Kate has done great today. (I hate saying Kate and Great together because without fail I have the saying "I'm a poet and I don't even know it" pop into my head:)..... She has stayed in the mid 20's still on her F1O2. Her stomach is distended today which looks like it is from too much air due to the CPAP. She will be watched for the rest of the day and if her oxygen needs(F1O2) can be lowered then they will decrease the PEEP to a 7. This should help get rid of the gas filling her tummy. When she reaches a 6 on the PEEP and is stable then she gets to take the next step forward to a Hi-Flow Cannula.
There is a little concern about Kate not gaining as much weight as she should. On average this last week she is only gaining 9 grams per day and it should be at least 15 grams. It makes sense though because she hasn't been on a consistent 24 calorie fortifier to increase her gain because of her intolerance to it. She has done well on the Nutramigen fortifier the last couple days so they are going to increase her calorie intake on that today. She will have a complete nutrition blood panel done on Monday to make sure she is where she should be at for sodium, glucose, phosphorous, that her kidney's are working, and many other things that I can't remember:)
Saturday, September 28, 2013
TGIF
TGIF- Thank Goodness It's Friday! Kate is 5 weeks old today. It has been a big, exciting day for her! Early morning her PIP(forced breaths per minute) was turned off on the NIPV (ventilator) to see how she could tolerate it. She still receives a constant air flow to keep her lungs open (PEEP) and oxygen saturation (FIO2). She did great on it. In fact she seemed much stronger today than in days past. She was on a 26% FIO2 when I arrived and usually she's in the 30's. The doctor came in and told me that it was time to switch her over to CPAP-OFF the Vent-NO more PIP-Wahoo! The main difference between the NIPV and the CPAP is that there is no more PIP (lots of lingo:). It is also a lot more accurate in telling what precisely she needs with her FIO2 and PEEP, because the mask and prongs in her nose completely close off her nostrils where as with the NIPV some of the air escaped since it wasn't a tight fit. On the CPAP she's been able to stay in the mid-20s on the FIO2 and her PEEP is still at an 8.
She was red-faced and mad when she was switched over because she hated the new feel of the mask and breathing device. But she settled in pretty quick and went to sleep after a few minutes. They said that most babies like CPAP better because it doesn't have the forced breath pressure and she doesn't have the tubes that go around her head that she has to lay on. "The Mask" is just not a pretty picture though! I might lay off on the pics for a little while- maybe if she has it on until Halloween we could count it as her costume:)
She was red-faced and mad when she was switched over because she hated the new feel of the mask and breathing device. But she settled in pretty quick and went to sleep after a few minutes. They said that most babies like CPAP better because it doesn't have the forced breath pressure and she doesn't have the tubes that go around her head that she has to lay on. "The Mask" is just not a pretty picture though! I might lay off on the pics for a little while- maybe if she has it on until Halloween we could count it as her costume:)
Before: On the NIPV
The Drager machine- the NIPV
The settings on the NIPV
The new machine for the CPAP
After: Kate is sporting her new mask
Phonephobia
Phonephobia- it's kind of like arachnophobia (scared of spiders), but instead scared of phones. Josh and I are constantly on phone alert whenever it rings- we stop whatever we are doing to make sure we answer it. The NICU doctor always calls once a day. Usually mid-morning to tell us what is new or needs changed with Kate. I'm starting to get used to those phone calls. Although I have to prep myself a little before I answer it-- always wondering what news it will bring. If the phone rings any other time of day and has the NICU #, my heart has a mild brady (Kate has passed those on to me). If it's before 10 it usually means that Kate has immediate needs that have to be addressed. If it's after the usual mid-morning call than something has changed and they want to notify us of it. Sometimes I get myself all worked up and answer the phone to find out it's the lactation consultant or social worker from the NICU:) The call we always have in the back of our minds and dread- is if they call us in the late evening or middle of the night- then we know things are not good. Thank goodness we have not received any of those. There was once though with Kam that the nurse called me around 11 pm (I was already asleep) to tell me what Kam's weight was because I had asked earlier that day and she hadn't weighed him yet. It took me a few hours to recover from that call. Also, about a week ago at 2:30 am my phone alarm went off in the kitchen and it sounded like a phone ringing- Josh and I both had a panic attack when that happened. I've never seen Josh jump out of bed so fast- and he usually sleeps through EVERYTHING! Phonephobia- who would've known??
(BTW, I don't think this word is in the dictionary:0)
Thursday, September 26, 2013
Prayer List
This past month and a half so many people have offered prayers in our behalf. I have truly felt the strength of those prayers. Most days I feel a strength that is not my own helping me carry on and perform what needs to be done to care for my family. I know that the prayers have helped with the miracle of Kate's birth and also have helped her do so well. I have been so impressed that people have kept us in their thoughts and prayers after so many weeks have passed. A Tender Moment- one of my sweet preschoolers told me just the other day that her family prays for Kate everyday. I know that there are still so many family and friends that continue to do so.
Through the inspiration of other people I've decided I want to make a "Prayer List" for my family to think about. This will be a real, tangible list that I'm going to hang in a visible place. The list will be added upon as needed. There are so many people that need to be prayed for- some that we know and some that we don't know. We can talk about it before family prayers. I think there are several great reasons to have a prayer list. 1- To bless those in need. 2- To teach my kids compassion for others. 3- To see the results that prayers are answered in many different ways. 4- To help them realize the blessings they have. 5-To help prayers not be so monotonous.
Through the inspiration of other people I've decided I want to make a "Prayer List" for my family to think about. This will be a real, tangible list that I'm going to hang in a visible place. The list will be added upon as needed. There are so many people that need to be prayed for- some that we know and some that we don't know. We can talk about it before family prayers. I think there are several great reasons to have a prayer list. 1- To bless those in need. 2- To teach my kids compassion for others. 3- To see the results that prayers are answered in many different ways. 4- To help them realize the blessings they have. 5-To help prayers not be so monotonous.
Growing Pictures
September 25th(2.5 lbs. 15.5")
September 23rd
September 18th
September 13th
September 8th
August 28th (1.8 lbs.)
August 25th (1.10 lbs. 14")
September 26th
Kate has been doing very good. Although she was turned back up to higher settings this last weekend, she is now being tested again to see what she can tolerate. Her PIP(breaths per minute) has been turned back down to a 10 and her Peep was turned down to an 8 tonight. So far she has done good on it. The doctor is now talking about turning off the PIP(no forced breaths)to give her a trial run and see how well she can do. If she can hold her own then she is ready to be taken off the ventilator and moved to a c-pap.
A couple days ago, Kate's stomach became distended again. One of my wonderful primary nurses has been keeping tabs on Kate even though she hasn't been with her on her shifts much lately. She told me she felt like Kate seems to have the problems with tummy distention and runny stool every time her milk fortifier is increased. So the doctor talked with Kate's dietician and they decided to try her on Nutramigen as a fortifier because it's softer on her tummy. She receives about 1 tsp. of it with my milk per feeding. Yesterday and today she has tolerated it ok. This is the same formula I gave to some of my other babies for colicky tummies. It will give Kate the extra calories she needs, but it doesn't have some of the extra's that she needs like the calcium that is in the other fortifier. They will have to add those in some other way. It amazes me daily how many things there are to think about, learn, and figure out with these preemies! I'm so grateful for all the knowledge Kate's doctors, nurses, and all the other staff have. They take such great care of her!!
