MARATHON

Looking back at the days when Matildas fate was still uncertain. It was absolutely excruciating leading up to her delivery. I was paralyzed with Fear. We had to go see the fetal care specialist once a week. I remember the week leading up to Matildas birth. It was snowing and ice storms......not to be confused with actual ice storms......these were Texas ice storms which meant a little bit of ice and a lot of panic! As the fetal care specilaist assessed Matilda with the test they had. It was always well she wont run a marathon but she will be ok. The day before I had Matilda I saw Dr. Youst. She did a test to see what Matilda's breathing was like in utero since technically they don't have to breath. She put this vibration on my belly and she said now this is going to also test to see if Matilda will sleep in when her alarm goes off or hit the ground running. She then turned on the vibration and Matilda woke up right away and you could see her chest breath in and out. It was such a beautiful sight to see that in case Matilda never did get to breath on her own on the outside I would at least get to see this glimpse on the inside. It was beautiful! And Dr. Youst said this is so good!!! She is going to be fine and you tell me in 10 years if she sleeps in or not. I left the office relieved but still petrified with fear.
And then she was born....in the NICU for six weeks and still heard the same "She won't run a Marathon but she is going to go home". So in my head I thought ok we will put her in music classes, art, anything where she isn't running. Then I would get sad as I knew she would want to run after Freddie, play team sports, I was relieved she couldn't run after boys! I knew I would have to tell her it is unfair that she has to be still, but how grateful she should be that we are even able to have this conversation.
On Monday we had a follow-up appt with the pulmonologist. This was to decide if he wanted to see her once a year. She never actually saw a pulmonologist while in the NICU so I was curious as to what Dr. Copenhaver had to say.
Matilda was cheesing it big time smiling and talking to all the staff at the office.  Dr. Copenhaver went over her history with me which he was very happy with her progress. Then came the big part where he listened to her. I actually couldn't breath as I was so nervous, he was going to have something bad to say. He looked at the med student that was with him and said sounds absolutely normal. I said "SHE DOES?!" He looked at me and said if she wants to run a Marathon one day she can! I got a little tear in my eye but held it together because I don't ugly cry in front of strangers and I don't think Dr. Copenhaver knew what the word MARATHON meant to me. He then said ok I don't want to see her unless you need to see me! Which again I held it together.
 I know we don't know what the future holds for Matilda as she is at risk for different things. But I am so grateful that we need to call them, and that she doesn't have to be followed up. Matilda is still such a happy baby. She only ever crys if she is hungry......but don't we all! It's as if she knows how lucky she is.......and for that she is so grateful. She is my role model. I strive to be as brave as she has been. The Irony is Matilda is already running her marathon and we just need to keep up with her.

love to you all!

Waltzing Matilda

Listening to the song Waltzing Matilda sung by Rod Stewart, Matilda crinkles her nose and smiles as I sing the words along. My mother in law played it for paul and I before Matilda was born. My mother in law smiled and said," isn't it lovely!" To which we both responded yes. But was actually hard at the time as I didn't know what occasion this would be played at. So being able to sing it to a vibrant happy baby means so much. I just can't believe she is three months old today. Which means she has been home just as long as she had been in the hospital. And what an interesting six weeks it has been.
Matilda and I have been enjoying getting to know each other and as I always say to her BFF. We have filled our time having lunch dates with friends and NICU nurses. We also have had follow up appointments. Her pediatrician was so pleased when she saw her. As she got the news about her condition and knows that they don't always turn out so lucky. We were actually dealing with Matilda's weight gain when we came home. I blame pier pressure in the NICU. Matilda was bigger than alot of the babies in there, so its only natural she might feel a bit self conscious about her weight ; )
Anyway we had to go to the doctor for a weight check from the Friday till the wednesday and luckily Matilda had gained weight so we were in the clear. We also went and saw Dr. Roden for matilda's surgery follow up. He was very pleased with her and mentioned to us that he had done alot of hernia repairs. One recently he did unfortunately the poor baby hardly had any lung, and did not survive. Hearing stories like this just reminds us how lucky we are and how different this all could have been. I recently joined an organization called cherubs which sponsors research for congenital diphragmatic hernia children. They actually have state representatives, Our rep in Texas lives in Dallas. Her daughter was born with it and is 23 now . She has been very supportive as I still get a bit anxious about everything. We went in for Matilda's 2 month check up and her weight was down again so I nursed her every hour with her regular 3 hr bottles. When we weighed in again she was back on track and when I had another weigh in just to check 3 weeks later she was exactly where she needs to be. So that made us very happy. As I always have the fear that she would be in the failure to thrive category and would need a feeding tube.
Other than that Matilda is a very happy little girl. Her face lights up when you talk to her. Its as if she knows how special she is and what a gift she has been given. Her little brother loves her so much. He calls her Da........which sounds like DuuuuH! So not the cute nickname I thought but actually its perfect for them. He tries to help in any way he can!
That's it from us! till next time

