(September 21, 2004)
Grace Vera Retzlaff Came Early!! - September 8, 2004
(December 29, 2005)
Greetings from HOME!
I thought time was getting away from me while Grace was in the NICU, but the clock at home spins even faster!
We are all adjusting to life at home with a "newborn". We've become accustomed to the oxygen and the monitor - and the challenges of Grace always being "tethered" to something. The first monitor was awful and was mercifully replaced with a much better model (before Chris could go out and run over the first one with a Semi). And with the new model came probes that actually fit around Grace's foot, so the probe can read her blood saturation and pulse rate accurately. The current monitor finally allowed Grace and us some sleep.
Most of our sleep deprivation now is just that due to a typical newborn. She still needs to eat every 3 hours per doctor's orders and her tummy's orders. And sometimes she just wants to be held to settle down. Not too hard a task for us, but very limiting since you really can't go far with her in hand unless you want to wheel the oxygen tank around.
She's probably over 9 pounds now (was 8 lbs, 14 oz on Thursday) and about 19 3/4 " long. Everything seems to be going pretty well for her. Her initial screenings by various disciplines seem to show good progress for her.
Well, that's it for now - guess who's hungry again?!
Just a quick note to celebrate:
As of 7:30 pm Monday evening, Gracie is home! We're all adjusting to the oxygen and the monitor (as well as having a baby in the house again). Grace was a little stressed when she first got home, but seems to be adjusting pretty well. Mom & Dad, on the other hand, ..... it's taking us a little longer to be convinced that we're ready for this.
Thank you again for all you prayers and well wishes. If you have time to keep them coming for Grace, we'd appreciate them.
Well, baby Grace did it again -- another goal achieved: an eight pound baby girl on her due date (Jan 1st) -- just what we ordered!
And, once again, Gracie demonstrates her will to move ahead and not look back. This past Thursday night, the nurses took out her feeding tube (under pretense of giving her a bath) and it hasn't gone back in since. Yes, she's taking all her milk orally these days! She may not be setting any speed records, but she is able to successfully "eat". (And according to those adults we know who have had to learn to swallow all over again, this ability to suck,swallow, and breathe is no easy task.)
If she was in the homestretch before, she's in the final 100M now. Barring any unforeseen setback, she should come home this week!!!!!!!! We just have to finish our homework (CPR class, special needs baby training, etc) and she has to finish her homework (car seat "test", final health screenings, and other discharge details). We all have our checklists to accomplish and logistics of home oxygen to work out. Grace will be coming home on oxygen and a pulse-oximeter monitor. (The "pulse-ox" is what tells us how well her blood saturation is doing - remember when we talk about "de-sat's" and "sat'ing well"??) She will be quite homebound and be limited in the number of visitors for a while. These are limits we will gladly impose for the opportunity to have our whole family in one home.
Our emotions here are quite the gamut. It's a bit like a rollercoaster ride: thrilled and elated followed by a quick descent to scared and overwhelmed; then take the straightaway through some sadness and then climb back up to relief and anticipation. Obviously, we want her home where we can hold her and shower her with love and affection. Then we worry about whether we can handle the special day to day needs of our little girl.
I also find the thought of leaving the little "cocoon" that is the NICU a bit scary and most certainly a bit lonely. The nurses and doctors there are quite possibly the closest things to angels here on earth. They are a wonderful mix of professional medical care providers, teachers, therapists and support facilitators. They have allowed my tears, listened to my fears, freely dosed out hugs, shared laughter when needed, and always taken my hand and led me through the labryinth of Grace's care and development. For over 16 weeks, they have been my private support team in the special little NICU world. I know Grace and I will both miss them greatly. It is a whole new world we're stepping into.
While I'm on my sappy speeches, I believe I will miss my email time. While I know that these emails go to so many, I often feel as though I'm writing them to a private diary. It's become quite therapeutic to write these updates. I thank you all for allowing me to send them to you -- it's a new twist on a "support group" -- it's a private support group where I get to do all the talking! These messages have allowed me to 'process' the information about Grace and her development. In writing about her, I usually found more questions and often more answers. And, once again, this little premature baby girl helped carry me through the tough days -- everyone's desire to know more about Grace and support her ending up supporting me. That is just one of the reasons why we call her The Amazing Grace.
Well, enough of that. The next email you receive from us should be short and sweet - telling you of Grace's homecoming.
Again, we cannot thank everyone enough. From babysitting to housecleaning to food, and not least of all, prayers and positive energies, you have all been important to Grace's success. We look forward to Grace's continued progress and will let you know when she's well enough to celebrate with all of you.
More Merry Christmas shots of Grace! Look what Santa left in our stocking!
More Merry Christmas shots of Grace! Look what Santa left in our stocking!
Daddy got to give Grace her first "parental" bottle Wednesday night (even Mom hasn't done this yet!). She took 49cc from Daddy - which is really good! Apparently Dad has "the touch".
Grace is now 7 lbs, 14 oz and over 20" long. She is still working hard on this learning to eat thing. She still hasn't been able to even attempt "nippling" (as they call bottle-feeding) at every feeding for a full 24 hours yet. It is much like training for a marathon - she has to build up the endurance to handle eating every 3 hours. Sometimes she's still just too pooped to SS&B (suck,swallow & breathe). And right now, it's all about the SS&B skills. It's a time for patience - everything is on her schedule and no one else's.
Happy New Year!
