Here are the updates I wrote over the past 101 days that Serena and Edwin have been in the NICU. From now on I will update directly on eblogger, but I wanted to include what life as a parent of 23 week twins has been like since the very beginning...
7:34pm Saturday, Oct 7, 2006
Hello everyone. I just wanted to update you all on what has been going on. My twins were born very, very early (16 1/2 weeks early). My daughter, Serena Lynn Rodriguez, was born at 3:18 am on Sept. 29, and weighted just 1 pound 3.2 ounces. My son, Edwin Kelly Rodriguez, Jr., was born at 3:20 am on Sept. 29 and weighed just 1 pound 3.6 ounces.
It was completely unexpected and it has been a very difficult time for our entire family; but yet I am thankful because they are here and I love them more than words could ever describe. They are little fighters and we have faith that they are going to do just fine. They are being cared for at UMASS Memorial in the Neonatal Intensive Care Unit, and will probably be there for about 4 months. It is very hard that I can not bring my babies home right now, but I know they are being cared for so well in the NICU.
There will be an article about them in the Telegram tomorrow in the Sports section because my fiance is always in there and they like to update everyone on what is going on with him.
I just ask that you keep my precious little ones in your thoughts and prayers.
Thank you all so much.
Sincerely,
Stephanie, Edwin Sr., Edwin Jr, and Serena
1:12pm Monday, Oct 9, 2006
Hello everyone. So since I am terrible at calling people backand updating them, I figured this is the next best thing. It is difficult for me to talk on the phone about what is going on.
I have been "living" at the NICU since I was discharged from the hospital on Friday (I got very sick after the birth of my twins and had to stay an extra few days). Edwin and I have a room down the hall from our twins, and since they are in critical condition we will probably have the room for awhile (they don't have many rooms and you have to request to stay on a day-by-day basis). I leave the hospital periodically to run errands and bring bottles home to freeze...(I have taken over the freezer at the NICU with milk they are freezing for my twins for when they can eat more and they make me bring it home now because other mom's have to have room too). Edwin is only "eating" 1.5 millilmeters every feeding (every 3 hours), and Serena is "eating" 1 millimeter every feeding. They have tiny tubes that go down their throats right into their bellies and they put the milk in a syringe and pour it down the tube.
There is so much going on with their health that it is hard to explain, but I sit in on rounds every day with the doctors and nurses and hear how they plan to progress with their treatment.
Serena was treated with Ibuprofen to treat the opening in her heart. She was the very first baby to ever be treated with Ibuprofen to close a heart duct at UMASS. The procedure has only been approved to be used in the US for a few months...and it seems like it has worked. She no longer has a heart murmur and is doing well on her conventional vent.
Little Edwin's lungs are quite immature. He is on a special machine called an oscillator which gently shakes his lungs to remove the CO2.
They both do not appear to have severe brain bleeds which is such a good thing, they have follow-up brain ultrasounds on Wednesday. So hopefully everything will be okay with that.
Both twins are on antibiotics to fight infections...the doctors are still waiting on results from cultures to see where the infections are coming from, but they are doing better since they began the meds.
Weight is a major issue, they have both lost and gained weight each hovering around a pound. Little Edwin has made it to his birth weight, and even exceeded it by a few ounces, but Serena has yet to make it over a pound since a day or two after birth. Hopefully they can begin to steadily gain weight...they are so small and fragile.
I plan to continue to stay at the hospital for as long as they will allow us to have the room. It is so hard to even leave the hospital to run home and do errands because I miss and worry about my babies so much. I have never slept through a night since their birth and go in to see them constantly throughout the day and night. This is by far the biggest test of faith I think anyone could ever go through. To see my babies have to go through all they have been through is heart wrentching and I would do anything to have it be me, but I am trying to be strong, and I have faith they are going to pull through and come home with me and their dad. They will probably not be home until January at the earliest.
I have always said that having children was the one thing I wanted most in life; more than being successful or anything else. Now I am a mom, and I can't honestly say that I thought it was going to be like this. I can't even hold my children, and I rarely even touch them because they do not like to be handled when they are born this early. But what is true is a mother's love is instantaneous. I love them more than anything in this entire world and I dream and think about holding them and caring for them for the rest of my life.
Okay, I am crying way too much...this is why I haven't been calling you back my friends...I'm sorry but I will when things get a little more stable.
Thank you all for your thoughts, prayers, and kind words.
Love,
Stephanie
12:38pm Tuesday, Oct 10, 2006
I have decided that keeping a "journal" of sorts is therapuetic, and also something I can show my twins when they get older. I want them to know about the struggles and triumphs of their first months of life. Additionally, it is a good way to keep people who care informed about their progress. Therefore, I plan to write a "note" as frequently as I can.
So today is day of life 11 for the twins. That is the term they use at the beginning of every day at rounds.
I'll start with twin A, my daughter Serena. Serena is doing better as of last night and today; everything about preemies this small is day by day, even hour by hour. She will have to have a lumbar puncture today, commonly known as a spinal tap. They need to test her spinal fluid to rule out menegeitis, because she has been on the antibiotics for a few days, and although she is improving, is still coming back with slightly abnormal CBCs (complete blood counts). Other than that, her settings on her conventional vent (breathing machine) are low, which is good. The doctors have ordered increased amounts in feeds and she is up to 2 ccs every 3 hours. Last night she weighed 1 lb 0.9 ounces; they are weighed every evening.
Little Edwin has been struggling since yesterday. He keeps desatting, which basically means his numbers, like blood pressure and things, keep dropping. They are going to take a look at his chest x-ray and perhaps make some changes on his oscillator machine to better accommodate his breathing. His O2 levels are quite high, meaning he is requiring a lot more O2 than previously. Edwin Jr., had an LP (lumbar puncture) yesterday and the results do not seem to indicate menegitis. He will continue to be treated on the same antibiotics he has been on unless something else comes up. He is up in his feeds as well, and by the end of today (24 hours), between the two of them, they will consume only an ounce of the milk I pump for them. Considering I pump between 4-8 ounces every 3-5 hours, you now know why in the last note I said I had to bring a lot home to freeze.
Okay now less about the medical stuff and more about my babies as I see them.
Serena looks a lot like her dad. She has dark hairs on her head and on her body and it looks like she has her dad's nose...more like Edwin's mom's nose, since Edwin's has gone through some tough times with boxing...lol j/k baby when you read this. She looks like she wants to open her eyes, but like her brother, they are still fused shut because obviously in-utero babies don't need to open their eyes. The doctor's said it could still be a few more weeks until they open them...I can't wait!
Serena likes to sleep on her tummy and likes to stick her little bum in the air. She often has her hand near her mouth like she wants to suck her thumb, but it is hard because she has tubes down her throat and in her nose. But she cuddles her little hand near her face often times. She has the most precious mouth. It is usually open and when I go over and whisper to her I usually see her move her mouth like a little fish. She is so beautiful...I may be able to hold her soon, in something referred to as kangaroo care. It is when the preemie baby is put skin-to-skin with mom and then cuddles with a blanket over their backs. The heat from mom is usually enough to keep them warm. Both babies are on heating beds to keep their temp. at the appropriate level. I hope I can do kangaroo care with her very soon!
Now for little Edwin. The nurses are always saying he is not behaving. One minute his stats will be fine, the next he is destating. But he is just being a little testy and I go over and tell him to be strong and be good for the nurses so they don't have to take more blood to check his blood gas levels. Little Edwin looks like his mommy. He has light brown hair and blonde eye lashes. He has little blonde hairs on his body...babies have these little hairs in utero and often at birth but they fall out over time. Edwin has my little nose, and I think he might even have my triangle nostrils...lol. It's hard to tell with the tubes in his nose, but we shall see. When he is on his back he likes to cross one leg over the other, my mom says he is protecting his "jewels." He would much rather be positioned on his tummy, and like his sister, he loves to curl up his legs close to his body and have his little bum in the air. He is so cute..I want to hold him so badly, but with the machine he is on, I will probably have to wait some time before I am able to do that.
I call Serena my little princess and Edwin is my little prince. I also call them both my sweetest fish...it's something Edwin Sr has called me for awhile now, and since their little mouths looks like fish I think it fits nicely.
Okay, well that is my update for the day. Daddy Edwin is at the gym training, and I am home to freeze milk and get clean clothes to bring back to our temporary home at the hospital. I am going to take more pictures today and I will upload them next time I am home.
Thank you all again for your kind words and prayers for my children. It means so much to me.
Love,
Stephanie
1:03pm Friday, Oct 13, 2006
Hello...
So this note is not going to be as upbeat as the last one; and I am sorry if it seems all depressing, but I am feeling very down right now and I need to vent.
