Lilly and Davis' Story
Lilly was born first at 9:56PM. She weighed 1 pound and 14 ounces and was 13.25 inches long. Her head was 24 cm in circumference (slightly smaller than a baseball).
Davis was born at 10:07PM... 11 minutes after his sister (something she'll never let him forget). He weighed 1 pound and 13 ounces. He was 13 inches long and had the same size head as his sister.
Both were taken to the NICU directly after delivery and are expected to be there until their original due date, March 12th (that's exactly 100 days in the NICU!)
Please keep these little ones in your thoughts and prayers and hopefully we will get to bring them home sooner!
Wednesday, February 29, 2012
Day 87 - 2/28/12
Another good day in the NICU. Lilly is still eating all her bottles! Davis is still doing great without his nasal cannulas. Both kids had head ultrasounds today. This is a routine exit exam for the NICU. We should get the results back tomorrow or Thursday. Our time in the NICUis hopefully coming to an end soon!
Weigh in... Davis gained an ounce, making him 6 pounds and 2 ounces. Lilly gained 3 ounces, making her 5 pounds and 8 ounces!
Tuesday, February 28, 2012
Day 86 - 2/27/12
Sunday, February 26, 2012
Day 85 - 2/26/12
Day 84 - 2/25/12
Day 83 - 2/24/12
Day 82 - 2/23/12
Thursday, February 23, 2012
Day 81 - 2/22/12
Day 80 - 2/21/12
Tuesday, February 21, 2012
Day 79 - 2/20/12
Sunday, February 19, 2012
Day 78 - 2/19/12
Day 77 - 2/18/12
Day 76 - 2/17/12
Friday, February 17, 2012
Day 75 - 2/16/12
Thursday, February 16, 2012
Day 74 - 2/15/12
Today was a pretty good day for the kids. Davis didn't last long laying flat... the reflux was too much, so they put him back on an incline. Lilly is doing pretty good, but she is very tired. Making her drink from a bottle for every feeding is making her exhausted. We tried to bottle feed her at 9:00PM, but she wouldn't wake up. She managed to take a couple sips in her sleep, but no where near the amount she is supposed to be eating. They may have to put her feeding tube back in tomorrow if she continues to not wake up for feedings.
Weigh in... Davis gained 2 ounces, so he is now 5 pounds and 6 ounces! Lilly stayed at 4 pounds and 14 ounces! I think tomorrow will be her day to pass 5 pounds... assuming she wakes up to eat.
Tuesday, February 14, 2012
Day 73 - 2/14/12
Day 72 - 2/13/12
Ok, my blogging break is over... I'll go back to updating everyday. We'll also add more photos! Lilly and Davis have special Valentine's day outfits, we'll make sure we post their pictures and share with everyone tomorrow.
Both kids are doing well. Both kids got 2 of their vaccinations last Sunday. They are both going to get their 3rd vaccination tomorrow. Other than that, no big changes... still just cruising along.
Today was a huge milestone for Davis's weigh in! Davis is now 5 pounds and 5 ounces... same as Dad's birth weight! Mom was over 10 pounds when she was born, so we have a ways to go before we hit that milestone. Lilly is now 4 pounds and 12 ounces... not long before both are over the 5 pound mark!!!
Sunday, February 12, 2012
Day 71 - 2/12/12
The kids had a pretty good weekend. They are both taking 3-4 bottles a day, with the rest of their feedings still going through their feeding tubes. Davis is still working through reflux issues, so he has episodes after some of his meals. Not really any big changes... just growing and getting stronger.
Weights... Davis broke the 5 pound mark on Saturday! Today he weighs 5 pounds and 3 ounces! Lilly is up to 4 pounds and 10 ounces!
Wednesday, February 8, 2012
Day 66 - 2/7/12
Today was a great day!!!
Lilly had a follow up echo cardiogram yesterday to check out her PDA and the slight distress on her heart. The results cam back today and the PDA has "resolved itself"! Woohoo, no surgery for her!!! They also said her heart looked normal, so the distress has gone away. They also took Lilly off a bunch of meds... the Lasix (the diuretic), a potassium supplement they were giving her because she was on Lasix and the caffeine she's been on since forever. Finally, they're allowed to start weening her off the nasal cannulas! We can't wait, that'll mean no more breathing tubes!
Davis earned himself a kidney sonogram because of the UTI he had a couple weeks ago. Something about a UTI could indicate a potential bladder/kidney issue... The results from the sonogram came back yesterday and everything looks good! They are also weening Davis off his nasal cannulas, but at a slower rate. He's having some reflux issues when he eats, so they don't want to take away his extra air too fast.
