I''ve been delinquent updating. Chalk it up to a change in routine that has been keeping us super busy.
We did talk to the pediatrician and both tests qualified as negative for cystic fybrosis. So now we''re 3 for 3. All 3 tests that Caleb has had for cystic fibrosis have tested negative. Yay! And from what I''ve read, once someone tests positive or negative on a sweat chloride test (if administered properly), they''ll always test that way. However, I''ve also found out (from chatting on e-mail with CF parents) that there are a few strains that test negative on the sweat test.
There is one more test that the ped wants us to do... this is because when I asked for speeding up the further testing, it was after noticing that Caleb''s stools were "off". They were nearly normal but not quite normal. They have a stronger smell, are slightly different in color and are slightly mucousy instead of heavily seedy in appearance. It''s just a little off in all those areas but since it is off I wanted it looked into.
So we''re doing a fecal elastase (http://en.wikipedia.org/wiki/Fecal_elastase) test to make sure that his pancrease is sufficient. This is a commom factor among CF patients so this''ll be another way of telling. Unfortunately I''m supposed to collect 100 grams of "formed stool" for this test. And not over the course of a week... it''s supposed to be from one collection time. And then it''s supposed to be frozen and sent to Mayo Clinic. I had not been told this initially so I went into the lab with the largest amount of stool I''d been able to get from a single diaper... only to be told not enough and not frozen. When I heard about the 100 g minimum, I asked if they realized this was for an infant. And formed stool? That just doesn''t happen with BF infants! So they called Mayo and discovered that 20 g is enough. So I''ll be a while waiting for a full enough diaper to get that much into the bottle. The problem is that most of the stool is absorbed into the diaper right now. It''s just a matter of waiting...
Caleb is however gaining very well. He''s up to Katleyn''s birthweight! Doesn''t that sound odd?
We weighed him Thursday when we were at the hospital finding out about the stool stuff and he was 10 pounds 10 ounces. That was 11 ounces in 10 days. So based on that, he''d probably weigh in at 10 pounds 13 ounces today... right where Katelyn was at birth. Amazing.
He''s also startign to wear 3-6 month clothes. He''s simply outgrowing a lot of his 0-3 sleepers... but not the separate shirt/pant outfits or onsies.
He''s definitely eating well. For a few days (and part of why I didn''t post) he was eating in a 20 minutes on/5 or 10 minutes off pattern. All. Day. Long.
Yep... didn''t get much done those days!
And then the sleep... he regularly "cluster feeds" until after midnight which means that I don''t get to sleep until after midnight either... and then I get to get up with the older two kids get up...
Not a recipie for a well rested mommy!
But things are evening out again. And we''re getting into the "school" schedule with speech therapy, Bible study and MOPS. It''s a fun schedule and Caleb got over the constant nursing just in time. Now he''s willing to wait a little so that I can drive places. And I''ve discovered that when I need a break from nursing, I can snuggle him into a sling and he''ll happily sleep.
I talked to the nurse at the pediatricians office to see if results were back from Caleb''s sweat test. Standard disclaimers apply because I haven''t discussed this with the pediatrician yet but... it appears that the results are negative. Here''s a webpage describing the sweat test and results...
"Newborn babies usually cannot produce enough sweat for a sweat test (at least 50 mg needs to be collected in a 45-minute period), so an IRT (immunoreactive trypsinogen test) may be done instead. If enough sweat can be collected from a newborn or infant less than 3 months old, a concentration greater than 40 mmol per litre is indicative of CF."
They did the test on both arms...
Sweat Chloride: 6
Sweat Chloride: 12
I asked the nurse if she knew if the second volume was large enough to make the test valid or not on that arm and she said she didn''t know but that if a value is abnormal, it shows up on her screen in red and nothing about these results was red. That is wonderful news. She also mentioned that there was no baseline for the volume but the baseline (what they''re looking for as a good result) for the sweat chloride was 0-40.
I''m waiting to talk to the ped to see if we need to redo the test or not based on the second volume being low but so far I amd very relieved about the results. It looks like the first was definitely negative even if the second was inconclusive.
We just returned from the sweat test. They did the test twice... one on each arm. One arm might have barely had enough sweat collected, the other definitely did. Thank you for your prayers in that regard. Please continue to pray that the test is negative.
The machine that tests the sweat is not currently working but we were told that it might be fixed this afternoon. If so, we''ll have the test results this afternoon. If not, then it should be sometime this week.
Caleb''s sweat test will be on Wednesday the 20th at 10:00 am.
Please pray that:
Caleb sweats enough to have a conclusive result
The test is negative
That his pancreas be working properly
We made a milk delivery today. Did you know that breastmilk is tax deductible if you donate it? I didn''t, but it is.
While we were there I weighed Caleb using their scale to get a weight for him when we expected he''d be born. He was 9 pounds, 15.5 ounces. I was expecting around 10 pounds because he was reminding me of how Katelyn felt in my arms when she was born.
I''ve been told that disposables hold more liquid then cloth. Then I''ve been told the opposite also. From different people, of course.
Apparently Caleb has a super sized bladder though because neither was cutting it for a while here. I got out my Fuzzi Bunz but must have packed some into a different box becuase I don''t have as many as I should. So occasionally I''ve been using disposables. And it''s nice to put a few disposables into the car for "emergency" diaper changes so that I don''t have to leave one of my cloth ones there and essentually have it out of commision.