Siblings

Some our favorite Nurses

FIGHT - SURVIVE - SURVIVOR

On Friday April 2nd we were so hopeful that Matilda would come home at the weekend as Dr. Frankfurt said earlier in the week that if she keeps up with the feeds she could come home. Well unfortunately she hadn't gained any weight in the last two days so she definitely wasn't going to come home then. I told my boss that I was starting maternity leave on the Monday (I went back to work 2 weeks after Matilda was born so I could have more time with her later on). I knew that I needed to spend more time with her especially being there to breastfeed. So the weekend I spent the majority of it at the NICU. Then on the Monday Dr. Pierce was back on and said that Matilda had gained weight the last two days so if she kept it up tonight then she would be going home Tuesday. Now a little sidenote I always said to myself I will believe she is coming home when she is in my car. So it didn't really hit me that she is so close to coming home. Well I walk in Tuesday morning and I see Dr. Pierce who said isn't that great she is coming HOME today!!!! I exclaimed WHAT!!!! She said oh I thought you knew! I said no I just got here. Now I know I mentioned in a previous post how superstitious I was so you know I didn't have anything ready for my beautiful daughter. So I told them ok I will be back at 4 to pick her up. Came home got everything ready. Went to toys r us to buy her a celebratory mom a roo, since we won't be going to Disney world till she is at least 4!! She lived in a mom a roo in the NICU!
So with my mom in tow as poor Paul had two inspections and couldn't get out of them. we get up there and start packing everything up. Then Lindsey, Matildas primary nurse came in and I just started getting emotional as she had been with Matilda since day one. She was next door waiting with the NICU team at her delivery,took care of her while she was in NICU and was there now to send her home. I was so ecstatic that Matilda was coming home, but was also so sad as remember I mentioned this special place of support and hope well now we are leaving that. It's almost like leaving kindergarten and going to 1st grade. Your excited  but sad to leave the warmth and shelter. So as we were taking pics Dr. Pierce had said to find her before we left to say goodbye. But they thought she had left for the day. So I went to to pick up car and then go to labor and delivery entrance, where I was meeting everyone. I parked got out and saw my mom, lindsey, Lilla (another wonderful nurse) and Dr. Pierce wheeling Matilda out. It was the perfect way to end Matilda's journey there and call her a Victor! Dr. Pierce said look at her looking up at the sky, its the first time she has been outside. I thought oh my gosh this poor girl finally gets to see the sunshine! We said our thank you's and goodbyes and put Matilda in the car! We then went on to pick up Freddie to let him finally meet his sister. Which he loved her and blushed when he saw her. I think the pieces finally fit for him. I hope he always knows how much he helped his mom and dad through this whole ordeal, more than he could ever know.
Looking back and reading through the blogs I am so glad I wrote this, so Matilda can know how special she is and how much we all had to fight to be together.
I have a friend who is an only child but that is only because she lost the other two siblings during their childbirth. I asked her when I found out about all of this how her mother got through it. And she emailed me back and said my mother use to always say you have to go through hard difficulties in life, they make you a stronger person and then you share that strength with others so you can support them. I can remember talking to different doctor's before Matilda was born and I always knew she would make it she was just so feisty as I mentioned before. And when they would tell me something sad or difficult I would always think in my head well you have never met my daughter........Which I have a feeling I will be saying a lot of in the future.
I have to thank everyone for their love and support during this journey! We are indebted to you all!
And to our gorgeous daughter (who is sleeping on me as I write this, actually it's where she has been since April 7th since coming out of the NICU)
Matilda you are so amazing! Your Dad, brother, myself and the rest of the family is so proud of you!

