Saturday, February 28, 2009

Here We Go Again

Well, unfortunately Aubrey came home running a fever yesterday. Bless her heart. I have never seen sickness like this before. She has NEVER EVER been this sick before. Seth is convinced that the sick season is just bad this year. I don't know if this is just what life is like with a kid in daycare or just life with a kid in general. She has always been so healthy. She is still running a fever this morning but is not as lethargic as yesterday. We are hoping to get her fever to break today and hopefully it will stay away. I understand that this is life with a kid and it would not be as big of a deal if we weren't dealing with the NICU stuff. The good news is that hopefully she is getting it out of the way before the girls come home. I am still stuffy and coughy so the good news is that I couldn't go to the NICU today anyway - or tomorrow for that matter so us sick girls may just get a special movie today and snuggle.

The girls are doing great - charming their nurses. Here is what I have learned about my daughters through our most recent phone conversations! Reagan loves to drink from the bottle but we have been told that every single baby that comes through the NICU And TCN will do really well feeding and then all of a sudden they will stop. So, we have been told not to get discouraged when this happens. She gained weight to 2 lbs. 13 oz. Cameron has a temper according to her nurse last night - when she gets mad her heart rate skyrockets. Cameron is evidentally higher strung than Reagan because her resting heart rate is around 160 while Reagan's is 120's. Cameron's urinalysis did not come back indicating a kidney stone - YEAH! Her nurse last night seems to think that they have really dried her out and that is all that it is. She is still off of the cannula and last night she weighed around 2lbs. 4.5 oz. Both girls like to explode their diapers and make messes on their clothes - which makes for fun laundry for Mommy since the NICU sends it home. Both girls have gone up on their amount of food and I found out that in total they are drinking together about 14 oz. a day! Reagan averages almost an ounce every three hours and Cameron is a little over a half an ounce every three hours. Seth took milk up to the hospital last night and kangarooed with Cameron. Reagan slept the whole time that Seth was there. He said that you could see the whites of Cameron's eyes so much better and she was so alert. They had a good time together.

Friday, February 27, 2009

Sick of Being Sick

Okay, so I am officially sick of being sick - ARGH!!!!! I woke up today after three days on the antibiotics and I feel worse than when I started! Man! And even though I have not had a fever since Sunday, if I still have a runny nose, sore throat, or drainage - I cannot go to the NICU Sunday. I miss being a mom to my baby girls.

I know boo, hoo - enough whining Leslie. Sorry just had to let it out for a minute!

So, both girls lost 10 grams last night - yes you heard it right - both of them. The nurse said - it must be a twin thing! I dunno - I am not a twin but I guess she could be right. So, Reagan drank 10 mLs last night of her food and she really seems to enjoy drinking from the bottle. When I called this morning both girls are doing well. They may try Cameron off of the cannula today but they are still not sure that her lungs are ready. The doctor said it depends on her exam this morning. Cameron's heart rate has been relatively high the last few days - which normally means a blood transfusion. However today I found out that they think that the diuretic that she was on may either have given her a kidney stone or have dehydrated her a little too much. It appears that the only treatment that they would do for that would be to switch her off of that diuretic or discontinue it. Poor Cameron - she is such a trooper. I think it is a fine line for the docs about the diuretic because it helps to keep fluid off of the lungs to push them further with their respiration so it will be interesting to see what happens next. Seth is going to take milk to the hospital tonight and so he will get to see the girls for the first time in quite a while - I don't know if he will recognize them...I don't know if I will recognize them either when I go. They are getting so big! I am so thankful that grandparents have been able to go to visit the girls - I can't stand the thought of the girls laying there with no visitors for so long. As I was getting off the phone - the one of the therapists was coming to work with Reagan - I think it was the OT. I cannot wait to hear how it has gone!

Good news. Cameron is on room air only!!! She is not on the cannula. They have scheduled a urinalysis for this afternoon and we should have the results tonight to see if she has a kidney stone.

Thursday, February 26, 2009

More Cute Photos with Mimi and Papa

I am so jealous! Just you wait until Sunday!

Eye Update

The pediatric opthamologist and I have been playing phone tag - in general, I have assumed that when you hear from the doctor that the news is not going to be grand. This morning I got in touch with him and found out that Cameron has stage 2 growth (preplus disease) in both of her eyes, Reagan has stage 2 growth in one of her eyes. If the doctor checks them next week and they are stage 3 then he will want to do laser surgery on their eyes - that day! And with surgery comes possible sedation and/or being intubated. Yikes! I do not know what that means for them respiratory wise - if they will have to build back up to where they are now or not. He also said that for about 10% of babies who have ROP, the surgery is not effective and they will require further surgery. So, I believe that our current prayer is that IF the girls require surgery that they would be in the 90% that are receptive to the procedure. If the girls eyes remain at stage 2 then he will recheck them the following week.