Unfortunately everything has leaked. I''ve been going through clothing changes nearly every single diaper change. The advantage with the Fuzzi Bunz though is that even if they leaked liquid, they didn''t leak poop. So at least I wasn''t having to clean yellow stains off the clothes in addition to washing.
Then I remembered... duh... double up the inserts! For those who aren''t familiar with the FB diapers, they have these inserts that are absorbent that fit into a sort of pocket formed by fleece and a waterproof material. The fleece keeps the liquid away from the baby, the waterproof layer keeps the liquid from getting to the clothes. So cloth diapering with no plastic pants... gotta love that! And snaps instead of pins. Even better. No accidently stabbing the baby with the safety pin.
So I put two inserts in instead of one and so far today has been leak free. Yay! Sure, I''m washing diapers more often but I don''t have to worry about stains with them and I don''t have to fold them either. So diaper laundry isn''t hard.
I set him down for a minute and set him on his tummy. He was hungry and wanted to eat so he got mad and flipped himself over on to his back.
And to answer any questions.. Katelyn and Conner were not nearby during any of this. I was upstairs, they were downstairs.
I had just changed his diaper and was cleaning up. Then I set him down again and made his siblings lunch before feeding him. Poor guy... he''s not too happy with me right now since I made him wait for his lunch...
What he''s not thinking about is that I *just* finished feeding him his breakfast when I went up to change his diaper for him! This little guy just keeps eating and eating and eating and eating!
I''ll weigh him this weekend and see what he weighs on the date we expected him to arrive. He should be over 9 pounds by then.
I thought Bible Study started this week so I got the kids dressed and in the van. When we got to church though (appropriately early, I might add)there was no one there. I pulled out my Bible and checked the date on the flier... it starts next week. So I guess this was a dress rehearsal.
We went to the library instead and that made the kids very happy.
We''re homeschooling preschool here. I have no clue if we''ll homeschool beyond preschool. But isn''t it sad that in today''s society preschool is so expected of children that I''m actually referring to myself as homeschooling it? I find that ironic. To me this is just normal stuff that you''d do with a young child.
We bought Katelyn a really neat workbook that has all sorts of worksheets for her to do. Boy, it''s a good job no one is grading this. Katelyn is working on mazes right now and it''s interesting listening to her explain what she''s doing. For example, there was a maze asking her to help the butterfly find a flower. Along the way were various dead ends including a bird feeder, a bird bath and stuff like that. She decided to intentionally stop at the birdbath because as she explained, the butterfly needed a drink before it went to the flower. It was "berry thirsty". (She watched Strawberry Shortcake a few days ago so everything is Berry instead of Very.)
Conner is sitting at the table coloring in a coloring magazine that a friend sent me for the kids. Everytime that he colors a little he says, "Did iiiiiiiiittt!" because Katelyn is saying, "We did it!" when she finishes a maze.
Caleb is finally sleeping a little. This little guy is growing well but has an odd feeding schedule. It is approximately 2 hours eating and then 2 hours sleeping. All day. He only wakes up once or twice during the night though so that is a blessing. But his daily schedule makes it interesting to get much of anything done around the house. The kids are doing fairly well with that.
Last night during the rainstorm Eric and I decided to take the kids out for a ride in the rain. We like to say that it was to let them have fun with the rain and the lightening. But in reality, we wanted to listen to the "Jerry Doyle" show on the radio. Jerry Doyle played one of our favorite characters on Babylon 5. Mr. Garibaldi.
While we were out, we stopped at my parents house and while we were there, my dad found a baby opposum. He put it in a basket and then held the basket up to the window so the kids could see it as he spotlighted it with a flashlight. After we watched it for a while he let it go.
So this morning we surfed the internet looking for pictures of ''possums. We found a few of them hanging upside down and a few mom''s with babies but none with the babies in a pouch. But we talked about the babies living in a pouch on the mommy after they''re born. I guess that was our science lesson for the day/week.
Then we had to look at Pandas... Katelyn adores pandas right now. We even found a panda cam but it wasn''t showing any pandas at the time.
The kids are watching Eric install a stairway light in our basement. They are very excited about "helping" him. As he unboxed the light, part of it was wrapped in bubble wrap. Katelyn saw it and started squealing with glee (complete with arms raised in victory) because there was "Bubble Pop!"
Both kids are watching Eric while playing with bubble pop.
Kid''s are so cute in what they say.
When ever we drive by the bike path near our house Katelyn starts chanting: "And walking and walking and walking and walking and walking... and walking [then as we approach the corner] and look at map and find star and walk home." The map is a map of the trail with the star showing where we are on the map. We walk down to there and then walk home. It''s a good walk for the kids before bed.
When we drove into Sam''s Club last time, Conner started cheering, "Pee Jay Pee Jay Pee Jay Pee Jay Pee Jay..." He (and Katelyn) associate Sam''s Club with a certain employee there... PJ. The kid''s are the founding members of the PJ Fan Club. So if you go to our Sam''s Club, look for PJ serving samples and say Hi to him and mention that you know Katelyn, Conner and Caleb. He''ll enjoy chatting with you.
You''ve heard of pet rocks? Conner has a pet ball. This ball is a definite favorite. He carries it around all day (we insist that it stay at home though... we''re concerned about it getting lost if we took it out and about) and even takes it to bed with him.
