Monday, October 31, 2005
Kaitlyn’s First Halloween
The good news is that Kaitlyn has slowly and steadily improved over the weekend. She’s back now to 30% oxygen, but her vent settings are still much stronger than they were before she went off the vent last week, but the doctors are encouraged. They’ve tried everything, and think the problem might Cortisone. They have given it to her again (which isn’t a good thing), but she has steadily improved since then. The Doc explained that unfortunately, when a preemie is given cortisone (although it helps their lungs) it can also suppress their natural ability to produce Cortisone – so it’s a double edged sword. She also was having low blood pressure, so she was also given Dopamine.
Today was the first day she was active and feisty again. Over the weekend she was fairly sedated and really just slept. Today, even after a dose of morphine, she was very agitated and feisty, but the good news is that she didn’t destat lower than 80% with her episodes (unlike her scare over the weekend when she was destating to 30% and wouldn’t go up unless she was manually “bagged.”)
Today we put a little orange Halloween knit hat on her head (she didn’t like it much), but she sure looked cute. She seemed to be happier when Brian and I tried to “contain” her kicks and punches – wow, she’s really strong. We saw some yawns and a lot of efforts to try to cry (impossible to do with a vent down your throat), but she finally brought some joy to her worried parents, as she really is adorable in her feistiness.
I can’t believe it’s almost November. I remember when I was lying in bed week after week and praying that I could stay pregnant until November. Now instead it’s been almost a month since the birth of our twins.
Saturday, October 29, 2005
Today the NICU had its annual Reunion Halloween party. Brian and I were planning on attending it, we even got up a little energy to round up some costumes. We wanted to talk to other NICU parents and to meet their once-preemie children.
However, when we called to check in on Kaitlyn this morning right before we were leaving the house at 11am, we discovered that at 4:30 am last night the doctors had to pull and then re-intubate her as she was having some very bad de-stating spells, which continued all morning. They have no idea what’s going on, but she is back up to 100% oxygen. We were a bit upset that they didn’t call us.
We quickly decided to not go to the NICU reunion party (we were not in the mood) and rushed to the hospital, where, unfortunately, there really wasn’t anything new to find out since we had spoken to the doc on the phone. She did have a destating spell while we were there, where she fell down to 35% saturation (it should be 90 or so) – she turned blue. Needless to say, I’m a bit of a mess now.
They took all types of blood tests (which means she had to have another blood transfusion and she had one the day before yesterday, or it may have been yesterday I can’t remember.) They say it might be an infection which they haven’t caught (so she’s back on antibiotics), or it could be the breast milk that she’s been given is leaking into her lungs (so they’ve stopped the feeds); basically they have no idea what it could be so they try to treat all the things they think it could be and hope she recovers.
Guess I can forget trying to hold her once again for a while.
Definitely a roller coaster ride....
Friday, October 28, 2005
Well, Kaitlyn had her try off the ventilator, but starting at 4am on Thursday she started having a lot of destats and her CO2 levels went back up again, so they decided to put her tube back in again Thursday morning. During the day, she had some major episodes where she even wasn’t responding to her oxygen levels being turned back up, so by the time we went home on Thursday we were very bummed, sad and worried.
I know we are warned to be prepared for the up and downs of the NICU, but we had gone to bed being so excited that she was doing well off the ventilator, now it’s like she’s starting over again, as she has to recover from the trauma. This road is so hard to travel down.
Kaitlyn seems to be much quieter today and her levels are coming back up again, but not to where they were before the pulling of the vent. The doc wants to now wait at least a week and try to get her weight up some so she will have more strength to breathe on her own for longer. So, we are back on the waiting game. The doc did tell me that she may allow for me to actually finally get to hold Kaitlyn, even if she is on the vent.
That was really exciting news to me, but today, Kaitlyn was still too wiped out from the pulling of the vent. I might be able to hold “Kangaroo” her over the weekend, which would make me a very happy mom indeed. Kangaroo Care means that I’ll get to hold her skin to skin, as it is felt that preemies know and respond to mom’s heart beat, energy and warmth. Up till now, the docs have really wanted Kaitlyn to come off the vent first and to become less irritated by being bothered, but I think the doc sees that mom and daughter probably really need some bonding.
Brian today wants to make sure that Kaitlyn is really up to it, so we’ll just have to wait and see how she does over the weekend.
The other news is that even though it might be because she had a lower urine output last night, but Kaitlyn is finally over 2 pounds! Tomorrow we’ll check again to see if she really has started to gain weight, but wow, 2 pounds. (2 pounds really isn’t much still, but it’s something!).
She’s up to 4 cc’s every 2 hours and tonight may go to 5 cc’s every 2 hours!
Update on Liz:
Well, my incision continues to heal, Brian tells me (as I still don’t like to look at my abdomen being completely open to the world) that it indeed is healing. He said it’s “nothing” to look at now compared to in the beginning. He even said that he doubted that it could heal itself as it was a large open wound, but it is getting smaller. Thank goodness, because the pulling tape off and packing it is getting very tiring.
I’ve been feeling a little “gastronomically” challenged the last 4 days or so. As I had such a bad infection and my abdomen is open, it makes me a bit worried (and continues to make me really tired), I’m crossing my fingers it just something I ate or something, but I do feel “weird” inside. How do you explain that to someone?
How is it possible that 3,200 people have viewed my blog? And that’s just in 2 months! Wow!
We are so thankful for all of the support. I’m still not the best on returning calls/emails quickly, but please know your calls, emails, cards and comments here on the site have really helped us to know that so many people out there are thinking and praying of us every day. It helps me not feel as alone though all of this.