Happy Holidays! We hope you had a wonderful Christmas and that Santa was very good to you. The boys (Nick & Ben) were very pleased that Santa brought presents for Grace too (even if a lot of them were "just clothes"). They brought a couple of presents to the NICU and opened there for Grace. Ben was a little disappointed that she didn't really play with anything, but still finds her interesting.
Grace is doing very well. She was moved to an open crib (with a window view) on Christmas Eve and is able to keep her body temperature up enough to remain there. Her first night in her new digs she hardly slept at all, but we know that's because she was waiting up for Santa. Fortunately for her, she did finally fall asleep and Santa was able to fill her stocking.
"The Amazing Grace", as we often call her, continues to impress. She continues to teach us to pay attention to the basics - life, love, and the will to survive. This week's lessons are simple:
(1) Remember to Breathe: No matter what life hands you, remember to breathe. One of the brightest spots of the last few weeks on the nasal cannula is that Gracie remembers to breathe. Even after they discontinued her morning "cup of jo'" (caffeine), she has not experienced any episodes of sleep apnea (body forgets to breathe). And y'know what? It really is a helpful lesson - on the rough days, just remember to breathe, breathe, breathe.
(2) When things get too overwhelming, swaddle yourself in a warm, soft blankie and grab a pacifier: Gracie is really starting to make progress on her oral feeding (nursing and/or bottle). They've bumped up her oxygen to help her have more energy to "eat" at more of her feedings. (Don't worry, the oxygen is no higher than what she can go home on.) However, there are still times when this suck, swallow and breathe stuff is just a bit too much for her. The professional term is "disorganized" - the nurses will say "she can't get organized", which has nothing to do with her daytimer, but an inability to figure out what to do next with this eating thing. I prefer to call it "discombobulated" (spelling?). Anyways, when she shows signs of "discombobulation", she usually likes to be swaddled in a soft blanket and given her pacifier. It looks so soothing. What a great response that would be for those days when we don't know where to start or what to do next!
Well, that's the news from the NICU. Grace is now 7lbs, 9 oz. We've asked the doctor to get her to 8 pounds by Saturday (1/1/05), which was her due date. We told her we had originally ordered a little eight pound baby girl..... She said she'd see what she could do. The doctor gave great praise today with the "I'm pleased with her progress" statement. When Dr. Seegar says that, it means a lot. It basically means we're on the "home stretch", barring any more detours. We'll even be getting our official CPR class soon (an activity that is only done once they see home in the horizon). Keep the prayers coming -- she's trying her best to come home!
Just a note to wish you a Merry Christmas from Grace and her family:
Grace has had a good week. She's now 7lbs, 6 oz and about 19" long. We think that about two of those pounds may be just in her cheeks and chins!
She is started to catch on to the nursing thing - today she took approximately 25 cc of breastmilk (30cc = 1 oz) while nursing. The bottle feeding is less consistent - one time she was able to get up to 35 cc, then the next only 5 cc. It's harder for her to learn to control the amount from the bottle, so sometimes she sucks too hard and can't handle a mouthful of milk. What she doesn't get from "oral feeds" is then given to her through her tube. For example, she is currently to receive 61 cc of breastmilk every feeding (every 3 hours), so if she takes 25cc orally, then she gets 36cc through the tube. It's a bummer that we're not closer, so she could try nursing more times each day.
She's doing well on the cannula. Her flow is down to .1L and her oxygen is at about 60%. Hopefully, her lungs will get stronger quickly as she is beginning to become annoyed with the nasal prongs....as you may recall, when Gracie doesn't like something, she just removes it. The nurses are going through a lot of tape trying to keep the nasal cannula prongs and tubing in place!
They are getting her ready for transition to a crib from her isolette. Her isolette is no longer covered, so she has to deal with the light. They have even let her have a go in the little bouncy/massage seat.
Her eyes are healing well from the surgery. The doctor is very pleased with the right eye and anticipates no further retinopathy-related problems. The left eye is still a little "hazy", but he anticipates a good recovery there too. Hopefully it's just the haziness that causes Grace to seem to favor the right eye. As the eye doc put so well, if we have trouble seeing in the eye because of the haziness, then she is having trouble seeing out as well. Hence, she can't know to use the eye until she can really see out of it.
She's still several weeks from coming home, but is progressing. Her brothers have made sure that Santa knows where she is so she doesn't get 'jipped' out of her presents. She has a stocking at the hospital, but we did tell Santa to just bring her presents to the house and we'd get them to her. It is very hard to leave her at the hospital for Christmas, but she has some very good company there. If you want to see inspiration for the miracle of Jesus' birth, visit a NICU. I'm sure these babies also have angels whispering to them "do not be afraid".
We thank you for all your support, prayers, and positive energies. We wish you a very merry Christmas!
Ho! Ho! Ho! from Grace!
Grace xmasWhat can we say ~ the kid looks good in red....
Grace has been a very good girl and we're sure she's on Santa's "Nice" List. Now, where to start on the Amazing Grace?...
The pictures give you another good look at her nasal cannula (prongs in nose and tubing) and her feeding tube (also in her nose - left nostril). She was put on the cannula Sunday, December 5th and has never looked back. Grace may take her time getting to each step of her development, but she hates to step backward. They have "weaned" her down to .5 liters of air "flow", and she remains around 48-50% oxygen. (You'll remember that her oxygen seems high because it is a mix of oxygen and 'room air'.) She is doing very well at these settings. One of her criteria before being able to go home is that she no longer need any "flow". (She can, however, go home with O2, if the need is low enough.) Weaning this last .5L will be a fairly long process we're told.
