Tuesday, March 31, 2009
Reagan had her first visit with the pediatrician today and it went well. According to the scale she has gained 5 ounces since she came home! Today her poor belly has been rumbling and grumbling and as to be expected she hasn't been as crazy about eating today because of it. Reagan got her first bath at home tonight and now she smells like a bed of roses (I love baby smell even if it doesn't last very long!).
So, the girls weights are as follows - Reagan 4 lbs. 6.5 oz. and Cameron 3 lbs. 13 oz. Either tomorrow or Wednesday I am going to take Cameron's carseat up to the hospital for her to take her carseat test. Reagan gets her eyes checked on Wednesday.
One other cool twin thing - just called the NICU and both girls have been laying awake now for a while - Reagan here at home and Cam in the TCN - isn't it cool how they sometimes will still do things just alike?
Sunday, March 29, 2009
Reagan seems to be adjusting to life away from the NICU well, too. She (in my opinion) has not been crying nearly as much. This could also be due to the fact that they changed her reflux medication. She is sleeping well in between feedings - although sometimes she likes to sleep on Mommy or Daddy's chest instead of her bed - but for now I don't apologize one bit for it because for quite some time we didn't know if we would ever have the chance and I am going to savor every moment of it (even if we are spoiling her a bit). Seth and I have talked all day about how different life is without the monitors and wires. How much more peaceful life is without constantly glancing up to check to be sure that her heart rate, blood pressure, temperature, respiratory rate, and oxygenation are doing! I think that she definitely enjoys being away from the wires, too! Another awesome thing that has helped with our adjustments have been some of the amazing folks that we have had bring us dinner - THANK YOU!!! What a relief to not have to worry about cooking. Your generosity and thoughtfulness have definitely been well appreciated!
Tomorrow will be a busy day. Today while we adjusted to having Reagan home and Aubrey came home from Mimi and Papa's I stayed away from the NICU. My parents went to see Cameron and said that she is doing great!!! She ate 50 ccs with Papa today and they are working hard to fatten her up! The nurses at the NICU all love her and fight over who will get to be with her! Last night she gained about a half an ounce. They have now officially removed her NG tube and her temperature probe. Tomorrow I will drop Aubrey off at daycare and then head to the hospital for some special Cam and Mommy time. Then, I will rush home and later in the afternoon we will head to Reagan's first pediatric appointment.
This week is a big week for the girls as we have appointments and tests being run this week. I pray that all will continue to go well for them and that we will be finding out a specific day that we are to bring Cameron home!
Saturday, March 28, 2009
Friday, March 27, 2009
Anyway, last night Reagan continued to spit up and to be very uncomfortable during periods of the night. Aubrey hardly ever spit up so having a baby with reflux is a HUGE change! We did not get very much sleep and neither did Reagan. They did another gastric pH test this morning and found that they needed to put her on a stronger medicine so they have changed her meds. In doing so, they offered to have her stay tonight to watch her and for all of us to get some rest (I think the doctors took pity on us when she saw how exhausted we were!). So, tomorrow after Seth finishes with his basketball tournament, we will go to get Reagan from the hospital. And we were told today to expect Cameron within a week or so!
On the prayer request side - please pray for our family's transition to having the girls home, pray for Reagan's reflux - that it would be subsided by the medicine so that she can be comfortable (it is so hard to see her in so much constant pain...she hardly ever lays still and is constantly grunting and moving and curling up into a ball), please pray for Reagan's eyes - that they would continue to heal. Please also pray for Cameron - she is having a bunch of tests run this week...she failed a portion of her newborn screen and they are redoing it on Monday, that her hernia would either resolve itself or stay the same size, and she has also had a few bradys this week. They will not let her go home until she is brady free for a certain amount of time.
Wednesday, March 25, 2009
-The last couple of days Reagan has had some trouble with spitting up pretty bad and being extremely cranky at times - this may be due to her reflux. But we are a little concerned and are hoping to talk to the doctors about it.
-Reagan passed her carseat test.