We almost lost our precious son early Thursday morning. He had had an up and down day and at 2:30 am I went into the room to bring my milk to be frozen and he was destating. I rushed into our room down the hall and got Edwin. We sat and watched the doctors, nurses, and respiratory therapists try everything to get him stable again. Edwin and I sat by little Edwin's bedside and cried and prayed that he would pull through...they made us leave the room so they could reintubate him. He was without much oxygen for quite some time. The nurse came in and told us he might not pull through and we might get to a point where we have to make a decision to continue his care or not. Neither Edwin or myself are willing to stop trying. Little Edwin made it through the night and did pretty well yesterday. They tried him on a new machine this morning, but I just called the hospital and they put him bnack on the oscillator...there was too much CO2 in his blood gas. I am calling back in a half hour to see how he is doing back on the oscillator. It kind of feels like the doctors and nurses are losing hope and it is killing me. I want so badly for both Edwin and Serena to be okay and it is so hard that I have never heard that from the doctors. It seems like their prognosis is so grim, but yet I still have so much hope they are going to be okay.
Serena has been having issues too, and the opening in her heart has not closed, the last treatment will be today at 4pm, and then we take it from there depending on if that works or not.
I am trying really hard to stay strong but I have so much sadness and even anger. It is so hard to see my babies in this condition. They are so innocent and beautiful and I love them so much. I just want to wake up from this terrible dream.
There are still no answers for why I went into pre-term labor. I was completely healthy throughout my pregnancy and never even drank coffee and rarely even had a sip of soda. I don't understand what happened.
The doctor has been ending rounds by saying "I wish there was some magic to make this all better, but there isn't." He said, "Five to seven years ago 23 weekers would have had no hope." I am holding on to hope that they will be healthy and come home with me. I am not even worried about when they come home anymore, now it's more of them actually making home. Even if it takes 6 months, I don't care...I just want them to make it.
I knew I would love my children when I had them someday, but the love I feel for my babies is truly unexplainable...I guess it is one of those things you have to experience first hand to truly understand. They mean more to me than anything else, which makes it hard because the only thing that can make me feel better is them being okay and coming home with me and their dad.
Well sorry this is not upbeat, but I am having a bad day. I am going to call the hospital now and go back...we don't have a room now really...just a room where moms can pump; so we will probably sleep at home for the first time in 3 weeks. I am not looking forward to sleeping away from my babies, but I guess it's for the best because I feel like I am losing it right now....
7:54pm Friday, Oct 13, 2006
So, like my beautiful twins, I have my ups and downs and can shift from good to bad in a matter of hours.
Just heard from the hospital and lil Edwin's lung x-ray looks a lot better...I am hopeful he is going to have a good night even though Mommy and Daddy are sleeping at home tonight for the first time since before he and his sister's birth.
My little princess is doing well also...I just called and got updated.
Daddy Edwin and I are going back to the hospital now to say good night to our sweetest fish and then home to try and relax and sleep in a queen sized bed as opposed to a hospital bed (which I was in for over a week and Edwin insisted upon sleeping in with me) or the pull out "bed" which our legs hung off of because it was made for people 4'5" or less.
I just read an inspiring account of twin preemies born at around the same gestational age as our twins and weighing about the same. It was an amazing journal highlighting many things we have already experienced and will experience as time goes on. It gave me a renewed sense of hope and I am so anxious to go see my babies to tell them how much I love them and believe in them. No matter what difficulties they may face in the future..."developmental delays" and all this other junk I keep hearing...I don't care. They are my babies and I love them and will take the best care of them no matter what. Me and their dad are not giving up on them. I think God must have chosen us because we have so much love for these babies in spite of all the "issues" they have now and may have in the future. I will always take care of my children no matter what. They are my life now and they come before all else.
I love my "micropreemies" (such a funny word I think) so very much. I am going to see them now. I'll update tomorrow!
Thanks for the kind words...you will never know how much they are helping. Thank you all again.
Love,
Stephanie
11:42am Sunday, Oct 15, 2006
Hi everyone..this has to be quick because I am headed back to the hospital real soon.
Okay...so Serena is more than likely going to have to have heart surgery. We are hoping the cardiac surgeon from Children's in Boston will come up to UMASS Worcester and do Serena's surgery right here. Neither the doctors, nor myself (obviously) want Serena to have to make the trip to Boston to have the surgery. So we are praying that a surgeon will be willing to come to the Woo. Other than her open ductus, she is doing well.
Little Edwin's xray very much concerned the doctor today, and he opted to try Edwin on the conventional vent again. HIs lungs are very damaged now because of they have been through since birth. I am hoping with all hope that this machine will help and that he will start to get better. I am so worried about them both, but I have so much trust in the doctors and nurses that they will help them all they can. They even listened to me when I suggested they check lil Edwin's billirubin because he looked orange-ish to me...so he may need some more light treatment which is no big thing.
I can honestly say I am proud of myself. I have been strong, and rarely break down into uncontrollable bouts of crying. Tears here and there, but I have been much better. I am also very involved in everything that goes on with my twins, and I feel very comfortable with the terms and vocab of life in the NICU. I am thankful I understand what is going on...it helps me feel more in control of such an uncontrollable situation.
Okay, time to get back. I will take pictures today. I am starting to look more normal lately since I have been sleeping more, and crying less.
I have to be strong for my little ones.
More updates later!
5:56pm Monday, Oct 16, 2006
Hello everyone. So my spirits were so low last night...but I feel so much joy right now.
First, I got to hold my daughter for the very first time today!!! We did kangaroo care (see the pictures). I got to hold Serena skin-toskin on my chest. It was so amazing. I have longed to hold both of my children and it was so fulfilling to finally hold one...I can't wait to hold my son now! Hopefully when he gets off the oscillator machine I can.
We also had a meeting with the doctor and nurses today. I wanted to get a better sense of what is going on with Little Edwin and what more can be done for him...he is in very critical condition because of his extremely damaged lungs. They were premature to begin with and with the high settings on the ventilator machine they have begun to have chronic changes. He will have chronic lung disease for the rest of his life more than likely. But that is okay, Mommy can deal with that...she just wants her baby to be home and healthy enough to have a happy and productive life.
Serena's surgery is more than likely going to be Thursday morning and the team from Boston are coming to UMASS to do the surgery. It is not 100% definite, but it looks like that is the plan. Hopefully she maintains stable until then. Then we pray that closing the duct through the surgery will improve her health and she can soon move off the conventional vent onto another respiratory aid that I will explain when she gets on it.
Oh, I am filled with so much happiness, I feel so much better. I am still very worried about Little Edwin, as is everyone, doctors and nurses included. He is doing sooo well minus his lungs. I wish so strongly that his lungs would improve and he could progress with his growth and development and that both he and Serena could be in the clear and headed toward the road to recovery and home. We still have a LONG ways to go and I am reminded multiple times daily that there will still be so many ups and downs along the way.
The magic of feeling my daughter on my chest, the heat from her body against mine, and feeling (and hearing...she has an air leak in her tube and she makes a whisting/snorting noise with every breath) her chest move as she is assisted in taking breaths, was so magical. I love my babies more than anything in this world and being able to finally be so close to at least one of them brought me so much joy. I long to have them home where I can hold them and kiss them all day. I don't think I will ever want to go back to work because I'll want to be home with them and enjoy them every moment.
Okay, time to relax with Daddy Edwin. Keep praying...these two still have a lot to face, but there must be no greater force than the love I have for these two...
Updates to come. Thank you all again!!!
10:45pm Monday, Oct 16, 2006
Ok, so I didn't know much about very premature babies before this unexpected event, and I realized I have not explained very much about what happened so here it goes.
I had a regular prenatal appointment on Tuesday September 26th. Everything was going fine throughout my pregnancy...(I knew I was pregnant since I was only 5 weeks...you count your weeks by the first day of your last period), so basically I found out as soon as you can possibly find out. I was taking vitamins (equal to prenatal vitamins, even before I became pregnant). Obviously once I found out I never drank alcohol or caffine (seriously like maybe 3 cans of soda total from 5 weeks to the day I deleivered, if that). I ate healthy, didn't lift heavy objects, got plenty of sleep, never missed a prenatal visit, took my vitamins every day, etc, etc, etc.
So anyway, Tuesday, Edwin and I were excited to have our monthy ultrasound so we could see the babies. Everything was looking great, got great pics of our twins and everything. Then, they did a routine internal ultrasound. They found that I was already dialated and that things looked like they were progressing into labor. I had no contractions and no idea. I was so scared and crying because I was so worried about the health of my babies. I was admitted into the hospital and the plan was to keep me there on bedrest until I delievered the twins...they were hoping for at least 10 weeks of bed rest so the babies could develop and be safe to be born. They began me on meds to try and stop my labor. They thought it was working because I was not feeling strong contractions, and they were not being picked up on the monitor. They stopped checking my cervix by hand on Wednesday morning because every time they did I would experience contractions, and the doctors feared the exam was putting me into labor. On Thursday night I began to have cramps that were intensifying in frequency and pain. I told the nurse and the doctor came in but decided not to check me for fear of sending me into labor, plus the monitor was not picking up strong contractions and my pain wasn't that bad. Around 12:30am Friday I began to have strong labor pains. I told Edwin to call the nurse that I thought something was wrong and I needed some pain meds (they had offered them before with the slight contractions but I refused...I didn't think this was labor so I figured I would try the pain meds they had offered in the previous days.) A different dr came in and decided to check me. I will never forget her words..."I don't feel a cervix. All I feel are membranes; and I feel a foot kicking me. She is complete."....Complete=completely dialated 10 centimeters...time for delievery...my daughter's foot was kicking her fingers... I was like WHAT?!?!