I love the TCN nurses that I have talked to so far. They ooh and ahh over them and tell me how cute they are - which I eat up like crazy! Reagan is almost 2 lbs. 12 ounces and Cameron is 2 lbs. 5.5 ounces. They are really growing! Friday is the magic day that they will be trying Cameron off of the cannula. I pray that she doesn't have to work too hard and that she will be successful if she is ready. If she is not, then I want for her to have what she needs. Once again we are filled with lots of praises and a few specific prayer requests. Sunday is the official day that I should be allowed back in the NICU as long as I do not run any fever between now and then. If I do, then my timeline starts over for five more days!

Wednesday, February 25, 2009

Oh What A Night

I called late last night to check on the girls to find out that Cameron had been moved to the triage room - of course the worrier immediately came out in me and I thought something was wrong - oh no! She was being moved to the TCN with her sister - I was so excited and now the two sisters are side by side. I got a quick update - Cameron is 2 lbs. 4 oz. now and she grew 3 cm. in length. Then, I talked to Reagan's nurse and she is now 2 lbs. 11 oz. but her belly had puffed up again - I told the nurse she will probably use the bathroom and get rid of all of her weight gain. So, I checked back again on Reagan this morning and her belly had gone down some BUT my big girl drank from a bottle last night! Can you believe it!?!?! She gets something like 23 cc (I think that is the measurement they use) at each feeding and she drank 15 cc through a bottle! I am so proud of her!

I am also awaiting a phone call from the eye doctor today to hear about the girls' eyes. But for now I am walking around with a permanent smile on my face. I am so proud of my big girls. Once again, the Lord is giving me hope for April and that one day we might show up to the TCN and hear - they are ready to come home!

Monday, February 23, 2009

Maybe They Really Are Identical!

Here they are 9 weeks old and now they really are starting to look alike. The first picture is of Reagan in her new home in the Transitional Care Nursery. She moved today at two. The second picture is of Cameron - look she's not yellow anymore! Yay! This is the most alike that they have looked so far (and I am seeing a resemblance to Aubrey with each growing week). My parents went to visit the girls today and they are both doing so well. Did I mention earlier that Reagan is only on one medicine now - a potassium supplement - I am so proud of my girls! I could just stare at the these pictures for forever - they are so beautiful. Sorry, I know you didn't check on the sight to hear me gush. I am hoping that since they are both enjoying being swaddled so much that they will both gain a little more quickly since they won't be moving around as much. I cannot believe it - it is actually beginning to seem like an April homecoming may actually be possible. Seth and I are so blessed. I cannot wait until I am symptom free so I can get in there and hold those babies!

Movin' On Up!

I called today to check on the girls and boy did I get a surprise - Reagan is the next baby on the list to move to the TCN - Transitional Care Nursery. That is where babies go to feed and grow! I am so proud and scared all at the same time. I feel like the girls know that they are together but this is what we have been praying for. This is the kind of progress that we need for them to make in order to get ready to come home. Of course, she still has quite a while before that can happen but what amazing news! They say she could go as early as today but probably this week! I am sad that I may miss the transition for her but am so proud of her growth. The girls are at 2 lbs. 9.5 ounces (Reagan) and 2 lbs 2 ounces (Cameron). They have decided to go up on the amount that Cameron is being fed today to hopefully help her to gain some more weight. They also discussed having her take a go at coming off the cannula today but have decided to give her a few more days! What a big week!


Hello, well another day with a sore throat for me so that guessed it, another day without seeing the girls. Seth had to run to the hospital late last night to deliver milk for the girls and sign consents for vaccines. He and I both think that it is very scary thinking about our little ones getting all those pricks and stuff but I figure there is no better place for them to be for their first shots. Seth wasn't allowed to go in because of me this time but the nurse said that the girls are now being swaddled - which they love and it helps to hold them still. I am so excited about being able to swaddle them - we never really got to do this with Aubrey because of the brace for her hips and I bet there is tons of blanket leftover when you wrap up these little bundles!

They are both now with the same nurse, which I like because you only have to talk to one person. All of the primaries have been working and they all pretty much said that Cameron is definitely following in her sister's footsteps with trying to crawl and excercising her vocal cords on a reguar basis. Reagan seems to be sitting back, chilling out, and watching her sister show her what she has taught her right now. Here is what I know should be happening this week: bloodwork for both girls, eye exams, vaccines, Reagan should begin to meet with the speech therapist two times a week, since Cameron is off of the cpap now she should be able to be evaluated with all of the therapists, and hopefully I can start to go back at some point this week. Since Seth was at the NICU last night we did not call for an update so I am not sure where the girls stand with weight and stuff but I will find that out today when I call after rounds (about 10:30 or so).

