Believe it or not the week Grace was in the NICU I actually had some thoughts other than "breathe in/breathe out", "chew, chew, swallow", and "left then right then left...". Some were profound, others not so much but I thought I'd share nonetheless.
-- there is nothing that makes a person feel so insignificant as a life-changing event. Think about it: our liminal life moments are only liminal for us, and perhaps our loved ones. When we turn 16 and are able to drive, how many of us returned to school only to realize that other than our small group of friends the hundreds of other people filling the hallways couldn't have cared less? Or on our wedding days, walking into the honeymoon destination only to realize that other than the people who are paid to pretend like they care, the majority of those around are oblivious and some prefer it that way? The same holds true with the birth of a baby -- our lives changed forever with the birth of each baby and yet when we were discharged we quickly found out that bank teller, the food service worker, the retailer didn't know or much cared that we had been changed so dramatically. It's a rather humbling experience really...
-- It never fails when I enter Babies 'R Us in need of one tiny thing (tiny but ridiculously necessary in my initial efforts to coax a preemie to nurse) I find myself stuck in the check-out line behind a soon-to-be-new-mommy with a CART LOAD of baby paraphernalia. Even more a guarantee, the mommy will inevitably be on a budget but will have failed to take note of the cost of ANYTHING as she threw it in her cart. So I (and the line of 17384 people behind me) have to wait as each item is scanned and then debated with an uninterested dad-to-be. Meanwhile, I secretly worry that if my toe-tapping gets any more vigorous I might strike oil in the ground beneath me. (Okay, so this only happened twice...but seriously -- twice in 9 days is a bit much).
-- Most people (me included) are basically incapable of handling emotion seen in others that varies from the happy spectrum. Consider our socially acceptable answers to introductory questions like "How are you?" and "what have you been up to?" We generally respond with "Fine", "Okay" "doing well" and "not much". I know the week Grace was in the NICU I responded EXACTLY the same way. Why? Because I knew that to respond "I'm miserable and sad, worried about my daughter" would make most people uncomfortable. I blame this on our cultural climate -- our western-ness if you will. We aren't comfortable sharing those emotions and are consequently are uncomfortable when confronted by those emotions in others.
-- La Madeline has some of the yummiest breakfast around. I would know -- I ate it several times in the past week since it's across the street from the hospital.
Wednesday, November 11, 2009
Sunday, November 8, 2009
Complete
Our family is now complete! Our Gracie Girl is home and learning to live and love her older brothers! I'll post a pic or two later -- for now I'm gonna sit and stare at her and maybe take a nap now all my babies are safe and sound at home.
Thursday, November 5, 2009
Grace Updates 2
2nd volume of Grace updates -- when I started the first post I didn't anticipate having to update for such a long period of time. I grew tired of scrolling to the end of the other post, decided it was getting too long and started another.
* Thursday, 6PM -- Luke and I had a rare treat -- Kristen stayed with the boys and we were able to go to the NICU together for the first time since Monday. Grace looked great. She has excellent respiration rates. She had been sleeping since the last time I left -- her 3pm feed was a gavage so she didn't have to wake to eat. I bottled her at 6PM and she took her 30cc like a pro, stopping only for a burp that was anything but ladylike. Luke and I made the decision today to leave her off the breast until the hospital staff is confident in her abilities to eat (meaning we'd like to see ad lib feeds by bottle for every feed first). There is no requirement that Grace come home on the breast but she has to be able to bottle feed. Knowing how most babies react the first few times at the breast we don't want points detracted from Grace's ability to bottle feed just because she is unsure of nursing. Grace is still getting breastmilk -- she's just getting it from a bottle right now. And that's enough about boobs -- too much talking about it already! As I type this update (it's 11:34PM) Luke is en route to the hospital for Grace's midnight feeding. She should have gavaged the 9PM feed, making this one a bottle feed. After the trouble we had earlier due to this particular nurse Luke was not about to let things slide. He wants to be there to make sure Grace is given her bottle appropriately. We want to see forward progress! We are contemplating being back there for her 6AM feed. Luke being there ensures Grace will get the attention she needs/deserves and is not at the mercy of a lazy nurse. IF there is a problem with the feeding then we will know it's a true problem and NOT something else. Pray for Luke tomorrow as he meets with the doctors -- that he would be firm and articulate while not alienating Grace's caregivers, that he would communicate our desires without appearing overly-intimidating and that he would speak with a clear mind and head to hear the doctor's response. Pray for the doctor -- that she would hear our hearts even if the words are jumbled, and that she would see and understand our position, that she would take seriously our requests. Pray for Grace -- get big and GO HOME!!