They immediately gathered a team together, called the NICU who assembled a team, and off I went for an emergency C-Section. It was scary but I was in total shock so I barely even cried or said much of anything.
Edwin was right there by my side and saw the birth of our children (he did not enjoy the experience...in his words "They kept taking stuff out of you and it scared me. Plus it was gross." ...Nice Edwin. Not to mention he saw my uterus and thought it was another baby...he said "I realized it wasn't 3 babies when they put that thing back in you." Kids, your dad is so articulate isn't he?
I got to kiss my son when he was buddled up after birth before they rushed him up to the NICU, and they tried to show me my daughter but I couldn't see her inside the isolette she was in.
It was so surreal but I remember every moment of it.
So that is what happened. No one has any answers for why the babies came early. WIth twins it is a risk. Neither baby had an infection, so it wasn't that. Neither was in distress either. For some reason it just happened, and it is hard for me to accept that. Should I have insisted they check me to see if I had continued dialating without really having meaningful contractions? Was there something more they could have done? These questions still run through my mind every once and awhile, but I realize it doesn't matter. My babies are here now and they are alive, and that needs to be my focus.
A few quick things. Both of my children's eyes are still fused shut and they should be opening soon (I hope they wait until I am there that would be so special to see them open their eyes for the first time). Also, they appear red because their skin is still so immature, their final coloring will take weeks to develop. Both have had tubes in their noses, so their right nostrils will be a little stretched for some time but they will go back to their normal size in time. Every day they seem to grow more hair on their heads, and also have hairs on their bodies like I mentioned in another note. Those hairs will fall out with time as well. I think they look cute with blonde beards..for the time being of course...hehe.
They wear diapers because yes, these tiny babies do pee and poop. All their diapers are weighed after each change so they know how much urine output they have which is important to their health. They have tiny tiny tiny fingernails and toenails which are so cute.
So there is a brief description of babies born this early, I never had any idea and it is still so unbelievable to think that this babies were only a little over "half way done" in my belly and yet they are essentially, appearance wise, just like a full term baby with 5 fingers and toes and everything else...minus the baby fat...they literally have almost no fat yet...but that will come with time.
I bet some people will think they look abnormal...I was very upset with a comment on a photo that called my son an "it". They are my children and they look different from most babies we see, but I love them and they are so beautiful to me.
I just felt the need to advocate for them and explain some things. Ok time for work at the milk factory (lol) and then bedtime.
Can't wait to see my babies in the morning...I hope they are having a good night. Miss you guys...can't wait for you to read these notes one day!
7:56pm Tuesday, Oct 17, 2006
Hello.
My day was spent at the hospital today. I was there since 9am and let's see...o man it's 7:45pm; I need to get a job there. I put in more hours than the nurses.
So Serena is having surgery Thursday morning...definite time will be given to me tomorrow. It is a quick procedure and she will recover right back upstairs where she always is in the NICU in the bed space next to her brother. I am so thankful she doesn't have to go to Boston.
Little Edwin is a little trooper. He is down on his vent settings and is doing as well as can be expected. He looked so terribly swollen today; it scared me so badly. But he is just retaining fluid, and they are giving him something to help that.
So a lot of people have been so kind and keep offering to help. Before I would think nothing would help expect God granting my twins a miracle and have them be completely fine and home with me; but of course no one but God can make that happen so....
I feel so uncomfortable asking for anything really; but to be honest after 18 days living at the NICU I realized I do need some help. Food is the biggest issue. I get so consumed with being there with the twins I forget to eat. I dread the thought of coming home to cook because by the end of the day I am so drained physically and emotionally I can't cook. So I keep skipping meals, which I know is so bad especially since I am "breastfeeding" (pumping milk for my babies...they are far too little to breastfeed).
So for everyone who asked what I need I guess I would say food. haha. The night Brie and her sister, Nic, came to the hospital with a huge plate of food was the best meal I have had in what seems like forever. Even making something and then if I could put it in the fridge and then simply heat it up when I get home would ensure that I stop losing weight...I have lost close to 15 pounds in the past 2 weeks, and you figure each baby only weighed a pound so it isn't all from them being out of my belly...lol.
So yeah, friends be happy b/c I finally admitted I need something. I do not want to burden anyone, but that would be the biggest help if people feel like they want to do something. No one can make my babies all better and that is the only thing I want more than anything; so I guess helping me care for myself so I can care for them best I can would be a great help.
So thank you all again for every kind word, thought, and prayer. I can't wait to show my children just how many people were praying for them while they are in such critical condition.
Thanks again.
<3,
Stephanie
12:14pm Sunday, Oct 22, 2006
Hi everyone...
So I know it's been a few days but I've just been busy. Serena's surgery fially took place on Friday 10/20/06. It went well, although she is having a rough time adjusting....I think she is in pain :( She has been having a hard time with her breathing and usually desats relatively frequently. I hope she recovers and does better real soon.
My little Edwin had a very rough night Thursday and a bad day Friday, but he has pulled it together and is doing better as of last night and today. He is in a new bed, (as is Serena), called a giraffe; and it is like an enclosed isolette that can open up into a bed for the nurses to work on them when need be. WHen it's closed like an isolette it keeps out the noise and light which both babies seem to benefit from.
Both Edwin and Serena opened their eyes! Serena just opened hers partially on Thursday and then after surgery I haven't seen her do it much because she has been sedated for the pain. Edwin opened his yesterday, but he is also heavily sedated (he oxygenates much better when he is resting) so I haven't been able to snap a picture of him with his eyes opened yet. Both babies have those very dark blue eyes that newborns often have. I'll bet they will turn brown, although 3 of the 6 Rodriguez brothers (Edwin is 1 of 6) have light eyes...either green or blue, and my mom has blue eyes, so Edwin tries to say the babies will have light eyes, but I think they will both have brown. Little Edwin still has light brown and some blonde hairs; he looks like my mom quite a bit, and kinda like me. Serena has dark beautiful silky hairs and tan skin...she is our Dominican baby. Edwin is really hoping Little Edwin will begin to look more Dominican and is scared he will end up looking like a straight white boy...haha it's so funny to hear him talk about it.
I am not as at the hospital all day as much as I was before because both babies are doing so well when they are left alone, another reason I have not had many visitors up there. So we visit for shorter periods of time just to see them and we call to check in on how they are doing perodically throughout the day. I still go to rounds religiously every day and will continue to that until they are home. I start back to work Tuesday and will work 5 hours a day Mon-Fri. I have to work so we have money and then I will stay home with them for as long as I can when they are home with us.
Okay, well there's the update on Serena and Edwin. There are new pics from today with the babies in their giraffe beds.
<3,
Stephanie
1:27pm Friday, Oct 27, 2006
Happy Birthday my precious ones. Today you are both one month old!
In spite of this milestone, this week has been one of the hardest weeks of my life. On Wednesday the doctor told me he would like to have a meeting with Edwin and myself. I assumed it was going to be about Little Edwin starting his steroid treatment and he needed to inform us about the risks, (which we were already aware of), and have us sign a consent. So I went to work for a little and intended to return after our meeting; Edwin trained as I finished my meeting and we headed over to meet with the doc. To my surprise, Little Edwin's primary nurse was also there (she wasn't scheduled to work Wed.) She loves Edwin dearly and is one of his major advocates, I was surprised but happy she was there. So the doctor began by asking me how I thought Edwin was doing. I noted that of course I knew he was very sick but I was hopeful the steroids would be the key to improving his lungs and that he would begin to turn the corner. (This is the impression I got from the last family meeting we had with the doctor who was the previous attending physician). The doctor then dealt a HUGE blow to both Edwin and myself. He said "I have to be perfectly honest and upfront with you. Edwin has about a zero percent chance of survival." My eyes became filled with tears and the nurse got up to get tissues (I didn't look at Edwin but I know he was crying too). The doctor went on to say that he looked at all the records and no baby ever survived who was on as high of settings on the vent as Edwin. In other words, Edwin needs so much support from the vent and yet he is not improving. The doctor said even with steroids, in his clinical opinion they will not help, and we will "just be prolonging the inevitable." But yet he went on to say that he has not given up hope on Edwin, and said he has no doubt that his mind wants to live...he calls him a little "scrapper." So needless to say I was an emotional wreck, I began sobbing uncontrollably and the meeting abruptly ended and they left Edwin and I alone to grieve and try and process what we had just heard. I will never recover from hearing that news. I thought I was going to throw up all over the table. I still feel a lingering nausea.
Edwin and I spoke and we decided to still try the steroids even if we are "prolonging the inevitable." We have to give our son every chance. We love him so much and want desperately for him to prove everyone wrong.