I wanted to give some special thank here on my site:
The wonderful multiples group here in Marin has graciously collected money from its members to provide Brian and I fabulous healthy prepared meals. I have to say, I don’t know what we’d do without the food, as we really have no desire or strength to cook. (Well, I for sure don’t, and Brian is very tired of it always falling on him). I am truly overwhelmed by the incredible heart and giving nature of the group’s members. We understand from Allison that so many members contributed to help us that there is enough for weeks more of food! Thank you thank - you everyone!!! Once I can get my butt back to work, we won’t be in such dire straights any more financially – obviously this whole experience hit us very suddenly.
I’ve also had other friends and supporters who we’ve never met before offer and bring home-cooked meals. In fact, today a really funny thing happened, Lisa from the multiples group (who I’ve never met before and also happened to go to the same high school I did in southern California) called and said she was bringing by some chicken enchiladas for us, then 15 minutes later a woman showed up with chicken enchiladas. Brian met her outside (as he was working on his therapy – his land-cruiser restoration project) and said he was expecting her and it was nice to meet her. But she said she wasn’t Lisa and that she was Shauna, had met Brian before, as she was a fellow fire-fighter’s wife and not Lisa. Then, 15 minutes later Lisa actually did show up with the same dish, chicken enchiladas! We were very confused for a minute then realized that it was a very coincidental happening and we got a few chuckles over it (which is always a good thing for us to laugh). And we do love chicken enchiladas! Thank you Lisa and Shauna - we really appreciate the home-cooked meals - thank you so very much!!!
The San Anselmo Volunteer Effort (SAVE) Board on which I served, but had to resign once this ordeal began provided us with a gift certificate for prepared meals.
Julie from the twins group with always being there to lend an encouraging word and update the Marin multiples group.
So many PROM list members who have sent me many emails and encouraging emails/website posts who I have not had time to respond to.
The Redwood High School Ultimate Team sent me a picture of the team in my honor. I helped form and coach the team last year, and obviously haven’t been able to do much this year to help. I’ll put a copy of the picture here on my blog as it’s really cute.
Our favorite nurse Rosa from the hospital has become like an Aunt to Kaitlyn, who we’ve shared many tears with from day one. She gave me the sweetest card and plant while I was still in the hospital, “Written From Kaitlyn to her mommy”, that still brings tears to my eyes when I read it, as it says I’m going to grow up big and strong some day soon.
Sue my high school friend from Southern Calif., who besides being a pediatric OR nurse is also a mother of twins.
Deb from the Marin Multiples group, a fellow PROM mom and a mother of triplets, who sent us our Preemie “bible” that we’ve recommended that our parents purchase so that they can better understand all the medical jargon we are now always talking about.
And, so many others of you, you are just all too many to mention, but your calls, cards, flowers, etc are appreciated more than I can even express. Thank you everyone. So many have mentioned that they appreciate this website to give them updates, and it also helps me to keep a journal of Corinne and Kaitlyn’s lives so I’m glad that you enjoy reading it.
I’m still working on posting pics, including ones of Corinne.
Thursday, October 27, 2005
I just got a phone call from Liz who's on her way to the eye doctor and the hospital. Unfortunately, Kaitlyn had some problems last night and this morning without the ventilator (apneas, increased CO2 levels, etc), so they've put her back on it an hour or so ago (~9am). While she's making great strides, she isn't quite ready to be off it permanently. Still, she was off it for longer than the previous time, so we'll take it as progress.
She knows people are checking this regularly, so she wanted to make sure everyone had the most current news.
Wednesday, October 26, 2005
This picture is from today before Kaitlyn's breathing tube was removed.
Brian and I happened to be there when they extubated Kaitlyn (took out her breathing tube). They took an x-ray of her lungs right when we got there at 2pm (as on an earlier in the day x-ray she showed some lung collapsing), but by the afternoon they figured out what the problem was and decided to pull her breathing tube and put her on the CPAP.
It was very traumatic, especially seeing it all happen first hand, Kaitlyn of course threw quite a fit with everything going on: suctioning, a breathing treatment, removal of the tape that held her ventilator on (I know how much I hate the tape being taken off me 2x a day and I imagine my skin is a lot tougher then hers is), and finally pulling the tube out. I was freaking out a bit as her levels went up and down, …but she is breathing on her own with just the assistance of the CPAP when we left the hospital at 5pm, and is still doing well at 8pm!
Tuesday, October 25, 2005
Kaitlyn is 3 weeks old today, but she really is a day shy of my being 30 weeks pregnant
Well not really crawling, more like scooting…. Kaitlyn has spent much of her last 3 days on her stomach, which has helped her oxygen and anxiety levels a lot….
First a quick recap, during the weekend Kaitlyn needed another blood transfusion (I’m not sure how many she’s had to date – maybe 8, but at least it’s Brian’s blood now. In the beginning she had to have a donor’s blood). Her oxygen levels were up during the weekend (in the 60-70% range), as were her carbon dioxide levels, but it was discovered during the weekend that she really likes to be on her stomach which has helped both her digestion and her breathing. So throughout the last few days, after being on her stomach more and more often she really has had some positive developments. She’s still been on the ventilator and morphine however.
Her quantity of breast milk increased to 2 cc’s every 2 hours on sun or mon, and today, (Tuesday 10/25), as she started having less and less residual milk in her tummy, she was increased to 3 cc’s every 2 hours! When I just checked in, she only had .5 cc residual after her last feeding, so it’s going really well. Her abdomen looks good and she’s pooping and peeing regularly. This is all very good news. It makes me feel especially good, as I can finally do something to help her.
