Quick update on Alexis: she had too high of concentration of carbon dioxide in her blood so they changed her to an oscillating respirator and she's doing much better. The measurement we just got about 1/2 hour ago is much more positive. They informed us that things typically go one or two steps forward and two steps back, but we know she's a fighter. She's the new record holder for UCSD medica
Happy 3 day old birthday sweetheart!!!!
April 23, 2013
She's looking strong and beautiful as ever. Her numbers are good too. They took off one of the bili lights so she just has one more on her. The nurses said however that she was holding steady.
April 25, 2013
As we approach Alexis's first week with us, it is humbling to reflect back on how much love and support she, Laurie
and I have received from family, friends, and the amazing staff at UCSD. I am also so thankful of my amazing wife, because without her my daughter would not be here to defy the odds every day. Our doctor told us that the reasons for a placenta not forming properly are largely unknown in cases like this, and that nothing we could have done would have changed it. In fact, Laurie was so picture perfect throughout her pregnancy that the doctor credits her personal health with our baby still being here. He told us that with a placenta as underdeveloped as ours was, it would have been releasing significant toxins into Laurie that attack her blood vessels. He said only someone in very good health from exercise and healthy eating would have been able to fight that for as long as she did, giving Alexis the time she had to mature. Often, this same problem would have led to life threatening issues for the mom resulting in complications much earlier and virtually no hope of survival. In other words, Laurie has already given Alexis the gift of life two times, and now the compassionate experts at UCSD are taking their turn to bring our baby home to us. I am so thankful! I love you Laurie and Alexis.
April 26, 2013
Another extremely proud momma and daddy moment for both Murphy Clarke
and I. At about 3:30pm today they gave Lexi her first milk....0.5ml every 3 hours. And I got to officially see her poop for the first time (although Murphy had already seen it) which they say means her intestines are working. We also got to see her little head with her hat off and she has so much blonde hair...blonde eyebrows and beautiful long blonde eyelashes.
April 27, 2013
I just got off the phone with the NICU nurse who told me that so far Alexis has been tolerating all of her milk which is awesome news. She has now had 6 feedings of 0.5ml. While its not a lot of milk each time it's a huge move toward her growth in the future.
April 28, 2013
She's been such a trooper. They gave her a pic-line in her leg for her iv fluids and she was so calm. Next they will remove one of the lines in her belly button. She's going strong!
April 29, 2013
Well she had a productive day today. Her blood pressure has remained steady so they took her off of the dopamine for now. They did however say that sometimes they have to put them back on it, but they would watch her carefully. She is also down to 22% on her ventilator which is the lowest she has been which is good. They are doing some testing to see if they might try weening her off it assuming everything else stays stable. They still aren't feeding her milk while they continue to monitor her. She did have two more big poops while we were there though which shows good progress with her intestines. They also want me to get some blood drawn tomorrow so they can compare some things with the two of us regarding antibodies and platelets. Overall it was an eventful day for her but she made good progress. I can't believe my baby officially turned double digits today...she's an amazing 10 days old already!
April 30, 2013
Just had the rounds with the dr...the not so positive is that she has pneumonia but she has been on antibiotics to fix it now for 3 days of 10. The drs dont seem too worried. But on a good note her chromosomal test results came back negative for downs and other related abnormalities. Also her heart is still closed and her head, lung and kidneys all look great.
May 1, 2013
So after the rounds today the drs decided to put her back on milk which is exciting. If she tolerates the milk they may even up the amount in the next day or two. She's also gained a little weight which is awesome! Otherwise she is holding steady. Her numbers are staying strong and she loves being on her belly.
May 2, 2013
She had some great progress today. They moved her to a new ventilator again and this time she's doing pretty well. Good enough that they took out her final umbilical cord line. They are also feeding her and she's digesting it. Overall a great day for our little angel!
May 4, 2013
Alexis's nurse put a little ear muff on her so she can sleep better. Its a tad jumbo on her but does the trick. Today hasn't been her best day, her numbers were down a bit so the doctors moved her back to the oscillating ventilator to give her little lungs a break. They are strong but get a bit tired sometimes. She may have a small infection which could make her stats a little lower than normal, so they put her on a second antibiotic to be proactive and she has to take another break from milk. She is not getting enough calories to grow, and she might even lose a little weight, but she is still maturing and that is so important. Hopefully more milk tomorrow! Its to be expected, so nothing urgent. Laurie and I are getting situated in our temporary apartment off the 163; it will be so amazing to be close to our daughter so we can visit more often! She is snoozing soundly, she cracked her eyes for a moment when I first said hello and then dozed off to sleep again. Sleep well and sweet dreams!May 4, 2013
Mommy and daddy are always here to support our little angel. They let us both put our hands on her together to comfort her after her scare.