A couple days ago, Kate's stomach became distended again. One of my wonderful primary nurses has been keeping tabs on Kate even though she hasn't been with her on her shifts much lately. She told me she felt like Kate seems to have the problems with tummy distention and runny stool every time her milk fortifier is increased. So the doctor talked with Kate's dietician and they decided to try her on Nutramigen as a fortifier because it's softer on her tummy. She receives about 1 tsp. of it with my milk per feeding. Yesterday and today she has tolerated it ok. This is the same formula I gave to some of my other babies for colicky tummies. It will give Kate the extra calories she needs, but it doesn't have some of the extra's that she needs like the calcium that is in the other fortifier. They will have to add those in some other way. It amazes me daily how many things there are to think about, learn, and figure out with these preemies! I'm so grateful for all the knowledge Kate's doctors, nurses, and all the other staff have. They take such great care of her!!
The Best and the Worst
There are so many great things throughout each day that I enjoy, but the part I look forward to most right now is holding Kate! Although this is the Best part of my day it also brings the Worst anxiety for me. I wish holding her was as simple as that- just holding her. I sit down (about a yard) away from her bed in a chair. It takes two people(the nurse and respiratory therapist) to lift her out of her bed and bring her to me, because of all the cords and tubes. It's the same to put her back in the incubator also. Such a complicated process just to hold her. Each day I go up now I can hold her as long as her vital signs are good. Some days this is 15 min. and other days it is over an hour. I love to hold her and it warms my heart. It's also very good for her. It is supposed to help her develop/grow better and come home quicker. But at the same time- I sit and watch the monitor with an intensity that makes my heart sink and adrenaline rush every time her oxygen saturation drops or she has breathing apnea's. It is still hard for her to manage her breathing when being held, at times she does so well her oxygen saturation needs to be lowered. At other times she becomes so calm that she forgets to breathe or she gets weak and tired. Her oxygen needs to be turned up quite high and she has to be put back in her incubator.
I remember there was one time I was holding Kam and he had a bradycardia(brady-heart rate drops) and he quit breathing(apnea). He turned a bit blue and it really scared me! The nurse was right there and rubbed his back and moved him around to stimulate him to breath again on his own. Most preemies have bradys and apneas, so it shouldn't have scared me so bad-but it was one of the most terrible feelings.
With Kate I've tried to prepare myself if that happens. She has had a few apneas in the last 5 weeks, but rarely has she had any bradys. Mostly, she just has periodic breathing which is when she stops breathing for about 5-10 seconds, if it goes 20 seconds or longer it is considered an apnea. Today while I was holding her she had an apnea and then it turned into a severe brady. I'm pretty sure I had a brady too- because it scared me to see her drop so low and hear the alarms squeal! I realize now that feeling your babies body go limp as her chest refuses to rise and fall with each breath is never something I can prepare myself for-even if it's only for 20 seconds. It makes everything all too real that modern technology and medicine is what has kept my baby alive. I am so grateful for these machines- but at the same time I am beginning to hate the monitor. I hate watching the numbers drop and rise. I hate that I watch it more than my baby. I hate that it dictates how long I hold her. I hate that I just can't hold, enjoy, and cuddle her without so much worry! (I obviously have some anger issues tonight:)
Kate's Fantastic babysitters- Reggie the Respiratory Therapist & Becca, one of her Primary Nurses
Prepping Kate for the Hand-Off by gathering all her tubes and cords.
I remember there was one time I was holding Kam and he had a bradycardia(brady-heart rate drops) and he quit breathing(apnea). He turned a bit blue and it really scared me! The nurse was right there and rubbed his back and moved him around to stimulate him to breath again on his own. Most preemies have bradys and apneas, so it shouldn't have scared me so bad-but it was one of the most terrible feelings.
With Kate I've tried to prepare myself if that happens. She has had a few apneas in the last 5 weeks, but rarely has she had any bradys. Mostly, she just has periodic breathing which is when she stops breathing for about 5-10 seconds, if it goes 20 seconds or longer it is considered an apnea. Today while I was holding her she had an apnea and then it turned into a severe brady. I'm pretty sure I had a brady too- because it scared me to see her drop so low and hear the alarms squeal! I realize now that feeling your babies body go limp as her chest refuses to rise and fall with each breath is never something I can prepare myself for-even if it's only for 20 seconds. It makes everything all too real that modern technology and medicine is what has kept my baby alive. I am so grateful for these machines- but at the same time I am beginning to hate the monitor. I hate watching the numbers drop and rise. I hate that I watch it more than my baby. I hate that it dictates how long I hold her. I hate that I just can't hold, enjoy, and cuddle her without so much worry! (I obviously have some anger issues tonight:)
THE MONITOR
The green top line is her heart rate.
The blue second line is her oxygen saturation (this is the # that swings a lot.)
The bottom white line is her respiratory rate. This will show if she is having apneas and periodic breathing.
The lights at the top of the screen are alarms that go along with a beep or a squeal depending on the severity variance of the vital signs. The NICU is filled with the constant beepings from one baby to another. The nurses say they dream Beeps.
Tub Bath
(If you look closely, she's doing the I love you sign:)
Her 2nd tub bath. The last 4 weeks she just had cotton swab wipe down baths. Preemies can start having tub baths when they reach 1000 grams and can tolerate it well. Her first two tubs she really liked, except getting her hair washed.
This is a normal baby tub that she's bathing in. She is wrapped up in a blanket to keep her body temperature warm. They only wash and uncover one part of her body at a time to reduce the loss of body heat. She has blankets on the sides and behind her to keep it soft and hold her in place.
She's finally getting a little chub on her legs!
Monday, September 23, 2013
1 Month Old
Kate is 1 month old today!! I can honestly say that time is going by pretty quickly. The first two weeks were the longest, but now with preschool going the days seem to end before I can blink. She's gained weight- 2 lbs. 5 oz. and 15.5" in length!
She's going to have her first tub bath tonight.
Kate had one of my favorite nurses today. She took care of her on her very first day of life and signed up to be one of her primary nurses. This means that when she works she will most likely be assigned as Kate's nurse up until she is released from the hospital. It is so nice to have primary nurses that I'm able to get to know and feel comfortable with! Today she sent me a cute collage of Kate for her 1 month old date. She cleaned up Kate and was able to hide as many cords as possible. She looks so sweet and cute- so much healthier than in days past! Brought tears to my eyes. (I was able to dress her in her first onesy last night-of course I picked it for the saying:)
Kate has been doing pretty good- but a little bit of the rollercoaster ride today and yesterday. The doctor wanted to try and get her on the nasal cannula over the weekend and off the ventilator, but it wasn't very successful. She has three different settings on the ventilator that they change around. 1- PEEP: the amount of pressure she is getting to fill up her lungs so they don't collapse. 2- FIO2: the oxygen saturation level, 21% is what we breathe in room air. 3- PIP: the amount of breaths the ventilator is giving her. On the 19th (4 days ago) her setting were lowered. Her PEEP was dropped to a 7, and her PIP was dropped to a 10. Lowering these settings made it so the FIO2 had to be raised. She was able to hold her oxygen in the mid-to-high 20's before. With the new settings she started "swinging" a lot ( which means she had to have her oxygen adjusted due to her high and low saturation levels). She maintained in the 30's and 40's. Early Sunday morning she started having a rough time and her FIO2 was in the 50's. She also had an x-ray done and her lungs looked really hazy and were collapsing a little. The doctor called and said they were going to raise her PIP back up to 20. Her PEEP had already been raised up a little the last two days and today it was changed to a 10. So she's back to where she started again on this ventilator.