Today her oxygen levels were down to 30%, when I was there this afternoon, she was even down as low as 29% and the doc has said if she does as well all night tonight, they may try her again on the CPAP tomorrow! So cross your fingers for us.
Back to her “crawling” or scooting which is more like it…. Kaitlyn continues to prove that she is a fighter and very strong! As she lies on her belly, she lifts up her butt, sticks out her long little legs and pushes herself forward. She did this maneuver while I was there (her nurse was changing her diaper so I got to see her cute little naked butt in the air), she kicks out (angrily I might add because she was being bothered) and literally pushes herself forward towards her head. I wish I had a camera with me, as it really was funny to see, and what is more amazing is that the nurses put a little bean-bag at the top of her head and she is actually pushing it towards the top of her isolate so that it threatens to fall over the top (which Kaitlyn might also do if the wonderful nurses weren’t carefully watching her) and she would also pull herself out of her ventilator. Because of the protective padding that had put around her down by her feet, you could clearly see how far she had traveled and had to be moved back down. They say that they are amazed she’s so strong and still on the morphine, but they think she is getting more tolerant of it. She was opening her eyes more, but she quickly fell back to sleep once she was left alone.
It was nice to see her resting so peacefully, but it also meant that there was nothing I could do but look in through her isolette and watch her – she didn’t even like mama to touch her.
Update on Liz….
I had a doctor visit today, and she said that my incision is definitely healing, which is obviously good news, and we are down to packing it to only 2 times a day (instead of 3). Unfortunately, the doc didn’t know how much more we had to go until it heals itself completely, weeks still.
Today was the first day I drove in almost 4 months (I PROMed on July 26th). I’m not officially supposed to drive yet, as my abdomen is completely open. I put a large towel underneath the seatbelt (because the seatbelt is right over the incision). They are concerned that my “reaction” time will be less, as my stomach is still open (gross). Normally after a c-section a woman has to wait 2 weeks, but I’m supposed to wait until it heals! Sheesh! This means that Brian has to be my chauffeur, and so today I finally said….enough. I’ll still have him drive whenever possible, but it felt really good to be self-sufficient after 4 months. I just went to the hospital and doctor and came back home to sleep for an hour, but at least I didn’t forget out to drive.
The weird thing is that my contacts (for my vision) didn’t really seem to be working well, meaning that the fear of me driving shouldn’t have been my abdomen but my eyes! I wonder if pregnancy has changed my vision. I’m having my eyes checked on Thursday.
I’ve been reading all the wonderful comments and emails that so many of you have been sending, unfortunately, this means that I have somewhere between 200-300 emails (this doesn’t include mailing lists and spam) that I need to answer, and every day I get more…I am so overwhelmed by this outpouring of support, your comments have brought tears to my eyes, but this also means I am overwhelmed at knowing where to start responding….
Friday, October 21, 2005
Wednesday - 10/19/05
On Wednesday Kaitlyn switched from the oscillating ventilator to the regular ventilator and I got to changer her diaper for the very first time, with a lot of help from her wonderful Nurse Rosa…..with all the wires it was a little bit tricky to not get the wires caught in her diaper and you have to be especially careful to not let her skin get stuck to the tape because her skin is so sensitive. Lifting her little tiny legs to lift her butt off the diaper (which she didn’t like much)….was amazing, she hardly weighed anything at all. All the nurses tell us that she squirms like crazy when she has a wet diaper. Her fussiness definitely shows that she likes to be clean (she gets that from mom!).
Today was also the first day she got some of my breastmilk! Not very much 1cc….which is basically about 10 drops. It’s too soon to tell how she will tolerate it, as her stomach and digestive system just isn’t ready to digest food yet. But she also had two poops today with meconium, the docs say the milk isn’t going through her much yet, but when they pulled the milk back out of her stomach (very weird to see) they did see some digestive enzymes in with the milk, so they put it back in her stomach before giving her another 1cc of milk. I finally felt like I was doing something to help her, all the countless times I’ve pumped and now she is finally getting something from me.
Thursday - 10/20/05
Today Kaitlyn continues to do really well. Her oxygen levels have been down as low as 28%. She got more milk today and is getting it now about every 3 hours. The doc says that she still really isn’t digesting the milk, it’s basically helping condition her to really start digesting it and get her system working.
If she continues to do well, tomorrow they may try to switch her to the CPAP (Continuous Positive Airway Pressure – it helps her breathe by helping keep her lungs inflated so she doesn’t have to work as hard) instead of the ventilator, which means that she will get to have her breathing tube removed! That will make mom and dad very happy.
Liz "cupping" Kaitlyn to calm her
Friday - 10/21/05
Today Kaitlyn got her breathing tube removed and went on the CPAP. When we got to the hospital her entire head was bandaged up, as it held the face mask up to her head. They did a breathing treatment while we were there to help open up her lungs. She had been on the CPAP since 9am in the morning and was tolerating it well, however her CO2 levels were up a bit. The doc said she really liked having the breathing tube out and that they were slowly trying to wean her from the morophine. They also give her caffeine to help stimulate her to breathe.
They removed the face mask and we got to see Kaitlyn for the very first time without any wires or tape on her face! Unfortunately, her face was very “scrunched” up do to the mask that was on it, so she wasn’t looking her best, but she opened up her eyes (of course when she was squirming as once again she doesn’t like being handled what so ever.) But she was so beautiful! Brian actually got to hold her for half a minute or so. Her whole body fit within his hand, but he used his second hand to hold her head. It brought tears to both our eyes. Our daughter. Being held by her papa.