* Friday, 12PM -- Luke was able to speak with the doctor regarding Grace's progress and we received good news (sort of...). The TPN was discontinued today so the IV is out. Grace is able to nipple every feed. She will start today, with the noon feeding, at 35cc. If she can take 35cc at noon and 3PM, the nurses will increase her amount to 40cc. Luke said she gobbled up the noon feeding -- which our AWESOME nurse bumped to 40cc early. Love it when the nurse is on our side! Assuming Grace tolerates her feedings today/tonight her gavage tube can be removed tomorrow. The night nurse will weigh Grace at shift change and if she has gained any weight at all the orders are written to open the isolette. Luke decided that if she hasn't gained weight we will have another conversation with the doctors because although she may not be packing on the pounds now, Grace never dropped below her birth weight. According to the NICU records she is up 4oz from last Friday's weight -- we shouldn't be worrying about her weight at this point. Once the isolette is opened we will take her carseat so she can complete her carseat challenge and hopefully she will complete her hearing screen too. There is a slim chance that Grace may come home tomorrow afternoon but we are expecting it will be Sunday before she is discharged -- it will depend on how persuasive we can be tomorrow with the doctor (and of course how Grace progresses throughout the rest of today/tonight). Overall GREAT news -- we just wish tomorrow was definitely go home day. OH well...maybe this will give us time to finish the nursery!
* Saturday, 12PM -- WOW! what a 24 hours it has been! We visited Grace last night at 6pm to feed her. She did great -- took her bottle super fast and showed progress! We went back again at midnight to find her NG tube had been removed! We weren't expecting that to happen until the next afternoon. Unfortunately we also discovered that the night nurse had given her formula. I spoke with her about this but she seemed to be disinterested in listening -- a rather lazy woman truth be told. Grace did well at her midnight feeding -- she was a little slow eating because of tummy bubbles (probably due to the sudden switch to formula). Luke and I went back to the NICU at 9AM today only to discover the night nurse gave her formula after we left too -- not sure why. I spoke with the day nurse and hopefully the situation will be resolved. I was able to nurse Grace for the first time during the 9AM feed and she did GREAT! Ate like a champ. We returned for the noon feed to find Grace in an open crib! Today she will complete her carseat challenge and her hearing screen. She is ad lib feeding now -- basically she can eat what she wants when she wants (the nurses will try to keep her to a 3 hour feed schedule as best they can and they have min/max feed amounts she has to stay within). It looks like Grace should come home tomorrow. She will have to gain weight in the next 24 hours -- even a tiny amount will work (today she gained 10 grams). If she doesn't gain weight (and assuming she doesn't lose weight) Luke and I will have to argue to get her home tomorrow. The doctor originally said Monday when I asked but Luke questioned her response and she said she would be okay with tomorrow if Grace does her part. Hopefully this is the last Grace update! Pray for Grace to gain LOTS of weight!!!
* Thursday, 6PM -- Luke and I had a rare treat -- Kristen stayed with the boys and we were able to go to the NICU together for the first time since Monday. Grace looked great. She has excellent respiration rates. She had been sleeping since the last time I left -- her 3pm feed was a gavage so she didn't have to wake to eat. I bottled her at 6PM and she took her 30cc like a pro, stopping only for a burp that was anything but ladylike. Luke and I made the decision today to leave her off the breast until the hospital staff is confident in her abilities to eat (meaning we'd like to see ad lib feeds by bottle for every feed first). There is no requirement that Grace come home on the breast but she has to be able to bottle feed. Knowing how most babies react the first few times at the breast we don't want points detracted from Grace's ability to bottle feed just because she is unsure of nursing. Grace is still getting breastmilk -- she's just getting it from a bottle right now. And that's enough about boobs -- too much talking about it already! As I type this update (it's 11:34PM) Luke is en route to the hospital for Grace's midnight feeding. She should have gavaged the 9PM feed, making this one a bottle feed. After the trouble we had earlier due to this particular nurse Luke was not about to let things slide. He wants to be there to make sure Grace is given her bottle appropriately. We want to see forward progress! We are contemplating being back there for her 6AM feed. Luke being there ensures Grace will get the attention she needs/deserves and is not at the mercy of a lazy nurse. IF there is a problem with the feeding then we will know it's a true problem and NOT something else. Pray for Luke tomorrow as he meets with the doctors -- that he would be firm and articulate while not alienating Grace's caregivers, that he would communicate our desires without appearing overly-intimidating and that he would speak with a clear mind and head to hear the doctor's response. Pray for the doctor -- that she would hear our hearts even if the words are jumbled, and that she would see and understand our position, that she would take seriously our requests. Pray for Grace -- get big and GO HOME!!
