Saturday, October 30, 2010
Saturday, October 30, 2010 1:57 PM, EDTTori did well with her feeds yesterday, taking between 10 and 30 ml each time. Unfortunately it isn't as much as they want her to be taking by mouth each time, but it is better than she has been doing. It is so frustrating to sit there with her and know that her eating is all that is keeping her from coming home. Unfortunately when she took the 30 ml for me at 5 PM, she had a brady episode. It is scary to be feeding her and have her face turn blue and her hold her breath.
I can't believe that she is already a month old. Honestly the entire month of October is a complete blur. The days all melt together, the faces of the doctors and nurses, all the same. I hate not having my baby with me...to realize that she has been here an entire month and I have never laid with her in my bed, never woken up at night to feed her, that her brothers and sister Sophia have never even met her. I just want it all to be over. I want her home with us.
I think that the nesting I should have done while I was pregnant has hit! I made William and Sophia help me clean up their bedroom/playroom and move stuff around. Then I decided to rip up the carpet off the floor, it was horribly stained and really bothering me....well now the floor is FREEZING cold, guess I will have to try to find some area rugs to throw over the floor. Sophia LOVES the floor now, because her bouncy ball will bounce all the way to the ceiling, just another reason for me to recover the floor!
Friday, October 29, 2010
Friday, October 29, 2010 9:07 AM, EDTTori was awake for almost 2 hours when we visited yesterday! She took 34 ml, her personal best, at her 5 PM feed! We were so excited! She didn't spit anything up! 2 of her room mates, Lucas and Abigail, are having surgery today, so if you could cover them in prayer, we would much appreciate it! I know I have some powerful prayer warriors following Tori's journey and praying for her!
Thursday, October 28, 2010
Thursday, October 28, 2010 8:18 AM, CDTBad mommy hasn't updated Tori's page!
On Tuesday Tori did her best job ever with eating! 30 ml...one full ounce! We were so very excited!
Yesterday (Wednesday) she didn't do nearly as well and stopped breathing during 2 of her feeds. It was so frustrating, since she had done so well the day before! I spend 6 hours with her at the hospital yesterday, just holding and feeding her. I want her home so badly! We gave her her second bath yesterday, she loves the tub and is completely relaxed while you bath her, so totally different than my other kids who kicked and screamed when you put them in the tub!
We talked some with the resident about criteria for discharge. They want Tori to be taking 85% of her total volume BY MOUTH to send her home. I just wanted to cry. I am willing to bring her home with her ng tube, I feel like they aren't really doing anything for her at the hospital that I can't do at home but they aren't willing to budge. I suspect that an epic battle will soon be waged, I want my daughter HOME!
Monday, October 25, 2010
Monday, October 25, 2010 10:09 PM, EDTWe spent about 6 hours visiting with Tori this afternoon and evening. She was pretty sleepy when we got there and her nurse didn't attempt to feed her by mouth at her 3 PM feeding, but she took 24 ml for me at 6 PM! She didn't choke or drop her sats or brady or turn blue! I probably could have gotten her to take a bit more, but I didn't want to push her and have her spit up! She was very alert for about 1 hr from 5:15 to 6:15 PM and then again from 7:30 to 8:30 PM. It is so nice to interact with her when she is alert, although I love snuggling with her when she is sleeping as well!
The parent meeting went well, it was nice to talk to other parents and we played BABY BINGO! We won a couple of hats for Tori, a quilt, a blanket and also 2 doll outfits (that I brought home for Sophia). Talking with other parents was a nice way to pass the 1/2 hr each night that you have to wait during shift change!
Monday, October 25, 2010 9:03 AM, EDTTori got her first TUB BATH yesterday during our visit! The tubs they use are literally plastic storage containers! She LOVED being in the tub, when Jay put her in the water this calm look came over her, like she remembered being surrounded by water in the womb! She never let out a peep, she loved us washing her and pouring water over her.
They have upped her feeds to 2 ounce every 3 hours. She is tolerating it well. She still spits up every time they give her that stupid vitamin, I requested that they ask the doctors to discontinue the order for it, I don't know that it will happen, but I do know once she is home she will NEVER get it again!