Dad was taking pictures like a true papa! And I always used to be the camera woman! I was too in awe of seeing her for the first time.
By the time we got home from the hospital, the doctor called us and said she had to removed her from the CPAP, as she was having a lot of A’s (Apneas-not breathing) and B’s (Bradycardia – heart rate below 100) and they had to re-intubate her and put her back on the ventilator. We had been warned that this was likely. The doc said she was really pleased at how long she was on the CPAP however and she was doing really well, her oxygen levels were still low, around 30-40%.
Tonight when I got home I had a crying break-down. Seems to be a common occurrence for me. I tried to ask Brian how I should feel, as it’s so hard for me to feel “encouraged, joyful, optimism or any type of happiness” when Kaitlyn is doing better. I feel too guilty for feeling this way because of the incredible grief I feel for Corinne. It feels like I’m being disloyal to myself and to Corinne’s memory.
Brian asked me how Corinne would want us to feel. He felt that she would be happy to know that her sister was improving. He’s right, but why is this so hard? Why am I so afraid to feel a sense of hope? I really, really feel like I’m being disloyal to my other daughter that is no longer here.
Well, it’s time to pump again and for Brian to change my dressings. It’s like having a full-time job (which I do have but I’m just not going to)…..Between pumping, dressing changes, trying to sleep to recover, time at the hospital, driving to and from the hospital, the entire day flies by. I’m completely exhausted every evening when I get home. We’ve been surviving on take-out food – at least I’m getting a bit of an appetite back.
Thursday, October 20, 2005
Well, where do I start? I guess there is no where to really start writing again. I’m so thankful for my brother Gary that has relayed updates to every one, I’ll probably still have him do so, as my abilities to communicate are still a bit limited (due to my emotions and continued exhaustion).
This is sort of disjointed array of my thoughts over the last two weeks, without going into many of the day to day details that Gary has already described here. I can say that typing while sitting sure is a lot easier than while lying on my side in bed!
I feel absolutely overwhelmed by all the outpourings of love, support and grief for our little family. The comments here on my site, the emails, flowers, cards, etc have touched us. I can't believe that this "blog" has been viewed 2,400 times!!! Wow. I hadn’t been able to turn on my computer until just a few days ago, and reading all the comments just made me weep. I’m sorry we’ve been sort of unreachable, this has been the hardest thing that we’ve ever had to deal with (and I thought 3 months of lying in bed was tough). I’m trying to start to re-connect with folks slowly, so if you call please leave a message if I don’t answer. I promise to start picking up the phone a bit at a time.
I’m not sure why I’m so tired still, I felt fine when I was lying in bed for almost 3 months, now that I’m allowed to get up I am too exhausted after a few hours (which usually consists of a trip to the city and the hospital). The doctors are all still worried about me. The NICU docs and nurses can tell when they see me that I haven’t had enough to sleep or eat – here they are supposed to be worried about Kaitlyn and they always tell me they are worried about me too. I’ve actually just hit my pre-pregnancy weight (in just two weeks), so that is their worry now. All throughout my life whenever I've had big emotional set-backs I usually loose a lot of weight - guess it's not different now, except added to that is the strain on my body from breast-pumping. I get mad at myself that I’m so tired, why can’t I be stronger, I’m not having to wake up every 2 hours at night with new borns as I had expected being a new mom would be. The docs remind me that I’ve been very sick and I should allow myself to be tired.
Having an open wound on my abdomen really, really sucks. 3 times a day Brian is a godsend (a bit of gross stuff here) as he has to rip the tape off, take out the gauze packing, clean and repack the wound. There’s no way that I can even look at it. At least my doc said on Tuesday that “it’s looking better and starting to heal.” We are looking at a month at least until it “heals.” Which means it will eventually just start “filling itself in” with healthy skin. Sheesh! Thank goodness when they did the c-section that they cut the nerves too, so the thing that hurts the worst really is the tape ripping off my stomach and sensitive areas. The docs think it’s from my ruptured membrane and infection I got when I went into labor 2 weeks ago.
After having contractions all night, getting lots of drugs to try to stop the contractions (terb and moraphine), I started getting a fever around 5am. When the fever started going up I knew this was it. I started crying saying I wasn’t ready, the girls weren’t ready; I had promised myself that I was going to make it to at least 30 weeks. It was just too early. Brian rushed in from work (he basically just left the firehouse); my doctor came in to do the surgery (she wasn't even on call) and it was decided the surgery would be at 7am (enought time for Brian to get there). I was terrified. Labor is supposed to be a joyful event, and this was anything but joyful.
Corinne Margaret McCarthy – Born at 7:24 am on 10/4/05, passed away in my arms 3 hours later.
Birth weight: 1 pound, 13 ounces
We always knew that if we had a daughter we were going to name her after our mothers; my mother – Corinne; and Brian’s mother - Margaret. This was decided a LONG time ago, even before our long journey to get pregnant, and somehow we both always knew we would have daughters. We were keeping it a secret.
We hadn’t named our girls in utero, as we hadn’t decided which of our twin daughters were going to get this special name. The moment that they were born, Brian felt it was especially important that we give our special PROM princess our mother’s name, as she needed all the strength that our moms could provide.
I can remember so clearly when they pulled first Corinne and then Kaitlyn out of me, Brian was crying, I was terrified, and the wonderful L&D nurse (Elizabeth) that tried to keep me out of labor all that night who decided to stay after her shift ended to go into the OR with me, leaned over and said “you are a mom now to 2 beautiful little girls.” I think I said something about it was too soon to know if I was a mom, and she said, “No, you are a parent now for the rest of your life no matter what the outcome is.”