* Friday, 12PM -- Luke was able to speak with the doctor regarding Grace's progress and we received good news (sort of...). The TPN was discontinued today so the IV is out. Grace is able to nipple every feed. She will start today, with the noon feeding, at 35cc. If she can take 35cc at noon and 3PM, the nurses will increase her amount to 40cc. Luke said she gobbled up the noon feeding -- which our AWESOME nurse bumped to 40cc early. Love it when the nurse is on our side! Assuming Grace tolerates her feedings today/tonight her gavage tube can be removed tomorrow. The night nurse will weigh Grace at shift change and if she has gained any weight at all the orders are written to open the isolette. Luke decided that if she hasn't gained weight we will have another conversation with the doctors because although she may not be packing on the pounds now, Grace never dropped below her birth weight. According to the NICU records she is up 4oz from last Friday's weight -- we shouldn't be worrying about her weight at this point. Once the isolette is opened we will take her carseat so she can complete her carseat challenge and hopefully she will complete her hearing screen too. There is a slim chance that Grace may come home tomorrow afternoon but we are expecting it will be Sunday before she is discharged -- it will depend on how persuasive we can be tomorrow with the doctor (and of course how Grace progresses throughout the rest of today/tonight). Overall GREAT news -- we just wish tomorrow was definitely go home day. OH well...maybe this will give us time to finish the nursery!
* Saturday, 12PM -- WOW! what a 24 hours it has been! We visited Grace last night at 6pm to feed her. She did great -- took her bottle super fast and showed progress! We went back again at midnight to find her NG tube had been removed! We weren't expecting that to happen until the next afternoon. Unfortunately we also discovered that the night nurse had given her formula. I spoke with her about this but she seemed to be disinterested in listening -- a rather lazy woman truth be told. Grace did well at her midnight feeding -- she was a little slow eating because of tummy bubbles (probably due to the sudden switch to formula). Luke and I went back to the NICU at 9AM today only to discover the night nurse gave her formula after we left too -- not sure why. I spoke with the day nurse and hopefully the situation will be resolved. I was able to nurse Grace for the first time during the 9AM feed and she did GREAT! Ate like a champ. We returned for the noon feed to find Grace in an open crib! Today she will complete her carseat challenge and her hearing screen. She is ad lib feeding now -- basically she can eat what she wants when she wants (the nurses will try to keep her to a 3 hour feed schedule as best they can and they have min/max feed amounts she has to stay within). It looks like Grace should come home tomorrow. She will have to gain weight in the next 24 hours -- even a tiny amount will work (today she gained 10 grams). If she doesn't gain weight (and assuming she doesn't lose weight) Luke and I will have to argue to get her home tomorrow. The doctor originally said Monday when I asked but Luke questioned her response and she said she would be okay with tomorrow if Grace does her part. Hopefully this is the last Grace update! Pray for Grace to gain LOTS of weight!!!
Wednesday, November 4, 2009
I know I should dig deeper ...
I know I should, like she is doing, dig deeper for purposes larger than myself but all I really want to do is crawl in bed and let the next few days pass without me. Time to muster up energy, grab the bootstraps and pull hard. There are a lot of little ones depending on me today...I'll be glad when this season is over
Sunday, November 1, 2009
Grace Updates
This post will contain all Grace updates. One continuously updated post seemed like a better idea than several posts.
* Saturday 4AM -- Grace moved from regular nursery to Level 2 NICU. She is tachypnic and having desats. She is placed under oxygen hood with 30 % O2.
* Throughout Saturday Grace continues to present signs of tachypnea and has to have her oxygen level raised to 50% under the hood. Saturday evening (9PM) the decision is made to move her to nasal CPAP. By 11PM Grace has been weaned back to 41% O2. She seems more comfortable and her respiration rate has slowed significantly. We FINALLY see rates that are normal.
* Sunday AM, Grace has been weaned to 33% O2 on CPAP and her respiration rate at 8am vitals was 50!! She is extremely agitated and spends much of our first visit fussing (I suspect she is hungry). Nurse decides to consult doctor when she arrives about either a) feeding a small amount (5cc) or b) provide a light sedative for Grace. At this point we need to do something to calm her down because it's getting difficult to judge her ability to breathe because she is crying so loudly and so often. Nurse feels her current monitor readings aren't true indicators of Grace's ability to breathe without assistance.
* Sunday, 1PM -- Met with Dr. Barry at Grace's bedside. Decision was made to give Grace a dose of surfactant (helps to make the insides of her lungs slippery so they don't stick together). Currently Grace is on CPAP with 38% O2. She is sating at 98-100% and her resp. rate is perfectly normal. Dr. Barry also gave Grace a small dose of a mild sedative -- it has helped Grace relax enough to not fight the interventions she needs. Dr. Barry likened it to an adult taking an over-the-counter sleeping pill -- helps sleep and relaxes you but not to the point where you can't be awakened by noise and movement. When Grace's nurse returns from lunch she will take an arterial blood gas level. Assuming ABG levels are good, Dr. Barry said they would begin aggressively weaning the O2 with the hopes that Grace would be off O2 by tomorrow. At that point she can begin feedings. Dr. Barry mentioned that if things go well she may consider gavage feeds (tube feeds) in TINY amounts this evening. Overall we are pleased with the progress of Grace's care. All the docs seem to be treating her more aggressively than they did Sam. Instead of having to prove herself on the most invasive and intense equipment before being moved down (like Sam) she is having to show a rather significant inability to perform at lower levels before being moved up.