A pleasant surprise is that the therapists (speech, occupational & physical) felt Gracie could try oral feeding even with the high "flow". On Monday (12/13), they let her try a bottle. To help you understand how long of a process learning to eat will be, on her first try she only was allowed three "sucks", and that was it for the day. She did well, getting swallows off the first two and coughing out the third. (However, the reflex to cough when swallowing wrong is an important skill too.) She has a long haul ahead of her, learning to get from three sucks to two ounces per feeding. (And, no, I don't know how many sucks in a ounce!)
Today (12/14) was an exceptional day for testing Grace: she has the skill to suck, swallow and breathe at the same time!!!!!! :) Gracie & I tried the nursing thing and she took to it "like a full-termer". She stayed with it for almost 20 minutes! We're ridiculously proud parents -- wanting to announce to all that she can "suck, swallow and breathe ~ all at the same time"! I'll never take a baby's ability to eat for granted again!
Now, on the reality front, 20 minutes of nursing for Grace probably meant 5-10 cc of breastmilk. (30 CC = 1 ounce) And, it is exhausting for her. She was 'out cold' after eating, (looking a bit like us after Thanksgiving dinner). Developing the ability to take all her feedings orally (nursing and bottle) has two issues: (1) having the coordination to suck, swallow and breathe long enough to take a full feeding, and (2) having the "endurance" to repeat the process every 3 hours. This will take weeks.
So for those wondering when Gracie will be able to go home, we don't have an answer, but certainly not before January. She has several functional criteria for coming home (none of which is weight): basically, she must be able to breathe without support, take all feedings orally, and be able to tolerate room air & environment (tolerate a crib instead of an isolette). There are some other criteria, but these are the Big Three.
While there is no weight "requirement", weight and length is still a good indicator of her overall development. So, we still celebrate her growth. Today she is at 3 Kilos! 3000 grams exactly, which is about 6 lbs, 9 oz. She is 18 3/4 " long. As you can tell in the picture, she looks like a "typical" (albeit exceptionally cute) baby. Hopefully, she doesn't lose too much weight in learning this eating thing. Apparently, preemies burn a lot of calories in learning to "s,s &b" and can even burn off as many calories as they take in. (Fortunately, the doctor thinks Grace might just be gaining weight from the air!)
Sorry for the delay in the latest Gracie update. As you can tell, she has been keeping us busy! Thank you for your ongoing support!
Wow, what a wonderful week it's been. Grace is now 90 hours and counting on her nasal cannula! They have even been able to wean her air flow slightly on the cannula.
The cannula provides oxygen and air "flow", which is basically slight pressure to help the lungs stay inflated. They started her out at 1.0 Liters of "flow" and 60% oxygen, she 's now at .7 L flow and 48% O2. (For those with an excellent memory for medical details, you'll note the O2 seems much higher than the CPAP. The O2 will "seem" higher on the cannula because it's not a tight, exclusive "seal" on her nose. Since the prongs are loosely fitted in her nostrils, more O2 is "lost" and mixed with "room air" that she takes in.)
If she stays on this and gets down to about .1L flow, then they'll start considering trying some oral feeding. (VERY big deal!) Each day she stays on cannula now reduces the odds of having to return to the CPAP. (Cheer here.)
Yesterday, Grandma Retzlaff got to hold her! Gracie's finally well enough that another family member could hold her! She still probably won't tolerate getting "passed around" to different "holders", but it was nice to really show Grace off with someone else.
She now weighs in at 6 pounds, 3 ounces! Hard to believe!
We'll keep you posted!
Message YIPPEE is right! Look at Grace go!
On Sunday afternoon the nurses convinced the doctor to let Gracie try the nasal cannula. This is a huge step as the cannula is the last step before going solo!
The nasal cannula still provides oxygen and a "flow" that supports the lungs. Her oxygen is actually mixed with room air, so the prongs are not "sealed" on the nostrils.
They're going to let her stay on the nasal cannula until she tires out, then she'll probably have to go back on CPAP. If she does go back on CPAP though, they'll switch her back and forth from CPAP to cannula in six hour time frames until she builds enough "endurance" to stay on the cannula. Of course, we are talking about Gracie here - she may just decide to stay on the cannula..... (but probably not likely, according to the professional opinions).
What a wonderful St. Nick's present!!!!
MessageNow you can really get a good look at our little cherub. Check out those jowls!!
Don't panic about her left eye - that's the one that had the surgery on Thursday and it is expected to be swollen for a couple of days. The retina surgeon is confident that the surgery went very well.
The tube in her mouth is her feeding tube. You also get a really good look at her nasal CPAP. One tube is for air coming in and one is for CO2 going out. Actually, today (Saturday) her O2 level is so low they call it "room air". She's only getting as much oxygen as is in typical room air. The CPAP, however, does continue to give her lung pressure to keep the lungs inflated.
The other cords you see are just monitors - she currently has no "invasive" things (like an IV). The hat is there to keep the CPAP tubes in place.
Thanks again for your support!
This article is the second of a two-part series featuring Grace Retzlaff,
aka "Grace's Left Eye"....
At the end of last week's news release, Gracie had maneuvered her way through the detour of eye surgery for retinopathy of prematurity (ROP) in her right eye. As reported here, she took on a neonatologist, a retina specialist, and a couple of RN's in her resistance to the surgery. By the end of the day, she won the battle and returned to her nasal CPAP setting and finally was left alone. Her legend as a fighter was now well established and her care team prepared for the laser surgery on her left eye.