Yesterday (10/18) was really awful. We went to the funeral home that was near where we used to live in North Beach in SF. We choose that place because we remembered seeing brass band funeral processions going down the street and we have such fond memories of North Beach. We have chosen to have Corinne Margaret cremated, and then Brian and I are going to decide what to do with her remains. We may wait till Kaitlyn comes home (probably early next year) and go to Tahoe (if Kaitlyn is allwed due to her lung issues) where we met and got married. There is no place as special to us then the peacefulness of the mountains. They picked up Corinne’s body today (10/19) from the hospital which made me feel incredibly sad, as our 2 daughters are no longer together in the same building anymore.
It just isn’t right for anyone to have to watch their first child being born, watch her die in your arms just a short time later and then have to arrange for her remains. We never, never thought it would be this hard. We knew all along once Corinne’s membrane ruptured that this could be the outcome, but it is just so much harder than we could have ever imagined.
The emotions of loss while at the same time knowing you have a living daughter has to be the hardest thing anyone should have to go through. I wasn’t able to go in to see Kaitlyn again for 4 days after they were born because I was so sick. The first time I saw her I couldn’t believe how small she was, and all the tubes and everything attached to her I of course broke down again. The first thing I thought about was the fact that the space next to her was empty, as it was where I said good-by to Corinne just a few days earlier and that I was so grief-stricken. Corinne was supposed to be there.
I missed her, Brian missed her, Kaitlyn missed her. We still miss her terribly.
I got so used to the idea that we were having twins. Now every time I see a woman with a single baby I feel so sad. Isn’t that terrible? I had gotten so used to having 2 little girls.
Corinne was a fighter. I felt her move and kick inside me all the time, even more than I felt Kaitlyn. That was probably because she didn’t have any fluid around her for 10 weeks. She saved her sister. The doctors told us the chance of keeping my pregnancy was slim after Corinne’s water broke at 16 weeks, 6 days. She lasted exactly 10 weeks until I was 26 weeks, 6 days. Kaitlyn needed that time so she could be with us today. Corinne saved her sister and we will make sure that Kaitlyn knows she has a twin sister looking out for her in heaven just as she looked out for her inside me.
I gave birth to two beautiful incredible little girls. I will never, ever forget that. I still cry myself to sleep many nights just thinking about how much I miss Corinne and that it just isn’t fair that she had to leave us so quickly and that her sister will never get to know her.
Kaitlyn Elizabeth McCarthy – Born at 7:25 on 10/4/05
Birth weight: 1 pound 10 ounces
I still haven’t gotten to hold Kaitlyn. I’ve hardly gotten to touch her, and it’s usually through a blanket or something. Isn’t that sad? She is 2 weeks old, and hasn’t grown a bit. She is still just barely 1.5 pounds. She fits in the palm of Brian’s hand (except for her long legs). Brian’s wedding ring fits easily over her foot and onto her leg. We tried this with Corinne when we held her and Corinne’s foot was bigger so Brian’s ring didn’t fit. I asked the doctor yesterday if she was 2 weeks “older” physically, as if I had gone 2 more weeks in the pregnancy she would have been so much better off. The Doc said that basically she was still “stuck” at the same GA (Gestational age) at which she was born (26weeks, 6 days) because she’s been so sick and had so many set-backs.
Going to the NICU is so difficult as there isn’t anything we can do. We go in, stare at her, cry for her, whisper to her, that’s about it.
Having a heart surgery at such a young age. We were so scared. The heart surgery she had to have was to open a duct that normally closes when a baby is older in the womb. Often times preemies are given a drug to close the duct, but after 2 doses, it didn’t work for Kaitlyn. When the duct is open it causes major problem with her heart and lungs, as it allows fluid to get into her lungs. I was still sick the day of her surgery I was sent all around the hospital having tests while she was being operated on. What a miserable day. But, she sailed through the surgery really well, and my tests came back ok.
Today was really the first promising news I’ve felt for Kaitlyn, and I actually felt like I was finally doing something, as she was given a very small amount of my breast-milk. Up to now, pumping has been awful (awful because there should be 2 babies on my breast, not a machine.) At least the one good thing about me is that my breasts actually are working! Supposedly lots of preemie moms have a lot of problems expressing their milk, and I haven’t had any problems there. Being small-chested all my life I always wondered how in the world I’d produce enough milk to feed a baby, but I can now say that the size of women’s breasts doesn’t matter and that it’s the only part of me that has worked correctly. I have so much milk built-up at the hospital that they are going to have to tell me to stop bringing it in. So knowing that she was finally given some today was great news. The Doc warned that it was too soon to tell how she is really taking it though, there is quite often feeding problems with preemies. Great.
A bit more about Kaitlyn…..she is incredibly feisty! I mean really, really feisty. I mean she has a temper like you can’t believe. The docs main concern (besides her lungs of course) is trying to keep her sedated and still, as she hates anything being done to her and kicks, moves, squirms and thrashes. She’s got the longest arms, legs, fingers and toes that you can believe and when she’s trashing about, she’s kicking her legs, waving her arms and trying to grab all the wires and tubes (yes, she has successfully pulled out her breathing tube in the past). I’ve only seen this anger full force a few times - (Monday 10/17) I entered the NICU when she was having a terrible attack of “pissed-off-ed-ness.” Alarms, buzzers and busyness was what I saw when I walked in. Of course the loud alarms piss her off even more. Scared the bejesus out of me. 2 Docs and 3 nurses were all around her doing all sorts of things, but basically her feisty-ness results in her de-stating (loosing oxygen saturation which results in the docs turning up her oxygen levels among other things.)