* Sunday 10PM -- Spoke with the night nurse. Grace is on 40% O2 -- she had a rough day. The goal, before weaning the oxygen level, is to calm Grace enough that she will not fight the CPAP. Dr. doesn't want any more sedation right now -- the feistiness is a good thing, in small measures. Nurse moved her IV from her left hand to her scalp because the TPN is so hard on her veins. They did decide to leave the two IV placements in so there is an option to rotate between the two without having to re-stick Grace.
* Monday, 9AM -- Grace is on 28% O2 -- WOOHOO!! Nurse told Luke Grace is behaving herself and hitting all the milestones she needs to hit to continue on with weaning the oxygen. Dr. hasn't done rounds yet so we aren't sure what the actual goals for the day are; obviously she needs to be weaned of O2 but originally the dr. mentioned the need to perhaps leave her on room air CPAP for 24 hours after weaning so she won't have to take any backward steps. We'll see. From our experience with all this before I can tell you that she will probably go from CPAP to nasal cannula before she is completely oxygen free. Then we will have to begin gavage feeds first to ensure she can tolerate those before we begin to try real feedings. Again...not sure what the doctor has in mind since I haven't talked to her today.
* Monday, 2PM -- We are absolutely walking on sunshine! While we were visiting Grace, the doctor ordered her CPAP removed and moved her to nasal cannula! THEN, instead of closing the isolette up after the oxygen change, the nurse passed her off to me (after I gave her a quick diaper change of course!). Luke and I were both able to hold her for about an hour or so. She is beautiful and much happier with the CPAP prongs out. Assuming she maintains her O2 sats at 99-100% (which she was doing consistently while we were there), the nurse has orders to wean her down to room air (21%). Once at room air she will hang out on nasal cannula until tomorrow. Grace had been given 10cc of breastmilk by gavage before we got there and did great digesting it all so she was given another 10cc before we held her. Assuming she doesn't have an issue digesting it AND that she can keep her respiration rate down the nurse has orders to begin feeding her 10cc by mouth. We are soooo excited!
* Tuesday, 8AM -- Grace is on 21% with her nasal cannula! Right now she is only sating at 93% but the nurse commented that she was beginning to calm down -- I guess the weaning made her a little cranky! If she can maintain a decent sat level and respiration rate she is set to get her first bottle at 9AM! Doctor hasn't been by yet so we aren't sure what the goals for the day are but I'll go visit later today to find out.
* Tuesday, 1PM -- Grace is still on nasal cannula, holding steady at room air. She is down to 1 liter from her previous 1.5 liters. She is still sating in the low/mid 90's. She took her first bottle at 9AM but only played with the nipple and it took her a good 30 minutes to finish her 10cc. (I keep forgetting that most people don't measure in cc -- one ounce is roughly 30cc). Her noon feed was gavage but was increased to 15cc -- she is digesting well and having no residule so she just needs to work on nipple feeds. I held her for about 30 minutes and she was content for the most part. She tried to wake up but never really opened her eyes (probably because of the bright lights!). She is beginning to turn orange from her high bili levels BUT the levels aren't high enough yet to warrant bili-therapy. She is peeing/pooping well so hopefully she can flush the bili's out of her system without the need for light therapy. If she can't, she'll have to sit under lights for a little while which will only prolong her stay. Grace has two black eyes -- it looks like she was punched in each. Not sure why but the speculation is that the bruising is from her speedy delivery.
* Tuesday, 6PM -- Luke saw Grace this evening. The biggest happening? She peed everywhere, so prolifically in fact that she had to get her entire bed changed. Other than that things stayed the same. She is still sating in the low to mid 90's, and occasionally had a low sat down to 89. Nothing terrible but certainly not numbers we need to see if we want her to come home in the next day or so. The nurse hadn't given any more bottle feeds -- not sure why but we're guessing because of low sat levels. Today has just been part of the NICU shuffle -- two steps forward and one step back. We've had lots of forward days so a day back was bound to come around. We're trying not to get too bummed but we are praying super hard for a much better night and day tomorrow.