The big day came on Thursday, December 2. This time the doctor called in the big guns -- an anesthesiologist. While she valiantly tried to fight the anesthesia, she eventually succumbed. (Even the anesthesiologist acknowledged her fighting spirit.) With Gracie adequately sedated, the surgery went quickly and successfully. The retina surgeon was even able to check the right eye for progress from the last surgery, which was reported to be doing well.
Gracie's recovery progressed more smoothly than the previous surgery. While she was re-intubated and placed on ventilator support for the surgery and while still anesthesized, her less-traumatic surgery made for a less-traumatic recovery.
The staff began preparing for Grace to awaken from her anesthesia. And she came to in a most Grace-like fashion. Once again offended by the tube that was "snuck" back into her trachea, she immediately began her attempts to get it out. After several head thrusts and back arches, she was able to successfully cough the tube out. While the staff was tempted to re-intubate her, they bowed to her wishes and replaced her nasal CPAP. Little Gracie again showed her star status by quickly recovering to the same support needs as she had prior to the surgery. "'Amazing Grace' has taken on new meaning on the NICU", says her mother.
In an exclusive interview, her parents shared that they are thrilled with Grace's progress and look forward to some more exciting development as she is now able to put the surgery behind her and move on to getting strong enough to get off CPAP. Her next goal is to get off CPAP and on to the nasal cannula, which would still provide oxygen and a lesser amount of lung pressure support. They added, "We are saddened that our baby will lose some peripheral vision from the surgery, but are obviously amazed and thrilled that this surgery exists to prevent blindness from the retinopathy. And, of course, we are tremendously proud of our little girl and her feisty spirit. She is inspiring."
This concludes the two-part series for the NICU News. At press time, Grace was 5 pounds, 10 ounces.
Gracie takes detour; finds new route to same destination!
Grace Retzlaff, the reigning star of the preemie circuit, took a detour today from her road to unassisted breathing. As reported here in an exclusive earlier this week, Gracie (as her friends call her) hit a major preemie milestone by quitting her ventilator dependency on Wednesday morning at 10:30 a.m. CST. While she still received support through a nasal CPAP, all her breaths were truly her own. Gracie obviously enjoyed her freedom from the ET tube (formerly down her throat) and delighted in regular opportunities to take a pacifier. Her fame in the NICU grew as she showed off her ability to breathe and suck on a pacifier at the same time.
The road to success, though, can have potholes and detours (and can end up as poorly paved as Blackburn Street in Ripon)....After three days of tremendous success on the CPAP circuit, Grace's preemie world took a detour to the beginning stages of retinopathy. Retinopathy is unfortunately a common condition that can occur in a premature baby's eyes, specifically affecting the retina. In short, the blood vessels which supply the retina with oxygen sometimes don't grow as planned after a premature birth. 80% of babies with a birth weight between 500 and 750 grams develop some ROP (retinopathy of prematurity). Grace's birth weight was 650 grams, so it was predicted that ROP would probably occur.
Left undiagnosed and untreated, ROP can cause blindness by causing the retina to detach. Fortunately, one of the miracles of modern science is a laser surgery treatment which stops the progression of ROP and allows the eye to continue developing appropriately. The baby loses some peripheral vision, which may limit her earnings in professional sports or ground her from becoming a top gun fighter pilot. However, this should not limit her from learning to play the violin or developing a cure for cancer.
Grace's detour led to laser surgery today on her right eye. In typical Grace style, she made it clear to all involved that she resented the surgery and all the things that went with it. While her mother has been known to enjoy the 'happy button' that is morphine, Grace received it most ungraciously. To add insult to injury, she also had to be "re-intubated" (nasal CPAP off, tube back in) for the surgery. She displayed such an attitude to the doctors during the procedure that additional sedatives needed to be administered. Witnesses said that clearly she would only allow one eye to be done today. The care team was able to complete the procedure successfully and then return to the business of Grace's recovery.
Our star pulled off one of her best "Greta Garbo's" during recovery -- making it clear that "I vant to be left alone". "Keep the lights low, don't talk to me and certainly don't touch me!", she declared. Once she regained control of her senses (drugs wearing off), she again resumed the feistiness that has been a trademark of her inimitable personality: she wanted no more to do with that "nasty old tube in my mouth" and pulled the tube out herself. As she has demonstrated over and over again in her brief preemie career, she decides her destiny on her terms and no one else's. While the nurses would have preferred some advance warning, they quickly worked to get her favorite nasal CPAP back in place. They were quickly rewarded by a happy, contented Grace breathing on her own, with lower oxygen needs than she needed on the ventilator, and with no more de-sat episodes. By the time her mother left her side, she was back at almost the same settings as before the surgery, but clearly more exhausted from her big day. Once again, she established herself as a bonafide star in the NICU, with huge kudos from her awestruck fans. Grace found her way back on the road to her goal of breathing all on her own.
Submitted by Ruth Retzlaff, "NICU Mom Reporter"
This is Part I in a two part series - stay tuned for "Grace's Left Eye" in your Tuesday or Wednesday edition of NICU News.
At press time, Gracie weighed in at 5 pounds, 4 ounces.
Look at Grace Go!!!!!!!Exciting news! They are giving Grace her first trial on the nasal CPAP. This means she now gets her oxygen and lung support through her nasal passage, rather than that big ol' ET tube. (You'll remember that CPAP means a steady air pressure is provided to her lungs, but she gets no assist on taking breaths.) This is only a trial, but it's a really big step for her on her marathon to breathing without a machine!
We finally get to see her mouth and her chubby cheeks!