-Reagan had her kidney ultrasound and tests today. We will speak with the doctors tomorrow but I do know that something did show up on the ultrasound but the nurse said that it does not need treatment (I guess we will find out more tomorrow).
-Cameron has had her food switched to being supplemented with formula and seems to be tolerating it well. The nurses want to try to have her switched to additional feedings taken by bottle - instead of every other feed.
-Cameron is now 3 lbs. 10 oz! Way to go Cam!
-The surgeon came to look at Cameron's hernia today and the nurse said that he also will speak to us soon but basically they want for Cameron to come back a month after she is discharged to have the surgery to correct the hernia.
-Seth and I are set to room in tomorrow and to get trained in CPR tomorrow.
Tuesday, March 24, 2009
Monday, March 23, 2009
1 - We now have a van! Hallelujah! We will post pictures later- Seth hasn't even made it home with it yet!
2 - Weights for the girls - Reagan is only 25 grams shy of being 4 pounds and meeting the weight requirements to go home (so technically she is 3 lbs. 15 oz.) and Cameron is now 3 lbs. 5.5 oz. They are really growing!
Daddy is going to spend some special one on one time with the girls tonight! So, we will have a better update for you later!
Prayer requests - Tomorrow both girls will get their eyes checked tomorrow - the pediatric opthamologist must sign off on Reagan's eyes in order for her to go home.
I also continue to pray that the Lord would not allow for either of the girls to come home before they are completely ready to have a smooth transition home. I would prefer for their sakes and for mine that they not have to come home and then go back to the hospital.
Thanks again for continually keeping our family in your prayers!
Sunday, March 22, 2009
Saturday, March 21, 2009
Friday, March 20, 2009
Cameron is now 1500 grams! She is officially at the weight where she can come out of the isolette and they will begin to transition her from off of all the neonatal additives and begin to add formula as a supplement instead (to boost her caloric content). So both girls continue to make progress with their feeding and I believe that maybe they are working together to be sure that they either come home together or within a very short time of one another. In the next few weeks Cameron will have another newborn screen test to check her metabolic levels - which have come back abnormal previously. The doctors think that her TPN levels skewed the results previously so they will redo the test again at full term.
We are so thankful for the great progress the girls are making. Please keep the girls upcoming tests in your prayers. Their eyes will also be rechecked on Tuesday.
Thursday, March 19, 2009
Both girls are ravenously eating their bottles and making great strides. Cameron's nurse even said that she only took one feeding through the tube yesterday - she said that Cameron has just seemed to have taken off and she is now eating almost her entire feed through the bottle. Cameron is determined to catch up to Reagan. Both girls now have a reputation of making pigs of themselves - but we are fine with that! Reagan has to be on the antibiotics for seven days but good news - no head IV. They were able to get one after all in her hand.
Wednesday, March 18, 2009
Its funny today at the hospital I was loaded down with clean clothes and blankets for the girls in bags and someone in the elevator said - "Someone must have had a baby girl." I told them two and they said congratulations. I found myself thinking - I still can't believe that I have twins. They are twelve weeks old and I still can't believe that God would bless our family so much. I am so humbled by how generous and loving God is. What two special gifts and miracles.
Tuesday, March 17, 2009
Reagan has continued to do well today and has returned to her spunky self. Now she is resting. She weighs 3 lbs. 11 oz. Cameron has begun to show her hunger cues and is throwing fits if she is not fed right when she wants it. Cameron weighs 3 lbs. 1 oz. They are both really growing!
Monday, March 16, 2009
Sunday, March 15, 2009
Reagan has! Poor baby has had a very rough day! This morning she started having some trouble with bradying and desatting during her bottle feeding. So, this morning when I was there the speech therapist worked with us to see what was going on. During that feeding she was having a super high heart rate, red faced, very agitated and sounded very congested and kept gulping a lot. She was very difficult to feed - which was a big change from before. She would also periodically get a big spit up smell - which was also new - and the speech therapist said that this is consistent with reflux as well. So, the doctors rounded this morning and decided to run some tests. 1 - urinalysis to check for infection 2- blood work to check white blood cell count to check for infection 3 - gastric pH check for reflux. After the order came in, the nurse tried to get all of the samples she needed for the tests and lets just say that Reagan was less than cooperative. During the course of ten minutes she went through 3 or 4 diapers, pulled out her feeding tube, yanked off all of her leads (the things that measure her heart rate, oxygen saturation, temperature, etc.) and proceeded to cry and scream so loud that she made herself gag over and over again because she was so upset. It was horrible! I thought watching your kid get vaccinated was tough!