Saturday, February 21, 2009

After All This Time...My Turn Has Come

As much as I don't want to admit it - I think I am getting sick. After all these germs that we have had at our house - I think the croup finally did me in. It's no big deal...just a sore throat, headache and exhaustion. I am praying that it will resolve itself soon. But for now, Mom's out of the NICU just in case it is more than just being tired.

The girls had a good day today. Today Grandpa and Nana (Rick and Joyce) came and held the girls. Hopefully they can pass along the pictures since we couldn't be there. Cameron is still having troubles with reflux but not getting sick as much since they lowered her volume. Reagan is on room air again and off the cannula and Cameron is still on the cannula. It is time for their 2 month vaccinations - I cannot believe it.

Today Seth was the an awesome dad and worked so hard making shelves for the girls' closets to help add more storage for us - they look amazing! I am so thankful to have a husband that is willing to do things like that for his family.

Friday, February 20, 2009

Little Bits

Okay, I know that my posts are sparse when we are sick but that is because my updates are just as sparse. Here is what I know for today. Both girls are on the cannula. They have decided that Cameron desats just as much on cpap as she does on cannula and she HATES the cpap now so why not just let her hang on cannula if she can? So, as of this a.m. that is what they were doing. Also, Cameron has been spitting up (or vomiting - is that the same thing? I think so. You can tell Aubrey was not a spit up kind of kid because I have no idea!) since last night. Not continuously but I don't really know the specifics. What I do know is that they are lowering her volume to help, raising her bed at an angle more...basically doing whatever they can for what they think is reflux related without giving her meds. She was previously on zantac but hasn't been on it for a while. They are also giving her some extra potassium because she is using the bathroom so much she is not maintaining that level very well. Reagan should have had a transfusion today if her veins were cooperative but my only report on her was that she was doing fine because her nurse was giving the other baby a bath when I called. So, that is what I know for now. I will update soon. Aubrey is now fever free and not contagious - yippee!

Thursday, February 19, 2009

Trading Places

Well, Reagan was supposed to have a blood transfusion today (yes she surprised us all again with low hematocrit levels during routine bloodwork) but her veins would not cooperate! So, they have decided to give her one tomorrow hoping that her veins will be more accessible. Both Mimi and Papa and Grandmama went to visit the girls today which was nice since Seth and I still cannot go because of sickness at the house. The summary of the two visits were this - both girls look well. Reagan was sleeping soundly...dreaming and smiling...dreaming and pouting...nice and quiet. Cameron was trying to crawl in her isolette...pulling her cpap off of her face...launching herself all over her isolette! So, now Cameron has traded places with her sister - making the Carter name proud by being quite the fiesty one - it looks like that blood she got yesterday is really doing her some good! We used to hear that Reagan would do the same thing but not as much since she has moved to the cannula. So, maybe Cameron is starting to show us that she is sick of the cpap as well! We can definitely pray that is the case.

Reagan had a visit with the speech therapist today who worked with her on the pacifier and her ability to handle being taken out of the isolette to be worked with and staying calm. She did great and performed just as they asked her to. I believe that next week she will be seen twice by the speech therapist in hopes that she can get ready to work on orally taking her feeds. They will not allow her to do that until she is 1500 grams - she is a little over 1100 right now.

Cameron had her bloodwork and they found that her triglycerides are still high (they have been all along) but they are hoping that the protein that they have added to her milk will bring that level down. They also checked her billi levels and they were still a little elevated but not enough to draw the conclusion that something is wrong with her liver. They think that it is just taking her body longer to get rid of the TPN. The nurse practitioner said today that the levels were not an alarming amount at this point.

Aubrey has croup and sounds really nasty when she coughs. Evidently croup is contagious if you have a fever so we are still awaiting the point when she will be fever free so we can start the 24 hour wait time before we are allowed back in to see the girls. Bless her heart, she just has been nailed this season. I guess we waited a little too long for her flu shot this year (we are awaiting the second shot of it in about 2 weeks).

So, I guess that's it from the Carter's today. I am so thankful for the love of grandparents and how they can step in for us when we cannot be there ourselves!

Weight Correction

Okay, so I realized in my haste to write the last post that I posted wrong about Cameron's weight - she now weighs 2 lbs. and 3 ounces. Reagan now weighs almost 2 lbs. 8 ounces. So, they are both gaining. Cameron is doing better since her transfusion and her heart rate is down from earlier (which is good). Just wanted to make the correction before I forgot! Thanks for praying for our little ones!