Both kids are handling their bottle feedings great! They still get fed through their feeding tubes on a regular basis, but they are slowly taking more and more bottles!
Weigh in... Davis weighs 4 pounds and 12 ounces! Lilly weighs 4 pounds and 2 ounces! They both were just over 16 inches long on Sunday when there were last measured!
Monday, February 6, 2012
Day 64 - 2/5/12
Sorry, it's been a couple of days since we have updated the blog. Everything is going well... we've just been a little busy.
Davis and Lilly are both doing well! Both babies are doing great with their bottle feedings and they are slowly increasing the number of times they eat from a bottle each day. They cut Lilly off from her caffeine on Sunday and she seems to be handling that fine.
Both babies have gained a lot of weight since the last blog! Lilly hit the 4 pound mark last nigt, coming in a 4 pounds and 0 ounces. Davis hit 4 pounds and 8 ounces!
Thursday, February 2, 2012
Day 60 - 2/1/12
Davis and Lilly were great with their bottles!!! I got to feed Davis and Lindsey fed Lilly. We are allowed to bottle feed for 20 minutes, then the leftovers get pushed through their feeding tubes. Davis ate over half his bottle in 12 minutes... then he passed out. I guess eating from a bottle is hard work. Davis was great with pacing himself during his feeding (he remembered to breathe between bites...). Lilly ate just under half her food over 10 minutes. She also did great with pacing herself.
Davis and Lilly got to try their second bottle at their 3:00 AM feeding. They bottle took their entire bottles within the allotted time!!!
Lilly also had her eye check up yesterday. The doctors were very impressed with the amount of development with her eyes over the week. She is now rated a 2 out of 3 in eye maturity (same as Davis)! She still shows no sign of eye disease.
Weigh in... Davis gained an ounce and weighs 4 pounds and 3 ounces. Lilly gained 2 ounces and now weighs 3 pounds and 10 ounces!
1st Bottle...whoohoo!!
Burp time
Eating is hard work
My turn now.....Lilly's first bottle
Pouty lips
Well that was fun....I wonder what yummy food they'll give us tomorrow?
Tuesday, January 31, 2012
Day 59 - 1/31/12
Another great day in the NICU. Both kids are doing well!
We get to try bottle feeding Davis and Lilly tomorrow! We're pretty excited and hopeful that the kids handle their bottles well.
Lilly also gets her eye checkup tomorrow. Hopefully the eye exam does not upset her enough that we can't try a bottle with her...
Weigh in... Davis gained an ounce, now weighing 4 pounds and 2 ounces. Lilly stayed the same at 3 pounds and 8 ounces.
Day 58 - 1/30/12
Monday, January 30, 2012
Day 57 - 1/29/12
Another good day at the NICU. However, we are disappointed that they did not make any of the moves with Davis and Lilly today. All the RNs and NPs who work with Lilly and Davis think they are ready for less breathing support. However, we have to make sure the neonatologist on duty that day is ok with it, too. The regular neonatologist (one that is more familiar with our kids) is back tomorrow... hopefully she will allow the nurses to make the changes.
Weigh in time... Davis weighs 3 pounds and 15.3 ounces!!! Less than an ounce from hitting the 4 pound milestone!!! Lilly lost an pounce and weighs 3 pounds and 6 ounces.
Day 56 - 1/28/12
Both kids are doing well today. They are talking about moving Davis back to the normal flow nasal cannulas tomorrow. They are also thinking about moving Lilly from the CPAP to the high flow machine.
Both kids gained weight today! Davis is now at 3 pounds and 14 ounces! Lilly is at 3 pounds and 7 ounces!
Saturday, January 28, 2012
Day 55 - 1/27/12
Some pictures from 1/26/12:
Friday, January 27, 2012
Day 54 - 1/26/12
Davis was struggling a bit today. He had several episodes throughout the night and in the morning. The nurses are not sure what is causing this and decided to run him through all the infection tests. Initial results are indicating that he does not have an infection, but we will need to wait to see if anything grows in the blood or urine cultures before we know for sure. His CRP test (a test that looks for a certain protein that increases if there is any inflammation, which could be caused by an infection) showed levels that were borderline concerning (he came back with a 19... a value of 20 or higher causes concern). So, he'll get another CRP test tomorrow morning.
Davis has gone through a ton of changes in the last few days and that could be the cause of the increase in his episodes. Let's see... they cut off his caffeine (if he's anything like me, that alone would cause full body shutdown), dilated his eyes for an exam (and he never got the trendy sunglasses they usually give out after eye exams...), switched him from nasal cannulas to breathing in a bubble for a day to give his nose a break, ran a catheter in him (not just once, but twice!) to get urine for a culture, pricked his foot to get blood for multiple tests and to top it off, his mom is making him listen to a Jewel lullaby CD on repeat... I would be having episodes if I had to endure all of that too!