Kate's nurse explained to me last night that this is like a training course. Kate has to be forced to strengthen herself, just like we would if we were training for a marathon. She has to take little steps at a time and be pushed, but she might get tired and wore out along the way. She rests and recoups and then starts over again- in hopes to do a little better the next time. It is just going to take time and continued effort to get her strong. All of this is good and normal- she is still doing great!
She's going to have her first tub bath tonight.
Kate had one of my favorite nurses today. She took care of her on her very first day of life and signed up to be one of her primary nurses. This means that when she works she will most likely be assigned as Kate's nurse up until she is released from the hospital. It is so nice to have primary nurses that I'm able to get to know and feel comfortable with! Today she sent me a cute collage of Kate for her 1 month old date. She cleaned up Kate and was able to hide as many cords as possible. She looks so sweet and cute- so much healthier than in days past! Brought tears to my eyes. (I was able to dress her in her first onesy last night-of course I picked it for the saying:)
Kate's nurse explained to me last night that this is like a training course. Kate has to be forced to strengthen herself, just like we would if we were training for a marathon. She has to take little steps at a time and be pushed, but she might get tired and wore out along the way. She rests and recoups and then starts over again- in hopes to do a little better the next time. It is just going to take time and continued effort to get her strong. All of this is good and normal- she is still doing great!
Sunday, September 22, 2013
Kangaroo Care
Kate has had 2 good days. She has hardly had any tests done on her. The IV's were taken out yesterday. Kate has been able to stay on the ten breaths per minute, but her lungs haven't been expanding as much as they should have been. Her Peep was turned up from a 7 to an 8 yesterday and then to a 9 today. It definitely helped to turn her up. She did so much better today when I held her than she did the last two nights being held. I was able to hold her for over an hour without any problems!
Josh held her for the first time yesterday! Such a sweet moment that melted my heart! He was so nervous at first, but she snuggled right in and did great with him for about 30 min. Then she became exhausted and her oxygen saturation dropped too much. She needed to be put back in her incubator.
When we hold Kate, we do what's called skin-to-skin. It has a lot of benefits for preemie babies. Kangaroo Care is another name for skin-to-skin holding. I was a bit worried that Josh might not be able to hold Kate this way, but the nurse assured me that most fathers hold skin-to-fur instead and the babies do great:) LOL. The chest hair doesn't bother them.
Kangaroo Care benefits: There are several good medical reasons why it is beneficial, but perhaps the simple answer is that babies like it. They are comfortable in the warmth, peace, and security of being held close to their mother or father. Likely it reminds them of the safety of the uterus they left too early. Their health improves tremendously. There has been an immense amount of international research backing up the benefits of kangaroo care. Premature babies sleep better and breathe more easily when being held this way. They cry and fidget less and, being calmer, they grow better. Kangaroo'd babies have fewer apnea (stop-breathing) and bradycardia (slowed heartbeat) attacks, and fewer body-temperature fluctuations-they stay warm, thanks to the warmth of their parents body. They develop fewer infections, gain weight quicker, leave their incubators sooner, and go home earlier!
Josh held her for the first time yesterday! Such a sweet moment that melted my heart! He was so nervous at first, but she snuggled right in and did great with him for about 30 min. Then she became exhausted and her oxygen saturation dropped too much. She needed to be put back in her incubator.
When we hold Kate, we do what's called skin-to-skin. It has a lot of benefits for preemie babies. Kangaroo Care is another name for skin-to-skin holding. I was a bit worried that Josh might not be able to hold Kate this way, but the nurse assured me that most fathers hold skin-to-fur instead and the babies do great:) LOL. The chest hair doesn't bother them.
Kangaroo Care benefits: There are several good medical reasons why it is beneficial, but perhaps the simple answer is that babies like it. They are comfortable in the warmth, peace, and security of being held close to their mother or father. Likely it reminds them of the safety of the uterus they left too early. Their health improves tremendously. There has been an immense amount of international research backing up the benefits of kangaroo care. Premature babies sleep better and breathe more easily when being held this way. They cry and fidget less and, being calmer, they grow better. Kangaroo'd babies have fewer apnea (stop-breathing) and bradycardia (slowed heartbeat) attacks, and fewer body-temperature fluctuations-they stay warm, thanks to the warmth of their parents body. They develop fewer infections, gain weight quicker, leave their incubators sooner, and go home earlier!
Thursday, September 19, 2013
Good Luck Baby
The nurses and doctors quite frequently tell me that Kate is doing exceptionally well for her age. Most the time I tell them she's my Good Luck baby! Most of them don't know that she was born in the "caul" (amniotic sac). Being born with the caul in medieval times was interpreted as a sign of good luck and that the child was destined for greatness. She's already started off on the right track.
Her sodium was good today. She will start to be weaned off the sodium chloride and the hydrocortisone again. She's been very calm. And the best news is her blood gas test(for O2 and C02) came back soo good that they want to try and get her off the ventilator this weekend and on the nasal canula. Her ventilator setting for how many breaths per minute she receives was turned down from 20 to 10 to see how she would tolerate it. She did pretty good with it today. I held her tonight, but she didn't tolerate that very well. After about 15 min. her oxygen saturation dropped and the respiratory therapist couldn't get her to stabilize. But that's ok- she had a big change with her ventilator settings and holding her is a pretty big deal for her to try and maintain her breathing. She did good, once she was back in her incubator.
Her sodium was good today. She will start to be weaned off the sodium chloride and the hydrocortisone again. She's been very calm. And the best news is her blood gas test(for O2 and C02) came back soo good that they want to try and get her off the ventilator this weekend and on the nasal canula. Her ventilator setting for how many breaths per minute she receives was turned down from 20 to 10 to see how she would tolerate it. She did pretty good with it today. I held her tonight, but she didn't tolerate that very well. After about 15 min. her oxygen saturation dropped and the respiratory therapist couldn't get her to stabilize. But that's ok- she had a big change with her ventilator settings and holding her is a pretty big deal for her to try and maintain her breathing. She did good, once she was back in her incubator.
I forgot my brain...
Today I left to see Kate and I forgot my brain on my way out the door:) Oh, and I also forgot my wallet too! I remembered the most important item though- a bag of popcorn... It really is, I tend to be very tired while driving (especially after a night of pumping). I have been known to fall asleep, if I'm sitting still anywhere at anytime. In church, movies, and I'll admit I've fallen asleep on the road in a traffic jam and I very slowly ran into the tire of a moving diesel. The bag of popcorn was definitly a necessity (more so than the wallet:), because I couldn't find the sunflower seeds that are usually my go to for staying awake.
Back to the wallet- I was running just a few minutes behind for Kate's 4:30 care. If I didn't get there for that, than I'd have to wait till 7:30 to see and hold her. About the time I hit Santaquin I realized I didn't have my wallet and I had 60 miles until empty. I knew that was cutting it a little too close to the risky side to try and make it to the hospital and then home, but I wasn't about to turn back. A couple thoughts crossed my mind. Option 1-stand in Walmart's parking lot and beg for $ or Option 2- call my sister that lives in Springville to get some $. The latter option sounded the best. Thank heaven for sisters! I knew I could go see Kate and stop on my way home. I called her and let her know I left my wallet at home. As we were talking, my phone started the warning beep that it was about to die. We made a new plan of how to do the $ exchange without a phone. (How did we ever function without cell phones!) I quickly called Josh and told him the bad news- no wallet, no phone. My phone died right after I hung up with him. It took about 8 minutes before I realized, I had a cell phone charger in the car- duh:) On top of all this I might or might not have stopped at a green light! I thought this was better than NOT stopping at a red light. All worked out and I did make it home without anymore brain farts!