Yesterday was another tough day. I sat with Edwin for hours and hours. I then told the nurse I was going to get lunch. All of a sudden Edwin started to "desat" (his levels of oxygenation dropped). She called respiratory stat and Edwin went from a healthy 93% all the way down to 6. He was not breathing and his heart rate nearly stopped. A team of about 6 doctors, nurses, and respiratory therapists crowded my son's bed while I sat helpless, crying, and thinking this was it, our son was dying before my eyes. I called Edwin at work and told him to come immediately, that we were losing our little boy. The doctor ordered that Edwin's tube be changed, and they took out his old tube and reintubated him...they thought he had a blockage in his tube that was preventing air from getting to his lungs. They continued to manually air bag him, and then miraculously he began to come up in his stats and the machine was able to deliever the breaths he needed to his lungs. The doctor said he thinks his lungs stiffened up or collapsed and the manually air bagging popped them back opened. It was so scary and so heart wrentching to watch, yet I am glad I was there in case things had turned worse. I am so afraid to leave because I want to be there with him in case something happens.
So now it is Friday and he is 28 days old. It is considered "safe" to start steroids today. Also a miracle, Edwin presented with signs of an infection earlier in the week, and you can not give steroids with an infection because steroids decrease the immune system as is, with infection steroid administration will cause death. Last night I had a feeling his bands would be 2 (a healthy number showing probable signs of no infection), whereas they had found 30 bands Tuesday and 12 on Wed and 20 on Thursday. SUre enough one of the residents came over to me this morning after I asked what his CBC results were, and said "his white count is good and only 2 bands!" My eyes got all watery, mother's intuition I guess. Therefore, Edwin begins his steroid course today. This is our son's last hope. He has to improve and get down on his vent settings in order to survive.
Edwin said last night, "he has been losing the fight, but he is going to knock 'em out in the last round." We are nearing the last round Little man, prove everyone wrong and show them you're a fighter. But we love you no matter what son, and if if you can't do it, know that we are very proud of you and so thankful we have had a chance to love you and spend as much time with you as we have so far. You will always have Mommy's heart no matter what.
Serena has been having a hard time since right before surgery and ever since. She requires more oxygen and higher vent settings, she desats very regularly and no longer tolerates being "messed with" by the nurses as well as she had before. We will begin talking about steroids with her tomorrow after her CBC clears and rules out any infection. The doctor said in our meeting that he sees a better long term prognosis for Serena but she is in no way in the clear either.
This past month has been the hardest time in my entire life. I am so in love with my tiny babies, and yet so sick at the thought of everything that they are going through. The situation they are in is so unfair and it pains me to accept it. The nurses are so kind and on multiple occasions have told me how impressed everyone is with me, saying if it were them they would not be able to hold it together as well. I cry sometimes while at my children's bedside, but I try to be strong..the tears just fall from my eyes and I quickly wipe them away. I feel uncomfortable when people try and console me I guess...anyway, there is nothing anyone can say really. It's when I am alone that I express my grief and anger. I'll bet the nurses wouldn't say I'm holding together well if they saw me cry uncontrollably in my bed into my pillow and plead that He not take my babies from me. But this is my reality right now and the crying is only temporary until I lay down to sleep and wake up in the morning to face it all again. So friends, this is why I don't answer my calls often or call back, I can't continuously update people all day; I can't relive moments like yesterday (watching my son nearly lose his life) with people all day long. Please understand, and please don't worry that I'm not answering or calling back. I am incapable of that right now. I appreciate the worry and concern, I truly do, but I don't even call my own family to tell them (minus mom and dad). Edwin didn't even tell him family about our meeting until I made him, and didn't tell them about crying at work and running through red lights to make it to our son's bedside in fear he would be too late. This is my way of telling everyone what is going on. One explanation, once a day, it's the only way humanly possible to do it.
So I will update you all on the success of the steroids and on Serena's progress. Thank you all again for the nice comments and messages and for the continuing prayers.
-Stephanie
6:12pm Friday, Oct 27, 2006
I just met with the doctor again. Little Edwin has an open PDS...not exactly a hole in his heart but I think that is how I explained Serena's. Not to get too complicated, the same thing Serena had. He needs surgery to fix it. The doctor wants to know if we want to continue this aggressive form of treatment for Edwin. We have to make a decision. Surgery means more pain and invasion of Edwin's tiny body. No promise the steroids will help...should we put Edwin through surgery when we could find out in a week that the steroids haven't worked and we are back where we started...almost zero percent chance of survival. If he does make it...which would amaze the doctors if he did, there is a very great chance he will be severely disabled...either mentally or physically, or both. Do I risk that? I don't want my son to have a life filled with more pain and suffering, but I don't want to give up on him either.
This is the worst thing possible. I feel so sick. I need a sign!
12:13pm Monday, Oct 30, 2006
The weekend was a lot better than last week. Edwin began his steroids on Friday, and made it off the oscillator onto the conventional vent yesterday and it has been over 24 hours and our little man is still on the conventional vent! The steroids seem to be working, he is a responder!
He still has the PDA and will need surgery. They may do it as early as tomorrow. We weren't going to put him through surgery if he wasn't improving respiratory wise, but he sure is a trooper, and he is showing us he is still a fighter so we need to give him the best shot, which means closing his PDA. The team from Children's in Boston will be doing his surgery. We are pretty sure they will come out here to do it like they did with Serena.
On another high note I kangaroo-ed with Edwin on Saturday and again today. He did really well, especially today because it is easier and more comfortable to do on the conventional vent. I got all emotional today and cried; it felt so good to hold my baby boy. We are going to try and make it an every day event...sometimes we have to be pushy a nurse said because nto all nurses are going to offer us a chance to hold our babies...weird right? Well they are in such critical care I guess it can be a little stressful for the nurse to get all the wires and tubes together and uphook and hook them back up, etc.
Well that's it for now. I will keep you posted with their progress!
6:05pm Wednesday, Nov 1, 2006
Hello all.
As you can see from the pictures I finally got to hold both of my babies at once! It was truly a magical moment. I held them both while they were swaddled and they both did so well...the nurses said they really enjoyed it...I know I did :)
On Tuesday Edwin was transported by ambulance to Children's Hospital in Boston. He needed his PDA ligated like Serena did but unfortunately no one was able to come out to Worcester this time and he had to go to Children's. He had his surgery today and it went well. Edwin Sr, myself, and my mom, grandmother and aunt were all there. He is now resting and still asleep from all the meds (I just called to check in). Hopefully he will be back at UMASS Memorial by Fri or Sat.
Miss Serena decided to make a scene right be4 little brother left, and she earned herself treatment of antibiotics because her CBC came back abnormal. She appears to have an infection of some sort, we should know more tomorrow.
Well there's the update...more pictures to come!
2:25pm Monday, Nov 6, 2006
Hi everyone. Here's the update:
Little Edwin had his surgery for his heat last Wed and was home by Thursday, he was a real trooper and we are so very proud of him. He continues to do well and is still on the conventional vent. The next few days we hope to see him improving, and he may go on to need a second course of steroids, but he is hanging in there as of now. He is so very cute, and has begun to open his eyes again (he didn't do so much post-op but he did today when I sat and talked to him at his bedside.) He also self-soothes by placing his hand on his face and also strokes his hand on his little head. He often has his hands in or near his mouth and will occassionally be seen sucking his fingers. It is very cute.
Miss Serena is doing quite well. She continues to breathe with assistance on the conventional vent, as well, and we may have to begin steroids with her later this week, but for now we are seeing if she can do without and trying to get some weight on her. Both twins weigh about 1lb 11 oz now. The docs look at weight growth over a period of a week because they are so small that looking day-to-day for a loss or gain of a few grams is not as significant as seeing how many total grams they have gained in a week.We are going to have a celebration when the twins reach a kilo which is 1,000 grams, or 2.2oz. The twins weighed 560 (edwin) and 550 (serena) at birth so it will be almost doubling their birth weight. Also, the nurses said that babies tend to gain weight much quicker once they hit the kilo. Serena opens her eyes all of the time when she is awake. She is alert and very interactive, she enjoys sucking on her pacifier...it is so adorable. Edwin and/or I hold her just about everyday, she tolerates it well. SHe is also maintaining her own body temperature, something preemies can not do at first. Her bed is kept at a certain temp and her body must adjust itself depending on her need. SHe also wears clothes all the time now! SHe usually keeps herself quite warm, meaning she uses a lot of calories on the one hand, but is very good at keeping herself warm which is good on the other hand. Oh, and her infection is gone thankfully, she has her last doses of antibiotics today.
Both twins look so much like babies now. They had the fetal-look for awhile because they were born so early. They are so amazingly cute you can't even fully appreciate it until you see them in person. I am awe of them. They are truly my pride and joy!
All in all they are both doing better, but they continue to need many prayers. I still have not heard the definitive "they are definitely going to go home with you around such and such date" yet, but I am hopeful they will be home around their original due date of 1/21/07. I will breathe a huge sigh of relief when they are both out of the woods, which is unfortunately not yet the case for either one really. I just keep telling them how much I love them and how many people have them in their prayers. I can't wait until they grow up and can thank you all themselves for all your kind words and thoughts. You all have definitely helped them in their miraculous quest for survival. Thank you from the bottom of my heart.