Mommy got to hold both kids today (want to make sure I'm fully recovered from my cold before I hold the kids...). They both did well and seemed to have a great time! Both kids are starting to smile on occasion, so our visits with the kids include lots of random noises, movements and gestures to see if we can get them to crack another smile. A casual observer (correction... any observer) would probably think we are very strange people.
Weigh in time... today was Lilly's day for big gain. She gained 2 ounces, making her 3 pounds and 4 ounces! Davis lost an ounce, so he now weighs 3 pounds and 10 ounces.
Day 53 - 1/25/12
Today was a big day for the kids. They had their first eye exam and both came back with good results. Premature kids have a high risk for an eye disease called ROP (can be caused by high oxygen levels given to preemies to help them breathe). During the eye exam they look for eye disease (referred to as stage... scale of 0-5, the lower the better) and they also look at the eye maturity (aka the zone... scale of 1-3, the higher the better). Lilly's eye exam came back as zone 1 and stage 0. Her eyes will mature as she gets older... but it's great that she does not have any eye disease! She will get another check up next week. Davis's eye exam was a little better than Lilly's. He is zone 2 and stage 0, so more mature eyes and no sign of disease! He will get his next checkup in 2 weeks.
Both kiddos also had a great day of weight gain. Davis gained 2 ounces and is now 3 pounds and 11 ounces! He has more than doubled his weight since he was born! Lilly gained an ounce and is now weighing 3 pounds and 2 ounces.
Wednesday, January 25, 2012
Day 52 - 1/24/12
Dad is still sick, so he did not go to the NICU today. Mom was feeling better, so she went in to visit with the kiddos.
Lilly and Davis are doing well. No big changes for Lilly today. Just letting her grow. They stopped Davis's caffeine today. They think he is big and strong enough to not need the caffeine anymore... another step in the right direction! Other than that, no other changes.
Weigh in time... Both kids gained weight again. Davis gained 3 ounces, making him 3 pounds and 9 ounces. 1 more ounce and he will have doubled his body weight! Lilly gained an ounce, now weighing 3 pounds and 1 ounce.
Tuesday, January 24, 2012
Day 51 - 1/23/12
Lilly hit the 3 pound milestone today, woohoo!!!
Lindsey and I are still sick, so another day of not visiting our kids :( However, we did talk to the nurses and everything is going well. No big changes.
Lilly gained an ounce and is now 3 pounds. Davis is holding steady at 3 pounds and 6 ounces. Next big milestone... the 4 pound mark for both kids.
Monday, January 23, 2012
Day 50 - 1/22/12
Lindsey must have sneezed on me when I wasn't paying attention... now we are both sick :( So, we will not be visiting the NICU today. However, we did call several times and got a few updates. Lilly had her blood count and blood gases tested today. Her blood count is 25, which would usually require a blood transfusion. However, her retic (pretty sure I'm spelling that wrong...) is high meaning her body is making a lot of her own red blood cells. The nurses will wait and see how Lilly is tomorrow before they decide if they want to give her a transfusion.
Davis is doing well. Just hanging out, growing and getting stronger.
Weigh in time... Davis gained another ounce, woohoo!!! He is now 3 pounds and 6 ounces! Lilly also gained an ounce, bringing her to 2 pounds and 15 ounces! Hopefully tomorrow is the day I can say both kids are over 3 pounds! Today was also measurement day. Both kids are now 15.25 inches long!
Day 49 - 1/21/12
Today was another good day. Both kids are doing well. Mom still isn't feeling well, so she stayed home today and dad went to check on the kids. Hopefully she gets over her cold soon!
Weigh in... Davis gained another ounce, now weighing 3 pounds and 5 ounces. Lilly is holding steady at 2 pounds and 14 ounces.
Saturday, January 21, 2012
Day 48 - 1/20/12
Lilly moved to a normal CPAP today. She is doing great! They will keep her on CPAP for a couple weeks and slowly reduce the pressure. Then they will try the high flow machine with her. Babies can't bottle feed while on CPAP, so she will probably have to wait a week or 2 after Davis to start trying to bottle feed.
Weigh in... Lilly is back up to 2 pounds and 14 ounces and Davis stayed at 3 pounds and 4 ounces.
Day 47 - 1/19/12
Lindsey has a cold, so she couldn't hold the kiddos today. That meant that dad got to hold both... and he loved it!
