a few days. Even though my daughter has been gone over 5 years, my son and I have to pick out her headstone Monday and we have to design and pick an epitaph. We are using my daughter's artwork so in essence, she is designing her own headstone with us. Not easy.

And wanderwoman, I'll probably fly by for a maisie update. :-)

[Marigold]

I'm so sorry, Jellybeans. Sending you hugs.

I read the Maisie updates and I'm so glad she is stable and making progress. Love your updates. You know you should print them and keep them forever! Big hugs to you guys.

Edited March 12, 2015 by Marigold

[amitville]

bigskygirl, I am very familiar with renal issues and I am sorry. It is an ordeal... hopefully he is in better health now.

Just so ya'll know, I will probably not be commenting for a few days. Even though my daughter has been gone over 5 years, my son and I have to pick out her headstone Monday and we have to design and pick an epitaph. We are using my daughter's artwork so in essence, she is designing her own headstone with us. Not easy.

And wanderwoman, I'll probably fly by for a maisie update. :-)

  i always look forward to reading your posts Jellybean they are kind, positive upbeat.  in the difficult days ahead remember your friends on this thread will be sending you hugs 

[carrps]

Here is a movie that is playing now (11:36pm cst) and others through the night on Turner Classic Movies: Maisie Was a Lady. Ringside Maisie, Maisie Gets Her Man, Swing Shift Maisie, Maisie Goes to Reno, Up Goes Maisie, Undercover Maisie. There where several others before the first one listed. These are all 1940's era movies.

I was going to comment on those, too! A year or so ago, they ran the same Maisie marathon on TCM. I think it's apropos for your Maisie, because Ann Sothern's Maisie is so spunky and optimistic and battles the odds -- in a humorous way, of course.

 

I love that these names popular from a century or more ago are cycling back around.

Edited March 12, 2015 by carrps

[wanderwoman]

Maisie is having a "good enough" day after another small seizure last night. The seizure was only about thirty seconds in duration and we might have missed it had we not been in the process of weighing her. Because it didn't last very long, they are dropping her into the telemetry/acute care area of the NICU (where we were before) for 24 hours of continuous EEG monitoring. She hates it. There are all of these sticky wires on her head and she looks annoyed by the whole endeavour. Of course, she hasn't had another issue since monitoring started. I asked what this monitoring could tell us and I was told that it's really hard to get accurate EEGs in infants, especially a preemie, because of the myelinization being incomplete. Guess who has been on Google for two hours trying to decipher that? They've done tests on her blood to rule out diabetes or metabolic causes. Her EEGs are within normal for her gestational age and adjusted age. The only probability that seems likely is related to that brain bleed. I'm frustrated because I'm asking what the long term prognosis is and no one seems to have clear answers. They tell me that her brain is structurally or morphologically within normal parameters except for the scar I've mentioned and there's no chemistry issues. There's no history of epilepsy in our families. How do we treat something we can't pin down? The neonatal neurologist said, "it might resolve on its own with time". I feel helpless.

In the meantime, her other systems are improving or functional. She hasn't had any breathing problems, despite seizure related breathing problems, in more than a week. She will go home on oxygen due to our home elevation during summers, but that is normal for a preemie. She's still gaining weight. Nursing is getting better but she seems to prefer the bottle. She is having zero digestion problems.

On the Duggar side of things- after everything Maisie had dealt with as a 30-31 weeker, I do not see how Josie was allowed to go home without daily visits from a physical and occupational therapist. DH and I have been told we will he doing therapy at least three times a day for the first three months, then twice a day for 3-6 months after that, with visits from licensed therapists as often ad needed until Maisie can meet 85% of adjusted age appropriate goals. I asked if people can opt out, not because I would opt out, but because we saw none of this reality on the Duggars "reality show". The social worker said some states allow you to opt out but most people wisely do not drop out because of the long term problems. There are pages of problems that can arise from improper therapy or lack of therapy.

DH and I know that our lives will be very different from now on. We've even considered a career change for DH because it means we spend 5 months a year at a higher elevation and farther from a big city. I have taken a year's sabatacle. Prematurity changes everything. Did we see that on 19 kids? It seemed like, after they went home, Josie was raised like all the other bowlers and frequently left with sisters. Where were her therapists? How did they take a world tour? Why did they? I don't get it.