May 5, 2013
Well our little angel was stable again today. They have her on a slow drip to keep her calm. She's quite the active little girl...just like her daddy, so they want to keep her calm for a little bit. They were going to start her back on milk today but an X-ray showed a bubble in her intestines so they held off. Tomorrow they will do another X-ray to see if it's gone an if it is they could start her back on milk. They are also going to do another head scan tomorrow to make sure there was no damage done from yesterday. She also had another blood transfusion. Overall we are very happy that she is stable again.
May 6, 2013
I can open my eyes now!! Also she had a head ultrasound this morning to see if there was any damage from Saturday and all looks good! She also had a hear and lung ultrasound because try thought her heart opened up but again she proved she was a fighter and it's still closed!
May 6, 2013
From Lexi: I'm a little sedated but I'm still quite squirmy! I'm comfortable though and look at my eyes open!!!
May 11, 2013
She was such a strong little girl today. She was a little low on blood so they had to give her an IV on her leg for a blood transfusion but she did great through the process. We also found out she has a staph infection but they have her onantibiotics. The dr didn't seem too worried. He actually said she was doing really well. She's still getting her milk too and they might increase the feelings to every 6 hours if she continues tolerating it well. It was a good day for our little angel!
May 12, 2013
What a special Mothers Day. I have to be honest...I really wasn't looking forward to Mother's Day because I want to spend every minute celebrating my miracle angel. However when we got to the NICU today I found a card from Alexis to me on her crib with her handprint and it melted my heart and made the tears start flowing. We also noticed something was different and saw that they moved her to a different breathing machine because she was so stable. Her numbers looked awesome! They even increased her feedings to every six hours. We brought her lovie for her as well...but hope the giant bunny doesn't scare her. I had been sleeping with it on me every night for the past two weeks so it would smell like me. Oh and they weighed her again and she was up to 440 grams from 380. 454 grams is 1 lb so shes almost a whole pound!!! Seeing all of this made my first Mother's Day absolutely amazing! Happy Mother's Day to all the moms out there
May 14, 2013
Well there was a little step back and unfortunately she had to go back on her oscillator. The doctors told us this is ok and just a part of her growing and getting stronger. They did however raise her milk levels to .5ml every 3 hours. She is on day 2 of this. Starting day 4 she will go up .5ml each day per serving that she tolerates it. They also told us that her staph test as actually negative. They had one positive result and one negative result which meant the positive result was from an outside source...so that was good news! Oh and she's up to 450g and 454g is one pound!!!
May 15, 2013
Guess what?! I officially hit 1 pound today!! Actually I more than a pound, I am 470g. I'm so happy and can't wait for a pound party to celebrate. My numbers are staying stable too!
May 17, 2013
I can't believe our little angel is 4 weeks old today. It seems like just yesterday we laid our eyes on our little miracle for the first time. In 4 weeks she has gained 150g and opened her eyes. We are so blessed to have her in our lives! She is up to 1.5ml of milk every 3 hours. She is a little high on her oxygen at almost 60% so the doctors are increasing her steroids to try to strengthen her little lungs. I feel so lucky to be her mom and see her grow and get stronger. I had no idea the love a mom has for her baby until I laid my eyes on Lexi! I love you so much little angel!
May 21, 2013
Today was a good day for me...I had a little dance party in my crib. I call the first move the sprinkler and the second move raise the roof! My numbers are good too! They weighed me and it said 590 which is a huge jump in 2 1/2 days from my last weigh-in at 500. Mommy is a little skeptical but she's pumped either way. Like daddy said...I'm quite the beefcake!
May 23, 2013
The past couple have days have seen a little setback with Alexis...she asked me not to post this picture because of her swollen eyes but I'm the Dad and therefore the boss. Her lungs are struggling and pretty inflamed, so the doctors are giving her the highest steroid dose she can have to try to reduce the inflamation. They also increased her Fentanyl (pain medication) to try to mellow her out because she was getting agitated. It was scary seeing her, because her eyes are swollen shut and she was limp as a noodle while they flipped her over and repositioned her. That said we had a meeting with the doctors today, and they said it is a legitimate miracle that this lung issue is all we are struggling with at the moment. While they deem her critically ill at this point, they said she has shown so much strength already that they feel she will power through. The good news with her increased pain medication is she is tolerating much lower settings on her ventilator, which means it is gentler on her lungs. Before, she was 'fighting' the ventilator by trying to breath over it or cry in her frustration and because of the pain it was causing, which meant they had to push a lot of pressure which was damaging her lungs. So the medication is a good tradeoff at this point compared to toughing it out. We hope to see some progress with her lungs over the next several days as they Xray her every morning to monitor them. We are so thankful for Alexis' health so far, and for all the great support!