Weigh in... Davis gained 2 ounces today!!! He is now 3 pounds and 4 ounces! Lilly lost an ounce, so she is at 2 pounds and 13 ounces.
Thursday, January 19, 2012
Day 46 - 1/18/12
Davis is still doing well. They started giving him his feeds over 2 hours, as opposed to the continuous pump he has been on (he gets fed every 3 hours... of which 2 are used to slowly pump the food into his belly). They will slowly shorten the time Davis gets his food to get him used to eating from a bottle. We should be able to start bottle feeding him in a week and a half. They are also talking about taking Davis off the CPAP soon and moving him to the high flow machine (small tubes blowing air in to his nostrils).
Weigh in... Davis gained an ounce, so he is back to 3 pounds and 2 ounces. Lilly gained 2 ounces, so she is at 2 pounds and 14 ounces.
Wednesday, January 18, 2012
Day 45 - 1/17/12
Today was another good day. Lilly and Davis are both doing well. Lilly had her echocardiogram today. We won't get the results until tomorrow...
They moved Davis to a crib today! They would have moved Lilly to a crib, but they ran out... as soon as one becomes available, they will move her to one too! It's great to see our little ones starting to look like normal kids.
Weigh in... Davis lost an ounce and now weighs 3 pounds and 1 ounce. Lilly stayed the same at 2 pounds and 12 ounces.
Monday, January 16, 2012
Day 44 - 1/16/12
Today was a huge day for the kids! They opened the top of both of their incubators. They both are doing well maintaining their body temperature, so they don't need the extra heat from the incubators. If they do ok over the next several days, they will move them to open beds!
There are 3 requirements that each kid needs to achieve before they are allowed to go home (contrary to most peoples beliefs, weight is not a requirement). The first, maintain your body temp. Check. The second, you have to be able to feed from a bottle without drowning yourself or forgetting to breathe. We get to start working on that in 2 weeks. The third, you have to be able to breathe without any assistance (or very minimal assistance). We are working on that and hopefully are well on our way of meeting that requirement. So, as of today, 1 down and 2 to go!
Both kids were also seen by the nutritionist today and both are getting changes to their feedings. Last week, Davis was getting 6.5 ml of 24 calorie per ounce food. Throughout the week they increased his food to 26 calorie per ounce and have been slowly increasing the volume. Today they moved him to 9.1 ml per hour! Lilly is still going to get 25 ml every 3 hours (she gets her feedings over an hour, as opposed to continuous like Davis), but she is going up to 26 calories per ounce (thank goodness... maybe she will start to gain weight like her brother did this week!).
Lilly is scheduled to get an echo cardiogram tomorrow. They want to check out her heart and see if her left side looks any more distressed than the last test. They will also look at her PDA to see of anything needs to be done and reevaluate her need for Lasix (the diuretic... another reason she is not gaining weight as fast). We most likely will not get the results until Wednesday... gonna be a long couple of days.
Weigh in time... Davis gained 2 ounces and is now up to 3 pounds and 2 ounces! He's getting so big! Lilly gained an ounce and is now up to 2 pounds and 12 ounces. Hopefully with the increase in calories she will be able to catch up to her big brother!
Day 43 - 1/15/12
No big changes today. Lilly and Davis are both doing ok.
Weigh in... Davis is back to 3 pounds and Lilly is still 2 pounds and 11 ounces.
Sunday, January 15, 2012
Day 42 - 1/14/12
Some photos from 1/9/12:
Lilly is still doing ok. Removing the plug yesterday seemed to help, but there still seems to be something causing her to not breathe as well. She is on low support and doing fine, but there are some indications that she is not getting the best flow in her lungs and her CO2 gases are a little high (most likely a floppy airway or something like that). The plan is to let her rest and get stronger and hopefully she gets through whatever is causing the issue.
Davis is still holding strong. He is still on light support and is happy with it.
They have both of their beds turned down to low temperature settings, which means both kids are doing a good job of maintaining their own body temp. If they keep this up, they will pop the tops on their tanks within the next few days to see how they handle it. If they handle it well, then they get to graduate to cribs!
Weigh in time... both kids lost an ounce today. Davis is at 2 pounds and 15 ounces and Lilly is at 2 pounds and 11 ounces. Hopefully we have big weight gains tomorrow!
Saturday, January 14, 2012
Day 41 - 1/13/12
Lilly is doing much better today! The nurses did a deep suction on her nose and pulled out a big "plug" from her right nostril (aka a booger...). She seems to be doing better now, hopefully that was all that was causing her problems.
Davis is still doing well.