<3,
Stephanie
11:07am Tuesday, Nov 7, 2006
Hi all. Quick update:
Serena "Bean" is starting her steroid course today. We hope to see dramatic results like we did with Edwin and hopefully get her off the vent and onto her breathing on her very own! I am very hopeful she will do well like brother.
Little Edwin is doing better today; he had a little bit of a hard day Monday. The doc said he might need a longer course of steroids just because his lungs were so sick for so long. Hopefully he continues to improve and can soon be close to getting off the vent altogether.
Both babies are just so cute and sweet. Edwin had his hand on his head and the other in his mouth; his usual position...it is so amazing how sweet he looks doing that. He also had his eyes opened quite a bit...a reassuring sign that he is feeling better since his surgery. Serena was sucking away on her pacifier, eyes wide open, looking around at everything. The nurses are in shock of how advanced she is. If she didn't need help with breathing we would probably try breastfeeding now, but we have to wait until she is all set respiratory wise before we begin that.
My little ones are just so precious I could go on for days about them. But for now I must head to work and then I will be going back to the hospital to hold my sweethearts! (can't wait!)
-Stephanie
6:29pm Sunday, Nov 12, 2006
Hello. So far so good, things seem to be going better with both of my little ones. They continue to do better on their vent settings, and have been weaned lower in settings over the past couple of days...Serena and Edwin are on almose identical settings...who would have thought. Serena is very close to coming off the vent completely and onto CPAP, which would mean she would be breathing entirely on her own with continuous air through her nose which keep her little air sacs from completely deflating, making breathing easier. Serena Bean-a also had her very first bath last night! (pictures have been posted.) I was very nervous because they have to take off the device that measures her heart rate and oxygenation sats. We just had to base how she was doing on her coloring...if she turned blue-ish we knew she was not oxygenating well. We depend largly on the monitors to tell us how the babies are doing so it was kind of scary, but I really enjoyed being so close to her and washing her tiny body. In fact, when we plugged her device back in she was reading 93...she did really well! Then she snuggled a long time with her Daddy and really loved that. I held Little Edwin while Daddy Edwin held Bean-a. It is so nice to hold our babies...we both love it! Both babies are slowly gaining weight, it is difficult to do on steroids like I mentioned in another note. They keeping adding high caloric additives to my breast milk to feed to the babies to help them gain weight. They each are between 1 pound 10 and 11 ounces right now. I can't wait until they grow bigger and I can breast feed them myself. I've been working very hard to keep my milk supply...no esay task let me tell you! Pumping every 3 hours!! ugh...but I'd do anything for these babies, so I just keep thinking of that everytime I get frustrated with it.
It's hard to tell in the photos, so let me explain what they look like. Little Edwin still looks like a white boy. He is fair skinned, has light brown/blondish hair. He has a small little nose that looks just like mine. Serena is darker than Edwin, she has Daddy's coloring. She has black/dark brown hair. Her nose is a little wider than her brother's. Other than that they look the same. You can't tell what their lips look like yet because they are so small. But both Edwin and I have full lips so they should both have those.
So there you have it. I will be sure to update again soon.
-Stephanie
9:07am Sunday, Nov 19, 2006
Hello!
So a lot has happened in the past few days. First off, Miss Serena made it to CPAP!!!! CPAP stands for continuous positive airway pressure. Basically, the tube was removed from down her throat and placed in her nose but only as far as the back of her nose. Oxygenated air continuously flows down to her lungs to keep her little air sacs partially opened, so that when she exhales they don't completely collapse, making it harder to take another breath. Think of it this way, when you blow up a balloon, the first breath is the hardest, if you were to let all of the air out and blow it again, it would continue to be a little harder than if you left some air in it and blew the next breath to inflate it. Same idea. This means the machine is not giving Serena ANY breaths. She is doing ALL of her own breathing. I am so proud of her. When they first tried her I was at work and my mom was there and after 5 minutes they were thinking she wasn't ready, and were going to give her 5 more minutes and put her back on the vent. But that was on Thursday at 5:20pm and my little girl is still on it and doing great! I am so proud of her...I already said that huh? Look at the pictures and the captions underneath to read the story of Serena's first time breathing all by herself.
I also got to kangaroo both babies last night. It was so amazing. Edwin had a terrible day prior. He kept desating and desating. Nothing made him happy. The nurses still let me kangaroo them both. Serena was placed first and as Edwin came over, he put his arm around his sister! (See the pics!) He was stroking her cheek, and pulling on her string from her tube, and had a hold of her ear at one point. But sista didn't mind at all. They both did so well for the hour and a half I got to hold them. Neither had even 1 episode of desats, and Edwin had been doing that all the time previously! I think it benefits both babies to be skin-to-skin with Mommy and each other. I am going to do it again at 10:30 this morning! Can't wait!
Edwin is also maintaining his own. He is coming down off of the steroids, and babies do go through a period of "the dwindles". But his settings are not too high, and he seems to be hanging in there respiratory wise. The machine gives him 22 breaths per minute. He may need a second course of steroids, but let's hope he can grow, and therefore grow new lung tissue and get better without steroids! He also hit the 2 pound mark Friday night! 2 lbs 1 ounce, although last night he lost a little because he was given something to get rid of some of the excess fluid he had (respiratory compromised babies like mine will hang on to fluid and it gathers in their lungs often times, and this causes them problems with breathing). So last night he was just under 2 pounds, but no doubt he will be back up today or tomorrow! Serena is almost there, but she is quite a bit smaller than brother. Look at the pics, Serena's head is on the right, (darker hair), and her head is noticably smaller. She is also on a larger dose of steroids, since she started later and they decrease the amount every few days, so it is harder for her to gain when she's on the 'roids like I mentioned before.
Ok time to get ready to go. I get to hold them together again! I will have pictures posted tonight!
-Stephanie
p.s. don't forget the shower is now Dec 3 at 2 pm. If you would like to come and don't have directions, please message or call me! I'm registered at Babies R Us and Target...but your presence in this celebration of my miracle babies is really why I want you all there!!!!
3:04pm Saturday, Nov 25, 2006
Hello!
SO I went to my 5th year high school reunion last night. Being there made me realize just how many people care about my babies, and read these updates. That made me so happy because it shows that many people keep my little ones in their thoughts and prayers, and Edwin and I appreciate that very much.
So...here's another update...
Edwin is over a kilo, aka over 1000 grams. He weighed in at over 2 pounds 3 ounces last night! He is HUGE to me! (check out the pics). He also magically grew nice full lips over the past few days. He looks soooooo cute!!! He is back on steroids and they are makin moves to turn down his vent settings and hopefully get him on CPAP soon! We gotta keep praying for little man. This is the last course of steroids he can have so he's gotta make it off the vent! We have so much hope that he can do it!
So let me tell you a little about Edwin's emerging personality.
-He HATES a wet diaper...Little man will desat just because his diaper is wet. But he HATES to have his diaper changed. I guess he wishes it would magically clean itself without having to disturb him.
-He makes a crying face when he is upset...no noise can come out because he is intubated, but his face shows us he is screaming.
-He tries to turn his head completely to the other side. This is scary because the tube can bend, preventing air to his lungs. He is just so active...If his lungs were healthy I'm sure he would just be rolling all around by now.
-He loves his binki. He likes to suck on it but sometimes forgets to breath so we have to take it away.
-When you change his diaper or change his clothes, he wakes up and looks right at you. Sometimes he sneezes, or yawns, which is a baby's signal for "leave me alone you're stressin me out."
-He gets all worked up over everything. He is soooo sensitive, and very high maintainence. (o man I think he takes after me).
-He STILL has blondish hair and blonde eyebrows. I'm an olive-skinned, brown haired Italian girl and Daddy is a tan Dominican, so we think his hair will turn brown but it's still blonde. (I had blonde hair for awhile when I was little, and my mom is fair skinned and has light colored hair.)
Ok now for Serena. Serena has still not made it to 2 pounds. She weighed in at 1 pound 15 ounces last night. She will make it up there though. SHe has always been more petite compared to her brother. Her head is a lot smaller than his, but she's growing! Serena is on a CPAP of 4, the lowest setting on CPAP. Next step is off completely, and maybe a nasal canula of oxygen. She is doing quite well, and is completely off her steroids. She is a real trooper. Now time to tell you about Serena Bean.
-I am so happy I named her Serena. The name means peaceful and serene, and she sure fits her name. She is quiet and calm. SHe tolerates just about anything. I have never even heard her cry even though she can because she is not intubated anymore since on CPAP. Her nurse has heard her a couple of times, but only when she was being undressed.
-She sleeps A LOT!!! WHile Edwin is looking around wondering why people are messing with him, Serena lays peacefully while her diaper is changed and she is repositioned in her isolette. She does not make nearly as many facial expressions as brother.
-SHe does not mind having poopie run down her entire body. SHe made this clear when her nurse went over to change her and realized she had had quite the explosion. The smell was gagging, and yet she was sleeping peacefully and sating 100% while it dripped down her legs...haha groooossssss. Edwin would have had a fit had that been him!