* Wednesday, 11AM -- I just spoke with dr. via phone. Grace is officially off oxygen!!! The nasal cannula was removed about 30 minutes ago. The nurses suctioned her nose so she could breathe easier (lots of dried up goo in there!) and she is now happy as a clam! Dr. C called her a pistol -- big surprise! Grace's feedings are now up to 20cc which is about half the amount she would need to be considered an ad lib feeder -- which she has to be to go home. Dr. C removed her OG tube and placed an NG tube so if Grace has trouble with bottle and breast she can still work on digesting the larger amounts of breastmilk. Grace is border line jaundiced so she is going to have some bili-therapy today. She is going to be started on the bili-blanket so she can still be swaddled. Pray the bili-blanket works! If it doesn't she will need overhead light therapy which will mean no swaddling which will mean angry Grace which may mean bad sats. Grace is still having short bursts of tachypnea so pray that the remaining hold-ons would disappear completely. Dr. C said she could nurse from mom once a day beginning today IF she isn't tachypnic. Assuming she maintains her ability to eat, tomorrow's feedings will be increased to 30cc. Grace is doing a good job maintaining her temperature so she shouldn't have any problems in an open crib. Despite my better judgment, knowing how much the docs hate giving go-home estimates, I asked if Monday was an acceptable conservative estimate. While she hestitated, Dr. C did confirm Monday as conservatively acceptable. Now I'm praying that Grace will FLY through these last tiny baby steps, that she will CALM her respiration rate permanently, and that the doc on call in the next couple days isn't QUITE as conservative as Dr. C. I know they need the beds right now so I'm hoping the need for space will help speed decision along. Overall a GREAT report! Go GRACE Go!
* Wednesday, 3PM -- Visited Grace in the NICU. She is on a bili-blanket complete with her own pair of sunglasses! She is content to play the role of a little sun lizard! She has been considerably calmer all day now that her nasal cannula is gone. She has taken her feeds entirely by bottle, finishing her 20cc in about 2 or 3 minutes (she is given 30 minutes to try). Her nurse wouldn't let me breastfeed her (I'm not a big fan of hers if you didn't know) because she thought Grace was breathing a little fast (she wasn't but whatever). I did get to bottle feed her though. She was a champ! Tomorrow I'm going to fight a little harder on the breastfeeding part. The nurse did make the decree (see why I don't like her) that we couldn't hold her for back to back feeds because her temp this morning was a little low from us holding her yesterday (follow that logic? yeah me neither...12 hours after Luke held Grace her temp was low so it was somehow related to the holding schedule??). So Luke pushed his visit for tonight until 9. Hopefully we'll get more good news. Tomorrow we're hoping the docs either dramatically reduce her TPN/lipids or discontinue them all together. Grace's IV site won't hold much longer and no one wants to stick her again! As of right now, having seen her myself I'm guessing she may go home Saturday or Sunday...depending on how aggressively the docs let her eat. Not as soon as I'd like but oh well...at least she gets to go home!
* Thursday, 11AM -- Grace is holding steady. Unfortunately it seems her progress is being slowed by idiotic nurses. I'll explain that in a minute. First, Grace's bili levels were significantly lower today so she was able to discontinue her photo-therapy. Now she can wear some clothes and be swaddled nice and tight. Docs have discontinued her lipids and reduced her TPN. Her feeds have been increased to 30cc and she, after some pushing from mommy, is able to nipple every other feed. Here's the idiotic nurse part: yesterday Grace took several bottles back to back, finishing them in less than 3 minutes. Today the nurse (Karen, who is NOT idiotic!) tells me the orders are written that Grace can nipple once a day and breastfeed once a day. When I question this I am told that Grace just isn't showing interest in bottle feeding. The next obvious question from me was "what does Grace have to do to show she is interested?" The answer was finish her bottle in less than 25 minutes to which I responded, "so 3 minutes isn't good enough?" Karen begins to do some digging through Grace's chart and sees that in fact Grace has shown significant interest in feeding. For some reason the night nurse didn't try to nipple feed her and therefore told the day nurse and the doc that Grace wasn't interested. We bottle fed Grace at noon, she ate 30cc in less than 5 minutes. HA take that you idiotic night nurse. Luke is going at 6 for the feeding and there is a chance I may go at 9 to attempt to nurse her. Tomorrow Luke is taking some time so he can be there when the doctor is there (today was actually just the nurse practitioner) to ask some tough questions. We both think this portion of things is taking entirely too long and given the false information being passed along by nurses that is being used to make medical decisions it seems like it's time for dad to get some face time with the docs.
* Saturday 4AM -- Grace moved from regular nursery to Level 2 NICU. She is tachypnic and having desats. She is placed under oxygen hood with 30 % O2.
* Throughout Saturday Grace continues to present signs of tachypnea and has to have her oxygen level raised to 50% under the hood. Saturday evening (9PM) the decision is made to move her to nasal CPAP. By 11PM Grace has been weaned back to 41% O2. She seems more comfortable and her respiration rate has slowed significantly. We FINALLY see rates that are normal.
* Sunday AM, Grace has been weaned to 33% O2 on CPAP and her respiration rate at 8am vitals was 50!! She is extremely agitated and spends much of our first visit fussing (I suspect she is hungry). Nurse decides to consult doctor when she arrives about either a) feeding a small amount (5cc) or b) provide a light sedative for Grace. At this point we need to do something to calm her down because it's getting difficult to judge her ability to breathe because she is crying so loudly and so often. Nurse feels her current monitor readings aren't true indicators of Grace's ability to breathe without assistance.