Grace is trying to break her own CPAP record (Sunday was actually 18 hours, not the 16 hrs I wrote). She was switched to the CPAP mode yesterday afternoon around 2 pm, and is still handling it this morning. The doctor wants to let her go a little further this time, even if her O2 (oxygen) needs go up and her PCO2 (pulmonary carbon monoxide) goes up. They want to see if she can recover on her own as she stays on longer.
Well, big news again yesterday (sunday). Grace went 16 hours on the CPAP setting before pooping out. It's hard work to take your own breaths!
Today is her day off. Her respiratory rate is down to 12 breaths/minute, so she's still doing mostly her own breathing. However, the vent then makes sure that 12 of her breaths every minute are nice full breaths - inhaling and exhaling. This keeps her PCO2 (carbon monoxide in her blood) within an acceptable range.
She is up to 4 lbs, 13 oz now and looking good. If her PCO2 is low enough in the morning, she'll have another run at the CPAP setting. It's a bit like training for a marathon, each time she's getting a little stronger and building more endurance. And "endurance" is the buzz word now from the doctors as she continues weaning from the vent support.
Fortunately, while she is on the CPAP setting, she is still tolerating her cares and feedings well. She has not needed an increase in her oxygen setting even. She's a star!!
This is big week for Gracie, and we would love any extra prayers and positive energies you can send her way. We so appreciate what everyone is doing for her already, she is blessed to be so loved.
Exciting news flash....
Gracie went 3 1/2 hours today on the CPAP setting (see yesterday's email description)!!! While the CPAP gives her air pressure and O2 to keep the lungs inflated, she had to take all her own breaths! She was awesome!
Her PCO2 eventually went up too high and they had to switch her back to the vent setting (although down to only 15 breaths/minute for her). We'll just have to see how she recovers to see when they'll try it again.
We're busting at the seams with pride here and hoping that she'll just keep getting stronger and able to tolerate longer and longer stretches on the CPAP. As we said earlier this week, "go Gracie go" is her theme for the week.
Greetings from our little star!
Gracie is again showing herself to be 'one tough cookie' this week. She is working so hard on this 'breathing thing' and doing a great job. Today she's down to a vent respiration rate of only 17 breaths per minute. It wasn't much more than a week ago that this number was at 35 b/min. You can tell that it's harder on her to take so many breaths on her own, and to have to take deeper breaths on her own. At 35 b/min, she had the luxury of "riding the vent" (meaning letting the vent do all the work for her), but at 17 b/min, her body has to take more breaths.
There are still several stages of lung development that need to happen before she is truly breathing on her own. Right now, she still has the breathing tube. The machine can be set for either vent settings (like she is now -- the vent helps her take breaths and helps make sure the breaths are deep enough) or CPAP (continous pulmonary air pressure -- the machine provides support through keeping a constant amount of air pushing into her lungs so the lungs don't deflate or collapse, but does not do any breathing for the patient). When she is able to be fully on the CPAP setting, then she'll be switched to the nasal CPAP (CPAP support through the little prongs in the nose). When she's ready to come off the nasal CPAP, she'll go on the nasal cannula (spelling?), which provides oxygen and slight air pressure. Then she gets weaned to just O2. Obviously, she still has a long way to go before being on her own.
Of course, Grace has been known to change her own care plan -- she could pull out her own tube at any time....
Now that you got all that, her big accomplishment on Wednesday will sound even more exciting. On Wednesday, while I was holding her, the doctor went ahead and tried the CPAP setting to see how she'd do. She went 10 minutes breathing on her own!!! She actually was still doing pretty well when the doc switched her back, but her lungs didn't sound good enough to keep the CPAP setting. (I was so proud of her -- my eyes still tear up just telling you about it!) She'll probably get another trial run on Saturday, since her respiration rate has gotten so low.
It's a strange week of emotions for me. I'm so proud of how she's doing and so excited about her progress, yet my heart breaks watching how much harder she has to work. I guess parents just never want to see their kids struggle at anything, especially functions of daily living.
Her weight is still progressing, but more slowly now. She's working harder and burning more calories, and the doctor slowed up increases on her calorie intake. She's at 4 lbs, 10 oz. Since getting her IV out, the nurses have been putting her in clothes, which really makes her look like a little girl. This also allows them to begin to turn down the temperature on her isolette, which is another step she needs to take towards being in a crib instead of an isolette.
Well, I imagine that during the next couple weeks you'll be hearing a lot from us. Grace has some big steps ahead of her.
'Go, Gracie, Go' is the theme for this week.
She is now over 4 1/2 lbs and 17" long! That's more than triple her birth weight and 5" longer. The doctor is actually "putting her on a diet" so-to-speak....she's keeping her calories in check so Grace makes 'real growth' versus just too much fat. (This girl stuff just starts so early....water retention, high-cal, lo-cal, .....) She's currently right at the 50th percentile for her weight and height on the adjusted gestational growth chart.
Her antibiotics should be finished tonight and they can finally take out her IV. The poor thing has had to have her IV re-started in a new site about 5 times. Her little veins can't handle an IV of antibiotics for very long and "blow out". But, it looks like her pneumonia is gone and her cells are testing normal.
Since getting over her pneumonia, she's been having some wonderful progress in other areas. She is now making her own red blood cells (as indicated by nice results on her hemoglobin and her reticulocytes -- new word for you medical-wannabes - means young red blood cells). This hopefully means she won't need another transfusion, since she's making her own stuff.