So Tori is doing well, me, well, that's another story. We came home to find my mother cleaning my kitchen. It made me so angry because I had asked the kids to do it and like everything else I have asked them to do lately, it didn't get done. I know my mom was doing it to be nice, but I didn't want her to do it, I guess more accurately I didn't WANT her to HAVE to do it. Of course the kitchen looks great, except for the floor, I refused to let her mop it. The other thing was that I had wanted to go to a pig roast, and she was here and had brought food, so I couldn't leave, so I was upset because I had been looking forward to it. Hannah and Emily went, they took the baked beans that I had made with them. I just went to my bedroom and cried. What a stupid thing to cry about. So even though my mom brought dinner, I didn't eat anything, rather wallowed in self pity. I think I am starting to remember how much I hate post partum hormones!
We will go down to see Tori later today. Monday evenings at 6 PM they have a parent meeting for all the RCNIC parents.
Saturday, October 23, 2010
Saturday, October 23, 2010 2:59 PM, CDTTori did amazing at her noon feed today! She took 24 ml by mouth before she decided that eating and breathing at the same time were too much work! A new BY MOUTH record for Tori! They have upped her feeds to 58 ml, so almost 2 ounces, every 3 hours.
She took something by mouth at every feed since we visited yesterday except at her 6 AM feed. Her night nurse said she was acting like she wanted to gag so she didn't want her spitting up. Most of the time she took about 10 ml by mouth.
I really treasure the time I get to spend with her, I can't wait until she finally gets to come home! If she keeps eating like she has been, hopefully it will be sooner than later!
She is so expressive! Jay has names for most of the expressions she makes, it cracks me up to watch him interact with her. Princess Tori already has daddy wrapped around her teeny tiny pinky finger!
Friday, October 22, 2010
Friday, October 22, 2010 4:51 PM, EDTWe just got back from visiting with Tori! Since we left yesterday after her 6 PM feeding, she has taken something by mouth at each feed! It varied from 6 ml to 18 ml, but it is a HUGE step forward because prior to 6 PM last night, she was typically only taking something by mouth at one feeding per day!
I fed her at 12 PM and she took 11 ml, Jay fed her at 3 PM and she took 6 ml.
She got a sponge bath this afternoon, she didn't seem to mind too much, other than not liking the cool aif hitting her naked body! Her cord fell off yesterday (FINALLY!) so she will get a tub bath soon--they couldn't find a tub to use today so she was only able to get her sponge bath!
Friday, October 22, 2010 7:56 AM, EDTWe spent about 4 hours down at the hospital with Tori yesterday. For the first feeding we were there for, she refused to wake up, so all we got to do was drip milk in next to the pacifer, she only took in 1 ml by mouth, but at her 6 PM feeding SHE WOKE UP and took 13 ml by mouth from her bottle, she did VERY WELL the majority of the time, her heartrate and breathing stayed steady, until the very end where she decided that breathing, sucking and swallowing was too much work and she decided to stop breathing and turn a little blue! She recovered quickly but it was enough that we all decided she needed to be tube fed the remainder of her milk!
She didn't spit up her vitamin! It was the first time she they started her on it that it didn't come back up!
She managed to poop all over the covers again when I changed her. I think she thinks that is her "party trick", as soon as you take the diaper off, she starts pooping! I am not going to complain about poop! I find it kind of funny!
Progress is slow, but I won't complain as long as we aren't moving backwards.
We have the van back thanks to a wonderful family at our church and the kindness of the church itself. It has been so nice the last 2 days to not have to depend on the kids or friends to get us down to see Tori. Every minute I get to spend with her is such a blessing, she really is a miracle!
The therapist said they will work with us again today on feeding her. It seems strange that after 9 other children and 20 years of childcare that we need to be taught how to feed a child! I decided that since she rarely is awake that I would rather work on getting her to take the bottle (and get closer to bringing her home) than I would with putting her to the breast right now since she tires out so quickly. My breast literally ache to have her nurse, hopefully it will become a reality in the near future. For now, the pump and I will continue our love/hate relationship. I am so happy that she is completely on breastmilk, I just wish she was able to get it from the source!
Wednesday, October 20, 2010
Wednesday, October 20, 2010 7:27 PM, EDTTHEY LET TORI NURSE!
Well...technically, she was put to a dry breast (I pummped prior to her nursing) and she "nursed" while they tube fed her, so she would associate sucking with a full stomach! She latched on beautifully and sucked well, she seemed to even coordinate the sucking with breathing (of course she wasn't swallowing at the same time). Even though it has taken us 3 weeks, it felt so amazing to have her at my breast! One of the therapist said that we can actually try to let her nurse tomorrow, that we will weigh her before she nurses and then after she nurses to see if she actually takes anything in. They are now offering her a bottle at each of her feedings, although if she is tired, they aren't supposed to "force" her, just go ahead a tube feed her.