Wednesday, February 18, 2009

TPN and Eyes

Well, Cameron had her blood taken at 4 am this morning to check on her triglycerides, billi levels and a bunch of other stuff. Turns out her billi level looks good - praise the Lord! but she does need to have a blood transfusion because her heart rate is running high and she is having some desat issues. Both girls' eyes have progressed to the next zone in the ROP screenings...which means that things have gotten worse I just don't understand how. They will be screened again next week. Cameron has dropped back under two pounds and Reagan is now 2 pounds and 7 ounces. Reagan's body seems to be getting with the program in the area of weight gain - and for that I am thankful. Sorry to be so short. But we have a sick little one at home again - bless her heart. So I am going to run but will keep you posted with any new updates that I get!

Monday, February 16, 2009

Two Months Old

We're Two Months Old This Week!

Doesn't Reagan look like she is smiling here? Well, we (my parents and I) went to the hospital to give Reagan her bath and while we were there, my parents were given a surprise and were able to hold both girls for some Meme and Papa time. They got to hold the girls as they were getting fed and I think that it helped some with their reflux because they were upright for most of their feed. Here are a few pictures of their special time together.

And here are some photos from Reagan's bathtime with Mommy!

I really think that Reagan is starting to look like a Carter now - doesn't she look a little like Aubrey? The other cool thing is that we are now allowed to begin to bring some clothes for the girls to wear. They have been wearing clothes all weekend. We were told to only bring the really narrow stuff because those fit the girls a bit better. This was very exciting news to me!

Sunday, February 15, 2009

Another Great Visit...and New Prayer Requests

Well, we had another good visit today...which I will write more about later. But for now I just wanted to update you on our prayer requests. So many prayers answered already and thank you all so much for being faithful in praying for our family so far and please continue to do so.

-Both girls are on full feeds with additives being placed in their milk to help them to gain weight.
-Both girls do not currently have any IV medication (any meds they take are now orally through their feeding tubes)
-Cameron's infection is gone - no more staph!
-Wonderful bonding experiences with the girls
-Reagan has consistently gained weight for several nights in a row and is now well over 1,000 grams!

Prayer Requests for Immediate Needs:
-Cameron is not gaining weight like we had hoped. They have added protein to her milk - please pray that she will tolerate it well and that she will begin to gain weight again (she has lost for the last few nights)
-Cameron's billirubin levels are going down (which is a good thing) but it is not going down as quickly as they would like. They are planning on doing more bloodwork again this week to check her levels again. If the levels do not continue to go down as they would like they will begin to possibly run tests on her liver to see if it is functioning correctly (you may remember me saying that we had been told that the TPN that Cameron was on for so many weeks can take its toll on the liver). Please pray that Cameron's body would get rid of as much of the TPN as possible and that her liver is doing all that it should. I pray that her body just needs time and that all is functioning correctly.
-Both girls are in the critical stage for developing ROP - retinopathy of prematurity - the eye issue that they have been getting weekly screenings for. Their last results came back showing that things have gotten slightly worse. I am not really sure that I understand any of this but please just keep their eyes in your prayers!

Prayer Requests for Down the Road:
-Gain weight and grow
-Respiratory growth and independence for both girls - Reagan has had the cannula placed back on (even though she has it pulled off her face for much of the time) and Cameron is on the cpap. Pray that as they grow, so will their strength and their bodies will be able to function better
-Feeding: They have placed Reagan on a new feeding schedule to help prepare her for working with therapists and Mommy for feeding - she is now being fed every three hours. During that three hours they run her food for an hour right now. They are hoping to slowly shorten that feeding time to mimic a true feeding like with a bottle or nursing. She must be able to stay on this schedule in order to work with therapists.

Thank you so much for your prayers and support. We have made so much progress and we are so thankful to God for all that He has done for our family. We feel so blessed to have you joining with us in prayer for our little ones!

Saturday, February 14, 2009

Just testing this out

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Identical twins?

We arrived today and saw the girls were in outfits and I thought they looked so adorable...especially when you see how big the leg holes were on the outfits they were in. I was also so excited because to me that means that we are one more step closer to bigger milestones. I later found out that they will probably not let them stay in clothes because they are not quite to where they can maintain their own body temperature yet. I made the comment - oh look wouldn't it be cute if we could get a picture of them together - their first time side by side since they were in the womb - and they said we could do it! I was so pumped.

You can compliment Seth on his photography skills later. Yes, our girls are identical twins even though they do not look it right now. I have several things to point out about these photos for you -
1. perspective - Seth was on Cameron's side of the isolette and so she looks tons bigger. You can see the third picture with Cameron's eyes half closed because of the flash was taken by the nurse on top of them and they look more around the same size (that is the only reason why I am including it!). Plus they are positioned on this weird pillow mattress thing which had their bodies at weird angles. The other thing is that Cameron's face looks way bigger and that is because it kind of is due to the hydrocortisone that she is on (it is a steroid that she has been on for a couple of weeks now but they are weaning it slowly now) but they also have her feeding tube taped oddly to her face which pulls her skin below her chin out, too!