They’ve had her on a lot of sedatives trying to keep her calm. They discovered that she likes morphine the best. She was on some other, more “modern drugs” but she didn’t respond well (she got feisty), and that morphine was her drug of choice. Today the doc told me that yes, it was highly likely that she may now get a bit addicted to the morphine but the withdrawal effects from the drug was going to be better than her feisty attacks as it takes too much out of her.
I know how I felt at the hospital those 2 weeks, nurses constantly taking blood, giving me shots, taking my blood-pressure and temp, etc, etc., and I know how much I wanted to go home, so I can understand her attitude. She would much rather be back inside me, next to her sister and on bedrest! But, both Brian and I have determined that her real pissy-attitude comes from Brian, as he’s been known to throw a hissy-fit now and then.
The doctor at least laughed when she said that she knew, physically everything worked for Kaitlyn, as she certainly has control of her limbs during her temper-tantrums, and she laughed at us, saying we were certainly going to have our hands full with her!
I promise to post some pictures soon.
Wednesday, October 19, 2005
Well, some more positive news for the McCarthy members. Kaitlyn continues to improve, which is just tremendous news. No major changes, but just gradual improvement. She's now using 30% oxygen, so almost normal air, compared to the 100% of just a few days ago. She also got her first bit of milk today (a whopping 1 cc, or about 10 drops), hopefully she responds well to it. Apparently the hospital is redoing part of the NICU, so they had to move Kaitlyn to the other side of the room. You'd think that moving a 1 1/2 lb baby would be a fairly easy task, but apparently it took 6 people to move her and all of her devices. She was a little bit anxious during the move, but appears to have settled down since then.
Mom's still exhausted, although she sounded much better on the phone than she has in previous days. With having to give milk every couple of hours, it's still hard for her to get enough sleep. Between visiting the hospital, getting Brian to his doctor so he can donate more blood (since he's the same bloodtype as Kaitlyn), having the nurse come by the house to check Liz's wound, there's just lots going on. They also had to start handling some of the details for Corinne today, which is emotionally exhausting.
Every time I talk to her, Liz always asks me to please thank everyone for all of their warm wishes and prayers, it really is great having such positive emotional support for them through this.
Monday, October 17, 2005
Kaitlyn is improving, always welcome news. As I mentioned, she was having some breathing difficulties over the weekend. It became bad enough that they had her on 100% oxygen (compared to normal air which is 20%). Yesterday they were able to lower it to 65% oxygen. Still considerably higher than normal, but certainly movement in the right direction.
Liz is also feeling better, although treating the incision 3 times a day has already gotten old. She was able to get out of the house a little over the weekend, but then crashed asleep for 3 hours afterwards. I keep tellling her she's doing a great narcolepsy impression (the people who fall asleep all the time, like when they're eating or talking to someone).
My dad and stepmom were in town, so they all met up in the hospital and dad and Marcia were able to see Kaitlyn in the NICU.
Have a great week!
Saturday, October 15, 2005
Just a quick note here. Liz says that, although Kaitlyn hasn't necessarily improved, she's stabilized since yesterday, obviously a good thing. The next day or two will still be very important, so a turn in the positive direction is great news.
Liz also said she's finally starting to feel a little bettter. No fever for 3 days, and she's eating a little. Just thought people would be glad to hear some positive news!
Friday, October 14, 2005
Well, Fridays are supposed to be the day of the week everyone looks forward to, but Liz and Kaitlyn would probably disagree this week.
Kaitlyn started having some difficulties breathing last night and has continued doing so most of today. I wish I could give more details, but that's about all they could tell Liz and Brian. For now everyone's just sitting tight counting that Kaitlyn's a fighter and will make it through this like she's made it through so much already.
The doctors now say Liz's incision has become infected. Mild gore alert ahead for those with queasy stomachs. They purposely broke the wound open and Liz and Brian will have to pack it with sterile gauze 3-4 times a day. Luckily Brian's a firefigher/paramedic and hopefully used to this type of stuff, as I'm guessing Liz will not be jumping up and down volunteering to do this to herself. The infection doctor says they may have to do this for up to a month.
Still, another day is always a good thing. I hope everyone has a good weekend, I'll update as I hear more.
As a minor celebration, Liz will hit the 2,000th view of her blog shortly, I guess that's a good thing!
Wednesday, October 12, 2005
Well, after talking with Liz on the phone for a long time this evening, I have some more details about not having details....
First off, Liz wanted to thank everyone who has been sending positive thoughts and prayers and emails and flowers etc etc. She said the whole support network she's been so lucky to have is just incredible and she didn't have words to describe how much it means to her. She really wishes she could speak with everyone and tell them thanks personally. I usually read her the emails and messages that people have sent her, and she was completely in tears tonight when I did so. So, directly from her, thank you, your support is an incredible strength to her right now. Brian has been able to spend lots of time with Liz, due in large part to the huge help his fellow firefighters have been in covering shifts and whatnot for him. He doesn't know what he'd do without their help, it's been a huge thing for them both.
She and Brian are really grieving a lot, they said they had no idea it would be this hard losing Corinne. Still, I told her that the last thing Corinne heard was her parents telling her how much they loved her, and what a beautiful thing that must have been for her. Still, every time they go to the NICU, they wish they could see both girls there instead of just the one.