Jay snapped a ton of pictures, but I think there is only one I can share without them flagging them! So here is my peanuts head as she nuzzles at mama's breast for the very first time!
Tuesday, October 19, 2010
Tuesday, October 19, 2010 3:49 PM, EDTTori drank 10 ml of breastmilk from a bottle today at her noon feeding! The speech therapist came and worked with her and we had to use a special hold and tilt the bottle so a whole bunch didn't flow into her mouth at once, since she can't suck, swallow and breath all at the same time! She spit up a bit, but I really think it is that horrible vitamin they gave her at the beginning of her gravity feeding.
She was awake and alert for about 45 minutes of our visit. It is so nice to visit with her and have her be awake and alert!
Tuesday, October 19, 2010 9:01 AM, EDTWe had an amazing visit with Tori last night! We dropped Hannah at work and borrowed her car to go down and see her. When we got there, a fellow homeschooling dad came down to visit. He pastors a small church in Covington and he came to offer prayer with us for Tori. After his visit we spent a few more hours with Tori and she was awake for almost an HOUR! We couldn't believe it. She is usually only alert for a few minutes at a time, but she was so awake and alert! She was really sucking on her pacifer, hopefully that will translate into good news when the speech and occupational therapists work with her on feeding! She is up to 50 ML every 3 hours and is feeding at 9, 12, 3 and 6. She spit a little yesterday in the afternoon (I personally think it is the vitamin they are giving her) but none last night or overnight!
Yesterday afternoon I was just hanging out, waiting to go see Tori and dreading having to pump. I have such a love/hate relationship with that stupid thing! Jay brought in the mail and there was a package for me. I wasn't expecting anything but eagerly opened it. I was totally surprised by what was inside. A mom from one of the email lists I am part of sent me a a hands free nursing bra to use with a breast pump. My initial
reaction was to chuckle and then I thought, what the heck, I have to try this......well 20 minutes later I think I could be the newest spokeswoman for the product....it was so comfortable and worked to well to hold the flanges in place (a better seal than I usually get when hand holding), I ended up with more milk and also was able to continue pumping for about 5 minutes after the milk seemed to "stop" (which they have been encouraging me to do to increase supply, but I
never do because I am uncomfortable). It has to be one of the most thoughtful gifts I have ever received and certainly something I would have never considered buying for myself (especially given our current financial situation). I will think of her and her kindness every time I use it (which would happen to be at least 6 if not 7 times a day!, I usually sleep through the one time at night I should pump!).
I am hoping to go see Tori in a few hours if the girls are up for visiting her. If not, I may bum a ride with a friend whose son has an appointment at Children's later this afternoon!
Sunday, October 17, 2010
Sunday, October 17, 2010 1:40 PM, EDTBack from our visit. They kept Tori's feeds the same for today, but if she continues to spit up, they are going to go back to feeding her with the pump over 1 hr. She doesn't seem upset or anything when she spits up, she doesn't even wake up sometimes!
She gained a little weight overnight, I think about an ounce!
Her nurse had her dressed in an adorable little dress today! She really is a beautiful baby! Jay and I spent the visit cuddling with her and trying to make her wake up, but she wanted nothing to do with being awake and preferred to just snooze in our arms!
I promised Sophia and William I would get them to church next weekend, they haven't gone the last 2 weeks and they are really missing their church friends and Sunday school. Things are so chaotic here still, I really plan to try to get more things back to normal this upcoming week. I am starting to feel a bit more human, my incision looks great and the bladder is working (although it still feels rather weird). I can't believe that the month of October is already half way over and I can barely remember that the month has even changed, it really is totally and completely a blur!
Continued prayers are much appreciated!
Sunday, October 17, 2010 8:27 AM, CDTJust spoke to Kristina (Tori's weekend day nurse) who said Tori spit up quite a bit overnight, enough that she is holding back on her feeds. She also had a lot of food still in her belly when they checked (yesterday before the changes she was only holding a few ML in her stomach, since the change she is holding 15-20 ML)...so with the 2 things together, they are waiting for the doctors to do rounds to see if they are going to make any changes.
Jay and I are heading out to visit with her. I guess the advantage to have a nocturnal teen is that she doesn't need her car early in the morning!