I will keep updating this blog as Matilda' s next journey of getting everything followed-up and checked on and living a normal life starts!!

Dr. Haddock

Dr. Frankfurt

Dr. Pierce

Ms. Christy - Matilda's OT

Ms. Lindsey

From left. Me, Lilla, Dr. Pierce, Lindsey

Saying Goodbye for now

Big Brother

Victor!!!!

To the Parent

When we found about Matilda and her condition. I went home and looked at every thing there was on the Internet about CDH! This included tons of blogs which you never should do. Every time we would have an appointment with a doctor in the weeks leading up to Matilda's delivery I would go home and Google. Which I would then limit myself to just positive blogs but would slowly go back to the more fatal blogs. I would compare information that we had about Matilda to what they had on their blog as if that would predict an outcome. As the docs could never say it will be ok! Which I never could understan d. I once read that no CDH baby is the same they are like snowflakes each one of their own design. Now looking back I know that is the only thing that I should have listened to. And that is why doctors could never say everything would be ok. Because this congenital anomaly is unpredictable. Matilda always knew the ending.
So now that we have hit the high hills of this roller coaster I can calmly say to the expectant CDH parent that our children have there own agenda. I believe that medicine can only take them so far. The other day we were thanking one of Matilda's neonatologist for all he had done and he said "hey she did all the hard work!" Which is absolutely true these amazing doctors and nurses can set them up for success. When I was pregnant with Matilda she seemed so feisty and I knew when she was handed this "sentence" that she would kick some butt and take names!!  I just want to say there are no comparisons, statistics, blogs that can seal fate.

One month

A month ago I was sitting on the edge of the operating table hunched over with Paul holding my hands while my feet rested on his knees. Meanwhile behind me Dr. Haus was giving me the epidural. He asked what Pandora station I wanted to listen to and I breathed in and said british bands to which I said Coldplay. They put the station on and bitter sweet symphony came on and I relaxed a bit. Dr. Haddock came over and I said to her I don't think I ever told you our Freddie birth music story did I? She replied no what is that.........I told her that right when she was delivering Freddie the song Bleeding Love by Leona Lewis came on to which Paul and I at the time looked at each other and thought really!! The lyrics " I keep bleeding, I keep keep bleeding love". Dr. Haddock laughed and said that was appropriate! So when she was delivering Matilda she said here she comes and we heard that sweet cry! The song "how to save a life" by the fray was on. After Dr. Haddock had handed her over to the neonatology team, the chorus "how to save a life" came back on and Dr. Haddock said now this is the song you want to be playing!
I cannot believe it has been a month since our sweet little Matilda was born. It really has felt like months emotionally. But poor Matilda has had to do all the work! I already told her we are going to Disney world when she is a little older. I think back over the past month, the good days, bad days, and I am just so thankful for our little fighter. I always wanted a little girl to the point that I use to cheat at the game of life (hope my brothers aren't reading this) just so I could have pink people in my car!! And now I have her.
All the nurses keep calling her a miracle. The doctors are so pleased with her. Dr. Frankfurt who took care of Matilda during her most critical two weeks, is back after two weeks off and finally got to see her sweet face. He was very pleased when he saw her without a ventilator!
So let me stop babbling and update on Matilda! Sorry I waited so long to post but literally the day after my last post Matilda's feeding tube went back in and she was spitting up more. She also wasn't latching as well. So we went a little backwards. This week they have started her on prilosec for reflux and upped her feeds so she is at 2oz. Which means no more pick line in her foot where her supplements are fed. So she is doing better but we still have some spit ups. But hey after the first month of life she has had, she can do whatever she would like!
Please keep those positive thoughts coming!
Thank you to everyone that is thinking about us!!