I do not have the test results just yet but pray that whatever is going on is not something major or not something that has Reagan in a lot of pain. During all of this Cameron was wide awake trying to check out all that was going on. Her heart rate was also over 200 but she appeared to be completely calm. So, her nurse said that she might need blood - I told her that even though I had hoped that she wouldn't need it anymore that it did not surprise me. The way our course in the NICU has been so far, Reagan usually needs blood and then Cameron usually follows within a week. I do not know if they took blood to check her hematocrit or not but I guess they probably will if her heart rate continues to skyrocket. Cameron was also not really in the mood to eat with the bottle today. She just wanted to hang out with Mommy and be out of her isolette. I think she knows that Reagan is out and she wants to do the same. On a good note, I am getting a little better at changing the girls diapers and clothes over all the wires and leads. I will keep you posted as to what we find out. Please pray that the girls can remain healthy so that we can work towards them coming home as quickly as possible. I also pray that they are able to pinpoint what is going on with Reagan so that she could hopefully be treated and back on track quickly. Although I would prefer for her to not have to take medication for anything longterm, I do not like seeing her in so much pain like I did today. So, if she needs medication for reflux (if she does have it) then so be it. Also, please continue to pray for the girls eyes. Tuesday is the big day where we should really see improvement. I pray that their eyes have not progressed and that the doctor would see a dramatic improvement!
Just spoke with the NICU...on a good note - Cameron is now 3 lbs!!! Reagan's nurse said that her white blood cell count came back fine, her gastric pH came back at a level that is just above the cut off for giving medication for reflux. She said that Reagan is acting as if she may have aspirated some of the reflux into her lungs. They have decided to take Reagan off of all food by mouth for the night at least. They cannot check for aspirate by x-ray until the morning (it wouldn't show up until then) but she also said that even if it is that they cannot do anything for her but let it resolve itself. In the meantime, they are trying to elevate her bed further to help deal with the actual reflux. It appears as if reflux is the culprit of today's drama. I only pray that we can find some ways to help Reagan be comfortable and not in pain.
Friday, March 13, 2009
I didn't go to the hospital today until late because my best friend, Emily, had a baby today!!! Yeah, Tommy was born today at 2:23 - and he is oh so cute! I am so excited for her and her husband! I never realized how big a full term baby would look in comparison to my girls, though. It was quite a reality check! Anyway, Reagan got blood today and yes, she was very cranky! She did still gain weigh today, though, and for that I am thankful. She ate very well tonight - 30mLs! and then she took a quick nap on Mommy. Cameron also had a great day but got a little too excited and used the bathroom all over her isolette - so, she had to have everything cleaned...including herself - which completely wore her out for my visit tonight. But she looked very peaceful afterward! Cameron also gained weight - she is now 2 lbs. 12 oz. The doctor called and told me that they hope that this will be the last transfusion for Reagan and hopefully Cameron will not need anymore. Even though Reagan's body wasn't making red blood cells efficiently enough, Cameron's has begun to make them pretty well - so they are hopeful that we are done with the transfusions for the rest of our stay!
Thursday, March 12, 2009
Reagan moved to her new home today. I plan on taking pictures of her home tomorrow. I just wanted to wait to be sure that it sticks before I celebrate too much! Today Reagan helped to teach Daddy how to feed her with the bottle and Daddy is a pro! She ate 30mLs out of 36. She did great! Then, she was so tired she took a nap against Daddy's shoulder. It was so sweet to watch Seth with the girls - he has such a calming effect over them! They are Daddy's girls already - which he loves. Seth has already decided that we need to invest in another rocking chair or glider because we both love to sit and rock with them - actually Seth loves to nap while holding the girls! He looks forward to visiting with the girls because not only does he get to visit with his precious angels but sometimes he gets a good nap, too!