Weigh in time... Today was a big day for Davis! He hit the 3 pound milestone, woohoo! Lilly weighs 2 pounds and 12 ounces. She needs to start playing catch up!
Friday, January 13, 2012
Day 40 - 1/12/12
Lilly is still struggling a bit. They increased her CPAP support to see if that helps her breathe easier. They are trying to prevent having to go back to the ventilator... The NICU told us if she has to go back to a ventilator, then they are going to send her to Children's Hospital for further evaluation. They have looked at everything they can here and may need Children's to dig a little deeper to see if they can determine why she is working so hard to take breaths (could possibly be a floppy airway...). All her tests show that her lungs are working well and she is taking breaths regularly, but she has a noticeable stridor (per Wikipedia, the truth in all things in the internet: Stridor is an abnormal, high-pitched, musical breathing sound caused by a blockage in the throat or voice box). Musical??? Not my idea of music... Anyway, we are hoping they can figure out whats going on and get it fixed soon. We feel pretty helpless watching our baby girl struggle and there's nothing we can do to help.
Davis is still doing well. No big changes with him.
Weigh in... Davis gained an ounce, now weighing 2 pounds and 14 ounces. Lilly lost a couple ounces, so she is now 2 pounds and 12 ounces.
Day 39 - 1/11/12
Today was a rough day for Lilly. She didn't seem as energetic as she usually is and was struggling with breathing and keeping her heart rate up. They decided to run her for infection tests again and check her blood count. Early indications from the infection tests are negative, so that's good. Her blood count is at 30, so that's ok too. They think she may have inflammation in her nose or airway (from going back and forth on the ventilator), making it hard for her to breathe. They tried dropping a topical form of steroids down her nose to see if that helped. It didn't... So, she is getting 3 rounds of steroids in her IV to see if that helps the inflammation.
Davis is still doing well. They are talking about lowering his CPAP support early next week! Hopefully we can get him off the CPAP and move onto the next lower form of support, the high flow machine (uses nostril tubes... similar to what adults who are dependant on oxygen use).
Weigh in time... both kids have gained a total of 1 pound since their birth, woohoo! Lilly is now 2 pounds and 14 ounces and Davis is 2 pounds and 13 ounces.
Wednesday, January 11, 2012
Day 38 - 1/10/12
Tuesday, January 10, 2012
Day 37 - 1/9/12
Another good day in the NICU! Lilly graduated to a CPAP this afternoon. She seems to be handling it well. It's great to see both kids off the ventilators and on CPAP!
Lilly went up on her calories per ounce of milk. She is now drinking 26 cal/ounce (was 24 cal/ounce). Davis is still on the 24 calorie stuff. Other than that, no big changes.
Weigh in... Both kids gained an ounce! Lilly is now 2 pounds and 12 ounces and Davis is 2 pounds and 11 ounces.
Measurements from Sunday night... Lilly is now 37 cm long (up 0.5 cm from last week), making her just over 14.5 inches. Davis is now 36.5 cm (up 0.5 cm from last week too), making him just under 14.5 inches.
Monday, January 9, 2012
Day 36 - 1/8/12
Today was a great day at the NICU! The babies are doing well today. They plan on moving Lilly to the CPAP tomorrow... hopefully it goes well!
Today was the first time we held the kids like normal babies (instead of the skin to skin kangarooing). They swaddled the kids and let us hold them in our arms. We liked it a lot better... it's a lot easier to look and interact with them when holding them (was tough to do that when they are laying on your chest...). Dad held Davis and mom held Lilly.
Weigh in... Lilly is at 2 pounds and 11 ounces, Davis is at 2 pounds and 10 ounces. They also did their full measurements today, but we forgot to ask about them.
Sunday, January 8, 2012
Day 35 - 1/7/12
Day 34 - 1/6/12
Friday, January 6, 2012
Day 33 - 1/5/12
Thursday, January 5, 2012
Day 32 - 1/4/12
Today was another crappy day for Lilly and another good day for Davis.
Most of Lilly's infection tests have come back and all are negative. Also, her cultures do not appear to be growing anything, so that's good news too. They also took another x-ray of her belly and they do not see anything in her intestines... more good news. However, during the monthly screening of patients at the NICU, Lilly turned up positive for the MSRA bacteria in her nose. She does not have an MSRA infection, but is now more susceptible to one. Apparently MSRA is pretty resistant to antibiotics, so if she does get an infection there is some special stuff they will need to do. They are starting her on antibiotic ointment in her nose to try and get rid of the colony. However, getting rid of the colony is tough to do (due to their resistance to antibiotics...). Because she tested positive, she now must be in isolation for the rest of her stay at the NICU. This means mommy and I will have to wear gowns and gloves whenever we are around her cage, touch her, hold her, etc. We can not go back and forth between Davis and Lilly like we normally would do. They recommend we come in and spend time with Davis first, then suit up and spend time with Lilly, then leave.