-SHe loves to blow bubbles. Serena gets a lot of secretions in her mouth from the blowing of air from the CPAP. This creates good spit bubbles for her to blow out of her mouth. No matter how many times I wipe her mouth and they suction her mouth out, she will continue to blow bubbles all day.
-Serena still has dark hair, and has a beautiful tan complexion. She also grew lips recently and puckers them up while she blows her bubbles.
My babies are getting so big I can barely believe it. I look back at their first photos, when they are so small and red with their eyes fused shut. Now they look like tiny newborns, just so perfect and cute. They wear preemie onesies that are waaay to big, but they are definitely growing into them. They open their eyes and engage with everyone who looks at them. It is so magical to see them progress. I am in such awe of their accomplishments thus far. Every time I hear about the viable age of a baby, which at UMASS is 23 weeks, I am just so relieved that my babies made it (only by 5 days). They have been through so much, and I would give anything to take all the struggles away from them, but I know this is their war to wage. I will be right by their sides as they continue to fight and defy all odds. I think back to the night I was admitted to the hospital for my pre-term labor. The NICU doctors came down and read me all the statistics. "23 weekers don't always make it, especially twins, because twins tend not to develop as quickly as single babies. Some parents want us to do everything we can for their baby, and some choose to hold their baby in the arms and spend the last moments with their baby quietly, while the child passes. You have a choice, what do you want us to do?"
To me the choice was so easy, of course, if there is any chance at all please do everything you can to save my children! "But you realize there will be numerous complications as they spend time in the NICU, and unknown issues as they grow up and develop. Preemies this early are rarely 100% "normal." I understood completely, yet it didn't change my mind, nor my fiancee's. These are our children. We loved them even without having met them yet. We vowed that we would stick by them no matter how hard it was on us. I guess maybe it would be "easier" for some parents not to go through all we have gone through, watching our children go through medical treatments and struggle to breathe, but I can't even imagine not trying to give them a chance. A lot of people talk about quality of life. When the doctor talked to us about putting an end to the medical intervention for Edwin, saying it wouldn't be unethical in anyone at the hospital's eyes, they talked about quality of life. The problem is, no one can tell me what either one of my children's lives will be like as the develop and grow. And I can not imagine wondering "What if". Miracles do happen, and I truly believe that. And no matter what obstacles my children are to face, I will never give up on them, and will make sure they get everything they need. They have the unconditional love of myself, their father, and family and friends. If the challenge is too much, I believe they will show us that. I will also not allow my children to unnecessarily suffer. I beleieve in my heart that if it ever comes to that point, my babies will let me know it is their time and it will be them who declare themselves. I hope it never gets to that point because I love them so much and I want them to survive more than anything, and so far, they have showed us that they are fighters and they want to live.
6:38pm Monday, Nov 27, 2006
I am so excited!!! My Little Edwin is on CPAP!!! He has been on it for 4 1/2 hours now and is doing great! I am beyond excited for him. There is a good chance he might have to go back to the vent....it is a miracle Serena never had to. The vast majority of babies will tire out on CPAP and need the vent again, and then go back to CPAP. Maybe Edwin will be like his sister and stay off the vent for good...all we can do is pray.
CPAP is a HUGE step for my son. NO ONE thought my guy was even going to survive a month ago. Like previous notes have stated, I was strongly being "reminded" encouraged (?) that I should think about ending medical support for him. Last week at rounds I got teary eyed talking about Edwin. I was concerned because he had been on low vent settings (like his sister) and they tried her on CPAP, and not him, and within 2 days he was back to higher settings. I feared we missed our window of opportunity while he was on his steroids and I called for a more aggressive approach this time around with his second course of steroids. This is the last course he will be able to have, and it was critical to me that they push my son and give him a chance to be a miracle once again. Every time things get down to the wire Edwin beats the odds...I wanted him to have the chance to try again. So since the beginning of last week I have been at rounds and have been pushing for them to make moves with him. They made 3 moves to decrease his vent settings over the weekend, and today I asked when we would try CPAP. The Dr said "we can try today." I was nervous. I know my little man is a fighter, but I was pushing so hard for him to have a chance, would he prove me right and step up to the plate? How could I have doubted it. Edwin made it onto CPAP and has been maintaining for 4 plus hours!!! Like I said before, CPAP requires the baby to breathe completely on their own, the machine delievers zero breaths to the baby. EVERYONE is so happy for Edwin. The residents who have been with me and Edwin Sr the countless nights watching him come so close to death can't even believe it. One of his primary nurses walked in and I pointed to the machine which read CPAP and she began to cry. He is truly a miracle I just can't stress that enough. This is the baby who everyone thought wouldn't make it. With prayers and love he has come so far and I couldn't be more proud of him. I thank God and everyone who has kept him in their prayers from the very bottom of my heart. My son is surviving and making progress and I am so pleased.
Nothing is set in stone and no one knows what lies ahead for my little ones, but things are looking more promising and I am eternally greatful. There is nothing better than to think of taking my children home to enjoy for the rest of my life!
10:31pm Tuesday, Nov 28, 2006
Sooooooo it has been over 32 hours and Little man is STILL on CPAP and doing GREAT!!! I held him for 2 hours this morning/afternoon and he did wonderfully! It was our best hold EVER! I have never felt more comfortable with my son...I didn't have to worry about his sats, but could truly enjoy his little body laying on mine. I truly fell deeper in love with him today. I then came back to see him after work and held him for another hour and Edwin held him for a half hour, and again he did incredibly! He LOVES CPAP and LOVES to be held. He sucked on his binki sooo much today and did sooo many baby things. He tried pulling his tube out a million times today and completely turned his head over while on his belly from one side to the other. It was scary because he still has the tube in his nose, but he knows what he wants and he goes for it. He is so incredibly strong I can't even believe it. He weighed 2 pounds 5.4 ounces tonight! He was 14.5 inches long when measured Sunday...can't recall if I mentioned that in the last note. He is HUGE to me now...lol.
And to top off this day my Serena went to a nasal canula!!!!!! Serena made it off Cpap and has been on a nasal canula since 2 pm and is doing WONDERFULLY!!!! A nasal canula is a thin tube with prongs that go in the nose and blow in oxygen...same kind of thing as elderly people often have to help them breathe better. She is a real trooper and I am sooooooo proud of her. She may have to go back to CPAP just like I said Edwin might have to go back to the vent, but so far so good...she is really doing great! Serena is sooo big now. SHe has caught up to her brother in weight and now weighs 2 pounds 5 ounces. She is 14 inches long. She is alert and content with her nasal canula. It is sooo great to see her face with no tube and no tape. I am so proud of her!
My twins are really making progress and I am sooo happy. I have been hearing bad news for the past 2 months, and it is finally time to see some progress and good news. My mom withheld this info from me, but apparently on Sunday the nurse who was caring for Edwin took her aside and expressed concern that I was not prepared for the fact, in her opinion, that Edwin had little to no chance of making it off the vent onto CPAP. My mom said, well is it okay for a baby to stay on the vent and grow and be able to come off when he is ready, or is this something he needs to do soon with the steroids? The nurse responded by saying, "the damage that the vent does far outweighs the healthy lung tissue that a baby is capable of creating....so in other words, no...he wouldn't survive if he stayed on the vent, and I can't see how he could make it to CPAP....whenever I even move his head he desats....Stephanie keeps talking about taking the babies home and I am just afraid that she is totally unprepared for the fact that Edwin may not survive." My mom was crying and was worried about the baby shower. She never told me any of this until this morning when Edwin was still on CPAP.
I am sooooo happy I didn't hear this news, and my mom didn't say a thing. Maybe if I had heard this I would have been worried he couldn't do it either. But then again I believe in a mother's instinct now. I knew I had to push for them to try CPAP even though the vent settings were not the usual low that leads the Doc to try CPAP. He was still on a Peep of 5 and a Pip of 19. Because of my persistance and support from one of Edwin's primary nurses, we tried and look! I only hope Edwin stays on...the nurse who said that to my mom works Thursday...what a surprise...Edwin is on CPAP!!! He wants a nasal canula like sister andis really trying to pull the tube...give it a few more days baby boy and maybe we can be aggressive and try that soon!
Funny thing is when I told another nurse that Serena's primary and I had spoke, and we were going to push for nasal canula for her today, she was like "well don't push it. It's ok there is no rush...she may need some more time." Well she is doing great and there is no harm in trying. We can always put her back on CPAP if she needs it. I am so blessed to have primary nurses who support me in my decisions for my children, and are as hopeful that they will beat the odds as I am.
Well there's my update. I will update tomorrow to share how things are going! Thanks for the prayers...they are helping more than I could have imagined. I officially believe in the power of prayer! THANK YOU!!!!!!
7:22pm Wednesday, Nov 29, 2006
Edwin's still on CPAP and has been lowered to a CPAP of 5...he was on 6....4 is when you can make the move to nasal canula!!! Was able to wean him down 20% on his oxygen when I was holding him...kept dinging off at 100% for his sats...he LOVES being held by his Mommy!!!
Serena Bean is still on the nasal canula and doing great! This morning Daddy held her and held her feeding while it went in (both twins are still feeding through a tube down their mouths directly into their bellies). She did great too!