21%

I recently found out that we breath air that is 21% oxygen (I should have paid better attention in science class)! Since Matilda was born we have heard 21%  that has been our goal since she was born. It's crazy to think that one of Matildas milestones was to actually breath on her own. I'm happy to say since Monday officially miss Matilda has accomplished this milestone! Her oxygen cannula was taken off on Monday! I am just amazed at what our little Matilda can do! Feeding wise she is keeping down the majority of her bottles. She is now taking an ounce at the moment and the doctors up it everyday. So we are moving in the right direction. She still breathes pretty heavy as she is getting use to life without a cannula. She even pulled out her feeding tube on Monday night..........So they haven't had to put it back in. I think this was her way of saying she is done with tubes in the facial region!! So our next goal is to get the pick line out of her foot where the supplements she is on feed into it. So she just needs to keep everything down!
I know I mention this every time but we are so in love with our little girl. She is more aware now, looking around at things. And it's terrible but I love her little cry, we didn't get to hear that cry for 14 days. And I just love how it sounds like a little girls cry. It actually doesn't do her justice because she is so strong you would think she would roar like a lion. And I must say that the NICU has become such a peaceful place for us filled with such comfort and hope. Matilda has 3 other roommates, one baby that has been there since day one and two others that joined a week later. So it's nice to talk to other parents in there it's like a little support group!
Well that's all I have to report for now! Paul, Freddie and I are doing well! We keep showing pictures of Matilda to Freddie but he is still very unaware that his world is about to be turned upside down! But I know he will be just as in love with her as we are.............or he may throw things at her! Either way looking forward to being a family of four!
Thanks again for love and support please keep them coming!!
Love,
The Crowe's

                                          nonnie holding her first granddaughter

Big Girl Bed

Matilda still continues to accept every challenge given to her and does it at 120%. I am happy to say with the help of her OT Christy, Matilda is finally able to take a bottle. Christy identified that the reason Matilda couldn't latch or suck is because she was very vulnerable as she has had a tube down her throat since day one. So we had to get her to trust that this was something she would want. We are on day 4 of feeding and she is taking an ounce of Milk and more importantly keeping it down! So hopefully we can continue and she will be off all her supplements. We also had lactation consultant Tina come in to help with Breastfeeding. Which I have to make sure I pump before I breastfeed as she can't have a lot. I'm happy to say Matilda latched on! So good so far in the feeding department. We just keep taking things day by day. I'm also happy to say that we can finally dress Matilda in clothes and swaddle her! Also Matilda was upgraded to a big girl bed!!! So no more hospital beds, but the kind she would have been in, had she been able to be with us after she was born! So again lots of change going on. So proud of our little girl. Though today was very sad as Grandma Crowe went back to England she literally took care of us the last 3 weeks! So much has happened in those 3wks it almost feels like it has been months! Like I have mentioned before don't know what we would have done without her help, love and support!
Please keep sending thoughts our way! Matilda is definitely getting them. People keep asking do we know when she is coming home??!! The answer is no....and we never really ask as we know what the doctors will say.........were on Matilda's time line : )

Thanks Again everyone for your continued support!!

Luck

So my husband always makes fun of me as I am a little superstitious! Hence why I haven't posted earlier. Since Friday miss Matilda has made leaps! Friday they changed her ventilator to a less aggresive one that didn't do all the breathing. They started her on feeds which one of the nurses said is miraculous she is even starting that 4 days after surgery. She finally started having bowel movements so we know her bowels are working! And this was all before 2pm on Friday! Then when we came up Saturday they had taken out her umbilical lines which meant we could finally hold her!!!!!! So the weekend was eventful as she held her 2 ccs of breast milk down. But when they up the dose to 4 ccs unfortunately it was just too much! So Sunday and Monday she was spitting up very consistently. Oh and did I mention they took all her sedation away as they wanted to wake up her bowels. Which we were happy for her to be off of it. But this made her very uncomfortable. Every time we came to see her on Monday she was more distressed each time. That morning Dr. Pierce (neonatologist) said they would probably take ventilator away soon and she would just be on oxygen. I gasped and she said oh don't worry it won't be today!! When paul and I came to see her Monday night she was very upset crying, temp was up. They were about to give her a breakthrough med when Dr. Redfield(neonatologist) said alright let's take her off this is Giving her more grief than good! So he ordered to shut the ventilator down!!! I had to sit down as it hadn't even been a week since surgery and she was almost breathing on her own! We watched as they took it out and she already settled down and seemed like a new person! The next day we didn't visit very long as we wanted her to rest and get use to being off the ventilator. I am here this morning holding her and I finally have my little girl. Paul and I were so excited Monday night to finally see her face! She is just gorgeous!
Our next big hurdle is feeding, so I will be updating at the end of the week! Thank you all again for your thoughts and prayers paul and I feel so lucky that Matilda is doing so well! We actually are still pinching ourselves as 3 wks ago we were so scared of everything. But Matilda really has accepted every challenge they have given her! Thanks again!