* Sunday, 1PM -- Met with Dr. Barry at Grace's bedside. Decision was made to give Grace a dose of surfactant (helps to make the insides of her lungs slippery so they don't stick together). Currently Grace is on CPAP with 38% O2. She is sating at 98-100% and her resp. rate is perfectly normal. Dr. Barry also gave Grace a small dose of a mild sedative -- it has helped Grace relax enough to not fight the interventions she needs. Dr. Barry likened it to an adult taking an over-the-counter sleeping pill -- helps sleep and relaxes you but not to the point where you can't be awakened by noise and movement. When Grace's nurse returns from lunch she will take an arterial blood gas level. Assuming ABG levels are good, Dr. Barry said they would begin aggressively weaning the O2 with the hopes that Grace would be off O2 by tomorrow. At that point she can begin feedings. Dr. Barry mentioned that if things go well she may consider gavage feeds (tube feeds) in TINY amounts this evening. Overall we are pleased with the progress of Grace's care. All the docs seem to be treating her more aggressively than they did Sam. Instead of having to prove herself on the most invasive and intense equipment before being moved down (like Sam) she is having to show a rather significant inability to perform at lower levels before being moved up.
* Sunday 10PM -- Spoke with the night nurse. Grace is on 40% O2 -- she had a rough day. The goal, before weaning the oxygen level, is to calm Grace enough that she will not fight the CPAP. Dr. doesn't want any more sedation right now -- the feistiness is a good thing, in small measures. Nurse moved her IV from her left hand to her scalp because the TPN is so hard on her veins. They did decide to leave the two IV placements in so there is an option to rotate between the two without having to re-stick Grace.
* Monday, 9AM -- Grace is on 28% O2 -- WOOHOO!! Nurse told Luke Grace is behaving herself and hitting all the milestones she needs to hit to continue on with weaning the oxygen. Dr. hasn't done rounds yet so we aren't sure what the actual goals for the day are; obviously she needs to be weaned of O2 but originally the dr. mentioned the need to perhaps leave her on room air CPAP for 24 hours after weaning so she won't have to take any backward steps. We'll see. From our experience with all this before I can tell you that she will probably go from CPAP to nasal cannula before she is completely oxygen free. Then we will have to begin gavage feeds first to ensure she can tolerate those before we begin to try real feedings. Again...not sure what the doctor has in mind since I haven't talked to her today.
* Monday, 2PM -- We are absolutely walking on sunshine! While we were visiting Grace, the doctor ordered her CPAP removed and moved her to nasal cannula! THEN, instead of closing the isolette up after the oxygen change, the nurse passed her off to me (after I gave her a quick diaper change of course!). Luke and I were both able to hold her for about an hour or so. She is beautiful and much happier with the CPAP prongs out. Assuming she maintains her O2 sats at 99-100% (which she was doing consistently while we were there), the nurse has orders to wean her down to room air (21%). Once at room air she will hang out on nasal cannula until tomorrow. Grace had been given 10cc of breastmilk by gavage before we got there and did great digesting it all so she was given another 10cc before we held her. Assuming she doesn't have an issue digesting it AND that she can keep her respiration rate down the nurse has orders to begin feeding her 10cc by mouth. We are soooo excited!
* Tuesday, 8AM -- Grace is on 21% with her nasal cannula! Right now she is only sating at 93% but the nurse commented that she was beginning to calm down -- I guess the weaning made her a little cranky! If she can maintain a decent sat level and respiration rate she is set to get her first bottle at 9AM! Doctor hasn't been by yet so we aren't sure what the goals for the day are but I'll go visit later today to find out.
* Tuesday, 1PM -- Grace is still on nasal cannula, holding steady at room air. She is down to 1 liter from her previous 1.5 liters. She is still sating in the low/mid 90's. She took her first bottle at 9AM but only played with the nipple and it took her a good 30 minutes to finish her 10cc. (I keep forgetting that most people don't measure in cc -- one ounce is roughly 30cc). Her noon feed was gavage but was increased to 15cc -- she is digesting well and having no residule so she just needs to work on nipple feeds. I held her for about 30 minutes and she was content for the most part. She tried to wake up but never really opened her eyes (probably because of the bright lights!). She is beginning to turn orange from her high bili levels BUT the levels aren't high enough yet to warrant bili-therapy. She is peeing/pooping well so hopefully she can flush the bili's out of her system without the need for light therapy. If she can't, she'll have to sit under lights for a little while which will only prolong her stay. Grace has two black eyes -- it looks like she was punched in each. Not sure why but the speculation is that the bruising is from her speedy delivery.