Lilly also had an echocardiogram yesterday. The doctor said that she still has a moderate to large PDA. They also saw signs of strain on her heart due to having to pump extra fluids (the PDA can cause blood recirculation, making the heart work that much harder...). Both of her left chambers are dilated, however both are still working properly. So, they are going to start Lilly on more diuretics (Lasix) to help reduce the fluids her heart has to pump. If the PDA doesn't look like it is closing within the next couple of weeks, then we'll have to talk about surgery. We're definitely not ready for that conversation, so we are hoping and praying it will close on it's own...
Lilly's blood count went up from 21 to 30 from the blood transfusion she received yesterday. However, she will probably need another transfusion soon. An increase of 9 points was good, but they don't want her count to fall below 30.
They started Lilly back on her feeds today since her tummy x-ray came back clean. She gets half feeds today and if she handles them well, she'll go back to full feeds tomorrow.
If the cultures still show no growth tomorrow and Lilly is able to go back to full feeds, they will stop her IV antibiotics tomorrow and remove her IV (this would be great... once less open area for the MSRA, or any other bug, to infect).
Davis is doing well again today. He is still on light CPAP support and handling it well. He is also doing well with his feedings.
Daily weigh in...
Lilly gained another ounce, so she's now 2 pounds and 12 ounces. Davis gained 10 grams... not enough to bump him up an ounce, so he's still at 2 pounds and 7 ounces.
Wednesday, January 4, 2012
Day 31 - 1/3/12
Today was a crappy day for Lilly and pretty good day for Davis.
For the last couple of days Lindsey and I have noticed Lilly has been looking pale. We brought it up to different nurses several times, but they didn't seem concerned. Low blood count can cause paleness and they tested her blood count on the 30th and she came back with a 31 (they look at blood transfusions if it goes below 30...). Today, Lilly was even paler and she started acting up on her CPAP. They looked at her blood gases and her CO2 was high. They retested her blood count and she is down to 21 (they think the 31 on the previous test was probably an error...). So, they gave Lilly a blood transfusion. They also moved her back to a ventilator to help her lower her blood gases. The nurses are also worried that she may have an infection. They x-rayed her belly and they saw something in her intestines that may be questionable (they said it could also just be gas...). So, they started Lilly on antibiotics. They also don't want to feed her until they can take another look at her belly (taking another x-ray tomorrow morning), so they will be giving her nutrition through her new IV. Lilly had a tough day... hopefully it gets better for her tomorrow.
Davis on the other hand is doing well. They lowered his settings on the CPAP... great news!
The weigh in... despite everything going on with Lilly, she still managed to gain 30 grams today. She now weighs 2 pounds and 11 ounces. Davis lost a few grams, dropping him to 2 pounds and 7 ounces.
Monday, January 2, 2012
Day 30 - 1/2/12
Another big day today. Davis went to his CPAP at 3:00 PM. He seems to be handling it well... hopefully we are done with the ventilators. Davis will get 2 more doses of steroids today, then he's done with them. Lilly continues to do ok on her CPAP (She had to go up to a slightly higher setting, but is handling it better).
The nurses are concerned with Lilly's weight gain... she only averaged 5 grams per day gain. So, they are going to increase the calories in her food starting tomorrow. They currently are getting 24 cal per ounce in her milk... she is going to start getting 26 cal per ounce. Davis's food is going to stay the same. Not sure why the low weight gain for Lilly is such a shocker... she is only on fluid restriction to help close her PDA and she was given a dose of Lasix to help get rid of fluid accumulation in her body, and we're surprised she only gained 35 grams over the week... well, I think she is doing great. Oh well, I guess the added calories means she will get bigger quicker.
Lilly gained 60 grams today, so now she weighs 2 pounds and 10 ounces (that makes 95 grams over 8 days, that averages just about 12 grams per day... and they're concerned about her lack of weight gain, booooooo). Davis gained 10 grams, keeping him at 2 pounds and 8 ounces.
Day 29 - 1/1/12
Lilly and Davis are doing well. Lilly is still handling her CPAP fairly well. Davis is doing great on his ventilator. They are going to start giving Davis steroids tonight, with hopes of moving him to a CPAP tomorrow.
Today was the big measurement day for the kids. Both grew 0.5 cm longer... making Lilly just under 14 1/2 inches and Davis just over 14 inches. Both kids also weighed in at 2 pounds and 8 ounces (Lilly is 10 grams heavier than Davis... little miss piggy!).