Saturday, October 16, 2010
Saturday, October 16, 2010 1:19 PM, EDTSince we weren't able to visit Tori yesterday, we went down first thing this morning to see her! She is now up to 5 lb 8 oz! While we were there she got her first gravis (?) tube feed, where rather than being pushed in by a pump, the food goes in using gravity. It took about 15 minutes for her whole 49 ml feed to get into her belly, much faster than the 1hr she had been used to. She spit up just a tiny bit but otherwise tolerated it very well! Another step closer to eating by mouth! I believe that the OT and Speech Therapist are supposed to start working with her on Monday to progress towards feeding by mouth, but won't know anything for sure until they are back at the hospital Monday!
Apparently sometime after we left Thursday afternoon, Tori pulled out her feeding tube. No one bothered to tell me any of the times I called Thursday or Friday, but now her feeding tube is in her other nostril. Hopefully she will leave it alone, since it isn't too pleasant for her to have a new one placed!
Last night she had a huge blow out poop while her nurse was changing her....poop went everywhere....in her crib, on the wall, all over her clothes....she shocked herself so much that she even spit up during the whole thing! I explained to her today that such behavior would not be acceptable once she got home! I don't mind poopy diapers, but poop everywhere is not acceptable!
The van is supposed to be ready sometime Monday or Tuesday so until then our visitation schedule with Tori will depend on who can get us there when....I know she is in wonderful hands and being surrounded by prayer all the time, I take such comfort in that!
Friday, October 15, 2010
Friday, October 15, 2010 10:56 AM, EDTMy friend Nancy came and took me to see Tori yesterday! She brought her camera and got some great shots of Tori, I will share them once she gets them to me.....of course I might not show the ones of me with her, I hate having my picture taken! We stopped and had lunch at PF Chang's on the way (I had a coupon for a free lunch and just ordered water to drink, Nancy picked up the tip so I ate for FREE!)! It was my first meal out in months, since Jay and I went out for our anniversary using a gift card someone gave us back in July. It felt nice to just sit and have lunch with a friend. She was so funny though, when we got to see Tori, I realize that tiny babies scare her! She is great at taking pictures of them, she just doesn't want to touch them!
I am overwhelmed with the generosity of our church and a family at our church. Yesterday after I posted about the van breaking down and not being able to see Tori because of it, the phone rang and we received an offer to help fix the van. I just sat and cried. I can't believe that people are so willing to go out of their way for people they don't even know. I hate being the person that needs help, it is so against my nature to the person looking for help, but this has all shown me that God is watching over me. Jay took the van over this morning, hopefully the exhaust issue is fixable! We had another family offer us use of a car for the weekend if the van is still not drivable. Like I said, I feel nothing but blessed right now!
The only real changes with Tori is that they are increased the number of calories she is taking in. She is being fed over 1 hr now instead of over 2 hrs, getting closer to being able to try to feed her by mouth and she hasn't spit up since Jay and I visited with her on Wednesday! They also removed her PICC line, her arm seems a little tender, but she seems to like her new added mobility of being able to move it a bit more!
Thursday, October 14, 2010
Thursday, October 14, 2010 5:46 AM, EDTJust got off the phone with Tori's nurse, she did well overnight, no spitting up, she had a few poopy diapers and she only had a couple brady episodes.....
We went to visit yesterday afternoon and were a bit worried because Tori spit up twice. Not a lot, but enough that it worried us! With moving to the consolidated feeds, it was to be expected, but everything seems to be magnified when dealing with her. I would have never worried if one of the other kids spit up, especially the small anount she did, but with her, there is a heightened sense of anxiety!
We also found out that it will probably be next Monday at the earliest when we get the results of the CF test. Whatever the results are, they are, there is nothing I can do to change it, but I really just want to know.
On the way to the hospital the van started acting up. We think it is an exhaust issue, we sounded like a souped up drag racer clunking home on the expressway, windows down despite the rain so that the exhaust fumes didn't overpower us, but it means that I might not get to visit with her since that is the only vehicle we have and we don't have the money to fix it. I will have to do some problem solving later today to figure out how we are going to continue to visit with her. I really don't think I can handle much more of this! They say God doesn't give you more than you can handle, but I am starting to wonder why he thinks I am so darn competent!
Not the best picture (I can't figure out why it looks so blown out near Jay's hands) but I loved Daddy and Tori in this picture!