* Tuesday, 6PM -- Luke saw Grace this evening. The biggest happening? She peed everywhere, so prolifically in fact that she had to get her entire bed changed. Other than that things stayed the same. She is still sating in the low to mid 90's, and occasionally had a low sat down to 89. Nothing terrible but certainly not numbers we need to see if we want her to come home in the next day or so. The nurse hadn't given any more bottle feeds -- not sure why but we're guessing because of low sat levels. Today has just been part of the NICU shuffle -- two steps forward and one step back. We've had lots of forward days so a day back was bound to come around. We're trying not to get too bummed but we are praying super hard for a much better night and day tomorrow.
* Wednesday, 11AM -- I just spoke with dr. via phone. Grace is officially off oxygen!!! The nasal cannula was removed about 30 minutes ago. The nurses suctioned her nose so she could breathe easier (lots of dried up goo in there!) and she is now happy as a clam! Dr. C called her a pistol -- big surprise! Grace's feedings are now up to 20cc which is about half the amount she would need to be considered an ad lib feeder -- which she has to be to go home. Dr. C removed her OG tube and placed an NG tube so if Grace has trouble with bottle and breast she can still work on digesting the larger amounts of breastmilk. Grace is border line jaundiced so she is going to have some bili-therapy today. She is going to be started on the bili-blanket so she can still be swaddled. Pray the bili-blanket works! If it doesn't she will need overhead light therapy which will mean no swaddling which will mean angry Grace which may mean bad sats. Grace is still having short bursts of tachypnea so pray that the remaining hold-ons would disappear completely. Dr. C said she could nurse from mom once a day beginning today IF she isn't tachypnic. Assuming she maintains her ability to eat, tomorrow's feedings will be increased to 30cc. Grace is doing a good job maintaining her temperature so she shouldn't have any problems in an open crib. Despite my better judgment, knowing how much the docs hate giving go-home estimates, I asked if Monday was an acceptable conservative estimate. While she hestitated, Dr. C did confirm Monday as conservatively acceptable. Now I'm praying that Grace will FLY through these last tiny baby steps, that she will CALM her respiration rate permanently, and that the doc on call in the next couple days isn't QUITE as conservative as Dr. C. I know they need the beds right now so I'm hoping the need for space will help speed decision along. Overall a GREAT report! Go GRACE Go!
* Wednesday, 3PM -- Visited Grace in the NICU. She is on a bili-blanket complete with her own pair of sunglasses! She is content to play the role of a little sun lizard! She has been considerably calmer all day now that her nasal cannula is gone. She has taken her feeds entirely by bottle, finishing her 20cc in about 2 or 3 minutes (she is given 30 minutes to try). Her nurse wouldn't let me breastfeed her (I'm not a big fan of hers if you didn't know) because she thought Grace was breathing a little fast (she wasn't but whatever). I did get to bottle feed her though. She was a champ! Tomorrow I'm going to fight a little harder on the breastfeeding part. The nurse did make the decree (see why I don't like her) that we couldn't hold her for back to back feeds because her temp this morning was a little low from us holding her yesterday (follow that logic? yeah me neither...12 hours after Luke held Grace her temp was low so it was somehow related to the holding schedule??). So Luke pushed his visit for tonight until 9. Hopefully we'll get more good news. Tomorrow we're hoping the docs either dramatically reduce her TPN/lipids or discontinue them all together. Grace's IV site won't hold much longer and no one wants to stick her again! As of right now, having seen her myself I'm guessing she may go home Saturday or Sunday...depending on how aggressively the docs let her eat. Not as soon as I'd like but oh well...at least she gets to go home!
* Thursday, 11AM -- Grace is holding steady. Unfortunately it seems her progress is being slowed by idiotic nurses. I'll explain that in a minute. First, Grace's bili levels were significantly lower today so she was able to discontinue her photo-therapy. Now she can wear some clothes and be swaddled nice and tight. Docs have discontinued her lipids and reduced her TPN. Her feeds have been increased to 30cc and she, after some pushing from mommy, is able to nipple every other feed. Here's the idiotic nurse part: yesterday Grace took several bottles back to back, finishing them in less than 3 minutes. Today the nurse (Karen, who is NOT idiotic!) tells me the orders are written that Grace can nipple once a day and breastfeed once a day. When I question this I am told that Grace just isn't showing interest in bottle feeding. The next obvious question from me was "what does Grace have to do to show she is interested?" The answer was finish her bottle in less than 25 minutes to which I responded, "so 3 minutes isn't good enough?" Karen begins to do some digging through Grace's chart and sees that in fact Grace has shown significant interest in feeding. For some reason the night nurse didn't try to nipple feed her and therefore told the day nurse and the doc that Grace wasn't interested. We bottle fed Grace at noon, she ate 30cc in less than 5 minutes. HA take that you idiotic night nurse. Luke is going at 6 for the feeding and there is a chance I may go at 9 to attempt to nurse her. Tomorrow Luke is taking some time so he can be there when the doctor is there (today was actually just the nurse practitioner) to ask some tough questions. We both think this portion of things is taking entirely too long and given the false information being passed along by nurses that is being used to make medical decisions it seems like it's time for dad to get some face time with the docs.