They went up on Davis's food again. He is now getting the same amount of food as his sister... 22 ml every 3 hours. Davis has been on continuous feed due to refluxing, so he gets 7.3 ml stretched out over every hour. Lilly gets her food stretched out over an hour to help her with her reflux.
Sunday, January 1, 2012
Day 28 - 12/31/11
Everything continues to go well with Lilly and Davis.
Lilly is doing great on the CPAP and Davis is doing well on his ventilator.
They went up on Davis's food today. He now gets 21 ml every 3 hours (was 19.5 ml).
Davis lost an ounce, weighing 2 pounds and 7 ounces. Lilly stayed the same as yesterday, 2 pounds and 8 ounces.
Day 27 - 12/30/11
Lilly is still doing well on her CPAP. She got her last dose of steroids this morning... hopefully she continues to do well without them.
Both kids gained weight today. Lilly gained a couple ounces and is now at 2 pounds and 8 ounces. Davis gained 4 ounces and now weighs the same as his sister.
Friday, December 30, 2011
Day 26 - 12/29/11
Finally some good news... Lilly went to the CPAP at 8:00 in the morning and she is doing great. She is on lower settings and she's handling it very well. Davis is doing well on his ventilator. He too is on low settings. It'll be a couple days before they start to talk about moving him back to a CPAP.
Lilly lost a few ounces yesterday, but that was to be expected. The Lasix they gave her yesterday is a diuretic, and they expected her to lose water weight. She also had a couple days of big weight gain, so losing a little is not a surprise. Her lungs sound really good, so looks like the Lasix worked. She weighs 2 pounds and 6 ounces. Davis lost a few grams and now weighs 2 pounds and 4 ounces.
Both kids also graduated to the next size up in diapers! Doesn't really sound like a big deal, but means our little ones are growing up!
They are keeping their feedings the same.
Wednesday, December 28, 2011
Day 25 - 12/28/11
Day 24 - 12/27/11
Today was another good and bad day.
Davis didn't last long on his CPAP, so back to the ventilator... They see some swelling in his voice box from pulling and reinserting the ventilator tube so many times, so they may have to give Davis some steroids in a few days before trying the CPAP again.
Lilly started steroids today in hopes that she will be able to move to a CPAP machine. She will get a total of 6 doses over 3 days. They will see if she is ready to try the CPAP tomorrow morning.
The good news... both kids continue to gain weight and do well with their feedings. Lilly gained 80 grams! She now weighs 2 pounds and 9 ounces. Davis gained 30 grams and he now weighs 2 pounds and 5 ounces.
Both kids are getting the same amounts of food.
Monday, December 26, 2011
Day 23 - 12/26/11
Lilly and Davis got their full measurements yesterday, but we forgot to ask about them... bad parents.
Lilly measured 14.2 inches long, so grew a little bit from last week. Her head also was larger, now at 25 cm (was 24 cm in previous weeks). She lost 10 grams today, but still weighs in at 2 pounds and 6 ounces.
Davis measured 14 inches long, growing 1/4 inch from last week. His head is also larger, now at 25.5 cm (1.5 cm larger than previous weeks). He gained an ounce today, now weighing 2 pounds and 4 ounces.
The big news... Davis went to a CPAP today (hopefully the 3rd time is a charm). He seems to be doing ok on it... we'll have to see how he handles it over time. They are going to consider putting Lilly on a CPAP tomorrow. First, she gets a chest x-ray tomorrow morning. Depending on the x-ray, she may need steroids first.We are hoping and praying she doesn't need steroids and can go straight to a CPAP... there can be some bad side effects with steroids.
Both kids are eating the same amount of food.
Sunday, December 25, 2011
Day 22 - 12/25/11
They didn't make any changes to their feedings or ventilator settings.
Day 21 - 12/24/11
Lilly and Davis continue to do pretty well! Lilly gained another ounce and is up to 2 punds and 6 ounces, woohoo!!! Davis lost an ounce and is down to 2 pounds and 3 ounces, booooo!
Everything else is pretty much the same.
Friday, December 23, 2011
Day 20 - 12/23/11
Today was a great day for the kiddos! Both gained some weight. Lilly gained 20 grams... she is still at 2 pounds and 5 ounces, but that much closer to going up! Davis gained 80 grams, bringing him to 2 pounds and 4 ounces (he's catching up to his sister)!
Feedings are still the same.