Between grieving, having trepidation about how small Kaitlyn is, Liz still being sick, etc, there is just a huge amount of emotions flowing through both of them. As a result, they're kind of hiding out at home and don't really check emails or even answer the phone most of the time. They know everyone wants to help, and they're extremely thankful, but she says it's just really hard for her to talk to people on the phone or in person just yet. And as I said, when I read her the emails and messages, it brings her to tears it means so much.
Kaitlyn is stable after the surgery, which is very encouraging. She has had some difficulties, her lungs are still partially deflated as a result of the surgery. They've given her two brain scans to check for bleeding of the brain. The first one did show something, but they couldn't tell exactly what it was. A second scan later still showed it, but it wasn't increasing in size, which is a very good thing. So there are still a myriad of issues they're dealing with on a daily basis, but the doctors remain encouraged overall.
Liz is still running a fever of just under 100, it seems to come and go but luckily nothing like how it was when she was in the hospital. They were very concerned originally about some rigidity in her abdomen, which is why they went to the CAT scan. They basically found out that it was fluid buildup. Since then, the wound has opened and the fluid has come out. While it makes for some messy bandages, we're hoping that it will soon begin to heal. She told me she slept for more than 15 hours today. Brian wakes her up every now and then to pump, but she's so exhausted she then goes straight back to sleep. She's thankful, though, that she's back at home. We were joking that, when she was pregnant all she wanted to do was sit up, see her house, and go outside in the sunshine, but the doctor wouldn't let her. Now, the doctors say she can do all of that, but she's so exhausted all she wants to do is lie down. It's pretty ironic.
And that's the news from the McCarthy household.
Monday, October 10, 2005
Kaitlyn's surgery apparently went fine, everything appeared to go in a straightforward fashion and she's busy recovering from that now. She has had aa dedicated nurse assigned to her since birth. Her regular day nurse had her day off today, but she came in anyways because, as she put it, she didn't want Liz and Brian to have to go through it alone. That shows the type of care they're providing her, these guys are awesome.
Unfortunately, they're becoming more concerned with Liz. They've ordered a full CAT scan on her and, pending the outcome of that, say they may have to operate to make repairs if necessary. They originally told her they couldn't get her in for a scan there for another 4 days, but after speaking with one of the doctors, they were able to fit her in today.
I'll let you know as I hear more.
Sunday, October 09, 2005
Well, I was hoping Liz would be able to give an update herself, but unfortunately that's not yet the case.
A quick update on what's been happening the last 48 hours. Kaitlyn is doing fine in the NICU. They did identify that she has a problem with one of the valves in her heart. They gave her some medication to try and fix it, but unfortunately that wasn't successful. As a result, they have scheduled surgery for her for tomorrow (Monday) to go in and fix the heart, they say it's only a 20 minute procedure from start to finish, although it will take longer due to all of the necessary sterilization. We hope to know something sometime after lunch, and I will post once I hear something.
Liz is still extremely sick. They've identified it as e. coli, which is fairly serious. She was in and out of a high (104 degree) fever all day Friday and Saturday. She finally started feeling better, so the doctors said she was ok to head home (I believe that was last night). She felt pretty good this morning, was able to eat a bagel and felt halfway human. However, after a few hours, she started feeling worse again and went back to bed most of the day today. She just feels totally exhausted. When they go to the hospital tomorrow for the surgery, they'll do some more blood work on Liz and it's a possibility she may have to be re-admitted. Doesn't seem fair, she's had such a tough journey just getting to this point!
Brian and my mother are both there at home with her, and we're hoping that with a lot of rest she'll turn the corner and be on the mend.
Thursday, October 06, 2005
A quick note, as I have not actually spoken directly to Liz in the last day, and I normally check with her before posting stuff on her behalf.
Liz has been fighting a pretty serious fever, to the point where they packed her in ice last night. She was doing better today, but still trying to fight it off. Kaitlyn is hanging in there, the nurses say they are encouraged, no significant changes at this point. The first 48 hours are over, which is certainly a good thing.
Once I hear from her, I will post more details.
Tuesday, October 04, 2005
Liz started having significant contractions late last night. After trying unsuccessfully to stop the contractions with medication, they made the decision to go ahead with the cessarian section and deliver the girls early this morning one day short of 27 weeks. Corinne Margaret and Kaitlyn Elizabeth McCarthy were born around 7am this morning. Both girls were between 1 lb 10 oz and 1 lb 14 oz, not sure exactly depending on the metric conversion done by different nurses.
Unfortunately, Corinne Margaret (also known as the prom queen) passed away approximately 3 hours later. She was definitely a fighter, and Liz and Brian had the opportunity to hold her and comfort her. As Liz put it to me, Corinne was alive for only 3 hours, but her memory lives on with them forever.
Kaitlyn Elizabeth is healthy and in the NICU with constant supervision. The doctors have said she's stable and that, given how premature she is, everything looks good with no immediate problems apparent. The next few days, weeks, and months will obviously be extremely important.
Mother and father are doing ok, considering the difficulty of the events of the last 12 hours. Liz made it through the surgery fine. They are trying to come to terms with both the miracle of new lives as well as the passing of one. The only thing they ask for at this point is for people to keep the McCarthy family in their thoughts, both in celebration and in mourning.
Thank you to everyone for their thoughts and prayers through this difficult period, I will try and keep this updated as things change.
garystolz [at symbol] stolzfamily.com
Saturday, October 01, 2005
Well, it’s not really fest-like, but I can’t believe I made it to October. It’s me (Liz) writing again. When I started this ordeal summer had just started in July. Now it’s fall. Hopefully I’ll make it to the time when it’s cold and rainy, as that means winters here and I’ve proven all the doctors wrong.