Tomorrow they will be rechecking Reagan's iron and hematocrit levels to see if she will need to have a blood transfusion. When they have to have a blood transfusion she cannot be fed for 4 hours before, during the actual transfusion, and 4 hours afterward - which could be interesting since every three hours on the dot, Reagan begins to cry and throw a fit if her belly is not being filled in some way (they call it hunger cues!). It could be an interesting day tomorrow!
Wednesday, March 11, 2009
All of these are comments from the nurses lately...and you know what? I love every bit of it! I eat it up! Of course I think they are beautiful because I am their mom but most of all I am so happy that they are healthy enough to be so spunky and to keep the nurses on their toes! Of course I say that now but when they are home and continuing to plot together to keep me running around like a chicken with its head cut off I may think differently!
Weight Update: Last night Reagan was around 3 lbs 9oz and Cameron was around 2 lbs 10oz. They are really growing. I know that Cameron maintained today but have not heard about Reagan yet.
This morning when I arrived at the TCN I was informed that Reagan had been very busy in the early morning and yanked out her NG tube ( I think that is what the tube in her nose is called that her food goes through). So, her nurse decided to bottle feed her for this feeding and then put her tube in. Reagan drank her entire feed through her bottle (which I believe is now at 33 mLs)! What a big girl! Then, when I got to her isolette Reagan had decided to play hide and seek and had wiggled her way all the way down to the bottom of her blanket that she was swaddled in - all you could see was a few hairs sticking up! After such a hard working morning she was not that interested in feeding with Mommy but that is okay. Tomorrow she gets to help Daddy learn how to bottle feed her. Cameron was sleeping so soundly and did not want to wake up to try to eat either. But, after a while she woke up and did the cutest thing - her eyes would meet mine and then she would smile the biggest grin - it melted my heart and made me cry. I do believe that is one of those mom moments that I will remember for the rest of my life - the first time she smiled at me. Could it have been gas? Maybe but I choose to believe that it was because she recognized her mom and was happy to see her. Of course afterward, she chose to show me that she loved me by dirtying her diaper (3 times!)- but that is beside the point!
Tomorrow is the big day for Reagan - they are supposed to try her out of the isolette! Her heart rate is still running pretty high and she is beginning to have quick desats despite giving her the iron. They are trying to hold out until Friday to see if she will need a transfusion but I hope all this hoopla will not get in the way of her transitioning out of the isolette. Reagan's nurse commented tonight to my dad that she really thinks that Reagan is really making great progress and I believe that Cameron has been taking notes because she has really been working hard, too!
I spoke with the physical therapist today and she said that the girls did really great on their initial assessments. She was going to examine them today outside of the isolette and then make a plan on skills to work on. I am eager to hear how their visit went and got some tips on ways to help the girls muscle tone improve and stay like it would have been had they continued to stay in utero.
Tuesday, March 10, 2009
Today was a hectic day with a very short visit with the girls but here is what has been happening - Cameron drank from a bottle for the first time!!! YEAH! She is working hard to catch up with Reagan. Cameron drank 10 mLs on her first try with a bottle! Today, Reagan drank 20 mLs for one feeding and then 5 for the next. Her nurse said that she was very agitated with the eye exam today and took a long time to calm down so that really wore her out. It turns out that 11 o'clock is her very alert feeding time and that tends to be when she performs the best! Reagan's heart rate has been pretty high, so they did some bloodwork and saw that her hematocrit was a little low and also that she was low on her iron. They are giving her iron starting tonight and going to check her "crit" again later to see if she still shows signs of needing a blood transfusion. Thursday seems to be the day that they are working to try to get Reagan out of the isolette - I hope that all this mess with the transfusion won't mess things up. They say that the older the girls get, the less transfusions they will need because their body will be more proficient at replacing the blood cells and making blood (I think that is right - some of this medical stuff runs together) but I guess Reagan isn't quite there yet.