Last night when we were done working in the basement for the night, we went upstairs and Conner had gotten up and come into our room. This isn''t a big deal because we have a sleeping area all set up for Katelyn and Conner in case they want to come in and sleep in our room. There he was with the ball still in one hand.
I think I need a scrapbook page about the ball!
Tonight we went out and bought big boy underwear for Conner. He was so proud to get it. Starting tomorrow he''ll be in underwear during the morning and until his nap.
Caleb slept so well last night. Except for the little while thit it took his tired mommy to figure out that he wanted a diaper change, not more food. But once I figured that out, he fell right asleep and refused more food. The diaper was so wet that I completely understand his wanting it changed.
Conner woke up around 7 this morning. It was his typical ritual... come in, talk to mom for a bit and then ask for his diaper off so he could go potty to earn a cookie. I tried him in underwear last week for one morning and he did fantastic. It was dry until nap time. I''m going to get him some big boy underwear sometime this week and he can wear it in the mornings. He''s keeping a nearly dry diaper all day so I think he''s ready to give underwear a try.
I have a tooth that chipped a few years ago. The top of it just crubled one evening. I don''t know what caused it and the dentist I went to didn''t know either but he smoothed it over. I asked him at the time if I needed a cap or something to protect it and he said that it was still good enough that a cap wasn''t worth it. Unfortunately I think another chip fell off yesterday and now it''s hurting on and off. It''s like the newest chip is close to a nerve or something. I have an appointment for Thursday to get it looked at. It''s just a small chip but it''s new and that concerns me. I still have no idea what might have caused it though!
We went to IKEA today. I like that store! Caleb has been in need of a dresser. Or rather, I''m tired of trying to keep his clothes neat without one. We found one that we liked enough that we bought two. It''s a smaller 3 door one made of what looks like pine (probably is) and instead of drawer pulls, it has two holes in each drawer. Katelyn and Conner were both having fun using it in the store. We''re going to eventually have both Conner and Caleb in the same room (our 3rd bedroom) and so we bought Conner one to use also so that they match. These dressers won''t last them forever because they are on the small side but they''re a perfect size for now and the price was very nice.
Caleb did the drive well. He rode around in the sling all day. I felt sorry for the moms of infants who were walking around there without a sling, they looked like their arms were exhausted. I did see a few strollers though and one car seat hooked to a shopping cart.
We ate our lunch there and so when we drove home, both kids fell asleep. Conner was asleep before we even left the parking lot.
We weighed Caleb yesterday with a fish scale. It was his due date and we were curious what he''d gotten up to. My mom made a sling out of a towel and tared the scale with the towel on and then we put Caleb into the towel... he weighed in at 8 pounds 7 ounces.
I''m not too surprised by the gain... he''s fitting his 0-3 clothes now very well (but still has room to grow) and he feels heftier. He''s getting more chub to his look too. His arms and legs are still thin looking but his face and head is growing. The arms and legs are definitely longer too based on how he fits the sleepers.
It is strange though to think that he''s *still* smaller then either of the other two kids were at birth! He still has over 2 pounds before he catches up to Katelyn''s birth weight!
We''re going to weigh him again in the middle of the month to see an approximate weight for when he would have been born without the complications. I generally go 2-3 weeks past my due date so I strongly suspect that if I hadn''t had PROM that he''d have been born in mid September.
It''s strange to feel him snuggled in close to me in his sling and then think that if I hadn''t had complications, he''d still be inside right now. I''m really enjoying having him be little longer but I''m also so pleased to see him growing so well.
He''s starting to stay awake more and to watch what''s happening around him. Conner loves this part of having a brother. If he sees Caleb awake and not nursing, Conner will try to engage him in an activity. Usually the activity is to lay next to each other and stare. Conner loves it though and giggles. On Saturday I was doing some organizing in the kids'' room and I set Caleb down safely on a bed. Conner got up there and I was watching him from close by so I just watched to see what he''d do. Conner sat down next to Caleb and tried to pull Caleb over to his lap. He did a pretty gentle job of it. I was impressed. But I stopped that activity before anything bad happened.
Katelyn is really talking up a storm lately. She watched a Strawberry Shortcake vido and kept referring to her toy horse as "Ponypie Pony". Strawberry''s horse is Honeypie Pony. :D Katelyn is also super into Please, Thank You and You''re Welcome. Thanks comes out as Shanks though. Last night we went to a bonfire at my parents'' house and Katelyn pulled our wagon of stuff out to the campsite. She kept saying, "Shank you Conner for pushing the wagon. Shanks very much." Conner was walking behind and occasionally pushing. The trail to the site was slightly uphill the entire way so I was impressed that Katelyn managed to pull it out so well.
Things are finally starting to feel like "normal" around here. We have a chance to get settled into a routine and that is a comfortable feeling. Up until last week things have just been go, go, go... between the NICU and then getting ready for Laura''s wedding it was very busy. Then I was sick last week with a bad cold/cough.
Laura is getting married tomorrow and I''m doing the running around for last minute things for our part of the wedding. Stuff that would have been nice to do earlier but didn''t happen. Hmm... I wondery why? :D
I did a home photo shoot yesterday and the photos are turning into some great scrapbook pages. I only have one completed but you can look at it using the link on the homepage to the scrapbook pages. That''s a nice part of doing this digitally... I can share them immediately.
We finally got a picture of Caleb smiling. We''ve noticed them since he was about a week old but we couldn''t catch it on camera because it was so quick. They do seem to be real smiles and come when he is acting happy. We''ve also been able to entice them a couple of times by tickling his cheek a little or something like that.