[Ljohnson1987]

WanderWoman: Congrats on your beautiful baby girl. The Duggars would rather pray that the issue is resolved than treat it.  I wonder how much more like her typical peers Josie would be, if her parents had gotten her the early intervention that she needed.

[Absolom]

Each state is different in how they run early intervention.  Someone in Arkansas with a 23 weeker had to fight to get intervention services for the child.  I'm glad your state seems very pro-active.  It also varies depending on what issues the child has or doesn't have and whether the parents actually listen to medical personnel.  I'll be praying the seizures stop.  I'm sorry it's so frustrating.  Not knowing is so trying.

[Barb23]

I never realized that physical & occupational therapists were so involved in the care of preemies until OUR little Maisie girl came along. After being under the care of both at different times in my life, I know they are very dedicated medical workers. The ones who work with children, preemies on up especially so.

Jellybeans- Hugs to you & I mean full frontal hugs, no side hugs here from your cyber friends.

[Mrsjumbo]

I think Josie is getting therapies, IMHO. She has progressed quite a bit in her speech & is even initiating conversation. She is doing better than my ds 3, who is almost 9 & has been receiving ST & OT since age 2 (& he was a robust full term baby). I doubt she could have made that much progress on her own.

Jelly beans, I'll be thinking of you this week. ((Hugs))

[Sew Sumi]

Each state is different in how they run early intervention.  Someone in Arkansas with a 23 weeker had to fight to get intervention services for the child.  I'm glad your state seems very pro-active.  It also varies depending on what issues the child has or doesn't have and whether the parents actually listen to medical personnel.  I'll be praying the seizures stop.  I'm sorry it's so frustrating.  Not knowing is so trying.

That was Samuel Pope (mother Sarah). He was in the NICU concurrently with Josie, but none of Sarah's fighting seemed to rub off on the Duggars. 

 

PT/OT, etc works! Samuel was a few months younger than Josie, but when you saw them together on the show, he seemed light years ahead of her developmentally, and he had a LOT more issues than Josie to start out his life. 

 

Jellybeans: big hugs. 

Edited March 13, 2015 by Sew Sumi

[GEML]

I don't know if you were able to get a good answer about the myelinization and how it created seizures, but it means that the linings on the nerve endings haven't been fully made yet, and thus the chances of the brain "short circuiting" (ie, a seizure) are much higher during childhood than any other time in life. As the nerve endings are coated, the brain runs smoother. It's the main reason people grow out of seizures as they get older, and the reason it's difficult to track is that the brain is like a big spider web. If part of the web has been burned out, it will go to another part of the brain and use that section until the part of the brain that was short circuited has been rebuilt. If the coating on the brain is fine on the other part of the brain, it won't show up on the scan. But when the rebuilt part is later used, if it short circuits again, that is when you begin to see that this given section of the brain (whatever section that may be) might have an issue. It may coat the nerve endings in time. It may require medication to help the process along. Or it might always be an issue.

But even if it never fully resolved itself, epilepsy is not something to be fearful about. It is something that millions of people manage every day. The Chief Justice of the US Supreme Court, for instance, is epileptic. Maybe someday Maisie will hold a gavel in her hand! :)

[Wellfleet]

I'm so sorry, Jellybeans. Sending you hugs.

I read the Maisie updates and I'm so glad she is stable and making progress. Love your updates. You know you should print them and keep them forever! Big hugs to you guys.

 

A wonderful idea, Marigold! I bet Wanderwoman will just love looking over all her posts in later years - and how much fun for Maisie to share in them too.

[Absolom]

I was trying not to drag the Popes into the conversation by name.  

[msblossom]

Just so ya'll know, I will probably not be commenting for a few days. Even though my daughter has been gone over 5 years, my son and I have to pick out her headstone Monday and we have to design and pick an epitaph. We are using my daughter's artwork so in essence, she is designing her own headstone with us. Not easy.

What a meaningful way to commerate and remember your daughter. ((Hugs)) to you, Jellybean.❤️

[Wellfleet]

I never realized that physical & occupational therapists were so involved in the care of preemies until OUR little Maisie girl came along. After being under the care of both at different times in my life, I know they are very dedicated medical workers. The ones who work with children, preemies on up especially so.

Jellybeans- Hugs to you & I mean full frontal hugs, no side hugs here from your cyber friends.