Her PCO2 (pulmonary carbonmonoxide, which is tested through her blood) dropped and is staying in a good range. Just like too much CO2 is bad for you externally, too much PCO2 is bad internally. As her level stays within a reasonable range, she is getting her vent support lowered. They are steadily dropping her respiration rate (breaths per minute done by the vent). As of this morning, the vent was only doing 29 breaths per minute for her and she is doing the rest (term babies usually breath 50 or so breaths per minute). (For those of you with tremendous memory, you'll remember that after her surgery, the machine was set to do 70 breaths per minute. She's been at 35 for a couple of weeks.) And, while she's working harder, her lungs are becoming more efficient and her oxygen support is down to the upper 30%. The doctor seems to think that we have a "window of opportunity" right now to do some big time weaning this week. :) Much of it will be trial and error to see what she can handle (don't worry - "errors" here are very controlled testing of her capabilities).
She's tolerating some very busy days with lots of picks and pokes a lot better than she used to. Today she even received her 2 month immunizations and was just fine. We're so proud of her!!!!!
November 11, 2004
Wow - Daddy finally got to hold Gracie again! Look how big she is now! She weighs in at 4 lbs, 1oz and 16" long! Her hair looks like it'll be light brown, but it does shine blonde highlights (I know women who'd pay good money for her hair color).
This picture also gives you a good look at her tube -- taped tightly 'cause she likes to pull on it. Also, for those with very good eyes (or good magnification on your computer), you can see her surgery scar under her left arm (just above the blanket). It's healed nicely.
Grace had to be started on an IV last night for antibiotics. She has the start of an infection, probably respiratory and probably from being intubated so long. The bad news is any infection is dangerous. The good news is that they caught it early and even with the infection, she was doing pretty well. (Implying that when that's handled, she'll even do better.) She hasn't had to have an IV since her surgery, so she has been IV-free for about 6 weeks. The only significant side effect to antibiotics comes from overuse and she is not currently in danger of that. Infections are fairly common for preemies, so "they say" Grace has been doing well not to have one for so long. Chris & I know we have become 'veterans of the NICU' as we were able to help the nurse do the IV without flinching (and without any tears from Mom). (And to think I cried the first time Nick had his heel pricked....)
So, we'll keep hoping that she can fight off this infection without having to take steps backward in her drive to wean off the vent and to keep producing her own red blood cells without another transfusion.
We'll let you know how she progresses this week. Thank you for your thoughts and prayers.
November 6, 2004
Greetings from our chubby baby girl! Grace is up to 3 lbs, 11 oz today and it shows! Her face has really "pudged up" -- so her eyes no longer look like froggy eyes (bulging). She has a nice Buddha Belly going and they even had to get her a bigger wristband this week!
She has had a pretty good week this week - they've let her pretty much stay the same on her vent support this week to let her rest up. Apparently, last week's reduction in "PIP" (this is a medical test, folks: if you remember, PIP is the amount of pressure to which the lungs are inflated by the vent) to 17 was a significant reduction in vent support. Her respiration rate was bumped up 35 breaths per minute when the PIP went down to 17. She tolerated the changes well, so she got this week off.
She seems to have had a smoother week than last, but still I was only able to hold her on Tuesday. When I hold her, I can really feel the difference in her weight and length. (She's 14 3/4 inches long last Sunday.) I used to tell everyone that her body/torso (from butt to neck) was only as long as my hand (from wrist to tip of middle finger) -- my hand's no longer long enough! (I need to add another knuckle length to reach it!)
On Tuesday, she got her first full glass of milk! ...so to speak. Her "feeds" were increased to 30 cc (of breastmilk with fortifiers) every 3 hours. 30 cc = 1 oz., so 1 oz every 3 hours means 8 oz in a 24 hour day --- see, her first full glass of milk!! (It might sound like a stretch to some of you, but work with me here - we get excited about any progress.) She's getting more than that now, but it was a fun milestone.
Thank you all again for your care and support. Gracie still has a long road ahead before she gets off the ventilator, but we pray that her lungs are growing as well as the rest of her.
Oops - time flies by again and I'm behind in letting you know about Gracie.
Today she weighs in at 3 lbs, 4 oz! She keeps growing right past the interim weight goals we set for her. Her next goal is 1500 grams, which is about 3 lbs 5 oz. I just picked the number because when she was born, it seemed that birth weight for preemies was defined as over or under 1500 grams. Granted, it's no longer a "birth weight" for her and carries no real significance for a 7 week old preemie, but it makes me feel like I can move her out of that "under 1500 grams" label. (After she blows out this goal, then we'll aim for 2 lbs over birth weight (3#, 7oz), then the big 4 lb hurdle.)
Grace had a "touchy" week last week. She started off with a great couple of days - done on O2, good blood gases, weight gain, fewer bad de-sat episodes. They lowered some numbers on her vent (for those with medical interest - her PIP - the amount of pressure to which the vent helps her inflate her lungs - is down to 18). Her vent respiration rate remains the same (30 breaths per minute) -- she adds her own breaths to increase her total breaths per minute. Anyways, she seems to be tolerating the change okay.
By Wednesday, she became a very sensitive little preemie. An increase on her "episodes" and great sensitivity to anyone messing with her. The rest of her "numbers" and other medical indicators showed that everything is fine and that there is no new condition causing the increase in de-sats. Apparently, this just happens sometimes with babies with BPD (the label for her very immature lungs).