I'm not quite sure what to attribute my loss of brain cells to?? I think I have the combo package- I've always been a little blonde (even though I now have to color my hair), I've got all these emotions and hormones on my plate, and last but not least I have heard with each pregnancy you loose brain cells (I believe it!) With that combo package and SIX pregnancies in all- I'm in trouble. (I'm pretty sure my husband thinks I'm a hazard to myself.) I hope this isn't permanent!
Back to the wallet- I was running just a few minutes behind for Kate's 4:30 care. If I didn't get there for that, than I'd have to wait till 7:30 to see and hold her. About the time I hit Santaquin I realized I didn't have my wallet and I had 60 miles until empty. I knew that was cutting it a little too close to the risky side to try and make it to the hospital and then home, but I wasn't about to turn back. A couple thoughts crossed my mind. Option 1-stand in Walmart's parking lot and beg for $ or Option 2- call my sister that lives in Springville to get some $. The latter option sounded the best. Thank heaven for sisters! I knew I could go see Kate and stop on my way home. I called her and let her know I left my wallet at home. As we were talking, my phone started the warning beep that it was about to die. We made a new plan of how to do the $ exchange without a phone. (How did we ever function without cell phones!) I quickly called Josh and told him the bad news- no wallet, no phone. My phone died right after I hung up with him. It took about 8 minutes before I realized, I had a cell phone charger in the car- duh:) On top of all this I might or might not have stopped at a green light! I thought this was better than NOT stopping at a red light. All worked out and I did make it home without anymore brain farts!
I'm not quite sure what to attribute my loss of brain cells to?? I think I have the combo package- I've always been a little blonde (even though I now have to color my hair), I've got all these emotions and hormones on my plate, and last but not least I have heard with each pregnancy you loose brain cells (I believe it!) With that combo package and SIX pregnancies in all- I'm in trouble. (I'm pretty sure my husband thinks I'm a hazard to myself.) I hope this isn't permanent!
Wednesday, September 18, 2013
September 18th
Kate has had a great day! She was calm and was able to stay on the peep at 7 on her ventilator. She is swinging a lot as far as keeping her oxygen on a set saturation level, but she will get stronger with time. Her hemoglobin has risen and is at a 11 again(normal range). Everything else is going well.
I didn't get to see Kate today, but I am feeling so much better than I did yesterday. (The tears have been damned:) Funny how that works- one day so sad and the next I'm doing great. Just a good night sleep and a new day can make a world of difference. It's hard to admit that I had a bad day yesterday- I didn't have a reason for my emotional fall apart with Kate doing so well. I should just be grateful and count my blessings! On the other hand I do have to tell myself it's ok to have bad moments and bad days. Kate is an A+ student in the NICU and her ups and downs are considered normal. I have to realize that she might be a normal preemie, but there is nothing normal about this for me. I'm sure these days will continue to come and go every now and then.
I didn't get to see Kate today, but I am feeling so much better than I did yesterday. (The tears have been damned:) Funny how that works- one day so sad and the next I'm doing great. Just a good night sleep and a new day can make a world of difference. It's hard to admit that I had a bad day yesterday- I didn't have a reason for my emotional fall apart with Kate doing so well. I should just be grateful and count my blessings! On the other hand I do have to tell myself it's ok to have bad moments and bad days. Kate is an A+ student in the NICU and her ups and downs are considered normal. I have to realize that she might be a normal preemie, but there is nothing normal about this for me. I'm sure these days will continue to come and go every now and then.
Tuesday, September 17, 2013
Where's my Clone?
Kate and I both had a rough day today. Hers is considered a typical day- nothing out of the norm for a preemie baby. Her sodium is slowly on the rise with the sodium chloride she is receiving and the hydrocortisone. Her stool is back to normal (have to celebrate normal poop:) She was started back on 2 calorie fortifier. She needed a second blood transfusion today. She had to have 2 new IVs put in- one in each wrist. One for fluids because they were stopping her feeding and one for the blood. She is doing great with her breathing. The peep on her ventilator settings were lowered from an 8 to a 7 (that's the pressure to keep her lungs open.)
My day was an emotional day- not really because of anything to do with Kate's health, but more so because of the overwhelming exhaustion of all this. I am having a hard time finding a balance of where I need to be! I feel so torn, between home and the NICU. My heart wants to be in both places at the same time. Where is my clone when I really need one? If ever I needed one, it would be NOW. (Maybe two- I could use an extra one just to do the pumping:)
I was a faucet of tears most of the day- didn't take much to set off the Niagara Falls either. All it took was for one of the parent support ladies at the NICU to ask me if I was ok and give me a hug. It took about 15 minutes for me to get a grip on the tears-she probably regrets asking me that now. No really, that's what she is there for. She's been through the NICU experience too and knows how it goes. I think all the workers in the NICU have a big invisible heart they wear on their sleeve. They know how to comfort and lighten our load. They are used to all of the crying moms.
When I arrived to see Kate, the nurse said she had been very mad earlier and had a hard time settling down. I don't hardly blame her though- she was hungry because they stopped her feeding while giving her blood. Giving her both could wear her out as her body tried to process them. She also had the 2 IVs that I'm sure were uncomfortable and bothered her. She was given Versed to calm her. She had such a sad, little cry tonight and when I first held her she was fighting it and wouldn't settle down. After about 5 minutes she slowly calmed and her vitals signs became stable. I put my lips on her tiny head and held them there to give her a kiss- I felt her calm as she felt my touch. I needed that - I needed to know that I could calm her and make her day just a little bit better. She also was able to receive her feeding at that time. So with a full tummy and a little mommy time- she seemed to settle right back down in her incubator, ready to call it a day! I'm sure tomorrow will be better for both of us.
(An IV in each wrist)
My day was an emotional day- not really because of anything to do with Kate's health, but more so because of the overwhelming exhaustion of all this. I am having a hard time finding a balance of where I need to be! I feel so torn, between home and the NICU. My heart wants to be in both places at the same time. Where is my clone when I really need one? If ever I needed one, it would be NOW. (Maybe two- I could use an extra one just to do the pumping:)
I was a faucet of tears most of the day- didn't take much to set off the Niagara Falls either. All it took was for one of the parent support ladies at the NICU to ask me if I was ok and give me a hug. It took about 15 minutes for me to get a grip on the tears-she probably regrets asking me that now. No really, that's what she is there for. She's been through the NICU experience too and knows how it goes. I think all the workers in the NICU have a big invisible heart they wear on their sleeve. They know how to comfort and lighten our load. They are used to all of the crying moms.