Brian and I have some sad news……Buddy passed away a few days ago. Brian was so sad to call me at the hospital to give me the news. I think Brian really had taken to Buddy, (I only got to see Buddy when I went to and from the couch in the evenings when I was still at home.) It is very sad news indeed. One minute he was just fine, and then when Brian checked in on him an hour later, he had passed. He had a little funeral for him and buried him in our back yard. My little Buddy that I found when I turned 24 weeks.
But I’m sure you aren’t reading this to find out about Buddy…..
I am of course still at the hospital, and will definitely be here for the duration. With my mom here, all the commotion of docs/nurses/staff/and more stopping in; and the combination of the dial-up phone connection and the awkwardness of trying to figure out how I can prop up my laptop to type on the hospital bed has created a big delay in my being able to post here and check, let alone respond to email. I had so many emails that it took my laptop 3 hours to download them today!
I am completely overwhelmed by emotion by the outpouring of support from so many people from far and wide. Today when I checked to see how many people had “viewed” my blog, I saw it was just fewer than 900!!!! I think when I went into the hospital about 300 people had viewed it, and that was just a week ago. All of the posted comments and emails I’ve received from all of you has meant so much to me. The caring, thoughtfulness and prayers from so many people, friends, family, and complete strangers absolutely amazes me and certainly makes me want to bring my two little girls into this world more than anything. As much as I’d love to respond to each and every one of you, I may not be able to, and I hope you will understand. Please know that I still read everything you write.
I take every day now as a blessing that our little ones are still inside me. They kick and move so much I just know they are fighters. They move so much that the nurses continue to have a very tough time trying to get the heart beat monitors on them as the doctors have instructed them to do. When I first checked in they had to be monitored 24 hours day, which was impossible to do, which means mom never got any rest. After I spoke to the docs about that, they limited it to 30 minutes once every nurses shift (3 times every 24 hours). The night time monitoring (which came about 6 am) also left me no time to sleep, as I am woken up every four hours (12 am, 4 am, 8am, etc) to be given my anti-contraction medication. I was also able to convince them that it was an impossibility, as it was taking 1.5 or so hours to get 30 minutes of heart beat monitoring. The little gals just are too small and don’t stay put.
How your baby's growing: Your baby now weighs a little under 2 pounds and measures about 14 inches, from head to heel. The nerve pathways in her ears are developing, which means her response to sounds is growing more consistent. Her lungs are developing now, too, as she continues to take small breaths of amniotic fluid — good practice for when she's born and takes that first breath of air. (well obviously not for our prom princess)
Some days the contractions are very quiet, and other days (like yesterday) they happen quite often. When they are going like crazy, it gets everyone all riled up and of course gets me worried. It’s much nicer when my abdomen is calm.
My Prom Princess continues to leak and has not reaccumulated any fluid. The Doctors have not changed their story about her poor prognosis for survival no matter how long I can last and the fact that I’m still likely to get an infection “at any moment”. They are fearful of giving me too many drugs to mask contractions in case that is a sign of my body going into labor due to infection. The risk of infection to the babies is worse than if they were to be delivered at this point. A 26.5 week baby is still very, very early, but an infected baby is worse.
My mind is still set on the fact that I’m going to reach 32 weeks. I’ve had that number set for a long time now. When I started having a slight fever on Sunday night and everyone was on high-alert that I would have to go into surgery, I just kept telling myself that it wasn’t time, I wasn’t infected and that my girls still were not ready to enter into this world. I guess it worked! My fever never really spiked and went back down. Good thing, as the NICU at my hospital was completely full that night and I would have had to been transferred to UCSF where I don’t know a single doctor.
When I hit 28 weeks I’ll start feeling a whole lot better for the outcome of our little non-prom princess. That’s only 1.5 weeks away!
By the numbers (in no particular order):
26 3/7: Weeks of my pregnancy
9.5: Number of weeks on bedrest and since my water broke
8: Number of days in the hospital (so far)
5: Number of tubes/wires I had attached to me when I was first admitted to the hospital (2 heart rate monitors, contraction monitor, IV,pulse monitor)
25: Number of pills I take every 24 hours: 6 anti-contraction pills, 6 antibiotics (finished today!), 4 pre-natal vitamins, 2 stool softeners, 4 iron (they’ve discovered I’ve gotten very anemic); 1 Benadryl to stop my rash from itching so bad – (it’s better today); 2 sleep inducing pills, as with all the night-time interruptions I wouldn’t be sleeping at all! It all seems counter-intuitive to me, as you aren’t supposed to take anything but Tylenol when you are pregnant.
6: number of times my temperature and blood pressure are checked in 24 hours.
32: The number of weeks I’ve told myself I’m going to make it to
0: Number of items in our nursery (well, it’s actually 1, as our dog Kailan has taken a liking to sleeping in there, as if she’s protecting our little ones)
4: January 4th, my official due date.
4: The minimum number of times I can hear the strikers yelling and chanting outside my hospital window with each shift change (yes, the food, housekeeping and engineers are on strike which is making things all that much more crazy (let’s just say hospital food leaves a bit to be desired when there isn’t a strike taking place. They can’t get a lot of the food items, as the delivery trucks don’t want to cross the picket lines, and it’s all newly hired “scabs” that are doing the cooking). From what the nurses have told me, when they’ve spoken to their friends who are picketing, the majority of them don’t really know why they are striking….it supposedly for “patient care”
Well, this angled, sort of one-hand typing is tough, so I’m going to call it a night for now. I will try to post more often now that I’m getting more settled.