We got his one month pictures taken this morning. A little late but I went on the 19th and discovered (after I got there) that I had left the outfit at home. With each of the other two kids we got a picture at 1 month of them in a similiar pose. So I wanted to imitate it for him. It turned out pretty good.
But I must say, I''m happier with the results of the pictures I got yesterday. :D
When things calm down a little after the wedding I''ll put up some of the pictures.
I also think I have a birth announcement picture picked out. So that might get out soon too.
Today has been a wonderfully lazy day. I''ve slept a lot, Eric has slept a lot and even the kids have caught up on sleep.
Caleb has been breathing rough and it was concerning Eric and me but then this morning we finally got some snot out and he''s breathing much better. No fever so I''m not concerned about that. But when we didn''t get snot out with the heavy breathing my mind went to CF and the respiratory issues that people with CF have. I was so relieved to have it get better this morning.
I know that children with CF usually have salty tasting skin - thus the "kiss test" that people keep asking me about - and I have to admit that I taste his forehead regularly... no salt yet!
He''s eating well, pooping well, sleeping fairly well and growing very well. As I hold him he finally feels like what I''m used to a newborn feeling like... hec finally has some heft to him and he doesn''t feel quit so delicate. He looks like he fits his newborn sized clothes and he isn''t swimming as much in his 0-3 stuff. It''s good to see him growing so well.
The other two kids are really enjoying him and interacting with him wonderfully. Conner will fill Caleb in on what''s going on through the day and Katelyn tries very hard to make sure that Caleb is well taken care of.
Conner took yesterday off with the cookie scam. But he was back at it today. We''re not pushing anything, this is all him. But we sure do congratulate him when he''s successful.
Katelyn has her new car seat in the car and loves it. She was very excited to be able to use it yesterday. Conner still needs to take his out of the box. But that''ll happen this week.
Katelyn right now is fascinated by weddings. Her Aunt is getting married so there''ve been various preparation activities going on. Katelyn has decided that she wants to get married and right now her choice of husband is her cousin Josh. He''s her closest male friend her age so that does make sense. She also wants to dance at her Aunt''s wedding because everyone will be in pretty dresses and when Cinderella gets pretty dresses she dances. She calls the dress that she''s wearing to the wedding her Cinderella dress.
Conner thinks he has discovered a great scam... he goes potty on the potty and gets a cookie. So far today he''s asked me to take off his diaper twice so that he could go potty. And he''s earned two cookies!
He''s very happy with this arrangment.
Katelyn is reading Caleb her favorite story. Thomas and the School Trip. He''s sleeping but she''s sure having fun.
We spent some time running through the sprinkler this morning. Katelyn suggested it and when I mentioned that it was a bit chilly outside she said, "I like chilly." So we continued to set up the sprinkler. Caleb sat in the bouncer on the porch and I took lots of pictures. Even Arthur got into the fun by running after the kids. They didn''t get super wet but it was lots of activity and fun.
He went potty while sitting on the potty. This was the first time for him. He earned himself a cookie and is sitting naken in the kitchen enjoying his reward. Katelyn is now drinking as much water as she can so that she can work on her cookie.
Unfortunately, I hadn''t yet discussed with him about pointing things down. So nothing was actually caught in the potty. We had a nice puddle in front. Yep... we already have the problem common to boys... aim.
I was typing the last post while holding Caleb and Katelyn and Conner being kept busy with a video they''d earned. It was a Signing Time video and Conner was so excited at having earned watching it that he was trying to sign the title to Caleb.
Conner''s first activity this morning upon waking up was to come in and check on Caleb. We all (except for Caleb) went and took a shower/bath then. I wanted to get some runniness out of Conner''s nose. It worked. He was clear all morning. And the kids had fun.
Today Katelyn told me that we should go shopping. She wasn''t sure what she wanted to buy from Meijers (but she wanted to go there) and she wanted to buy cookie dough from Sam''s club. She also wanted to buy fresh fruit. We''d used it up while they were gone and hadn''t bought more yet. She was dissapointed while looking in the fridge.
Both the older kids are interested in knitting right now. They''re trying hard. It ended up that Katelyn unrolled a small ball of yarn but then she rolled it back up. I''m going to make her a dishcloth out of that yarn. She really enjoys "washing"
Eric''s parents brought everybody back last night and we switched vehicles at the same time. We''ve outgrown our Stratus. That''s very sad... I liked that car! It was so wonderfully compact. Things fit in so well... lots of cargo space, not to big while driving it... I''m now a minivan mom. We needed a minivan. I''m very sad to see the Stratus go but I know it''s the best decision for our family.
Katelyn''s seat broke a few months ago and we knew that if we replaced it with a seat that fit our car, she''d be out of it in a few months. The seat that will fit her best was just too big for our car if we want to put 3 seats across the back. Especially once Caleb outgrows his infant carrier.
So last night we went out to eat with Eric''s parents and then (as the new proud owners of a minivan that can fit larger seats) went and bought both Katelyn and Conner new car seats. These are deuluxe! Take a look at britaxusa.com at the Regent seats. We bought the Onyx ones... they look much better in person. The seats should keep the kids in a 5 point harness untill they either get much too tall or they hit 80 pounds. Height isn''t much of an issue becasue instead of being in the tallest harness slot, they are now in the smallest.