When I arrived to see Kate, the nurse said she had been very mad earlier and had a hard time settling down. I don't hardly blame her though- she was hungry because they stopped her feeding while giving her blood. Giving her both could wear her out as her body tried to process them. She also had the 2 IVs that I'm sure were uncomfortable and bothered her. She was given Versed to calm her. She had such a sad, little cry tonight and when I first held her she was fighting it and wouldn't settle down. After about 5 minutes she slowly calmed and her vitals signs became stable. I put my lips on her tiny head and held them there to give her a kiss- I felt her calm as she felt my touch. I needed that - I needed to know that I could calm her and make her day just a little bit better. She also was able to receive her feeding at that time. So with a full tummy and a little mommy time- she seemed to settle right back down in her incubator, ready to call it a day! I'm sure tomorrow will be better for both of us.
How are you?
The common, everyday, small talk question- "How are you?" This is a question many of us rarely think about, but ask often and in return get a very general response. Pretty much a meaningless question, because rarely is anyone ever very honest about how they are REALLY doing.
This past month- I have been touched by how many people are truly, genuinely concerned not just about Kate, but about me. I have so many wonderful friends and family that ask, "Really-how are you?" Often times it's easiest to say- "I'm good, just trying to pass the time and let Kate bake in the NICU for a few months." But in reality, there's not a day that goes by that it's easy to "just let her bake." To be honest though- most days I am OK. There are even a few days I surprise myself and actually feel pretty good about everything. I'm so busy with my 5 kids at home, I don't have time to think much. It's the times when I slow down- like in the evenings when the kids are in bed, throughout the day when I am spending time with my new Best Friend the PUMP, or when I am driving to the hospital that I have my quiet moments-those are the times when reality sets in and it's emotionally hard. Most days those moments only last about 46 seconds. I shed a couple tears, or get a hug and pep talk from Josh and then I am able to redirect my thoughts and keep going. It also amazes me that when I have those moments-someone is inspired to send me a text, give me a call, or show up on my doorstep. Just knowing that others are still thinking about, praying for, and offering to help gives me strength. I have found it is easier to TRY and stay strong and carry on than it is to let weakness take over and not do anything.
Not everyday is like this though- there has been just a few days when sadness surrounds me and there is not a thing I can do to rid myself of it. It doesn't matter whether I am out and about or at home- tears are constantly on the brim of becoming a water faucet. If someone so much as looks at me the tears are triggered- even worse if they hug me I break down into a sob. The good thing is I always know when I wake up the next day I will feel better and it's a fresh start. I have a 100% survival rate so far for bad days. Today was one of those days..... but I can only write about it tonight because I know tomorrow I'll be OK again.
This past month- I have been touched by how many people are truly, genuinely concerned not just about Kate, but about me. I have so many wonderful friends and family that ask, "Really-how are you?" Often times it's easiest to say- "I'm good, just trying to pass the time and let Kate bake in the NICU for a few months." But in reality, there's not a day that goes by that it's easy to "just let her bake." To be honest though- most days I am OK. There are even a few days I surprise myself and actually feel pretty good about everything. I'm so busy with my 5 kids at home, I don't have time to think much. It's the times when I slow down- like in the evenings when the kids are in bed, throughout the day when I am spending time with my new Best Friend the PUMP, or when I am driving to the hospital that I have my quiet moments-those are the times when reality sets in and it's emotionally hard. Most days those moments only last about 46 seconds. I shed a couple tears, or get a hug and pep talk from Josh and then I am able to redirect my thoughts and keep going. It also amazes me that when I have those moments-someone is inspired to send me a text, give me a call, or show up on my doorstep. Just knowing that others are still thinking about, praying for, and offering to help gives me strength. I have found it is easier to TRY and stay strong and carry on than it is to let weakness take over and not do anything.
Not everyday is like this though- there has been just a few days when sadness surrounds me and there is not a thing I can do to rid myself of it. It doesn't matter whether I am out and about or at home- tears are constantly on the brim of becoming a water faucet. If someone so much as looks at me the tears are triggered- even worse if they hug me I break down into a sob. The good thing is I always know when I wake up the next day I will feel better and it's a fresh start. I have a 100% survival rate so far for bad days. Today was one of those days..... but I can only write about it tonight because I know tomorrow I'll be OK again.
Have Faith, Not Fear
One of the lessons I learned 8 yrs. ago when I had Kam was to Have Faith and Not Fear. This was a hard lesson learned because I didn't actually learn it until towards the end of Kam's hospital stay. I had felt that I was trying to deal with him being a preemie all on my own. I felt very unsure of the faith I had. I felt like faith was knowing that he would be ok- and I never got that confirmation. Almost every day he was in the NICU I feared the worst. I was a wreck. At the end of his hospital stay I had an experience that I knew without a doubt that my Father in Heaven had been carrying me through this trial (like the poem "Footprints in the Sand") and that he knew exactly what emotions and difficulties I was having. I had never experienced this feeling before. I felt that I was wrapped up in a blanket of love, warmth, comfort, and peace- that he was right there by my side.
I learned at this point that this trial wasn't about having enough faith that I would be told everything would be ok. It was about having the faith that everything was in Heavenly Father's hands and that I need not fear the outcomes. This is HIS plan, not mine- everything will work out according to his will. He will help us through it, if we let him. He knows that we will be strengthened from and be able to handle whatever it is he has in store for us.
Now that I'm back in this situation again- I know I'm being tested to see, if I still believe this. It's definitely a lot easier said than done! I tend to prod the miracle workers in the NICU about how they've seen other 25 week babies do. I'm always eager to ask how they think my baby is doing and what her future has in store for her. I wish I had a crystal ball that would reveal for her what lies ahead. I would give most anything to know that Kate is going to pass this test with flying colors and that she will come home perfectly healthy in 4 months. I have hope and I can pray for this. I believe faith is also praying for and receiving miracles, but I know that this doesn't always happen. We might not have the outcomes we desire. Every time I'm hit with fear or it starts creeping in I pray for the faith-for the understanding- that Kate is in the Lord's hands and he will take care of her for me, he will oversee that his will is going to be carried out one way or the other.
Faith is the opposite of fear- they cannot coincide together. This would not be a trial if, if I could see the ending in sight. This is a test of our spirits. We are given trials to strengthen us through our faith in the plan of salvation.
I learned at this point that this trial wasn't about having enough faith that I would be told everything would be ok. It was about having the faith that everything was in Heavenly Father's hands and that I need not fear the outcomes. This is HIS plan, not mine- everything will work out according to his will. He will help us through it, if we let him. He knows that we will be strengthened from and be able to handle whatever it is he has in store for us.
Now that I'm back in this situation again- I know I'm being tested to see, if I still believe this. It's definitely a lot easier said than done! I tend to prod the miracle workers in the NICU about how they've seen other 25 week babies do. I'm always eager to ask how they think my baby is doing and what her future has in store for her. I wish I had a crystal ball that would reveal for her what lies ahead. I would give most anything to know that Kate is going to pass this test with flying colors and that she will come home perfectly healthy in 4 months. I have hope and I can pray for this. I believe faith is also praying for and receiving miracles, but I know that this doesn't always happen. We might not have the outcomes we desire. Every time I'm hit with fear or it starts creeping in I pray for the faith-for the understanding- that Kate is in the Lord's hands and he will take care of her for me, he will oversee that his will is going to be carried out one way or the other.
Faith is the opposite of fear- they cannot coincide together. This would not be a trial if, if I could see the ending in sight. This is a test of our spirits. We are given trials to strengthen us through our faith in the plan of salvation.
NICU nurses
NICU nurses will always have a special place in my heart. They are more than just expensive babysitters-they are Life Savers-Miracle Workers. They are a part of my family, my babies second mom. It's always a little tear jerker when I call in the evenings to check on Kate and then to ask the nurse to give my baby loves for me and say thanks for taking care of her. NICU nurses have one of the most meaningful jobs in the world- a job that a mother longs to do, but can't.