May 24, 2013
Well without jumping the gun too much Alexis must have heard all of the prayers and hugs. At 8:00pm last night they moved her to the new breathing machine and she has been doing great. It's coming up on 24 hours on the new machine and she is still doing well. When we left she was at an oxygen level of 29% and 21% is regular air that you and I breathe. The doctors even told us that if she remains stable we might be able to hold her Monday or Tuesday. Either way we are so proud of her...she has come such a long way in 5 weeks. She even hit 600g and grew 5 centimeters in length and head circumference each!
May 25, 2013
She is still holding strong on her new ventilator and is down to about 25% oxygen which is fantastic! The drs also said her lung X-ray this morning was looking better which is also good. She's over 5 weeks now and 590g and growing steadily! She is also up to 4.5ml of milk every 3 hours. She continues to prove how much of a miracle angel she is daily, hourly and every minute. The doctors told us that if she continues to remain stable trough the weekend that we might be able to hold her for the first time Monday or Tuesday!
May 26, 2013
I'm pretty sure that our little angel flipped me the bird for the first time today. She must get that from her daddy! She's still doing well, staying stable. The doctors thought her lung X-ray was actually looking better which is good news. She's even up to 4.5ml on her milk and doesn't have any residual. They are also starting to wean her down on her steroids 10% each day and her pain meds. Our little nugget is so strong!
May 28, 2013
Today was another good day for me. My lungs are looking better and they are weaning me on my ventilator and meds. And I am up to 620g...just 20g away from being double my birth weight!
May 31, 2013
Well today was my day to take a break from my ventilator. Because my lungs are so small they get tired really easily. I made it over a week on the ventilator but today I officially had to tap out for a little break. My mommy and daddy are so proud of me though and know that my lungs just need to get a little bit bigger before going back on it. But I have big news...I'm officially double my birth weight!!! I'm 650grams now at 6 weeks old and up to 9ml of milk each feeding and they are giving me extra calories too to help me grow even more.
June 3, 2013
Little Alexis had a tough weekend compared to the last couple of weeks, due to what the doctors call chronic lung disease. We had a couple of episodes where they could not keep her oxygen saturation in her blood high enough even with 100% oxygen input, which led to hand bagging (manual respiration) at higher pressure, and a couple episodes of administered paralysis to keep her from fighting her ventilator. Also, they've had to increase her pain medication quite a bit, such that they will need to be careful weaning her back down to avoid withdrawals. The goal is to just keep things as steady as possible until she grows more, bringing more lung tissue and hopefully better ventilation. We still can't hold her which is so hard, but tonight the nurses let Laurie swaddle her which was really cool. She has so much fight in her and we love her so much. Laurie's OBGYN called Alexis the biggest miracle UCSD has ever had at our Friday appointment, and I couldn't help but tear up a little with a big dumb grin at the same time. We are so proud of our little baby and she will grow her way home to us before we know it! Check it out she's even giving a little prayer for everyone that has sent her so many in return.
June 5, 2013
What an amazing day with my little girl today at the hospital. I got to give her a bath for the first time...well a sponge bath in her bed but it was so incredible! She is so soft and delicate that I was a little afraid but nurse Kathy Hoang helped me through it. I can't wait for the tons of baths that I get to give her in the future. I love our little angel so much!
June 11, 2013
I GOT TO HOLD HER TODAY!!!! AMAZING!!!!!
June 20, 2013
Our little girl is two months and one day old today!!! Look how good she is doing! She was so happy just sucking on her little pacifier. She's down to a breathing rate of 20% and oxygen levels of about 29%. She's also up to 15ml for her feeds. We are so happy she's doing so well!
June 21, 2013
Daddy got to hold her today for the first time! I don't know about him but I was overwhelmed with happiness for Murph! He was truly a natural. The first of many daddy-daughter moments.
June 24, 2013
Well our little angel continues to amaze us. She has been doing so well on her conventional ventilator that they thought she was ready to graduate to a CPAP machine. This means that there are no more forced breaths...just pressurized oxygen...and she is otherwise breathing on her own. Our little girl continues to amaze us every day! Oh and we would love everyone's help with this next part...SHE'S OFFICIALLY 2 POUNDS!!!! Time for all of the 2 pound parties to begin!!!!