Saturday, October 31, 2009
Isn't she lovely!!
Grace Abigail Pearson joined our family Friday night at 9:09pm. She weighed 6lbs 2oz and was 18.75" long. Her official gestational age is 36 weeks to the day. She is beautiful!! We had our hopes that Grace would be far enough along to not need the NICU but about 4am Saturday it became clear that she needed a little extra help breathing. Currently she is in the level 2 NICU. She is doing well, breathing easier with some oxygen assistance (as of this writing, 33% 02 by nasal CPAP). She is no longer tachypnic so we are hoping she can continue to be weaned and can come off oxygen soon. I so wanted to post more traditional hospital photos, free of wires and medical devices, but it wasn't meant to be. This particular picture is from Saturday AM when Grace was under an oxygen hood -- she was moved to CPAP Saturday PM. Rest assured I'll post more -- complete with lots of big pink bows!
Wednesday, October 21, 2009
Gracie wins!!
I posted a status update on Grace about a week ago only to remove it less than 6 hours after it's penning. Why? I didn't like what I wrote -- it sounded...dumb. Turned out to be a good decision because like all things in my life the status changed the very next day. BUT after meeting with my doctor today I'm confident in relating some of the latest news.
First -- as of 9:19pm today Grace will officially win the longest gestated baby for the Pearson house! Good job little girl! Way to hang in there!
I am seeing my OB weekly now and we are having weekly biophysical profiles of the Little Miss. Last week the official weight was 5.5lbs. We didn't measure exact weight this week but there's a good chance Grace is 6 lbs today. She seems to be loving life and enjoying her swimming pool. She did finally turn head down and seems to be happy to remain that way -- either that or she ran out of room to make the large movements necessary for a flip. Last week my OB started me on blood pressure medication. There doesn't seem to be an indication that things will turn to pre-eclampsia so we are calling it gestational hypertension. The meds are working...sort of. We are working to find a balance in dosing. My body responds VERY WELL to the meds -- sometimes too well making my pressures go too low. Dr. M remarked today that the meds I'm on don't usually result in this type of control. I'm still not making many treks out and about and I'm nowhere near going back to things as usual -- gotta make sure the bp stays in control.
Here is the big news from today -- Dr. M and I set a date for Grace's arrival. Unless she decides to come on her own, Grace will get an eviction notice on Thursday, November 12th. That is one day shy of 38 weeks!! Things are seeming to move toward baby day on their own -- contractions (mild) and such are beginning but I know these could last for weeks. Dr. M will be out of town next week and the beginning of the following week but she did mention that if her associate is comfortable with it, we could strip my membranes next week. If not, we can definitely strip membranes the following week. I'm hoping that will help things along naturally without induction medication. All this means for me...I was hoping for a sooner date BUT I know that liability issues are present when voluntarily inducing before full-term. I gathered from comments made by Dr. M that she isn't sold on the fact that I will go that far. Bottom line -- we'll have to wait and see.
That's about it! Yea for Grace!!
First -- as of 9:19pm today Grace will officially win the longest gestated baby for the Pearson house! Good job little girl! Way to hang in there!
I am seeing my OB weekly now and we are having weekly biophysical profiles of the Little Miss. Last week the official weight was 5.5lbs. We didn't measure exact weight this week but there's a good chance Grace is 6 lbs today. She seems to be loving life and enjoying her swimming pool. She did finally turn head down and seems to be happy to remain that way -- either that or she ran out of room to make the large movements necessary for a flip. Last week my OB started me on blood pressure medication. There doesn't seem to be an indication that things will turn to pre-eclampsia so we are calling it gestational hypertension. The meds are working...sort of. We are working to find a balance in dosing. My body responds VERY WELL to the meds -- sometimes too well making my pressures go too low. Dr. M remarked today that the meds I'm on don't usually result in this type of control. I'm still not making many treks out and about and I'm nowhere near going back to things as usual -- gotta make sure the bp stays in control.
Here is the big news from today -- Dr. M and I set a date for Grace's arrival. Unless she decides to come on her own, Grace will get an eviction notice on Thursday, November 12th. That is one day shy of 38 weeks!! Things are seeming to move toward baby day on their own -- contractions (mild) and such are beginning but I know these could last for weeks. Dr. M will be out of town next week and the beginning of the following week but she did mention that if her associate is comfortable with it, we could strip my membranes next week. If not, we can definitely strip membranes the following week. I'm hoping that will help things along naturally without induction medication. All this means for me...I was hoping for a sooner date BUT I know that liability issues are present when voluntarily inducing before full-term. I gathered from comments made by Dr. M that she isn't sold on the fact that I will go that far. Bottom line -- we'll have to wait and see.
That's about it! Yea for Grace!!
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