2. skin tone - Cameron's skin does not look this yellow in person. The yellow blanket doesn't help but I think it still looks drastically different because Cameron had been on TPN for so long and Reagan was only on it for about 2.5 weeks or so. She is no longer on the medication to help remove the yellowness but I am assuming that with more time her skin will return back to "normal" coloring.

3. Weight - Reagan weighs 1 kilogram now (over 1,000 grams) and Cameron is smaller at about 950 grams. Doesn't look it, does it? Isn't that funny?

We got their a bit late so it was only a one bath day and Cameron won today. Here are a few photos along with some things I learned about my daughter -

1. - Move quick! - She gets really mad during her bath (she does this with her nurses too!) and will start to turn beet red and cry (or should I say yell).

2. - Be prepared - If she hears that we are coming to give her a bath she will purposely save it for during her bath and continuously go with each time she gets mad during the bath!

3. - It is so much fun even though I felt as if I had never given a bath to a baby before!

4. It completely wears her out so it is the perfect time to kangaroo with her afterward!


Friday, February 13, 2009

Quick Update

I am exhausted so the update will be quick tonight:

Reagan - no desats since she received blood; increase in food today; doing well

Cameron - took blood at 4 a.m., hematocrit at 30, which is the lowest they will allow - if it goes below then they will give her a transfusion - so realistically a transfusion will probably take place in the next few days; still having random desats (blood should help this if it is the culprit); doing well otherwise

Last night the girls weighed 980 grams and 979 grams which means they both weigh about 2.5 pounds - isn't that cool that they were exactly the same! Hoping to go in tomorrow to kangaroo and assist with baths (another first - very exciting!).

Good night!


"Fabulous...your girls are doing fabulous!" Those words were music to my ears today. How wonderful to hear that. Both girls are working so hard and making progress. Here is the latest:

Cameron had to return back to cpap. They hope that maybe after giving her a little more time to recover from the lung issues this weekend that she will be able to return to the cannula soon. She continued to have some desats today and they are thinking that it is her body's way of slowly returning back to normal but she has not required any oxygen since returning to the cpap.

Reagan had some routine bloodwork done and they found that her hematocrit was low...they were so amazed because she was so asymptomatic yesterday when they transitioned her. Today she began to become more so...she was pale and having desats. So, they gave her a blood transfusion today and since then she has not had any desats.

The speech, physical and occupational therapists came to visit the girls today. They could not assess Cameron very well due to the cpap but they did work with Reagan. She is doing what is expected for a baby at her age and in a few weeks she after she has gotten just a little bit bigger will begin to work on baby steps towards trying to feed orally. The other therapists will work with both girls when they are kangarooing.

At last check Reagan had gained 20 grams which put her at 2lbs. and 2.5 ounces. The nurse had not weighed Cameron yet. All in all the girls are doing and we are so pleased with their progress. Reagan got to kangaroo with Daddy today. She snuggled in close and took a nice nap with him today. Cameron's turn tomorrow!

Wednesday, February 11, 2009

Today I arrived at the NICU and had two surprises for me - Reagan is completely on room air with no respiratory support and holding her own beautifully and Cameron is on nasal cannula and off of cpap! I am so proud of my girls. I pray that they will continue to do well with these new changes. Here are some pictures of my precious little ones:

These are of Reagan today - she just graduated to a bigger pacifier and I think it is hilarious how much it takes over her face but she loves her pacifier already!

These next few are of Cameron sleeping and resting on the nasal cannula. They left her hat on in case they have to put her back on the cpap later.

I tried to post a video of Aubrey but we are experiencing technical difficulties right now. Stay tuned. Hopefully I can get it to work!
As of last night both girls are over two pounds!

Tuesday, February 10, 2009

Music to My Ears

Today's doctor visit for Aubrey was uneventful - thankfully! Turns out it is just gas and what they called toddler belly. They said that around 18 months almost all toddlers get a big belly look because of the way that they balance themselves - something that I would not know as a first time parent I guess. So, I am thankful for the good report.

After going to the doctor I headed to the hospital. The girls are doing so well. As soon as I arrived I heard a sound that was the most beautiful sound ever. It was Reagan crying LOUDLY! I could hear her across the room from over at Cameron's isolette. Then, later I was at Reagan's isolette and heard Cameron crying LOUDLY, too! I couldn't believe how strong their cries were and how sweet.