This letter was shared on the following website
http://www.preemiebabies101.com/2013/09/dear-nicu-nurse/
To be honest, I never knew you existed. Back when our birth plan included a fat baby, balloons and a two-day celebratory hospital stay, I had never seen you. I had never seen a NICU. Most of the world hasn’t. There may have been a brief, “This is the Neonatal floor” whilst drudging by on a hospital tour. But no one really knows what happens behind those alarm-secured, no-window-gazing, doors of the NICU. Except me. And you.
I didn’t know that you would be the one to hold and rock my baby when I wasn’t there. I didn’t know that you would be the one to take care of him the first 5 months of his life as I sat bedside, watching and wishing that I was you. I didn’t know that you would be the one to hand him to me for the first time, 3 weeks after he was born. That you would know his signals, his faces, and his cries. Sometimes, better than me. I didn’t know you. I didn’t know how intertwined our lives would become.
I know you now. I’ll never be able to think of my child’s life, without thinking of you.
I know that in the NICU, you really run things. That your opinions about my baby’s care often dictates the course and direction or treatment as you consult with the neonatologist every day. I know that you don’t hesitate to wake a sometimes sleeping doctor in the nearby call room because my baby’s blood gas number is bad. Or because his color is off. Or because he has had 4 bradys in the last 45 minutes. Or because there’s residual brown gunk in his OG tube.
I know now that youare different from other nurses.
I know that, at times, you are assigned to just one baby for 12 hours straight. You are assigned to him because he is the most critically sick and medically fragile baby in the unit. I’ve seen you sit by that baby’s bedside for your entire shift. Working tirelessly to get him comfortable and stable. Forgoing breaks while you mentally will his numbers to improve. I’ve seen you cry with his family when he doesn’t make it. I’ve seen you cry alone.
I’ve seen you, in an instant, come together as a team when chaos ensues. And let’s be honest, chaos and NICU are interchangeable words. When the beeper goes off signaling emergency 24 weeker triplets are incoming. When three babies in the same pod are crashing at the same time. When the power goes off and you’re working from generators. In those all too often chaotic moments, you know that time is more critical in this unit than any other, and you don’t waste it. You bond together instantly as a team, methodically resolving the crisis until the normal NICU rhythm is restored.
Yes. I know you now. I’ll never be able to give in return what you have given to me. Thank you for answering my endless questions, even when I had asked them before. Thank you for your skill, you are pretty great at what you do. Thank you for fighting for my baby. Thank you for pretending like it was normal when I handed you a vial of just pumped breast milk. Thank you for agreeing to play Beatles lullabies in my baby’s crib when I was gone. Thank you for waking the doctor. Thank you for texting me pictures of my sweet miracle, even when it was against hospital policy. Thank you for crying with me on the day we were discharged.
Most of the world still doesn’t know what you do. They can’t understand how integral you are to the positive outcomes of these babies who started life so critically ill. But I do. I know you now. I will never forget you. In fact, our story can never be told without mentioning you. So the next time you wave your access card to enter the place that few eyes have seen, know that you are appreciated. I know you, and you are pretty amazing.
Your fan forever,
A NICU mom
This letter was shared on the following website
http://www.preemiebabies101.com/2013/09/dear-nicu-nurse/
Dear NICU Nurse,
I didn’t know that you would be the one to hold and rock my baby when I wasn’t there. I didn’t know that you would be the one to take care of him the first 5 months of his life as I sat bedside, watching and wishing that I was you. I didn’t know that you would be the one to hand him to me for the first time, 3 weeks after he was born. That you would know his signals, his faces, and his cries. Sometimes, better than me. I didn’t know you. I didn’t know how intertwined our lives would become.
I know you now. I’ll never be able to think of my child’s life, without thinking of you.
I know that in the NICU, you really run things. That your opinions about my baby’s care often dictates the course and direction or treatment as you consult with the neonatologist every day. I know that you don’t hesitate to wake a sometimes sleeping doctor in the nearby call room because my baby’s blood gas number is bad. Or because his color is off. Or because he has had 4 bradys in the last 45 minutes. Or because there’s residual brown gunk in his OG tube.
I know now that youare different from other nurses.
I know that, at times, you are assigned to just one baby for 12 hours straight. You are assigned to him because he is the most critically sick and medically fragile baby in the unit. I’ve seen you sit by that baby’s bedside for your entire shift. Working tirelessly to get him comfortable and stable. Forgoing breaks while you mentally will his numbers to improve. I’ve seen you cry with his family when he doesn’t make it. I’ve seen you cry alone.
I’ve seen you, in an instant, come together as a team when chaos ensues. And let’s be honest, chaos and NICU are interchangeable words. When the beeper goes off signaling emergency 24 weeker triplets are incoming. When three babies in the same pod are crashing at the same time. When the power goes off and you’re working from generators. In those all too often chaotic moments, you know that time is more critical in this unit than any other, and you don’t waste it. You bond together instantly as a team, methodically resolving the crisis until the normal NICU rhythm is restored.
Yes. I know you now. I’ll never be able to give in return what you have given to me. Thank you for answering my endless questions, even when I had asked them before. Thank you for your skill, you are pretty great at what you do. Thank you for fighting for my baby. Thank you for pretending like it was normal when I handed you a vial of just pumped breast milk. Thank you for agreeing to play Beatles lullabies in my baby’s crib when I was gone. Thank you for waking the doctor. Thank you for texting me pictures of my sweet miracle, even when it was against hospital policy. Thank you for crying with me on the day we were discharged.
Most of the world still doesn’t know what you do. They can’t understand how integral you are to the positive outcomes of these babies who started life so critically ill. But I do. I know you now. I will never forget you. In fact, our story can never be told without mentioning you. So the next time you wave your access card to enter the place that few eyes have seen, know that you are appreciated. I know you, and you are pretty amazing.
Your fan forever,
A NICU mom
Monday, September 16, 2013
September 16th
Today was my first day teaching preschool. It was a lot of fun, with a lot of cute kids! It's been a bit busy trying to get ready for today.
Yesterday I went to see Kate and was able to hold her again. After 30 min. the nurse asked if I wanted to keep holding her since she was doing good. I almost had to laugh as I thought, "Is that even a question." Kate did so well, I held her for over an hour. The NICU is being remodeled and is under construction. The babies have been moved to a new area, but there's only a wall between them and the noise. Preemies are so sensitive to noise and touch- it literally hurts their nerves/brain. While I was holding Kate, her oxygen was in the 90's and she was doing well when all of a sudden there was a loud construction drilling noise. Kate's alarms immediately went off showing her oxygen had dropped to the low 70's (it's supposed to be between 84-94). Her oxygen saturation level had to be turned up high to get her back to normal again. She quickly recovered and did well after that. It really showed how fragile preemies are.
Today Kate is still doing great, but there was a concern because her sodium had dropped. Her blood work showed it wasn't an infection. It was most likely due to her immature adrenal glands. She was put back on hydrocortisone again to help her sodium. Her bilirubin is continuing to drop, but is still not yet where it needs to be. Her hemoglobin is dropping also and she is right on the line of needing to receive another blood transfusion. She will probably get one soon, but they wanted to get her sodium regulated first. Kate's 4 calorie milk fortifier was stopped yesterday, because her stool wasn't normal (very runny). Today she has done better, so that was most likely the problem. Kate was started on vitamins and iron yesterday also. She weighs 2.1 lbs. now!