When we left the restaurant we headed to the van and Katelyn collapsed on the floor and refused to get into her seat. We figured out that she was afraid that she was going to go back to Wisconsin. We spent about 10 minutes explaining to her that the van was staying in Michigan and she was too. Poor girl... she really missed us. I wish I''d known how much because we would have gone to get her if we''d been told. She was very happy to discover that she wasn''t going away again. We won''t be letting the kids go on long trips away from us again anytime soon. They''re just not ready for that long even if it is with people they know and love.
On the way home, Katelyn asked to go shopping. We asked her where and she didn''t know so Eric brought up Home Depot. Katelyn said, "Yes, we need more paint." Eric and I just had to laugh at that. Apparently he''s been making lots of trips to Home Depot for paint lately!
I''m sitting here watching Caleb sleep. He''s been waking more and more during the day over the last few days. Today he also lifted his head while I was holding him up at my shoulder. It wasn''t much but this was the first time he''s done that. We have been careful of his neck with picking him up and putting him down but this is the first time he''s done the throwing his head back thing. We''ll have to be careful to keep him from hurting his own neck now. This is something we''ve always had to watch for with the other two kids right from birth. With Caleb it shows that he''s getting closer and closer to this due date.
So is it bad to look at hugely pregnant women and feel a little jealous? I''m told that it''s common for moms of preemies to feel that way. I love having Caleb in my arms and am thrilled to have him home instead of the NICU. I''m very thankful for his health and the way that God has watched out for him this entire time. But I also have occasional feelings of jealousy because I should be still pregnant. I feel goofy everytime I feel that twinge of jealousy though. It just doesn''t seem right.
Caleb woke up again and is claiming extreme starvation. :D Time to go feed him.
We''re home from the ped appointment. We''ve been home for a bit but Caleb was claiming extreme starvation... We don''t believe it''s all that extreme though especially since he weighed in at 6 pounds, 12 ounces. That''s a 9 ounce gain since he was discharged from the NICU a week ago. The ped was very pleased with that weight. She said that in her experience, the baby''s whose parents are nursing all seem to gain a lot better once they''re out of NICU. The bottle/formula babies don''t show the same difference in weight gained.
Everything looked good with what she checked. We don''t even need to see her again for 2 months unless we notice a problem. Yay! We scheduled Caleb and Conner''s Well Baby Checks for the same time. That''s so much easier then trying to get to two different appointments.
Katelyn and Conner are coming back home on Monday. I''m glad. It''s been nice to have the quiet and to let Caleb really focus on learning how to nurse and stuff. But I''ve missed them.
Here''s my public service announcement for the day... or at least the month...
If you are pregnant, or have recently given birth (as in, sometime during the last year) and are reading this, please consider finding a mother''s milk bank to donate to. It helps your child grow better if you pump while they''re nursing. (I charted out both Katelyn and Conner''s growth and found that if I pumped during the day, they grew better even though they were not getting the milk that I was pumping.) And it can really help another child. Our local hospital has a milk bank. The milk is collected from breastfeeding mothers, pasteurized and then used instead of formula for micropreemies or sick babies whose mothers cannot for one reason or another provide breastmilk of their own. Caleb had some during the first couple of days before my milk came in.
The reason this is on my mind... I dropped off the paperwork and had blood drawn today so that I can be an official milk donor. Mooooo!!!!! :D
While I was there I also weighed Caleb on their scale. This time I didn''t have to come home and weigh the onsie and diaper because it wasn''t included in his weight. He''s now 6 pounds 10 ounces. Yay! Tomorrow is his pediatrician appointment and I like to have a good idea of how the kids are doing before I go in there. So now I know that he''s been gaining very well since he''s been home. I''m very pleased.
Caleb is getting chubbier in the face. Eric and I both agree that he''s starting to get the same look that Katelyn and Conner had when they were born. I guess Caleb just needed an extra month to get there.
Can you believe that he''s 3 weeks old today? It doesn''t feel like that to either of us here. Probably because hasn''t even been home for a week. It''s wonderful having him home though.
I''m feeding him a lot, catching up on some housework that needed doing... mostly the sorting type of stuff. Going through the kids'' dressers and things like that. And I''m knitting the blanket that I''d just started when I went into labor. It''s slow going because I made it a bit wider then the last one but it''s looking nice. I''m about 8 inches into it right now. I''m wondering if I have enough yarn for it or if I should buy a 3rd skein. Eric bought two very big skeins so I thought they''d last longer then they are. But since it''s wider it''s taking more then I expected.
About Caleb''s homecoming... I typed this up last week Saturday but didn''t get it posted. I thought you''d enjoy reading it even though it''s late.
We''re home, we''re much more rested, and we''re so glad to not be running back and forth to the hospital anymore!
I ran home from the hospital after feeding Caleb one last time at about 10:30. I''d taken my laptop in with me that morning which is when I posted that we were coming home. I think the day nurse was a little surprised when I pulled out a laptop at his bedside and started typing. :D
The nurse had given me the news that morning that he was coming home. When I asked how much he''d taken with his bottle when I was gone, she''d laughed and said that he had totally refused it even though he was a bit hungry. The night nurse who''d tried giving it to him has passed on the word that he was now a totally breastfed baby.
I filled the day nurse in on our plan of what we were doing. She was nervous when I mentioned picking up our two kids at home but calmed down when I laughed and then told her that my mom was coming in and would be staying with them in the family waiting room.