Another amazing thing that I was told by their nurse was that technically Reagan is doing so well that she could go to Transitional Care Nursery (a.k.a. TCN)(which is the step down nursery from the NICU where babies go to feed and grow) because she is on full feeds and is on the nasal cannula. You cannot go if you are on cpap or intubated! I was amazed! Now, she is not going to go to TCN anytime soon because she is so small and there are plenty of other babies there that would go before her but how amazing is that?!?!? My heart swelled for my strong little fighter! Right now the plan is to try her off of the nasal cannula tomorrow because it is time to push her again - she seems ready, she pulls the cannula off of her face regularly and does well and she is saturating at 97-100%. She has also been handling a large volume of food but not a lot of calories. So, they are going to decrease the volume and add more microlipids to her food as well. She also got her eyes checked today but I do not know the results. They will check her eyes again on Tuesday of next week.

Cameron was doing well when I arrived and had not been desatting as much. She had one of her favorite nurses today so I think that helped. They added a second packet of HMF to her milk and she is doing fine with it. She has returned to all her original settings on the cpap. They are planning on trying to wean her on her cpap settings as well to try to get her nasal cannula soon. She also had her eyes checked today and will be rechecked next Tuesday. They are also decreasing the hydrocortisone that she has been on and she is working on her second negative blood culture (it is running right now and so far has been negative since early Sunday morning) which means that they can maybe discontinue the antibiotics soon.

I am hoping to try to meet with a developmental therapist this week to take a look at the girls. She should be able to help tell me what the girls are doing well for their development, what they need to work on and how we can help them achieve those things. The idea is that be enabling the girls to cope and soothe themselves better will help for them to develop better - I think.

Today on my way back and forth to and from the hospital I was listening to the Duke Radiothon for the Children's Hospital and listening to the stories of the kids. I am sure that my girls are benefiting from those funds more than I can imagine. To hear stories from both the children's wing and the NICU were unbelievable and I cried most of the way home. Before we went to the hospital Seth and I talked about what a blessing it was to be in a place where we had to choose between two unbelievable hospitals - Duke and Chapel Hill. Not too many people are that fortunate.
Well, Seth called to check on the girls and as of right now Cameron is continuing to desat quite a bit. She is tolerating her feeds and she gained 10grams tonight (still just shy of 2 pounds). Reagan is doing well and tolerating her feeds as well - they had to hold feeds for a while tonight because Reagan was getting bloated from not using the bathroom but she has been going all night. Reagan was just under 2.2 pounds tonight.

We are also awaiting a doctor's appointment for Aubrey tomorrow morning. Her belly has continued to be huge even after recovering from the nasty stomach bug. So, the doctor said that maybe she needs to come in and they may have to do a belly x-ray. I found myself saying "Really? We are really having to do this with Aubrey too?" But the good news is, Aubrey acts as if everything is fine...she just has a big belly right now.

Please continue to pray for all of our girls. We are hoping that all will be resolved for the good soon. I pray that Cameron would have the support that she needs (even if that means that she has to be reintubated - even though I selfishly do not want that). I pray that Aubrey's belly questions will be answered tomorrow and that all would be well. I also continue to pray for Reagan to make progress and to continue to do well.

Monday, February 9, 2009

Seven Week Old Update

Well I went to check in on the girls today and what do you know we have a 2 pounder! That's right! Reagan is now 2 lbs and 2 ounces. She is doing so well that they are increasing her volume again in hopes that she will have another big gain today. She is now drinking about 6 ounces a day. It is amazing because when they first started her on milk she only got what seemed to be a drop and now she is getting 6 ounces! Her nurse also said that during assessments she was removing the nasal cannula for a couple of minutes and Reagan did fine and she has been saturating at 100% so she is hopeful that they may try her again on her own without the cannula.

Cameron is doing well and has not had any bradys since Saturday night when her lungs collapsed. Cameron also gained weight and is still around 1 lb. 15 ounces. Her belly seems to be handling the HMF in her milk and she is drinking about 3 ounces a day of milk. Please continue to pray as she is still having saturation issues. However, the doctors are considering that she is asymptomatic of a lung collapse. Cameron amazes me at her strength. She is my hero. She has had infections, belly issues, collapsed lungs and she remains stable - she is so strong and I pray that she will continue to be so. They are still running bloodwork and she now has low enough billi levels that she does not have to be on the phenylbarbitol that helped to reduce the yellow tinge in her skin. She is still on blood pressure meds and I pray that as her lungs heal that she will also be able to get off of that as well.

I am so excited that in only 3 more days I will be able to go and touch and love on my little ones and hopefully kangaroo too.

Sunday, February 8, 2009

Sunday Update

Well, I went to go and see the girls tonight and check on Cameron's lungs. She was still on cpap and so far has not had to be intubated. Cameron did lose weight last night and has dropped to 875 grams (not sure how much that is in grams). So, they have decided to begin to add supplements to her milk. They added their first packet of HMF (human milk factor) to her milk. Her blood cultures are still running negative but they also ran some new ones last night after the lung collapse to be sure. Hopefully they will continue to run negative. I still do not know how long it will take for the lungs to heal. I am hoping that more information will follow as the days go by.