Wednesday, October 13, 2010
Wednesday, October 13, 2010 1:43 PM, CDTBad mommy forgot to update Tori's page this morning!
She has moved to consolidated feeds...meaning she will get the same volume (1 1/2 ounces) but over 2 hours instead of 3 hours. If she tolerates that, they will keep decreasing the time until her stomach can handle the feed in 30 minutes....at that point they will start trying to feed her by mouth (if I understand correctly!).
They are leaving her PICC line in for one more day, in case she starts "stooling out" when the milk just passes through without digesting on the new shorter schedule. If she doesn't stool out today, they will remove it tomorrow! A HUGE STEP FORWARD!
Still waiting on the results of the CF test, apparently they misinformed us when they said it takes a week for results, but no one seems to be able to tell us how long it takes, hoping to track down a timeline today!
Heading out in a bit for a visit! We have found late afternoon to be her most alert time and want to take advantage of it! We got to kangaroo for 90 minutes yesterday, Tori loved it and only had one brady episode the whole time...if feels so good to hold her .....it was HEAVEN, made things feel almost "normal", when I closed my eyes and just felt her skin touching my skin....of course the beeping of monitors (mostly other babies, she only had one brady episode the whole time I held her) and the activity of the nurses brought me back to reality every so often......I can't believe that she will be 2 weeks old this afternoon!
Tuesday, October 12, 2010
Tuesday, October 12, 2010 6:30 AM, EDTTori is doing well but seems to have hit a plateau....they have her at her max feed (15 ml per hour--which is 2 ounces every 2 hours) but she isn't digesting everything (or should I more accurately say enough of each feed), so until she starts digesting more we can't move forward--or at least that was the new overnight, you never know if that will change when the doctors do rounds! I guess as long as we aren't moving backwards I can't complain. She is such a doll, she just sleep and when she is awake just looks at you.....She only seems to cry when you change her diaper! Her poop is transitioning to the more typical breastfed baby poop, yellow and seedy! She is continuing to poop well on her own! She is almost back to her birthweight!
We got to do KANGAROO CARE yesterday during our visit. We only did it for about 35 minutes because the chair I was sitting in wasn't very comfortable but you could see an immediate difference in Tori, she only had one brady episode (and it was very short) and she looked so very happy and content. We plan to do kangaroo care with her during each of our upcoming visits as long as she tolerates it!
Kangaroo care is a technique practiced on newborn, usually preterm, infants wherein the infant is held, skin-to-skin, with an adult. Kangaroo care for pre-term infants may be restricted to a few hours per day, but if they are medically stable that time may be extended. Some parents may keep their babies in-arms for many hours per day.
Monday, October 11, 2010
Monday, October 11, 2010 5:41 AM, EDTThey capped Tori's PICC line! She is now completely on BREASTMILK! Guess that means that mama needs to keep up all the pumping, since Tori is now dependent on me for food! They have decided that if she isn't laying on her right side that she is very slow to digest food (it is staying in her gut 2 hrs or more) but that when she is on her right side she is only keeping about 20 minutes worth of her feed in her gut. They said it has something to do with gravity, guess I will believe them and hold her laying to her right.
They are going to start offering her a pacifier dipped in breastmilk to see how she handles it. Babies of her gestational age rarely can coordinate the whole suck, swallow, breath thing and given that she is still bradying (forgetting to breath) every couple of hours we certainly don't want to add another element that stresses her out too quickly!
Bradycardia: Definition: A slower than normal heart rhythm. In newborns, a heart rate is termed bradycardia if it falls below 100 beats per minute in a baby less than 1250 g (2 lb 12 oz) or to less than 80 beats per minute in a bigger baby. Bradycardia is often associated with apnea of permaturity, and when apnea and bradycardia come together they are often called “As and Bs.” When babies are in the NICU, their hearts are monitored, and episodes of bradycardia are treated with stimulation. If bradycardia continues, medications such as caffeine may be used to treat the condition. Pronunciation: BRAY-dee-CAR-dee-uh Also Known As: Bradys, "Bs" (in "As and Bs")
And now onto the daily Laura update! The swelling in my ankles is starting to really go down, there is now definition in my legs below my knees, for days they went straight down from my knees to my ankles with no distinction, but now I can actually see that I have ankle bones! Another step towards feeling human. My incision is still very tender, but I suppose that is to be expected, it is clean and closed, I guess it will just take time.