Holding our beautiful girl for the first time!!

                                                        Taking the breathing tube out!!!

                                          And our very content Matilda the next morning...

                                          Grandma holding Matilda for the first time

                                       Next hurdle feeding!!!...............to be continued

Recooping

Well it has been 4 days since surgery and Matilda has stayed stable! Which is all we can ask for. I have to give a big shout out to Dr. Ryan Smith who did Matildas anaesthesia. He is my friend Julie's brother and Dr. Kamilya Smith husband(partners with my ob gyn). So it definately was a family affair. He was so sweet and helpful even calling us the night before to go over everything. This made surgery day a little bit more manageable as we knew she was in good hands. Also Dr. Roden who did her surgery......which he jokingly called boring. I said hey we like boring! I also have to think the NICU nurses who are cut from a different cloth. They are beyond amazing and really advocate for our little Matilda and have been so supportive to us. As well the neonatologist are amazing. Calming my nerves as this has been such a rollercoaster............which I never ride rollercoaster........so has been tough.
So a lot of people have asked, "where do we go from here", "how long till she can leave", "when can she come off ventilator?" To which the answer to all of these questions is we don't know. Every CDH baby is different. There is no time line. We are on Matildas time line. As well there are so many other components that could go wrong that we have to watch for. As the docs have said the recoop time can vary from weeks to months. Which I always say "hey we like you all so we are under your direction!"
We tell them that we have prepared ourselves to be here for months. Everyday Paul and I feel so lucky that we found this and had three weeks to prepare. On Wednesday we saw what could have happened if they hadn't found it. A baby came into the NICU and they didn't know what was wrong with baby till they did x-ray to confirm it was in fact CDH. We saw the parents later that afternoon and they looked like how we did almost a Month ago. Paul and I felt for them so much! Later that night they were moving that sweet baby to children's and the dad was just sitting there a bag of nerves. It was really ironic to the left of us is this sweet baby they are trying to get stable to transfer her. And then the doc in front of us saying how pleased they are with Matildas progress. Was a really weird day as we thought that could of been us.
So the docs are pleased with her progress so far. They said she is headed in the right direction. So we will take that, though we literally still take things day by day as we are aware things can change so fast. She is such a little fighter we are so proud of her. Last night Matilda was very awake. She currently is being treated for jaundice so her eyes are covered the whole time. They were doing her vitals and took her eye protector off and Paul started talking and she opened her eyes and looked at us. So think she is already a daddy's girl.
We appreciate everyone's support so much. Please keep those thoughts and prayers coming! I will update next week!
Love to you all!
The Crowes

surgery day

Matilda is out of Surgery! All went well! They could use Matilda's muscle to patch the hernia. They moved everything back to where it needs to be. They even took her appendics out as it was in the wrong place and now if she has stomach pain we don't have to worry about appendicitis. We feel so blessed that we are over the surgery hurdle. The next couple of days will be rocky as this will have caused so much stress for her little body. So will probably be till the end of week before we update again. Please keep our little Matilda in your thoughts and prayers! We need everything we can get right now! We have loved the team Matilda pics. Keep them coming! Here are our teammates so far! Thanks again everyone. We love you all so much. Like I said you all make us so strong!! Which makes our little Matilda so strong!

Matilda cousin Isla and James (they are 21 days apart) in England and Aunty

Matilda American cousins

Friends

Uncle Mike

Portland family

Nonnies teachers

My Amazing Residents & Faculty (They even decorated my office door)

And Us after Matildas surgery.........nerves are calmed (matildas's daddy in purple shirt taking photo)