On Saturday morning, the doctor changed her vent tube, which has seemed to help her. On little tiny babies, a little change on the placement of the tube (along with any build up on the tube) can make a big difference. It seems to have helped Grace. While she still has her "ups & downs", the depth of her downs has lessened. :)
Her personality continues to come through - she de-sats and wakes up when she's hungry (thus making sure that the nurses aren't late on her feeding); she hates having her temperature taken (thermometer under the arm) and you can guarantee a de-sat as soon as that thermometer touches; and there's no fooling her when it's time to prick her heel for blood gases -- when the warmer hits the heel, the nurses cannot distract her or try to let her forget what's coming. She also now seems to enjoy her little pacifier - especially during feeding time. It's pretty cute to see her sucking away on that pacifier, even with the vent tube in her mouth as well.
Let's hope she has a smoother, more comfortable week this week. We're thrilled that she continues to grow and is not getting any additional issues or illnesses to deal with. She regrets, I'm sure, that she can't go trick or treating, but she seems to be giving "tricks" to the nurses since she's not getting treats.
Thank you again for all your good thoughts and prayers. We're almost halfway to her "term date" and appreciate the ongoing support.
October 19, 2004
Check out her open eyes and how much bigger she is looking - up to 2 pounds, 6 oz.
And, no that's not a barrette in her hair -- it's a bandaid from a previous IV.
(Don't want to pull the tape off her hair.)
She's a cutie!
Please keep up the prayers!
Gracie is having a pretty good week again. We had wonderful news yesterday -- she had an ultrasound done on her head and it showed no signs of inflammation and/or fluid buildup. It showed basically no signs of damage or "issues" with the head. It can't show how the brain is actually developing, but at least she's not dealing with any other "medical" issues at this point. This is really good news!!
They continue the slow process of weaning her from the vent. It will be several weeks yet before she's off the vent. (If everything goes well.) It's an ongoing issue of reducing the number of respirations per minute the machine does for her and how to get her to do more of the breathing.
With that in mind, she now gets a "cup of coffee" every morning and "cocktails" during the day. They've started her on caffeine to try to "jumpstart" her respiratory system and trigger more breathing on her own. Her cocktail consists of breastmilk mixed with fortifiers such as calcium and other vitamins, as well as a dose of iron (thrown in to taste). Actually, the iron is to help her start to produce red blood cells on her own (tough thing for preemies to do). She prefers her concoction "shaken, not stirred". We're anxious to see if she continues her caffeine trend and will be the first kindergartener getting on the bus in the morning will a sippy 'cup of java'.
The goal of the fortifiers is to boost her calories while trying to control her fluid intake. She gets 18cc (cc=ml) of milk every 3 hours now. (Okay, for those with children in Everyday Mathematics....how much fluid does she get in a day (24 hrs)? ..... If 1 cc of breastmilk has 2.68 calories, how many calories a day does she get through the breastmilk? .....Sorry I can't remember the formula for how many calories she should get for her weight, but basically these are the numbers with which the docs spend a lot of time.)
We're not confident on the exact weight - she changed her isolette this week and subsequently gets weighed on a different scale. But, it looks like she's around 2 pounds, 4 1/2 ounces.
She continues to struggle with reducing her O2, but that's to be expected as they reduced some other vent numbers. Again, we are pleased that currently she is not battling any infections or other issues that would take away from her needed lung development. We ask that you continue prayers and positive energies for her as the miracle that is her life continues.
PS - I did get to help give Grace a bath on Tuesday! It's a spongebath thing, but still pretty cool to do! Her skin is finally strong enough that even I can help wash her!!!
October 9, 2004
Gracie is one month old!!
Grace had a pretty stable week. She's been able to come down a little on vent needs (respiratory rate), which is good. Her O2 needs have stayed about the same, which is probably to be expected, since she is coming down on vent support.
The week had what I now consider minor ups and downs -- another blood transfusion, a worry about an infection (seems to have resolved itself), and some mucus buildup in the right lung again (a new tube seemed to help clear this up). Her weight has stayed stable around 2 pounds or 2 pounds 1 ounce. They were trying to keep her fluid low so they would not need to use a diuretic again. Her breastmilk feedings are up to 15 cc every 3 hours (a cc is the same as a ml) and today they are adding a 'fortifier' to the breastmilk to add calories without adding fluid. The fortifier also adds calcium and additional vitamins. Hopefully she'll "tolerate" that well (tolerate = all digested, no residual in her tummy).
On the big plus side, I was able to hold her a few times this week. (Three times, to be exact.) Big sigh. So sweet and time goes so fast. What a little angel she is!
Keep up the prayers for her growth and development!
October 4, 2004
Well, Gracie made it back today safely and without incident. She was doing pretty well this afternoon, especially considering the ambulance trip.
The trick now is to get her to grow and develop quickly enough to get her weaned off the vent before too much damage is done to her lungs. She's making some progress reducing some of the vent needs, but clearly has a very long way to go.
On the good news side, she is now off her TPN (nutrition given through her PIC line) and is on breastmilk feedings only. This is supposedly much easier on her system and should help her more than the "manufactured" liquids. So, she is now down to just the vent tube and the "tummy tube" (for the milk) for invasive type of lines. The rest of her "stuff" is probes for taking readings.
If all continues well, you probably won't get so many updates this week. I'm hoping for an uneventful week for Grace with lots of rest and growth (and maybe another chance to hold her!).
Thank you all again for your prayers and positive energies.
October 3, 2004
Just a quick note to let you know that it seems Gracie has turned the corner on recovering from the surgery. Yesterday they were able to "wean" her some on her ventilator needs, which is a very good thing. It also looks like she dropped some of the excess fluid in her body too (apparently water retention for females starts at a very early age!). It looks like she's hit the 2 pound mark. :)
The plan still is to return on Monday.