The food keeps showing up. I am so grateful, words can't even begin to express just how amazing and surrounded by love I feel! The food has all tasted so wonderful (apparently my friends are all very decent cooks!) and knowing that the kids have dinner makes it easier to be away from the house. Jay and I usually just reheat food when we get home, the kids seem to be eating earlier in the evening. They will probably be disappointed when it is back to mom's cooking!
Sunday, October 10, 2010
Sunday, October 10, 2010 12:46 PM, EDTTori did well overnight! They have continued to up her feeds and if things go well by Monday morning, she will be completely off the lipids and only receiving breastmilk! It makes me so happy to even consider that it will be only MY MILK that makes my baby grow and heal from then on out! We have come a long way in a very short time.
Once she is only on breastmilk, they will stop the continuous feeds and go to something called a consolidated feed, where instead of the milk being dripped in continuously, they will feed it to her more quickly (instead on one ounce over 3 hours, they will feed her one ounce over 2 hours, then 1 hour, then 30 minutes--this is if I understand what they have told me correctly, sometimes I get the details out of wack!). After she shows that she can tolerate the consolidated feeds, they will start working on getting her to eat by mouth (she will be offered her feeding and what she can't suck from the bottle will then be fed to her through her ng tube).
She pooped a few times yesterday, again, we are so excited! The poop is dark green, like meconium would be, but much more of a liquid, nothing like the breastfed baby poops I have been used to with the other kids!
We visited with her for about 4 hrs yesterday and then I suddenly felt like a truck ran me over, my stomach was killing me, I was in pain......Jay brought me home and I slept off and on until morning.....maybe I am trying to do too much, but it feels so right to sit with her and hold her.
We plan to head down later this afternoon to spend some time with her! Hopefully we will miss all the Bengals traffic heading into town for the game and the Reds traffic later tonight!
Saturday, October 09, 2010
Saturday, October 9, 2010 7:43 AM, EDTIt's a 3-peat.....or a 3-poop!
I have never been SO OBSESSED with peeing (me) or pooping (Tori). Yesterday was the day I went back to see if my bladder was going to work. I was so scared, could feel a panic attack building as I waiting for the appointment and as they filled my bladder with 150 ml of saline and then ordered me to pee! Talk about PRESSURE.....fill that bladder up and be told to pee with people standing there waiting on you! There were a few minutes there when I thought I wasn't going to be able to void, I started to cry and turned on the water in the sink to drown out my sobs....and lo and behold, the sound of running water.....well, the pee FLOWED! I have NEVER BEEN SO HAPPY to see PEE in my life! The doctor still freaked me out, talked about how sometimes it works the first time but then not after that and about teaching me to self-cath.....believe me I flooded my body with fluids and was trying to pee again as soon as we got to Children's.....so far so good! I am trying to void every few hours because I am freaked out about stressing out my bladder! She also tested me for anemia, saying I am extremely pale, but honestly I am the same color I always am, some of us just can't help that our natural color is ghost white!
Tori had a AMAZING day....they have agressively upped her feeds and she POOPED not once, not twice but THREE TIMES between 4 PM and 9 PM last night! Her first poop without the help of a suppository! 2 weeks ago you would have never been able to convince me that wiping green sticky poop off a baby's butt would have made me so happy! She does seem to be having a lot of food left in her stomach every time they check, but the didn't seem overly concerned. Her belly is still nice and soft and she doesn't seem to be in any pain! Jay and I spent about 5 hours with her and Hannah came and sat with her too for awhile. My mom sat with her while we were at my appointment at Good Sam.
Her weight went up, She is just over 5 lbs now! Hopefully the gaining weight and pooping with be her new pattern!
Waiting a bit and will call for her overnight update!
Friday, October 08, 2010
Friday, October 8, 2010 11:54 AM, EDTSitting at home waiting to head to my appointment for my bladder test and hopefully removal of my catheter.....
Talked to Tori's nurse this morning....they upped her feeds to 4 ML and now will be upping it every 8 hrs (instead of every 12) as long as she continues to tolerate the new volume. In theory that means she will be up to 1/2 ounce of milk an hour by the beginning of the week, which would mean they could possibly cap her PICC line at that time since 1/2 ounce it what she needs to maintain herself (if I understand correctly). She still hasn't pooped without the help of a suppository, but they are hoping that the increased volumes will "force" things into action!