July 1, 2013
Guess who is officially 1000grams?! This little angel right here!!!! We're so excited that she is getting so big! She's even up to 19ml for each of her feedings. We both got to hold her yesterday, and the last picture was the view from my eyes when holding her! It's still such an amazing feeling!
July 4, 2013
Happy 4th of July...love Lexi!!!! (and Laurie and Murphy)
July 5, 2013
Laurie shed some tears today while holding Alexis before her surgery in the morning. She is an amazing mom already, and Lexi falls asleep right away when she gets to be with her. I'm very proud of them both! Thank you everyone for all the support!
July 6, 2013
Surgery went well according to the doctor, we should know if her eyes are improving next Friday when she comes back to do another exam. Alexis is recovering now, thank you everyone for the positive thoughts and prayers! She asked for no pictures cause she looks like she got in a fight, but she feels better than she looks!
July 7, 2013
Little Alexis is having a tough recovery from her surgery. Her eyes are very swollen and sore after the three hour procedure. She therefore requires pain medication, and too little or too much makes her stop breathing. We just tried to take her breathing tube out this afternoon and move to her nose respirator because her stats weren't looking too good, but she couldnt keep up and so they are having to put the breathing tube back in right now. Its always a big procedure to go one way or the other, and its so hard to see Laurie distraught watching her daughter in pain. Alexis always seems to need more medication than expected to knock her out in preparation for these procedures, but the doctor said her feistiness is a good thing, even if it makes her difficult to manage
Little Alexis has been through more than this before and we will give it another try tomorrow. Thanks everyone for the positive thoughts so far, it got her through a long surgery already and she will be on the mend again in no time! Look at the army of caring people that get her through every one of these episodes. They are incredible.
July 9, 2013
I just talked to Alexis' night nurse Molly and she said Lex did well last night. She only had two "events" but they weren't that bad. She said the puffiness has gone down a lot and she doesn't look as swollen. She said over the night she didn't have to give any extra doses of morphine either which is good. And, she is down to only 25% oxygen and a breathing rate of 20. So...that means they think she is ready to try to extabate her again this morning. I'm not sure exactly what time yet though. Fingers crossed that this time goes better than the first I will update a little later to let you k ow how it goes. And...she opened her eyes yesterday and held my pinky for about half an hour which was awesome!
July 9, 2013
She is definitely proving what a little fighter she is! When I left the hospital tonight she was only on 28% oxygen and a rate of 25. Oh and look what nurse Jill Danna let me do :) Yep that's me holding her...all felt right in the world again for those two hours!!! And look at her go on her pacifier!
July 14, 2013
What a great day for Alexis! She graduated to a nasal canula, which means she is not receiving pressurized air, just a slow flow of oxygen. And her stats look great! She may have to switch back and forth a few times if she gets tired but that's okay.
AND, her dream team of nurses took advantage of the situation and let her try to drink milk from a bottle for the first time, and she did really well! She didn't choke, didn't have any 'events' and managed to swallow three milliliters by herself. So we are off to a good start! AND her follow up eye exam looked pretty good, and the plus disease is regressing for now. She still has to have gel put on her eyes to help them heal so she is a little shiny but is much less swollen. We won't know how her vision is for a long time, she will probably wear glasses, but we'll get some stylish ones so she can still be a cool kid!
July 15, 2013
Today was a day of firsts for momma. I got to give Lex her first bath! It was so incredible...but I need a lot more practice! She seemed to enjoy it at first but by the end she was over it. She passed out for two hours in my arms afterward. When she woke up I got to give her a bottle for the first time. So amazing!! Tomorrow they told us we might get to try breastfeeding (TMI I know but so exciting for me!)
July 23, 2013
Someone had a huge smile on her face today! And...look at the size of those eyes wide open...at 4:30 in the morning...
July 30, 2013
We have the absolute BEST nurses in the whole wide world! Today was Alexis's official due date and I knew it was going to be hard on me. The guilt still hits me hard every day knowing that I wasn't able to keep Lex inside of me until her due date, but I knew bringing her out into this world was her best shot for survival. She is the most amazing little girl a mommy could ask for and will always be my little angel! She is such a fighter and a warrior!!!! When I came in to see her this morning, these are the pictures and note she left for daddy and I. The tears started rolling immediately, but they were tears of joy for our little girl! Happy due date Alexis Christine! I love you so much!