 

Everything barb23 said... times ten - xoxo.

[msblossom]

A wonderful idea, Marigold! I bet Wanderwoman will just love looking over all her posts in later years - and how much fun for Maisie to share in them too.

I actually thought the same thing, and in fact, thought Wanderwoman should consider taking her posts and perhaps write a book. It would be so helpful to other mothers and families who share the same journey. Your posts are so well written with raw honesty and vulnerability.

[Sew Sumi]

I was trying not to drag the Popes into the conversation by name.  

Why not? They detailed Samuel's story on the show, and Sarah blogged extensively about Samuel's journey, including her advocacy (I was an avid reader). No reason to keep them anonymous when they have made no attempt to be private. The Popes willingly shot that "reunion" episode at the TTH. 

 

I'm not sure if she's still blogging, but she did go on to have a second premie (33 weeks, IIRC). AFAIK, both kids are doing great. :)

Edited March 13, 2015 by Sew Sumi

[Absolom]

Yes, they did all that, but she doesn't really like to be known as that family in the NICU with Josie.  I regret even referencing them now.  

[amitville]

Maisie is having a "good enough" day after another small seizure last night. The seizure was only about thirty seconds in duration and we might have missed it had we not been in the process of weighing her. Because it didn't last very long, they are dropping her into the telemetry/acute care area of the NICU (where we were before) for 24 hours of continuous EEG monitoring. She hates it. There are all of these sticky wires on her head and she looks annoyed by the whole endeavour. Of course, she hasn't had another issue since monitoring started. I asked what this monitoring could tell us and I was told that it's really hard to get accurate EEGs in infants, especially a preemie, because of the myelinization being incomplete. Guess who has been on Google for two hours trying to decipher that? They've done tests on her blood to rule out diabetes or metabolic causes. Her EEGs are within normal for her gestational age and adjusted age. The only probability that seems likely is related to that brain bleed. I'm frustrated because I'm asking what the long term prognosis is and no one seems to have clear answers. They tell me that her brain is structurally or morphologically within normal parameters except for the scar I've mentioned and there's no chemistry issues. There's no history of epilepsy in our families. How do we treat something we can't pin down? The neonatal neurologist said, "it might resolve on its own with time". I feel helpless.

In the meantime, her other systems are improving or functional. She hasn't had any breathing problems, despite seizure related breathing problems, in more than a week. She will go home on oxygen due to our home elevation during summers, but that is normal for a preemie. She's still gaining weight. Nursing is getting better but she seems to prefer the bottle. She is having zero digestion problems.

On the Duggar side of things- after everything Maisie had dealt with as a 30-31 weeker, I do not see how Josie was allowed to go home without daily visits from a physical and occupational therapist. DH and I have been told we will he doing therapy at least three times a day for the first three months, then twice a day for 3-6 months after that, with visits from licensed therapists as often ad needed until Maisie can meet 85% of adjusted age appropriate goals. I asked if people can opt out, not because I would opt out, but because we saw none of this reality on the Duggars "reality show". The social worker said some states allow you to opt out but most people wisely do not drop out because of the long term problems. There are pages of problems that can arise from improper therapy or lack of therapy.

DH and I know that our lives will be very different from now on. We've even considered a career change for DH because it means we spend 5 months a year at a higher elevation and farther from a big city. I have taken a year's sabatacle. Prematurity changes everything. Did we see that on 19 kids? It seemed like, after they went home, Josie was raised like all the other bowlers and frequently left with sisters. Where were her therapists? How did they take a world tour? Why did they? I don't get it.

wanderwomen to me you seem to be doing everything right  i  am cosigning msblossom post you should write  book/journal  to help other families.   

Edited March 13, 2015 by amitville

[Barb23]

Can I pre-order a copy?

[bigskygirl]

Today is my ride along day. I promise I will be on my best behavior and try not to leave the patrol car for donuts and potato chips if the officer tells me to stay in the vehicle. I might get a little upset if I do not get a junior police sticker.

[frenchtoast]

Soak up every minute of it, bigskygirl!

[msblossom]

Today is my ride along day. I promise I will be on my best behavior and try not to leave the patrol car for donuts and potato chips if the officer tells me to stay in the vehicle. I might get a little upset if I do not get a junior police sticker.

Have a great time, bigskygirl & come back and tell us about it! :)