I want everyone to know how much we appreciate the prayers and food. I am completely exhausted by the time we get back home each night, on top of the time at the hospital, the commute is killing me (not that I should complain, many families have to drive much further every day) and knowing the kids are fed is such a weight off both mine and Jay's shoulders. I feel like I have aged a year in the past week.
I broke down on the way home last night.....I had collected some of Tori's memoribilia off her memo board by her crib. One of the things I brought with me was her hat and hospital bracelet from Good Sam that they had removed when she was transferred....I was overwhelmed realizing that she was the only one of my babies that I didn't get to cut their hospital band off of their wrists. Even Brett and William with their NICU stays were never transferred so were released from the hospital with the bands still on.....I don't know why it bothered me so much but it did.
Child Life held their monthly scrapbooking gathering yesterday afternoon, they encouraged me to take an album for Tori and start it.....I found it funny that the one I picked is blue and green, you would think after all the boys, I would have picked pink, but I just loved the print. I can't sit so I didn't do anything but pick out the album and some paper and some special NICU printed sheets they had. I started crying when she told me to come back next month....I DON'T WANT TO BE HERE NEXT MONTH!
We are going to visit Tori after my appointments.....I plan to focus on that to get me through all the tests and such this afternoon! Pray that things go well if you are the praying type!
Thursday, October 07, 2010
Thursday, October 7, 2010 11:53 AM, EDTTalked to Tori's nurse this morning...she is up to 3 ML an hour and they plan to increase her feeds by 1 ML every 12 hours if she continues to tolerate the increased level! Her weight remained steady. Still no poop, but they have ordered a suppository to help her with that, they definitely don't want any food sitting in her gut for too long!
We are going down to visit later today....it is still agony for me to be in the car and the timing of our latest trips have meant sitting in stalled traffic for over an hour getting home, I am usually in tears after 45 minutes. Hopefully the commute will be easier once I have my catheter removed (tomorrow...PLEASE PRAY the bladder works!), but Jay thought we would head into town later today and come home later, hoping to avoid the horrid traffic.
Thursday, October 7, 2010 5:33 AM, EDTI forgot Tori's other bit of news....She got her BIG GIRL bed! That means she can maintain her own body tempertature and most likely won't need any further phototherapy! Not that she seems to notice any difference, but she looks so much smaller in the bigger crib!
Wednesday, October 06, 2010
Wednesday, October 6, 2010 7:16 PM, EDTTori had a GREAT DAY today! She was actually awake for about 2 different 30 minute periods, eyes open and taking everything in. She falls asleep the minute you pick her up to snuggle, its like she knows she is safe if you are holding her, but when she is laying in her bed, she likes to see what is going on around her! Jay and I both just sat there are marveled at our little miracle.
They increased her feeds today...she is now getting 2ml an hour....so just over 1 1/2 ounces of mama's milk a day! She hasn't pooped since they increased her feeds, but they nurse says her tummy is nice and soft and that there are good bowel sounds!
I even managed to sneak away from her crib for a 10 minute massage, they offer them to the parents every Wednesday. Usually I can't stand to have people touch me, but for some reason, today it felt so right! I actually felt LESS TENSE when she was finished!
We are so surrounded by love and friends. I can feel the healing power of prayer around us. One of my friends husband's who works at the hospital stopped in to see up tonight, it was nice to know we have "friends" on the inside who are willing to help! Food and other items keep showing up at the house, a real blessing!
Tori wore a sleeper today! We have to get her some clothes....she is too long for preemie clothes, but the nurse says she thinks newborn items will work....Hannah should have fun shopping for her!
Wednesday, October 6, 2010 7:49 AM, EDTAccording to her nurse, Tori had a good night overnight! She digested her food and had very little aspirite (sp) which is undigested milk that they draw back every 4 hrs! No news on if she pooped or not, but her weight remained steady and her bili level is down to 5.6, I am surprised, she looks really yellow to me, but the level is low, so I am HAPPY!
I have 2 appointments today over at Good Sam and then will be going down to visit with her. Can't wait to see my princess!
Tuesday, October 05, 2010
Tuesday, October 5, 2010 8:31 PM, EDTWe spent all afternoon with Tori! They decided to try feeding her again today and SO FAR SO GOOD! As of 6 PM when we left she was digesting her milk and not having any bile back up. It is going to be a slow process, but progress it is! She is getting 1 ml per hour, hopefully she will continue to tolerate her feeding overnight.