I picked up the kids at home, met Eric there and we all piled into the car and headed out. We stopped for fast food on the way there (we had happy meals for the kids to eat while they were in the waiting room). On the way in I stopped at the breastfeeding center and asked if I could drop off the frozen milk for the donor bank. They said no problem and got things together for me.
I went in and fed Caleb while Eric and the kids met my mom and then he came in to meet us. We watched the CPR video and when Caleb finished eating Eric got to hold him. While the CPR video was going on, the nurse was great and got the bath stuff all ready for us so that we wouldn''t have to waste any time waiting for her.
The bath and CPR video finished the â€śparent trainingâ€? that we needed to do.
We dressed him in the going home outfit that we''d picked out (a onesie and a sleeper that Eric bought while I was on antepartum), I signed the discharge papers and then we bent the rules again...
Caleb was supposed to be in his car seat when he left. We wanted to carry him and the seat to the waiting room to meet Katelyn and Conner. We explained to the nurse what we were doing and she just shrugged, smiled and said, â€śWell, I guess you''re already discharged... go ahead.â€? So out we went.
Katelyn and Conner were sooo happy to meet him. Lots of kisses and giggles and everything. They helped us get him into his car seat. Katelyn was instructing Caleb about putting his arms through the straps and making sure that the chest clip was by his â€śtickle spotsâ€?. Conner carefully made sure that Caleb had his hat. (Conner loves hats.)
My mom really seemed to enjoy being able to be there for this. The kids were thrilled to be able to finally meet their brother.
Katelyn introduced Conner as her brother and Caleb as her other brother. She was very proud.
The way out of the hospital goes right past the breastfeeding center so I dropped off the frozen milk there and picked up my paperwork. I need to have the bloodwork done this next week but I''ve made my first donation! This is considered preterm milk so it''ll be great for the micro preemies. I''ll keep donating and have already pumped 4 ounces today for it. I figure I can easily get 4 ounces a day and if I want to use some, I''ll have it on hand but I can make a trip every couple of weeks to donate what I''m not using. It''s not like I use bottles very often!
I slept most of yesterday (in between feedings) and it was wonderful. My mom brought over a very old travel bed that we''ve been using for Caleb and it''s worked out very well. Though I did fall asleep with him in our bed last night. I was just too tired and that relaxing oxitocin from breastfeeding was putting me right to sleep. It scared me to wake up with Caleb in bed because I wasn''t expecting it. But we survived. Tonight should be easier to wake up because I''m more rested.
Caleb is fitting into the â€śnewbornâ€? size clothes that we have. That''s amazing. As was pointed out to me, he''s still more then a week from being â€śfull termâ€? and he''s home and larger then many full term babies!
I''m a little nervous about his weight gain now that he''s home and not being weighed daily. So my parents are going to bring over the digital fish scale that they use for weighing rhubarb. It goes up to 15 pounds and is very accurate so I''m going to transform a receiving blanket into a little sling and we''ll use the scale to weigh him. It''ll give me more confidence for our next pediatrician appointment. And will help me gage if I need to wake him more often to nurse him or if he''s doing well on his own. It''s an easy tool and though I trust myself it''ll be a good confidence boost. He does stay awake if he''s still hungry at all though! So I''m not too concerned.
This morning we took Caleb around the culdisac for a tour of the neighbors. They enjoyed that and we had fun showing him off. We tried to do that last night but only one neighbor was home. We chatted with her (and she passed along some diapers that her son had just outgrown... so we didn''t need to go buy diapers for while we wait for the fuzzibunz to fit) and that was fun. Today was our chance to meet the others.
Katelyn and Conner left today for â€śgrandma and grandpa campâ€? with Eric''s parents. They were excited about that and helped do the packing. Katelyn did a cursory good bye and was all ready to get into the car. I''m glad we waited until Caleb was home for them to leave though. They got a night with him here and now I don''t think they''ll feel like they''ve been supplanted by him. They spent more time saying goodbye to him then to Eric or me though. It was very cute.
Tomorrow is church and Eric and I have it all planned out about who gets him when since our sunday school classes are on different schedules. Caleb won''t be in the nursery for a few months yets (its how we''ve done it for all our kids and they didn''t even sleep all the time like Caleb) so I''m not concerned about taking a preemie to church. We''ll have the sling and it''ll be easy to keep him in our arms. It''s important to me though to get our kids to church as soon as I can and Eric knows this. We''re looking forward to it. And Eric is really looking forward to showing off his son!
Then the afternoon will be another lazy day for us as we catch up on sleep and enjoy not having twice daily runs to the hospital.
While I was already out, I took him to the post office and weighed him on the postal scale for the automated shipping and then I came home and changed his diaper clothes and weighed those. Simple subtraction and I have an approximate weight.
It comforts me to know that he''s gaining weight. I don''t know if this is the amount of weight that the ped will want him gaining but it''s normal for a full term baby who is under 4 months to be gaining between 1/2 and 1 ounce a day. So we''re looking at between 4 and 7 ounces a week. I think he left the hospital around 6#2 or 6#3ounces. So we''re on track. He''s definitely not losing though!
Katelyn and Conner are at Grandma & Grandpa Camp in Wisconsin. They helped bring Caleb home from the hospital and we spent the night and part of the next day as a family. They sure were excited to go with their grandparents though. They didn''t really want to take time to say goodbye.