October 1, 2004
Gracie's made some progress again today. Her "de-sat episodes" (times when her blood saturation takes a dive) are fewer. Her O2 needs are still high, but that seems to be expected. She still likes to lie on her tummy best, but is tolerating cares and times on her back a little more each day. They stopped her meds (antibiotics) today, which is a good thing. So now she just gets her TPN (liquid diet through the PIC line) and breastmilk (through a tube to her gut). She hasn't had any apparent pain episodes since post-surgery either - which certainly helps my comfort level too!
If all continues to go well, she'll be transferred back on Monday.
Thank you all for your prayers - Gracie needs them all.
September 30, 2004
Just a very quick update...
Grace's surgery went well. She now has her first piece of jewelry (although it's worn internally) - a titanium clip which holds her PDA closed.
She's been struggling after the surgery, as was expected. Her blood saturation has been up and down and her vent needs are high. Some scary times. It's not, however, unexpected - the doctors warned us that the worst is the recovery from the surgery -- not the surgery itself.
We'll try to keep you posted as we can - there never seems to be enough time.
Thank you all for your prayers and thoughts -- please continue to keep Grace in your prayers.
September 28, 2004
Another adorable picture of Grace. She is now able to open both eyes - the stress of the yesterday's echo-cardiagram prompted her to open both eyes.
Unfortunately, cute as she is, her PDA (the little heart valve thing) reopened last Thursday and has not shown any signs of closing. So, today she is being transferred to Meriter Hospital in Madison, where the UW specialists will work on her. She'll likely have surgery to close the duct on Wednesday, unless her condition changes and they decide to do it today. I don't know times yet, but please keep her in your prayers and positive energies. The way the doctor tells it, the surgery isn't the part that will scare us the most, it's the recovery for a few days.
September 24, 2004
We are waiting for word on another echo on Grace today. The docs are hearing a murmur, which sounds like the PDA is reopening. They're trying to keep her fluids down and will restart her on some antibiotics to make sure there's no infection. If the opening is tiny, they'll try to manage her where she is. If it's getting too big, we're probably back to the surgery thing. Poor little thing, she just keeps hanging in there. I haven't been able to hold her since Wednesday - she's been having a little rougher days. I can't wait till she's well enough to hold again! Please keep up the prayers (our Pastor tells me that begging is also a form of praying).
September 21, 2004
WOW - I got to hold Baby Grace for the first time yesterday!!!
The feeling was better than any drug ever created! (Even better than the "happy button" I had in the hospital!) Is Gracie beautiful or what?!
You lose sight of just how tiny she is until you get her out of the isolette. If I place my hand on her hinder, my fingertips go all the way to her neck. She tolerated being held quite well, so they'll let me hold her again! They'll let me hold about 1/2 hour each day if she can "tolerate" it. On the first day, she did great - her oxygen needs even dropped. Today I held her again and she was stable, but the O2 didn't drop. It is the quickest 1/2 hour of my day!
Other than that, she is doing pretty well. She is now off of all her medications, and is just receiving nutrition and breast milk. As of today (9/22), she weighs 1 lb, 11 oz. However, she was having an off day today - lots of squirming and seeming a bit "unhappy" (as the nurses will describe).
She's doing as well as she can for her age - please keep the prayers and positive energies flowing her way.
September 19, 2004
Gracie had a rough week. She is really one tough cookie (as one of the doctors even said). She was struggling quite a bit on Tuesday & Wednesday (9/14 & 9/15). Her PDA was not closing and the pulmonary hypertension in her lungs was staying high. Her oxygen needs continued to increase as she struggled with these. As of Wednesday, the doctors prepared us for the likelihood of surgery to close her PDA.
The one piece of great news for the day - her (7th day) - head scan again showed no evidence of any bleeding. The doctor says that it is unlikely that bleeding would occur after 7days.
Well, miracles can happen. Thursday was one helluva day for Grace - miracles and scares! In the wee hours of Thursday morning, they changed Grace to a different ventilator. She barely made her platelet count (over 60) to get the last dose of medication needed to prevent surgery. Her count was 61 and she received her last dose.
The poor girl was quite stressed by her echo-cardiagram (basically an ultrasound of the heart & lungs). And then, the unbelievable news of the miracle - the tech could not find the PDA anymore, which means it had closed. They would have to find the pediatric cardiologist to truly read the results, but the initial take had everyone smiling, crying, and holding our breath for the official results.
Our little Gracie, however, was pooped. She does not like so much messing with her.
Word of Grace's miracle traveled quickly through the unit and the floor. I informed everyone that Friday was to
be Grace's day off. Fortunately, Grace seemed to feel the same way. She has had a couple of good days since.
Her chest xrays are improving each day, her blood pressure seems to be holding up.
She is still one teeny tiny sick fragile little girl, but yet so tough.
September 13, 2004
The nurses on "NICU" (neonatal ICU) are so terrific. They took pictures of Grace and emailed them to me to try to make going home a little easier. Thought you might enjoy seeing her beautiful face. I'm afraid her feisty spirit doesn't come across in a picture.
Being home without her is quite the emotional rollercoaster. But, seeing Ben & Nick again helps. Once again, those two little guys are tremendous sources of strength for me.
Mom & I are heading up to St. E's this morning to visit Grace.
She got her second dose of medicine last night to try to start closing it. Hopefully her side effects will be minimal enough so they can keep on the medicine. Overall, she remains stable and is trying to do a little breathing on her own (every now and then her little chin trys to gulp some air and her lungs get a-pumping).