They had a therapist evaluate her today. They are asking that we keep her head covered (means I need to go buy some hats!), keep her swaddled and try to keep her environment quiet because she seems very sensitive to stimuli! I am not sure being born into a family with 9 older siblings is a good plan for a "sensitive" baby!
She is quite yellow today....I won't be surprised if she ends up back under the lights tomorow!
Tuesday, October 5, 2010 7:49 AM, EDTTalked to Tori's night nurse about 4 AM and SHE POOPED! They had to give her a suppository but it is POOP and it CAME OUT! Maybe, just maybe her bowel is going to work!
She lost some weight, so now is below 5 lbs. She said she slept most of the night and gets fussy when her paci isn't in her mouth, she has a strong suck, so hopefully it will translate into feeding success once her gut is healed!
Monday, October 04, 2010
Monday, October 4, 2010 8:21 PM, EDTFor every step forward, we take 2 steps back.....
They started feeds this morning....1 ml per hour......Tori seemed so happy and content when we got to the hospital. At around 6 PM they "pulled" the feeds from her stomach to see if she was digesting it and they got back snotty looking green bile, not what they wanted. They did an xray and there is distension in the bowel. So they are not going to feed her and see if the distension goes down.....
They are also drawing blood overnight for one of the CF tests. It will take a week to get the results of that test back.
Good news was we got to hold her the whole time we were there and she was incredible content! We even got to see her with her eyes open!
Continued prayers are much appreciated! We so appreciate our friends gathering around us and lifting us up during this difficult time. The food, prayers, gift cards, offer...I cry just sitting here thinking of the outpouring of love our family is being showered with......
Monday, October 4, 2010 10:48 AM, EDTJay just talked to the resident at the hospital. ...they are going to start trying to feed her today....1 ml every hour (so less than an ounce a day) so pryers are much appreciated that things go well with this new step. She is still off her vent and breathing room air and was taking out from under her bili lights this morning (but is expected to most likely need to go back under tomorrow since bili levels especially in preemies tend to rebound!). The other kids all were jaundice, so the whole bili light/bili level thing is nothing new to us, Jay and I just keep looking at each other when they say her numbers and kind of shrug since they seem "low" compared to what we were used to with the other kids. But since she is so sick, it is just another stress on her little body!
Sunday, October 03, 2010
Sunday, October 3, 2010 7:22 PM, EDTWent to see Tori this afternoon! She is OFF the VENT! Breathing room air! We were so excited to see her face without tubes coming out of it.
So then the bad news....Bad thing is her bilirubin level is elevated so they started phototherapy. We were only able to hold her for a short while before she had to get back under the lights. The bilirubin thing didn't surprise me, all the kids have been jaundice, but some of what followed did....
I got to talk to the resident for the first time. She said the bowel repair went well and that it is a wait and see game, they will try feeding her mid-week and pray that the bowel works and she doesn't get distented. They plan to test her for CF since the problem she has is typically seen in CF kids. I can't really even process that right now....she did say that it would be odd for us to have a CF kid since we have 9 other children and tons of nieces and nephews with no one having CF.
Then the resident mentions that she has a heart murmur. HELLO? When was someone going to mention that one to me? She said she might outgrow it but she might not?
Waiting for the day the good news outweighs the bad news!
She sure is a cutie though! The color on the picture was funky because of the bili lights, so I converted it to black and white.
Saturday, October 02, 2010
Saturday, October 2, 2010 6:42 AM, EDTWhen I woke up at 4 AM I called Tori's nurse to see how she was doing. Her vent setting is down to 30 breaths per minute at 25% oxygen. She said she is waking up some and doing well. Her weight managed to eek back up over 5 lbs!
Friday, October 01, 2010
They gave me a "day pass" Friday and let me go see her...I feel like a convict, a day pass for behaving myself. I got to hold her and so did Jay, she gave her daddy the best birthday present he could have ever asked for (he turned 46 Oct
1).....he is a wreck, worse than even I am, he almost lost us
both, you can tell it is still shaking him to the core! Tori was
stable during our visit but her vent settings had to go up and she was completely drugged out of it, then this afternoon they placed her Pic-line (spelling) so that they can get fluids into her more easily and not have to stick her for all of the blood work (still have to stick her for a few but not as often) but it meant giving her more drugs so the nurse said she is out of it tonight. She is just beautiful (of course I may be a bit prejudice!)