Yesterday I went to see Kate and was able to hold her again. After 30 min. the nurse asked if I wanted to keep holding her since she was doing good. I almost had to laugh as I thought, "Is that even a question." Kate did so well, I held her for over an hour. The NICU is being remodeled and is under construction. The babies have been moved to a new area, but there's only a wall between them and the noise. Preemies are so sensitive to noise and touch- it literally hurts their nerves/brain. While I was holding Kate, her oxygen was in the 90's and she was doing well when all of a sudden there was a loud construction drilling noise. Kate's alarms immediately went off showing her oxygen had dropped to the low 70's (it's supposed to be between 84-94). Her oxygen saturation level had to be turned up high to get her back to normal again. She quickly recovered and did well after that. It really showed how fragile preemies are.
Today Kate is still doing great, but there was a concern because her sodium had dropped. Her blood work showed it wasn't an infection. It was most likely due to her immature adrenal glands. She was put back on hydrocortisone again to help her sodium. Her bilirubin is continuing to drop, but is still not yet where it needs to be. Her hemoglobin is dropping also and she is right on the line of needing to receive another blood transfusion. She will probably get one soon, but they wanted to get her sodium regulated first. Kate's 4 calorie milk fortifier was stopped yesterday, because her stool wasn't normal (very runny). Today she has done better, so that was most likely the problem. Kate was started on vitamins and iron yesterday also. She weighs 2.1 lbs. now!
Saturday, September 14, 2013
3 Weeks Old!
Kate enjoyed her vacation day yesterday(no tests)! She stayed on the same settings on the vent and did well. Yesterday she turned 3 weeks old- for the most part time is passing by quickly.
Today Kate's bilirubin test came back better at 4.5 and it had dropped from 5.4 two days ago. Hopefully she won't need to worry about the lights anymore. They will probably test her again on Monday. She made it to her full feedings today(18 ml) and her Pic line (like an IV) in her left arm was pulled out because she won't need the extra lipids and fluids anymore. We took the kids up today to see her. It was Kale's first time to see Kate. He was excited because he was in with her to see the diaper change, the Pic Line pulled out, and her feeding tube changed. Her nurse put a cute little purple bow in her hair to dress her up for the kids to see.
A great day! Kate is doing so well that they let me hold her today:)!! I was very nervous because she's so fragile, hooked up to so many things, and I worried she wouldn't tolerate it very well. I was able to hold her skin-to-skin for 30 min. Holding her this way is so good for her in many ways. She held her vital signs great, she even had to have her oxygen lowered from a 34 to a 27. She was so peaceful and just slept. She made my heart happy-nothing better! After my time was up the nurse said she was doing so well that I could hold her for 15 min. more, but she must have jinxed her. At that point her oxygen dropped and she was having a hard time bringing it back up. She was put in her incubator on her tummy and was soon stable again.
Today Kate's bilirubin test came back better at 4.5 and it had dropped from 5.4 two days ago. Hopefully she won't need to worry about the lights anymore. They will probably test her again on Monday. She made it to her full feedings today(18 ml) and her Pic line (like an IV) in her left arm was pulled out because she won't need the extra lipids and fluids anymore. We took the kids up today to see her. It was Kale's first time to see Kate. He was excited because he was in with her to see the diaper change, the Pic Line pulled out, and her feeding tube changed. Her nurse put a cute little purple bow in her hair to dress her up for the kids to see.
A great day! Kate is doing so well that they let me hold her today:)!! I was very nervous because she's so fragile, hooked up to so many things, and I worried she wouldn't tolerate it very well. I was able to hold her skin-to-skin for 30 min. Holding her this way is so good for her in many ways. She held her vital signs great, she even had to have her oxygen lowered from a 34 to a 27. She was so peaceful and just slept. She made my heart happy-nothing better! After my time was up the nurse said she was doing so well that I could hold her for 15 min. more, but she must have jinxed her. At that point her oxygen dropped and she was having a hard time bringing it back up. She was put in her incubator on her tummy and was soon stable again.
Her diaper on my hand.
She is almost tube free! The only things left hooked up to her now are her nasal ventilator (the greenish tube across her face), the feeding tube (the tube in her mouth that goes into her tummy), the sensors on her chest for her vital signs (they just stick to her skin), and the CO2 monitor on her right foot.
That is a Binky in her mouth- she does really well sucking on it. Sometimes just sucking on her Binky will wear her out and drop her vital signs.
This cabbage patch doll is the same size as the one I bought for Kate and put by her side in an earlier post. If this doll was Kate- this would be about the size proportion of my 14 month old, Kennadi, holding her.
Our weekly countdown chain- 14 weeks left until her estimated date of December 20th when she comes home.
Kale's first time seeing Kate.
Friday, September 13, 2013
September 12th
Kate's blood gas and x-rays came back normal. She's doing well on the NIPV. Hopefully she will be able to hang in there and stay on it. One of the first things today the doctor and nurses told me was that she is feisty and has a good strong cry. For being so tiny she can be heard clear across the room- which is pretty big. It was so good to hear her cry. I was able to spend a couple hours with her- she seemed like she was comfortable. The respiratory therapist told me possibly next week I might be able to hold Kate, if she is stable on the NIPV. (She can't be held when she's on the other ventilator.) That was a surprise- I thought I was still a month away from being able to do that! She told me Kate is amazing- that most 25 week babies are on the ventilator for at least a month. I know so many prayers in her behalf, her strong spirit, and the "Angel's Veil" have helped her do this well so far! The doctor said she was going to give Kate a vacation tomorrow. She wasn't going to run any tests on her and just let her have a day of rest. No foot poking for blood gas and bilirubin tests- no x-rays. Her bilirubin is creeping back up again- but they want to see if she can bring it back down. She will be starting her full feedings on Friday and discontinue her IV fluids. She gets a bath every few days- which consists of really quick cotton ball wipe downs.
The three biggest organs/systems they worry about with preemie's are their brains, lungs, and digestive systems. Kate is jumping hurdles! Her lungs are definitely getting stronger. She is doing great digesting my milk. Hopefully she'll start putting on some weight now! She should gain about 15 grams a day. They have added 4 calories per ml to my milk to fortify it (it's been figured that generally mother's milk is 20 calories- she is now getting 24 calories). Her brain looks good with no brain bleeds. Besides that there is not much they can do to predict her brain development until she grows and passes off developmental milestones throughout the next two years. The other biggest concern for preemies is infections- that is something we will have to constantly worry about and watch out for. If she can stay on the NIPV and not go back to the tubes being in her lungs, her chances of infections drops by 50%.
The three biggest organs/systems they worry about with preemie's are their brains, lungs, and digestive systems. Kate is jumping hurdles! Her lungs are definitely getting stronger. She is doing great digesting my milk. Hopefully she'll start putting on some weight now! She should gain about 15 grams a day. They have added 4 calories per ml to my milk to fortify it (it's been figured that generally mother's milk is 20 calories- she is now getting 24 calories). Her brain looks good with no brain bleeds. Besides that there is not much they can do to predict her brain development until she grows and passes off developmental milestones throughout the next two years. The other biggest concern for preemies is infections- that is something we will have to constantly worry about and watch out for. If she can stay on the NIPV and not go back to the tubes being in her lungs, her chances of infections drops by 50%.