Monday, March 9, 2009
Sunday, March 8, 2009
Saturday, March 7, 2009
Friday, March 6, 2009
Thursday, March 5, 2009
So, here is the report that I have for you tonight. Reagan is up to 3 lbs. 2 oz. Cameron lost weight and so I think she is still around 2 lb. 6 or 7 oz. Reagan is now drinking a full ounce for each feed! Cameron had a kidney ultrasound this week and she does have small kidney stones but they do not appear to be causing her trouble right now - her heart rate was in the 140s when we were there tonight.
I think that is all for the report for tonight...I have to be back at the hospital tomorrow morning at 8am to meet with the lactation consultant to work with the girls. So, not long to sleep for me!
Wednesday, March 4, 2009
Cameron is doing just dandy. They started her back on food today. We forgot to ask how much she weighs. She's still not in the same room as Reagan. The docs are waiting for a room to open up. Reagan had a bath tonight, which wore her out too much to drink out of a bottle. Leslie and I are going up to see the babes tomorrow, and we'll get to hold them too.
The Lord willing, tomorrow should be the glorious day that both Mommy and Daddy get to go and hold and see the girls again after a long time away. I am so excited I can hardly stand it. I have even been planning my outfit - as if it matters but that is how much I am aniticipating this visit. I pray that Aubrey will continue to feel well and that Seth and I would remain symptom free as well.
Tuesday, March 3, 2009
On a good note, last night I heard words I never expected to hear - "You know Reagan is going to be ready to come home soon - be sure that you are ready!" I was in complete shock. Reagan drank her whole bottle last night which was a full feeding. They are hoping to begin working on feeding with Cameron by the end of the week (depending on how she recovers from surgery).
Please continue to keep our girls in your prayers as they recover from their busy day today.
Thanks for your prayers!
Monday, March 2, 2009
In the meantime, the girls have been doing great! Cameron is back off of the cannula again - the nurse practitioners agreed that she does just as well off of the cannula as she does on it...so why put her on something that she doesn't need. The girls were bathed and weighed last night but her nurse forgot to write it down but I do know that Cameron lost a bit and Reagan gained about 10 grams....so they are relatively the same as last reported. They have added another does of beneprotein (not sure if that is how it is spelled) to Cameron's milk to hopefully help her in gaining and they are hoping to move her to being fed for one hour and then not for three soon (like a typical baby feeding schedule). Today both girls are being seen by the speech therapist. Last night Reagan drank 22mL of her feed orally!!!Yippee!!!! And when I called today, the speech therapist was feeding her while I spoke to the nurse and she was already at 15mL. I don't know when Cameron will begin to work on bottle feeding but I don't think they will do that until she transitions to the new feeding schedule. I have been told that we have now reached the point where Reagan will begin to work on feeding with Mom and the lactation consultants. I am so excited and eager for us to be symptom free and fever free (I still have a cough and a runny nose!) Last night the nurse said that both girls about 15 min. apart starting having some decent desats and crying loudly. She went to check on them and each one had made it all the way out of their blankets from being swaddled and had moved themselves all the way down to the bottom of their incubators! I guess they made a plan together and executed it to keep the nurse on her toes!
The girls will have their eyes checked tomorrow by the pediatric opthamologist. Please continue to keep them in your prayers.
Sunday, March 1, 2009
So, I guess by all accounts each of the Carter girls are pooped! They are all tired and needing some rest right now. I hope that the girls will perk up some today. Seth has had to take milk out again so that they don't run out in the big snow storm they are calling for today! We'll see if it actually happens. But we would prefer that the girls get mom's milk not donor milk - so off to the hospital he has gone. The nurse said that she would try to hold the girls up for Seth so he can see them since he cannot go in now because of Aubrey's fever. I am hoping that they might be able to do that for us for Aubrey one day soon so she can finally see her baby sisters. Yesterday I asked the nurse if they were the smallest babies in the TCN and she said yes they were the smallest that she knew of. But she also said that they are perfect TCN babies - they are doing all that they should be...they just happen to be really small.