Both had their blood gases tested this morning and everything looked OK. So, they decided to lower both of their ventilator settings. They will test their blood gases again tomorrow morning and if everything still looks good, they will lower even more. Hopefully it won't be long before they are off the ventilators completely!
Lilly may have to get a blood transfusion soon. This is normal with preemies... apparently their little bodies can't make blood yet and those darn nurses keep taking blood from them. They say they use the highest rated blood at the blood bank. Blood is good for 1 month once opened, so she will always get blood from the same bag, as needed... this is done to minimize the risks of using multiple sources. Davis may eventually have to get a transfusion too, but his levels are OK right now.
Aunt Lori came back into town today for the holidays. It's been 18 days since she last saw them in person. She thinks they look a lot bigger and that their hair is getting long (well, at least longer...)!
Day 19 - 12/22/11
Both babies are doing well today. They are still getting the same amount of food and both continue to handle their feedings well.
Lilly and Davis both weigh the same as yesterday. Lilly at 2 pounds and 5 ounces and Davis at 2 pounds and 2 ounces.
They went down on Davis's ventilator settings today and are keeping Lilly's the same. The nurse told Mom that they plan on trying CPAPs on both kids within the next week... hopefully they can handle it!
Lilly and Davis got to meet their Aunt Cheryl and Uncle Mike today. They'll be back to see our little ones again on New Year's Eve when they pass back through town.
Thursday, December 22, 2011
Day 18 - 12/21/11
Day 17 - 12/20/11
Both kids did great today! Lilly gained another ounce and is up to 2 pounds and 5 ounces! Davis gained 2 more ounces and is at 2 pounds and 3 ounces. The kids are getting big (well, kinda...)!
Davis went down on his ventilator settings today and is handling it well, yay! Lilly is holding constant.
Both kids are eating the same amount of food and are handling their feedings well.
Tuesday, December 20, 2011
Day 16 - 12/19/11
Both kids gained weight today! Nice to see after a couple days of decreasing weight... Lilly is back up to 2 pounds and 4 ounces. Davis packed on 100 grams, bringing him to 2 pounds and 1 ounce. Hopefully they will continue to gain weight tomorrow!
They are both handling their feedings well, so no changes there. They are also holding steady on their ventilator settings. Both kids will get blood gases tested again tomorrow morning to check the levels of CO2. Davis will get another X-ray on his chest so they can take a look at his lungs.
Grandma, Grandpap and Great Grandma are leaving tomorrow, so they all stopped by to visit our little ones and to say good bye.
Sunday, December 18, 2011
Day 15 - 12/18/11
Two weeks ago tonight, our little babies were born. Feels a lot longer than that...
Both kids had a step back today. They check the gas levels in their blood regularly to make sure their little lungs are expelling the CO2 like they should. Both Lilly and Davis have elevated levels of CO2 :( They are going to check them both again in the morning and see how everything looks. If they are still elevated, they will have to increase their ventilator support... definitely not what we want. Hopefully they'll rebound from this and continue decreasing the support required from the ventilator. We need them to go to CPAPs!
Lilly and Davis are both getting the same amount of food as yesterday (20 ml for Lilly and 18 ml for Davis every 3 hours). Davis got his pick line removed this afternoon! Its' great to see some progress for both kids.
On Sundays we get full measurements of the kids. Here are today's stats...
Lilly: She lost 10 grams today, still weighing in a 2 pounds and 1 ounce. Her head is the same size as when she was born. She grew to 14 inches long... 1/2 inch longer than when she was born.
Davis: He lost 60 grams today! He now weighs 1 pound and 14 ounces. His head is the same size as when he was born. He is now 13.75 inches long... 3/4 inch longer than when he was born.
The nurses are not concerned about their weight fluctuations. They say they'll move up and down for the first few weeks before they start to pack on the weight more consistently (we're also adding a Crisco based marshmallow fluff dipping sauce to mom's steady diet of fried chicken... we need more calories in her milk!!!).
Day 14 - 12/17/11
Lilly and Davis both lost some weight today... boooooo! Lilly lost 50 grams, bringing her down to 2 pounds and 1 ounce. Davis lost 20 grams. However, he is still at 2 pounds even (20 grams must have been lost in the rounding...).
Lilly got her pick line removed today, woohoo! Davis gets his line removed tomorrow.
Lilly is up to 20 ml of food every 3 hours. Davis gets 18 ml each feeding. They graduated from the gradual step up feeding schedule and now are getting full feeds! Their food amounts will now be based on their weight (160 ml a day for every kg of body weight... in case you just dieing to know the formula).
We didn't hold the babies today :( We got to the hospital late and they looked all warm and cozy sleeping in their beds, so we decided not to disturb them.