I''m sure they''re having a lot of fun. And it''s nice to focus on feeding Caleb without a lot of disctractions going on. He wants to be either held or fed nearly all the time. I''m glad I finally get to do that without a set schedule!
Guess who''s coming home today! It''s "Gotcha Day" for us!!!
I spent the night last night in the hospital with Caleb. The nurses made an exception for me. They don''t normally let parents come and spend the night next to the baby''s crib. But their parent training room was being used by another mom who needed the training more.
That baby is going home on an apnea monitor so it was more important that she get the extra training in the parent training room. She was really sweet... I chatted with her last night. She''s a very young mom - old enough to drive but that''s about it - and her son has been her for 3 months now. She''s thrilled to take him home! She''s been here every single day to spend time with him.
So since I was just here to prove that Caleb could gain weight with nursing, the nurses bent the rules and let me sleep in the unit itself. Note to anyone working here... these recliners are not very comfy on your tailbone! Caleb did exactly what I expected which was to nurse every couple hours just about on the hour. He really improved his latch and was latching himself on and unlatching to try again if he didn''t think it was right. And he nursed both sides rather then his previous one side only deal.
The night nurse weighed him at the beginning of her shift as she was supposed to and he''d lost some weight. But she volunteered to weigh him again after I"d spent the night with him to see what he''d done with that.
So by morning...he''d gone up 22 grams. I don''t know if that was compared to the evening weight or yesterday''s weight but we were thrilled. She went immediately to tell the nurse who does the planning for discharges and told me that she''d highly reccomend to the doc that he go home today.
I ran home to watch the other two kids so Eric could get to work. So I got about an hour of sleep in bed before our sitter was able to come over.
When I got back up to the hospital, the day shift nurse told me the doc had been through and had approved discharge. He''s going home today!!!
We''re doing the car seat test right now (I don''t expect any surprises there... he''s doing so well overall and his pulse-ox has always been wonderful) and Eric and I will go over the infant CPR stuff when he gets off work. (he''s taking the afternoon off now since Caleb is coming home). Then the only thing left is a bath and we''re going home.
I''m going to check in with Eric in a little bit but the plan right now is that if someone can meet us up here then I''ll go home and get Katelyn and Conner and they''ll get to help bring Caleb home.
Crossing fingers... but the nurse last night said that she is strongly reccomending that Caleb be discharged today!
I spent most of the night with Caleb so that I could feed him on demand through the night. And he gained weight! The nurse was so sweet about it... she weighed him at the beginning of the evening and then this morning to see if he''d gained or lost during that time.
Caleb just got moved to the Intermediate Care Nursery. Basically that happens when the NICU needs more room in the NICU nurseries.
I also confirmed today that the only thing holding him back is the need for him to be gaining weight. I can understand this so I''m going to be spending much more time there today and tomorrow and this weekend so that I know that his little hunger cues are being listened to instead of just the major ones. I''m also focusing on how to gt my milk to be more rich and creamy which will help with the weight gain too.
Caleb''s car seat is next to his bed and ready to be used. And we''re very ready to get him home.
When Caleb wasn''t nursing well I was concerned about being able to get him the nutrition he needs to grow. But now that he''s nursing well I''m confident of my ability to get nutrition into him and so it''s that much harder to leave him there each day. I''ve reached the point where I feel that he''ll get more nutrition by being at home then by being at the hospital. I''m getting very impatient now! The problem is getting the docs and nurses to also agree to that because when I''m not there he still seems to be eating on that every 3 hour schedule. When I"m there it''s every 2 or 2.5 hours. So I keep thinking that he''s probably missing at least one feeding a day if not two and that''s valuable nutrition for a preemie.
Caleb is officially nippling all his feedings. The tube going down his nose for feedings is officially gone.
I''m sad though because I feel like my definition of "on demand" feeding and the nurses'' definition are a bit different. With Katelyn I had to learn to look for little signs that she was hungry because if I didn''t, she simply didn''t eat enough. I think Caleb has a similiar laid back personality. So he doesn''t protest that he wants to eat until he''s *really* hungry.
The nurse who had him today told me that she wanted him to really ask for his food and that she felt that feeding every 3 hours was a good thing. I know that with Katelyn and Conner, if they waited 3 hours to nurse during the day (night was different) then I got worried. It was a sign that they weren''t getting enough nutrition. So... to be told that my preemie son should go every 3 hours just doesn''t sit right for me. But... I''m not an expert on preemies. I do know a lot about breastfeeding but my experience has been with full term babies, not preemies. I''ve read a lot about breastfeeding preemies though and the sources generally agree that they tend to sleep through feedings if you let them.
He lost about 3 ounces yesterday. :( So he''s currently nippling all his feedings but not getting enough to maintain his weight. Which is not good for him coming home.
I''m praying that he show real hunger and gulp that breastmilk down when I''m not there.
The IV is done and the PICC line should come out today. The neonatologist told me would....
I was also told that the only roadblock to him coming home is nippling all his feeds. So I''m hoping that the nurses really encourage him to do that.
The CF sweat test was rescheduled for tomorrow. The nurse checked the computer and it was on there but somehow the lab didn''t know about it. So... keep praying!
Caleb nursed well this morning. We got 3 times in because I was watching him for hunger cues. He made it easy to see them though. Every time that I put him down, he woke up and acted hungry. I think he figured out that mommy would feed him and that meant more holding time. By the time I left he was so sated that he wasn''t waking up for me at all.
