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)

2nd half of the big game...........

Hello Everyone,

Haven't blogged in a couple of days as Matilda has been kicking some serious tail in the NICU! She has remained stable this whole time and right lung expanded more as has whatever is over in the left lung . The doctors are very happy with her thus far. We received the news today that Matila will be having surgery tomorrow morning @7:30. So I feel as though we have tackled the first half of this defect now its the 2nd half. This is the next big step we will see what is going on in there. It will be a long recovery from this as surgery is so stressful on little baby's body. If everyone again can get there pink and purple out for our little Matilda! We need all the good well wishes we can get. Paul and I are so in love with our little girl. She has accomplished so much in her 5 days of life then we ever could.
I am posting some pics of our little Matilda from yesterday and today when we gave her, her first bath.
Thanks again for all the love and support! We feel it and so does Matilda!
Lots of love,
The Crowes