August 4, 2013
So apparently our little nugget is in a growth spurt. She has gained over 100grams in two days. She's up to 1502grams now! Nurse Jill even put her in her first headband and I think she just looks adorable! We are going to work on the matching headbands and outfits later
August 6, 2013
It was a very special day for Lexi today. She got to finally meet her first best friend...baby Brooklyn. She was so excited that she kept reaching out to try to touch Brooklyn through the window. Hopefully soon they will get to meet without the glass between them. She also apparently has some growing to do. Just to give you an idea of her size, Brooklyn is 2 weeks 6 days and weighs 9 lbs 6 oz, and Lex is 15 weeks 4 days and weighs a whopping 3 lbs 4 oz. Thank you so much to Matt Spangler and Megan for bringing baby Brooklyn by to meet Lex. She told me after you left to tell you that she loves you guys...all 3 of you!
August 15, 2013
Lexi's had quite the week. Earlier in the week we found out one of her lungs had collapsed so they were trying to see what was going on. There were a couple of days that they thought she might have pneumonia but after lots of testing and X-rays no issues were found. They think she was just a little tired and they weaned a little too quickly on her oxygen. She has been doing great these past couple of days. Her lung opened back up and it looks great. They are keeping her on her scuba through the weekend then back to ram and finally back to nasal cannula hopefully by mid week next week. Then we got our next scare. Her head ultrasound showed what they thought was a PVL which could lead to possible developmental issues including cerebral palsy but the next day after further review they didn't think that was really there. They did however tell us that we shouldn't be surprised if they see a PVL in her MRI...so we are prepared..but she has persevered through so many miracles already oh and we found out her pulmonary hypertension in her heart is now gone which is awesome! And baby girl is up to 1715 grams. They are going to start talking hernia surgery next week so we are hoping within the next two weeks that will happen. We are so proud of all the work she has done this week. She has been so amazing!!!
August 19, 2013
Well Lex has had a good few days and is making more progress. Tomorrow they are going to try her back on her nasal cannula for some "sprinting". Basically that means they will put her on nasal cannula for an hour so that she can try going back to her bottle again and then back to her ram for a couple hours. She will do this all day to see how she does and if she does well then she will stay on the cannula oh and guess who is officially 4 months old today and weighing in at 1738grams?!
August 22, 2013
Today was a big day for our little one. She got to get back to her bottle for one feed today. There's two words to describe what happened next. She ...NAILED IT. She took the whole bottle no problem in 12 minutes with no desats! It was so exciting. Afterwards she was totally milk wasted and passed out! She almost got cut off by the bartender...nurse Angela Jellison. Tomorrow we get to try for round two!
August 28, 2013
Sorry for the delay in posts but its been a crazy few days for the little girl. Overall she's doing well but she's had a couple of setbacks lately. The day after she had her bottle she unfortunately had a bloody stool which put the entire staff on high alert. They immediately stopped all feeds, gave her an IV, drew blood for testing, put her on antibiotics and called over the X-ray tech. They were fearful there was something wrong with her intestines and insides and needed to check everything out asap. Well...all tests came back negative which was a good thing but they did find a fissure which explained the blood. They kept her off of milk until they had all the results so she was not a happy camper. Sadly they had to give her an IV in her head one day because they couldn't get it in her arm or leg...I felt so bad for her. They also put her back to her scuba because her tube wasn't staying in very well. So...that brings us to today. She's up to full feeds again through her tube and all IVs are out but she's still on scuba. We are hoping to get to sprint again this weekend. Oh and in the middle of all of this she had to have another blood transfusion. But she is over 1900 grams now which is over 4 pounds. We are so proud of her for being so strong through all of this!
September 9, 2013
Have you ever wondered what 2000 grams look like? Well wait no more...Lexiloo has crossed over into the 2 kilo universe and is officially 2044 grams or 4 lbs 8 oz...or 4 1/2 lbs!!!! It's so exciting! Every day is a new miracle for our little girl! She's doing really well and has been very stable. Here are some of her recent pictures. The love we have for her is incredible!!
September 11, 2013
I am so proud of our little girl. She did amazing today at her first tummy time! I am in love with the pictures!!! She loved the mirror and the beaded necklaces...uh oh...
September 17, 2013
In two days our little girl officially turns 5 months! I can't believe it's already here! So much has happened over the past 5 months and she has grown so much! She has gone from 11ounces at birth to 4 pounds 14 ounces. She can hold her head up on her own, track her toys as you move them around, turn her head to noise, eat 34ml of milk each feeding, and say I love you mama! Ok maybe I made that last part up but she is doing amazing!!! They said we might be able to bring her home by the end of October! She's even in her new big girl crib.
September 19, 2013