The sweat test is today. I''m getting nervous about it. Please continue to pray for a negative result. And for enough sweat to get a definite negative!
I was up there for 2 feedings last night. So a total of 3 yesterday. I''m aiming for 4 today. He nursed fairly well with each of the 3 and they are not supplementing him after those nursing sessions any more. And he still gained 3 ounces yesterday! He sure is gaining well now that he''s allowed full feeds. I was told that they like to see a 1/2 ounce gain each day in the NICU. So this is a superb gain.
He should also be totally done with the IV feedings now and on a heplock instead. I''m looking forward to getting the PICC line out of his head completely. That appears to be the biggest thing holding him back from coming home. That and the docs comfort level with breastfeeding instead of bottlefeeding.
Yesterday I met with a lactation consultant. I was concerned with Caleb''s nursing because even though he''d latch on initially he just didn''t seem to know what to do once he did. Even with mouth full of milk he didn''t even swallow. We talked it over and I made an informed mommy decision to try a bottle to get him to learn to suck food down.
He did that and last night and today he latched on amazingly well.
The only bummer about this is that I was told (by a doctor, not a nurse) that the NICU doesn''t know how to measure the intake of a breastfed baby so it takes longer to get them home when they''re getting most of their food from nursing. My thought is that they can measure output and weight gain just like in a full term baby... but even there takes longer to get them home then if I just did a bottle all day for a day. That''s weird... he comes home later if I do what is better for him by giving him fresh breastmilk instead of frozen... anyways...
But... since he''s finally been approved for unlimited nursing whenever I want to feed him, I''m going to continue to try to get there for 3 or 4 of his 8 feedings a day and nurse him.
He''s growing well though with all this food! And he''s definitely pooping well (finally, LOL!). So his output is very good. Unfortunately the neonatologist upped the amount of IV nutrition because he was concerned that Caleb wouldn''t handle the increase in food. I hope that by tonight that goes back down or is totally removed. Removing the IV (or rather, the PICC line) seems to be Caleb''s last big thing before being allowed to come home.
Eric called and requested to talk to the neonatologist today and found out that he considers the test results to be inconclusive. I''m still holding out hope though. Basically I think this is an attitude of it not being totally ruled out so we can''t say for sure. But... I''m much more confident now. To me it sounds like a case of the test being negative but symptoms (the meconium ileus) showing a possible positive so we can''t say for sure because the two do not agree.
Eric''s comment was that a negative doesn''t always rule out a positive.
That''s discouraging. But still good news that the first test didn''t show any CF.
The next test is the sweat test. So it sounds like a series of tests until there''s just enough negatives that it''s ruled out. The more I read about CF though, especially on forums with parents of children who have CF, it sounds like doctors just don''t like to say that it''s not CF... there are a bunch of posts complaining about not getting good answers from tests and continually having to go back for more and more expensive tests.
And it sounds like the hospital is planning on having specialists come in to look at Caleb sometime later.
We had to call to find this info out though. I''m surprised by that.
My neighbor was talking to a friend of her''s in town whose son had 3 different tests be negative before it was admitted that he didn''t have CF. This boy also had meconium ileus as an infant.
My mom and I were at the hospital visiting Caleb late last night. While we were there I did my usual look through of his charts and we saw the lab results from his CF DNA probe. This all needs to be confirmed with a doctor of course but we both read the report and both agreed on what we read.
The DNA probe was negative for Cystic Fibrosis.
There was a note later in the report saying that this test has a 99% accuracy rate but that it can miss some of the more unusual mutations of CF. So it''s reccomended that we do further testing at a later date.
We are so relieved.
Thank you for praying with us about this!
In other news, Caleb is out of his isolette. He also started oral feeds again this evening and a second test of his bowels came back showing good results from his surgery.
There was meconium in the colon. That''s good news. Apparently it just hadn''t quite made it''s way out yet. But after the enema it did.
The surgeon wasn''t able to see what he wanted to see but he said that was mostly for technical reasons... he just wasn''t able to get it to work right, not because there was anything wrong with Caleb.
However, what he did see looked good.
So between this and Caleb''s aspirates being clear, he''s back on oral feeds!
Caleb did have a small meconium poop but apparently not enough for the surgeon to call off the test. :( I''m disappointed but still encouraged that things are moving through. Just slowly.
There was also no aspirate this morning which is also a good sign... that the contents of his stomach (the ones produced by his stomach even without food) are moving the direction that they should be. And the very small amounts of aspirate that were there last night were clear (not full of the dark greenish/blackish gunk that was there when he was given some food).
Caleb''s bilirubin levels are also down to a 10.0 from an 11.1 yesterday even though he wasn''t under the spot light. The last time he was taken out from under the spot light, his bilirubin levels went up so this is also a good sign of his bowels starting to work even if slowly.
Today is a week from his surgery.
I didn''t get to go in this morning because the sitter didn''t come. But I''ll go in this evening I hope after the Shower that the church is throwing for Laura.
I just called about Caleb. No poop yet. Keep praying for that please!
But his aspirates (the fluid pulled out from his stomach) were low last night and clear. So nothing is backing out of his intestines at least. The surgeon said that if the test result from the contrast study is inconclusive he might go ahead and approve small oral feeds anyways. We''ll see. Caleb gained more weight on breastmilk even with the bowels no being ready yet. So I''m hoping he gets even more.
The contrast study is scheduled for 3 this afternoon so please pray that it goes well. Or that he poops first which would be even better.