Reagan has had a very good day and she is 903 grams now (only 4 grams short of 2 lbs!) and they have increased her total milk again. Tonight when I saw her and she looked so content like she was laying back in a recliner just relaxing!

Tonight one of Cameron's primaries will be with the girls and so I am hoping to be able to ask more information from her. But for now, I am thankful that Cameron has seemed to have held her own and pray that her body would heal so that she can get back up to her normal strength and continue to do wel. I also pray that her belly would handle the HMF in her milk well so that we will not have any setbacks in that area! I am also thankful that Reagan is doing so well and seems to be gaining weight right now.

Cameron Update

This morning when we called to check on the girls we learned that Cameron had quite a rough night last night. Around 12 o-clock both of her lungs collapsed last night. Because it was around 3 am when we spoke to the nurses we didn't get a lot more info but we are trying to find more out today. Please keep Cameron in your prayers today.


Saturday, February 7, 2009

Full Feeds

Both girls are finally off of any IV food - YEAH!!!! What a celebration! I am so proud of them. As of last night the girls were at 1 lb. 15 ounces (Reagan) and 1 lb. 15.5 ounces (Cameron)...we will see what they are tonight! I also checked to see about Cameron's blood cultures and the nurse had not heard anything about them so that means no news is good news for now.

Friday, February 6, 2009

Keeping Fingers Crossed

Keeping fingers crossed tonight because as of last night Cameron was only 9 grams shy of 2 pounds! Realistically I know that she could go back down below again but 2 pounds is a milestone we haven't seen so far! Cameron is loving getting milk and is doing well. The current plan is to get her on full feeds by the end of the weekend and NO IV FLUIDS!!! I cannot believe that she is at this point - it is one that I didn't think we would see honestly. I think she will still have to be on antibiotics until she gets 2 negative blood cultures - the first of which should be back tomorrow definitively. Cameron continues to alternate between nasal cannula and cpap.

Reagan is also doing well and they have her up on more food than previously. They added something called microlipids to her milk a few days ago - which I think is a fancy word for "fat" but I don't know for sure. She is up to 1 lb. 14.5 ounces. They are watching her closely and as long as she continues to gain weight then they will not try to add protein to her milk again. The protein addition is what is the suspected culprit of her belly blow up previously. She has also been having some bradys and desats but her bloodwork is coming back fine. So, they are chalking this up to prematurity but will not be trying her off of nasal cannula anytime soon. As I have shared previously, Reagan is our active one who never stops moving but her nurse last night said that when she would get wild and crazy she would go in and flip her on her belly and turn on her recorder (which is a digital recorder full of her daddy talking and singing). The nurse said that she would immediately calm down, close her eyes, and try to put her thumb in her mouth and drift off to sleep. She knows her daddy's voice already! We had been pushing for them to share the recorder between both girls but because of germs and things Cameron has not been able to hear it as much.

The plan was for the girls to be reunited once again in NICU room 7. So, we will see if they are back together again tonight when we call. The time away has definitely been taking its toll - the other night I had a nightmare that the nurses called and said that there was no way the girls would be even close to coming home in April - in fact, they couldn't come home until NOVEMBER! Bet you can't guess what was on my mind as I went to sleep that night!

Thursday, February 5, 2009

Sneak Peek

Well, I had to run milk out to the hospital today and Cameron's nurse said I could come in very scrubbed up, in a gown, with a mask, and with gloves, and not touching anything. She said she would check with the doctor to be sure. WOW! How much my girls have changed in two weeks. Just thinking about seeing them now brings tears to my eyes. They look HUGE! Of course huge is relative right now but they look so much older and it was just the medicine I had been needing. Cameron's jaundice seems to be going away now that she is getting milk. Her cheeks are very big right now due to the hydrocortisone they are giving her (I forget what it is for) but I have to be honest she does have it in her genes to have big cheeks (just look at Mommy). Reagan's body was all tucked into her snuggly but her head and face looked as if she had grown so much. Their weights have not changed much in the 2 weeks since we have seen the girls but they look so different. The girls are doing so well and I pray that they will continue to, I have not called to check on them yet tonight but had two reports today. Both girls' nurses have brought in special blankets and stuffed animals for the girls - they have been showered with love while we have been away. Unfortunately, the time table for Seth and I to be able to go and touch and hold the girls was restarted on Wednesday because Aubrey was sent home from daycare with a reoccurence of her stomach bug. But we are hoping that after today she is not contagious anymore. Wow - what a bug this has been - I have never seen anything like it! I will definitely be happy to see this go!