Ok I'm going to the hospital to hold my loves...YAY I hold them twice every day now!!!!!!!
Remember the shower/celebration for the twins is this Sunday! Hope to see you all there.
p.s. Just got off the phone with T&G reporter Bud Bart...he interviewed me for an update on the twins to go along with an update on their dad, Worcester's own Olympic hopeful, Edwin Rodriguez Sr! Maybe in tomorrow's paper (not sure) but check it out...it'll be in the sports section!
9:23pm Sunday, Dec 10, 2006
Hello...
So it's been way too long and I figured I needed to write a lengthy update. First off....the baby shower was amazing. Edwin and I are so thankful for everyone who came and for all the lovely gifts...we are so touched by everyone's generosity. We received so many cute clothes, I just can't wait to dress my little ones up!
On to the twins. It has been a very busy week with many accomplishments for the twins. I'll start with some not so happy news first, and then move on to the good stuff. Every week for the past 3 weeks the twins have had their eyes checked. There is something called ROP or retinopathy of prematurity. Basically it strikes preemies mostly, especially the very preemature ones, like my twins. As not to get too scientific I'll be brief. Blood vessels in the eyes develop incorrectly, and if not treated when this occurs severely, laser surgery must be done to prevent the retina from detaching causing blindness. Nothing is easy for micropreemies, and this is par for the course. For 2 weeks their eyes were normal, last Sunday the Dr found that Serena has stage 2, zone 2, 3 clock hours of ROP...(way to hard to explain but it's not terribly bad as of now). Things can progress and get worse, or they can stay the same and eventually resolve themselves. Edwin's were normal as of now. Let's pray that things stay well enough that the twins will not need laser surgery to correct this!!! The Dr will be in to check again....(he didn't come today and I am kind of worried, btu hopefully he will be in soon).
Another not so great development has been what appears to be reflux. Both twins have expereinces severe bradys (severe slowing of heart rate accompanied most times by a desat.) It is so scary...they both stopped breathing and needed a bag of 100% oxygen placed over their noses and needed to be rubbed vigorously to get their heart rate up. It happened today with Serena while I was holding her during her feed (they are still fed through the gavage tube down into their bellies.) I am very concerned about this and it is so scary to see my little ones turn blue/purple and not responding. I hope that their reflux gets better, or that they try some medication which will relieve this scary issue.
The good news is...both twins are gaining weight! Last night Edwin weighed 2 pounds 15.4 ounces! Serena weighed 2 pounds 14.8 ounces! They are so close to 3 pounds!!!! In other good news, both twins have graduated to an open crib and......they are cobedding!!!! Serena and Edwin sleep together in the same crib. It is the sweetest thing I have ever seen!!!!!! I have TONS of pictures of course. They are both doing well in the bed together so far with keeping their temps, etc. Oh, I can't even believe I forgot. Both twins are on nasal canula!!! No more machines as of now (they have a blood gas in the am let's hope it's good enough for them to stay on just oxygen...plus Edwin's last dose of steroids is tomorrow...let's hope he doesn't suffer from the dwindles, and maintains on the nasal canula!) Because they are on nasal canula, it is so much easiertoholdthem,which Edwin and I have been doing sooo much of lately. It is so amazing to finally be able to truly hands on bond with our little miracles...we fall even more in love with them every day, if that is even possible. It is impossible to imagine just how much you love your children. It is like magic to see them. They are so much more alert now...they look right into our eyes and they make the sweetes little faces. Edwin cries loud like a newborn, and Serena has a softer kitten-like cry. They are so adorable!
Another positive that I am excited for is, (as long as they are still on the nasal canula Tuesday), we are going to introduce breast and bottle feeds to the twins! They like to suck on their pacifiers and it is time to introduce them to the art of real feeding! I am so anxious to see how they will do with breastfeeding. I have been working hard to keep my supply so that they will be able to breastfeed. I think it is so crucial for babies to breastfeed, especially preemies. I am so thankful that I was blessed to be able to give this gift to them, and I hope it further increases our bonding when they learn to feed this way.
So, as you can see a lot has happened in the past week. I have so many pictures, I am going to try and upload most of them, but I want to make it an early night...I am so tired!
Thanks again to all who attended the shower...it was a wonderful day and I am so thankful to have had so many caring people there to share in the celebration of the birth of my twins!
Take a look at the photos....they are getting so big and even cuter by the day!!!!
6:12pm Monday, Dec 11, 2006
Hi...
Sadly, Edwin got cold last night and had to be moved out of the crib and back into an isolette to get warm. Maybe in a couple of days we will move him back into the crib with his sister.
Edwin weighed exactly 3 pounds last night, and Serena weighed 2 pounds 15.4 ounces! I'll bet by tomorrow they will both be over 3 pounds!!! They are so big to me now.
Also exciting...they are still both on their nasal canulas!!!! I am very happy about this, and that means tomorrow we have an appointment with the lactation consultant to begin breastfeeding. I am thrilled. It's hard to see my twins gagged by the small gavage tube. They don't like having it in. I hope they do well with PO feeds as it's known (by mouth...aka breast and bottle feeds).
On the eye thing...Serena's eyes have gotten worse since last week, but still not bad enough to require any surgery as of yet. Edwin's have progressed to Stage one, zone two, which is very mild. Kepp praying that things do not progress too badly, and that they won't need surgery!
Ok, well there's the day in review. I will have more info after tomorrow!
<3
Steph
1:29pm Monday, Dec 18, 2006
So...in the world of prematurity, things don't stay constant. I have not written in awhile because Edwin was not doing so well and I was so consumed with being with him at the hospital and being home trying not to fall apart. My son is a miracle, I know this. Unfortunately he is also a very sick preemie in spite of all his accomplishments. His lungs are so damaged because of all he has been through. Edwin has had about 5 very serious episods over the past week. One required chest compressions. His sats dropped to the single digits and then to zero. He had what they refer to as bronchospasms. When this happens his lungs literally clamp down and no air enters his lungs whatsoever. They can turn the O2 to 100% and it won't make a difference because his little body will not allow air in. When you are not oxygenating and not breathing your heartrate also decreases, thus the need for him to have chest compressions. He turns all blue and then white when these episodes occur and it is beyond scary. Watching your son on the brink of death while nurses and doctors frantically work to "bring him back" is probably one of the most heartwrentching and disturbing things to witness as a mother. I feel so helpless and so depressed because he has come so far and has done so well. I hate to be reminded that no one knows what will happen to my twins. Edwin is back on CPAP as a result of these episodes and respiratory difficulities. We hope to get him back on the nasal canula soon if he tolerates it. He is also on a host of meds to help with his refulx, which is believed to be a trigger for these crash desats he has had. (Some nurses refer to them as "death spells" that makes me want to vomit when I hear that). We are praying that these spells do not occur again and that Edwin progresses respiratory wise and is able to go back to the nasal canula and do well.
On a happier note, Edwin weighs 3 pounds 8 ounces! He is getting so big! He is still cuter than ever, even when he is screaming and crying, something he does often because he hates having the tube in his nose necessary with CPAP. I feel so awful when he cries like this and I take him out and hold him tight which seems to help.
Serena weighs 3 pounds 5.8 ounces. She has almost mastered breastfeeding. Yesterday I nursed her for 2 of her 6 feedings. I nursed her this morning and I will try a bottle of my milk tonight. I am worried about the breastfeeding because you never know how much she gets, and since they are supplimenting my milk with more calories, I would rather her get a bottle to ensure that she continues to gain weight. Weight gain is one more step clodser to getting her home! She is still on her nasal canula and doing well.
So I do apologize for the long pause in updates. I thought the days of me worrying minute to minute about whether or not Edwin would survive were vivid memories of the past, but apparently not. I would ask that you all pray that both my children continue to become less dependent on respiratory support, and that especially Edwin never have one of those episodes again. Also, please pray that everything goes well with their eyes and that they do not require any surgery.
I will update again soon.
♥Stephanie
5:18pm Sunday, Dec 31, 2006
Sorry it's been so long since my last update. Things have been very busy. I am in a rush so I have to try and make this quick.
Good news...Edwin has not had a bad spell in almost 2 weeks while feeding. We are still praying that they are gone for good. He is on steroids again, and this is more of a chronic steroid usage that he will need throughout his life, at least for awhile after he comes home. He breastfeeds twice a day and does very well with it.
Serena is doing well she breastfeeds three times a day and is our miss piggy. Both twins are nearly 4 pounds. Both will sometimes take a bottle depending on the day.
Bad news is...the Dr came to look at their eyes today and both will need laser treatment tonight! I am so bummed because it is New Year's Eve and my poor babies will be having surgery tonight. It was a rapid progression of ROP and I am very worried about their vision, but hopefully with prayers everything will go well and they will have their sight. I am so disappointed...I can't wait until the bad news days are over....will it ever happen? The life of a 23 weeker is so hard, and I woud give anything to have them be healthy full term babies, but unfortunately I can't.