She doesn't liked to be bugged.
Her favorite way to sleep- on her tummy.
Wednesday, September 11, 2013
September 11th
Great day- Kate was moved to the NIPV (nasal ventilator)! Clinically she did very well and kept her vital signs steady. In the morning they are going to do a blood gas test to check her oxygen and an x-ray to see how her lungs are doing. I'm excited she's finally made it back to this. She could still be switched back and forth several more times, but this is a good step forward. I can't wait to see her with the tubes out of her throat! One of the hardest things about that ventilator for me, was to see her cry. The tubes blocked her vocal cords so she couldn't make any noise when she cried. She would get so agitated when she would get her diaper changed or had different procedures done. It was so sad to see her upset facial expressions and her mouth open to make a soundless cry- a dry cry. It's funny how we take those little things for granted- but her cry is something I can't wait to hear. (I'm sure in the middle of the night 6 months from now- I'll be thinking differently.:)
Tuesday, September 10, 2013
A little laugh
Pray before you Poop
So Kinnli still struggles with potty accidents. The other day I could tell she had to go. I told her to run and get into the bathroom. She responded by saying "Wait, I have to pray before I poop." Frustrated, I told her she didn't have time to pray- she needed to HURRY and go potty. She went into the bathroom (walking like a penguin:). She yelled out to me, "I just prayed and I am going to go poop now." I asked her what she prayed for and she said, "I prayed I wouldn't poop my pants." And she didn't...... She makes me laugh everyday!
September 10th
I've been looking for a stuffed animal that I could use to compare size with Kate as she grows and can have as a keep sake. It wasn't very easy finding something that would be about her size. I found this small cabbage patch doll and figured it would be close. It seemed so little when I bought it, but when I put it next to her tonight it looked pretty big.
What a great night! My mom and I went to see Kate this evening. Her left eye has finally opened. After we did her care and swaddled her. I sat next to her incubator for just a minute and talked to her. She was so tired, but she kept opening her eyes to look at me. Her little forehead would wrinkle up as she lifted her eyes to search for where my voice was coming from. At this age, she can't see much but she was very responsive to my voice. She was so sweet and cute!
When I changed Kate's diaper tonight I only lifted her bum up about an inch so I could use a wet wipe to clean her. This caused her to have a "Brady" (brachacardia sp?) when her heart rate drops. When her legs are lifted the blood rushes to the heart and drops her blood pressure. It can also cause brain bleeds too. She recovered pretty quick from it- but now I'm paranoid about doing her diaper change.
The nurse tonight said it's rare to see babies this early with so much hair and that it's so dark. She has more hair than all my other babies, except for Kale (he had a lot of dark hair.) Kate weighed 870 grams tonight. She's up to 11 ml on her feedings. She's doing ok with her vitals and oxygen-still about the same as she has been the last few days. These are good days- days to let her grow and get stronger! I feel so amazed and blessed that she's my baby!
Monday, September 9, 2013
September 9th
Kate has had a good day. The bilirubin lights were removed, so she was swaddled again and very relaxed. One of her settings on the ventilator was weaned down- we are still hoping to get her switched over to the NIPV (nasal ventilator) this week. She has done so well with her feedings that a milk fortifier has been added to the milk to see if she can tolerate it. She's up to 10 mls tonight on her feedings.
Today we stayed home to celebrate Kam's birthday. It's hard to believe it's been 8 yrs. since he was in the same spot that Kate is now. It's been neat to meet back up with some of the nurses and doctors that took care of and remember him. It's such a relief to know that he's done so well and that most babies do. Right now it doesn't seem like December will ever come, but I know it won't be long before we will look back at this experience and think how quickly it passed too.
Today we stayed home to celebrate Kam's birthday. It's hard to believe it's been 8 yrs. since he was in the same spot that Kate is now. It's been neat to meet back up with some of the nurses and doctors that took care of and remember him. It's such a relief to know that he's done so well and that most babies do. Right now it doesn't seem like December will ever come, but I know it won't be long before we will look back at this experience and think how quickly it passed too.
Sunday, September 8, 2013
September 8th
We were going to take the kids up to see Kate today, but I passed on the little flu bug that I had for the last two days. Josh stayed home with the kids and I went up to see her. Grandma Wilde arrived about the same time I did. It was perfect timing for Kate's care. Her care happens every 4 hrs.- a diaper change, temperature check, roll her to another side, and her feeding through a tube. It's about the only time I get to really see and touch her.
Kate was pretty agitated after her care. She had been rolled over from her tummy to her back and didn't like this much, because she wasn't swaddled. Her arms and legs kept squirming all over. The nurse considered giving her Versed to calm her, but told me I could try containment touch. I put a glove on and put one hand over her legs to hold them still. Usually she keeps her hands up by her face, but she reached down with them and touched my hand instead. She calmed pretty quickly and her vital signs stabilized for the 20 min. that I did this. I had to leave because of shift change and I had already been there for a couple hours. I don't think I would ever get bored just sitting there watching her. One of my favorite things to do with my babies is to rock them to sleep. I love to just hold them and stare at them. There's something so sweet and peaceful about sleeping babies. It's the same with Kate- I just wish I could hold and cuddle her!
Saturday, September 7, 2013
No news is good news...
Today I missed the call from the doctor, but she left a message that said Kate was doing good and if I had any questions to give her a call. Usually if the doctor isn't able to get a hold of me he/she calls Josh because there is something pressing we need to know about or agree to. It was so nice to just get a short, sweet message. As my mom would say, "No news is good news".
I called Kate's nurse tonight to see how she did throughout the day. She said Kate has been great. Her settings on the vent. have been lowered and they are still hoping to move her over to the nasal ventilator soon. She still has a little fluid retention. She should continue to loose it and they expect that she will drop a bit more weight. She is 875 grams right now (1.15 lbs.) Kate is being fed 6 ml. every 3 hrs. She will slowly increase to what is considered a full feeding of 16 ml. When she reaches that volume, her IV fluid will be discontinued.
I didn't feel well yesterday and today, so we didn't go see Kate. We don't want to take any kind of sickness into the NICU. It was good today to have some time for Josh and I to work on the finishing touches at the preschool. I have back to school night next week and start teaching on the 16th. I'm excited to teach- I love my preschoolers-my little people! It's only 2x a week for 5 hrs. It will be just enough to keep me busy, but not crazy. I think it will help pass the time from now until Christmas-when Kate comes home!
I called Kate's nurse tonight to see how she did throughout the day. She said Kate has been great. Her settings on the vent. have been lowered and they are still hoping to move her over to the nasal ventilator soon. She still has a little fluid retention. She should continue to loose it and they expect that she will drop a bit more weight. She is 875 grams right now (1.15 lbs.) Kate is being fed 6 ml. every 3 hrs. She will slowly increase to what is considered a full feeding of 16 ml. When she reaches that volume, her IV fluid will be discontinued.
I didn't feel well yesterday and today, so we didn't go see Kate. We don't want to take any kind of sickness into the NICU. It was good today to have some time for Josh and I to work on the finishing touches at the preschool. I have back to school night next week and start teaching on the 16th. I'm excited to teach- I love my preschoolers-my little people! It's only 2x a week for 5 hrs. It will be just enough to keep me busy, but not crazy. I think it will help pass the time from now until Christmas-when Kate comes home!
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