Wednesday, February 4, 2009

Many Thanks

Well, at last check both girls were doing well and have had their feeds increased. There was not much of a report...which is a good thing! So, I thought I would take this time to say thank you. Thank you to everyone who has kept our girls, our family, the doctors...everything in their prayers. You ALL have been used by God to teach me about faithfulness, love, selflessness, and grace. As I look back over the last few months and the craziness that has been our life I get short of breath and cannot believe all that has happened and the unbelievable thing is that you all have been faithful and seen our family through this from the beginning -THANK YOU!!! Seth and I both have plans to write thank you notes and I pray that we will not leave anyone out but I wanted to go ahead and just say thank you for all of your acts of love....from notes, to meals, to encouraging words, to monetary gifts - each and every one has warmed our hearts (and our bellies too at times!) and made a difference to our family but MOST of all thank you for your prayers! Right now our girls are proof that prayer works - I believe that with all of my heart. I feel selfish to ask but please don't stop!! Thank you, Thank you, Thank you!

Tuesday, February 3, 2009

The Countdown

Well, we found out yesterday that we can count Aubrey's contagiousness ending on Friday so that starts the clock to when we can go back to visit the girls. Cameron has been doing well so far with her food. They pulled her central line last night so hopefully that will help. She gained all the way up to 1 lb. 15 ounces last night but we will see if it lasts. Reagan is still a couple of ounces smaller. She is having trouble with returning to her original amount of food that she was eating. Her poor bowels can't seem to keep up with the large quantities of food that they are pushing for her to eat. They are also continuing to work on drying her lungs out to get her off of the nasal cannula. Both girls had their eyes checked today and we were told that the doctors suspect that the girls will develop ROP (a.k.a. retinopathy) which should begin to show up in the next month or so if they are going to develop it. The doctors will continue to examine the girls weekly to check their eyes.

Monday, February 2, 2009

The Plan

Well, they were awaiting for Cameron's arterial blood cultures to come back before they decided anything for sure on what to do for Cameron's staph infection. It has come back positive and here is the current plan I believe. They have decided to pull out Cameron's central picc line - this is in case the staph bacteria has decided to bond to the actual line that is in her blood stream. After the picc line is removed they will then take the blood cultures again to see if pulling the line out has helped. Also, they are feeding her and as long as she handles the food they are going to keep increasing her food to hopefully get her up to full feeds as soon as possible so that she will hopefully not need another central picc line. They are hoping to only have to give her what she needs through a peripheral IV for medications and any supplemental nutrition that she needs. If her blood pressure goes down again then they will use a different medication that they can continue to feed her with in hopes that they can get her feeds up as much as possible. This is a relatively common infection for babies to get (though still very serious as is any infection for a preemie) that luckily does not have the long term consequences that others seem to have had. She is not bradying or desating right now so she seems to be improving and is getting ready for her first feeding since coming off the dopamine yesterday. I am excited about the possibility for Cameron to get off the TPN because it is not great for her liver for her to be on it for so long. I pray that it will not have long term consequences for her.

Reagan is having her food increased again to its previous amount but they are not adding the extra protein to her milk since she did not tolerate it well. They are also increasing the diuretic (lasix) to dry out her lungs and in hopes to get her off of the nasal cannula. Reagan had gained an ounce 2 days ago and now has lost it (she pooped it all out!) again. One of Cameron's primaries came in and looked in on Reagan and told Cameron's nurse today that Reagan looks huge compared to Cameron - interestingly enough they are close to the same in weight and since I have not been there in over a week I cannot wait to see for myself.

I pray that Reagan will continue to handle the food well and that she will begin to gain weight consistently. Reagan's nurse last night said that eventually their bodies will get the point and understand that they are supposed to gain weight not fight it. I also pray that removing the picc line will be the step that needs to be taken to allow the vancomycin to do its job and that this infection will be eradicated from her little body. I also pray that her body would cooperate with this new plan that the doctors have and that she would handle the food well so that she will not have to continue to be on the TPN or need to have a central picc line. Oh my, this is certainly hard to not be in the NICU with all of this going on. My wonderful and wise husband has continually reminded me that God knew that we would not be able to be in the NICU last week and this week and He is in control of what is going on. Reagan and Cameron are (thankfully) not the first 25 weekers to be at Duke nor are they the first to deal with these issues and for that I am eternally thankful. I know that I have to just continually lift them up to God and know that He has them in His hands and will watch over them. I keep looking back at Cameron's picture and think to myself - my how she has changed since she was born! That was at five weeks old - do they look different now that they are 6 weeks old today? I am sure that to the rest of the world the changes are minimal but to a mother who has studied their faces, their bodies, their feet, their hands - the difference is amazing! I am so thankful for the growth that they have made and look forward to more that it to come!

Sunday, February 1, 2009

Isn't She Cute?

Here she is! Cameron in her first outfit! I love it. This was taken last Saturday after Cameron got to nap with Daddy, her nurse Kari dressed her up and took her picture!