So Daddy Edwin and I are spending the night at the hospital to be with our twins. Serena's surgery will be at 8 and Edwin's to follow. Each will take about 1 hour and they may have to be intubated (be back on the vent), which I am dreading because then it sometimes takes time to get them off and back to where they were on their nasal canulas. Please keep Serena and Edwin in your prayers tonight as they undergo laser surgery for their eyes.
Happy New Year and I will write again when I can.
-Steph
5:04pm Tuesday, Jan 2
Soooo...our New Year's Eve was spent with our precious twins as they underwent laser surgery to correct their ROP. Unfortunately, both twins had to be intubated...put back on the vent, because under the sedation they were unable to keep their breathing up. I was so diappointed because I had this bad feeling that Edwin would not come off easily, and I was right. Serena came off at 6 am the morning after the surgery. Little Edwin is still on the vent, and not doing so great. They tried him off and he did well for 2 hours and then needed to be reintubated, which was such a process the neonatologist had to do it himself. Serena is back to her old self, nursing well and opening her eyes and being her cute little self. She sat in her vibrating bouncy seat today and just looked around and put her fingers in her mouth, and grabbed Mommy's finger and tried to eat that. My Little guy is not himself yet. He is so zonked from surgery and is all puffy. He just lays there, sometimes not even breathing over the vent. It is breaking my heart to see him like this again, it is so reminisent of what things were like way in the beginning when his chances for survival were so slim. Please pray that he feels better and is able to go back on his canula and continue to get stronger and that much closer to coming home. On the eye issue, they will be followed up by the surgeon every week, and throughout their lives. They may have some periferial vision loss and will probably need glasses. We are hopeful their sight will not be too jeporized.
Everyone keeps asking me when they are coming home. I wish more than anyone that I had an answer to that question. I do not know. Both twins are still in need of respiratory support, and it is very likely both will have to come home on monitors. They need to reach 4 pounds and take all of their feedings by mouth...either breast or bottle. Serena is pretty close, but she still has regular desats, and she cannot come home until she continues to maintain a stable oxygen saturation and not desat. They do it so often it seems hard to imagine a day when they stop all together. I am so ready to have them home; I get so depressed when I think it has already been 90 plus days and the word discharged is not even being uttered by anyone yet. It's really hard, I can't even pretend it's not. Of course I am thankful that my twins are alive, but like any parent, I want my children home with me. I want to enjoy them and do all the parent things in my own home with Edwin, and really take on that mother role. I can't wait until they can come home. It will be the best day of my life.
Well I hope eveyone had a Merry Christmas and a Happy New Year.
I will post pictures tonight if Daddy isn't using the internet to play XBOX 360 online.
-Stephanie
6:50pm Friday, Jan 5
Hello everyone....
Here is an exciting update. Little Edwin, whom my mother and others are now referring to as "champ" (he is the champion of the NICU), was able to come off the ventilator and is doing great on his nasal canula. We resumed breastfeeding, and Edwin sure seems like himself again...thank goodness.
Yesterday the pulmonologist came to see the twins. He read over their charts, examined them, and spoke to their primary nurse about their course. It has a been a rough one, and considering all they have been through and the continuous need for their oxygen, he determined the twins will both be coming home on oxygen. Of course I am a little bummed, because I didn't want them to continue to need it to breathe, but the fact is they do need it, and will for awhile, and I want them home so I am definitely willing to deal with it. It was so nice, the nurse said, "well if anyone can deal with taking two chronic kids home on oxygen it is Stephanie." She has worked in the NICU for over 20 years and said I am one of the smartest parents she has ever met. That made me very proud. I can exel in anything I am passionate about, and my children are my greatest passion!
So...in rounds today we finally started talking about taking the twins home. Their discharge plan involves getting the twins to take all their feeds PO (breast or bottle) and to steadily gain weight. They must also stay stable on their O2, but instead of weaning them all day like they do now, they are going to keep them on whatever O2 that keeps them stable, and only wean if they are continuously satting 98-100 for a few days. What they do normally with babies is wean every time they hit 98-100 and then have to go up when they desat. This weaning and going up occurs numerous times throughout every day. The weaning is going to stop and that will give the twins a chance to stay stable for awhile so they can perfect the eating thing.
About that, Champ and Beanie do very well with breastfeeding...unfortunately they don't do well with the bottle. We decided to try and take out the suppliments and just add a scoop of high calorie formula to my milk and see if they will take that from a bottle...we are thinking maybe they don't like the taste of the supplimented milk. We will see how that goes. It stinks because I wish I could breastfeed them for all feeds, but since I can't live at the NICU, I truly can't. Plus, they need to learn because once at home there will be times they will need to bottle feed. Breastfeeding came so easy to them...I guess it shows that "breast is best" and it is the natural thing to do. I'm on this whole pro-breastfeeding thing. Anyone who plans to have children plan to breastfeed!!!
SO of course I am so excited at the thought of taking the twins home! I am going to say this now, and probably a million times after this, but preemies, especially 23 weekers who have had the type of course mine have had, CAN NOT afford to get sick. This means we will be in ISOLATION throughout the winter and probably close to the entire first year of life. I will be unable to have people in my home visiting the twins and I will not be able to take them anywhere except to their doctor's appointments. I know this is going to be hard because a lot of people will want to see them. But soooo many preemies get rehospitalized after contrating something as small as a simple cold. RSV is also a huge risk, and infants die every year from this virus that presents itself as a sommon cold in children and adults. I REFUSE to subject my children to germs that we all carry, and it will be hard to say no, but I am going to have to say no to a lot to people when they ask to see the babies. I will always post pictures and I know that that is not the same, but I have to do what is best for the twins, and I hope everyone understands.
I will be taking my maternity leave in 2 weeks to get ready for their homecoming. We will need to learn infant CPR, about the oxygen and monitors, and abotu administering any medications they will need once home. These next few weeks will be exciting and stressful, but it is music to my hears to hear the words discharge and home!
Stephanie
5:01pm January 8, 2007
Hi everyone.
So it was an exciting weekend. I spent nearly all day Sat and Sunday at the hospital with the twins. Once they can take all of their feedings PO they can come home so we are trying to get them to do that. It is going ok. They do not like to bottle feed and the calories they expend to breastfeed often causes them to not gain much weight; so it's kind of a catch 22. We want them to PO feed, but PO feeding means they use calories to eat as opposed to gavage feeding where the food is poured into their tummies through a tube. So hopefully in the next few weeks they will get the hang of it and not use so many calories and feed PO while still gaining weight.
Thie eye surgeon came to see the twins over the weekend and he said everything looks very good and he will follow up next weekend. He said ROP almost never gets worse once it starts improving and he does not foresee them needing more laser surgery which is good news. I am still so worried about saying everything is fine until we are 100% sure so I will keep worrying until it is definite their eyes are okay.
I met with the nurse who is in charge of discharge planning today, and we know that Serena and Edwin are coming on oxygen so she needs to order the equipment and apply for private nursing to come to our home and help with the babies...which will be great! Edwin, myself, and anyone who will be caring for the babies must go through training to work the oxygen and monitors and be comfortable with all of the portable tanks and other medical equipment they will be coming home with. We will also be trained in infant CPR.
Everything is happening now... the ball is rolling. It was hard to see the light at the end of the tunnel, especially when they were so critical. Yet again, another 23 weeker passed away in the NICU recently. He/she did not make it even a few weeks. I am continuously reminded of how lucky we are to have both of our 23 weekers. There have been no 23 weekers who have survived since the twin's birth. We are truly blessed.
As I mentioned in previous notes, there a lot of various "outcomes" for preemies born so early and needing so much respiratory support. Meeting or nopt meeting developmental milestones is the only real way to tell whether or not a child is having difficulties. It is very hard to tell now, but the primary nurse we love and trust the most is very shocked at how well both Edwin and Serena are doing. They respond to voices (especially mine :) !!!), they are easily settled, they do not have "floppy tone", etc. She wants the developmental specialist to evaluate them to see if she also notices how well they are doing. Like I have said many times, I want my children to be healthy, who wouldn't, but I love and support them no matter what; and I know they will have the best "quality of life." They are loved unconditionally and will be given everything they need and a lot of what they want (hey... they deserve to be spoiled after all they have been through!) Edwin especially has had a rough course...probably one of the roughest a preemie can have (although there are a lot of issues he did not have which we are very thankful for). But he has come close to death more thana few times. Every time he has pulled through, and he has proven to me that he has what it takes, and that he belongs here on earth with his sister, mom, dad, and his entire extended familly. I do not regret any decision I have made thus far, and I feel confident that I have done what is best for both he and Serena. Some may have chosen a different route, and I can respect other family decisions, but I know I gave my son the chances he needed, and he has prven to everyone that he has a lust for life that can't be extinguished. I am so incredibly proud of both of my children and I know that their lives are going to inspire and intill hope in many people. I couldn't ask for more beautiful children either...they are truly adorable.
So I will definitely keep everyone updated about the final stretch of this long marathon. Our family is almost home, and Edwin and I are just so giddy everytime we talk about it. We can't wait to have them home to hug and cuddle all day long!
More pictures to come when I get the chance tonight.
♥
Stephanie
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