I woke up at 430am and felt like a rockstar. At 36, I have defied gravity and was able to produce 1ml of nutrition for Ireland. Laugh if you must, this is good news. I had a reduction at the age of 19 that had cut my milk ducts, so even with Tristan, I never produced alot. I had said, at the beginning of my pregnancy, that I wouldn't even try the route of breastfeeding due to the frustration of barely getting anything. Luckily (once again focus on the positives here), I will have enough for what Ireland needs. She will not even begin to be introduced to breast milk for several weeks and it'll be in very tiny increments (cc's) at that. ....Unless, a miracle happens and I begin producing as if all my ducts are working, I will not ever really breast feed but simply pump so that I can see how much I'm getting out of each breasts.
Our visit with Ireland was great last night. She has been weaned off just enough meds to start moving ever so slightly. She has what I'll call a quivering chin. Our baby will stick out her bottom lip and squish her tiny chin and it looks as if she's just about to cry ..when out of nowhere, the lip falls, it looks like she gives a little smile and then she's left with this little dimple in her chin and just the most peaceful look. It is the cutest thing I've seen in forever (probably about 14 years ago with Tristan). We're trying to figure out where she got the little chin dimple. Mikey nor I have this. ...Also, we can see her starting to try to breathe. If you have little ones at home, maybe you watch them when they're laying on their back sometime and watch their little chest go up and down....well, Ireland has started this movement but it is distinctly on the right side only. It is still good and what we expect. Her right lung is proving to be very healthy.
The doctors are beginning to talk about surgery and removing ECMO. Big things will be happening this coming week. It's frustrating because every time we talk to a doctor (remember there is an entire team...2 docs making the decisions for machines, meds, day to day going-ons; day and night nurse practitioners that are sort of a go-between/coordinator for the docs and various nurses and technicians; day and night nurses that actually carry out most of her care prescribed by the docs and technicians; day and night ECMO nurses/techs that care for all things ECMO; and various testing technicians, pharmacists, nutritionists, equipment technicians, etc.)...anyway, let me start over.......It can be frustrating because things can change hour by hour. The nurse practitioner, nurse, and ECMO 'lady' all agree that the surgery will happen sometime next week but doubt it would be Monday, despite that having been thrown out as an option. ......These 3 ladies (yet to have a guy for one of these positions), NP, nurse and ECMO, tend to be the ones continuously at Ireland's side. For that reason, they are always in the 930am daily meetings and they are the ones that can usually answer any and all questions for us. So far, these 3 positions (NP, nurse, ECMO) have been held by different people, but we're starting to have some consistency. The ECMO tends to change from day to day and shift to shift because apparently to maintain "certification" these technicians must keep up with the amount of hours that they work on the machine and due to (thank God) the fact that Ireland is currently the only ECMO patient in the NICU, they must rotate. The nurses will start being consistent. They each work 12 hour shifts and tend to work several days on and then a day or two off, and they are either a day or night shift nurse. All of the nurses tend to be older and more experienced, due to the policy that the experienced nurses work with the most critical babies. The nurses also can sign up to stay with Ireland (which apparently Mikey and I can approve or disapprove, based on if we like them and are content with the care they give Ireland and us). We've already had atleast 3 tell us that they have requested to stay on with Ireland and another nurse (make that previous number a 4) do this as well but she is also certified in ECMO (so we've seen her wear both hats).
For the life of me, I can't remember the name of the nurse that is both a RN and ECMO, think it is Anna. ....we'll call her Anna for now .....Anyway, like I said, Anna wears both hats and does the 730pm to 730am shift. She has 3 children of her own and is very east to talk to. She's been Irelands nurse atleast three times and has also been her ECMO 'lady' twice. Anna answers all of our questions in a way that we easily understand what she's talking about. She was the one that had to call me the night that Mikey and I had to agree to put Ireland on ECMO. She let me know that it was hard to make the call because she knew how badly Ireland needed it and sometimes parents just don't agree to putting their babies on the machine due to all the scary statistics of what can happen. We talked last night about the pros and cons of ECMO and she said that sadly she has to remind parents that even with all the fears of ECMO, that without even trying it, your baby will most likely not live....I respect Anna so much already. Her job is not easy but she said cases like Ireland's are what make her love her job. She is one that saw Ireland at her absolute worst. She was her initial nurse after the emergency c-section, her nurse on the night of ECMO decision, she stayed on during the operation of placing Ireland on the ECMO, and has been there in her various positions since the worst and lets us know how much better Ireland looks each time she comes to work with her. Love this lady, and really must figure out that I've got her name right....think it's because we just talk and only said our names once.
Jane is the daytime nurse that Mikey is in love with. She is much older and has worked at the UofU for over 25years. She is from Massachusetts and her hubby is from Virginia. I've spent some time with Jane but not as much as Mikey has due to I slept on the afternoons of Wed, Thur, and Friday (much needed rest and recovery time). Those afternoons were Mikey and Jane time. ....I just think she's funny. She is very motherly and let me know each morning that I saw her that my job was to get out of there, sleep, recover, eat and work on breast feeding. ...Honestly, I think she just enjoyed gabbing with Mikey on her own. .....Anyway, Jane was the first to let us know that she wanted to stay on with Ireland and she hoped that we would all get along. Jane is very much in charge and sort of tells you what's what. She tends to talk about anything and I have a feeling we'll know everything about each other's lives by the time we are done at Primary's. But when it comes to Ireland's care, ...this is going to be a tough one to explain because I like this lady....she knows what she's doing and I believe if she thinks we're not doing something right, she'll let us know without hesitation. She drilled me on the importance of the breast feeding and how I would be no good to Ireland if I didn't take care of myself. Trust me, I'm smiling as I write this. She's excellent at her job and I think she's great for Ireland. She is tender in her care with Ireland, flirts and charms Mikey, and makes sure I know what my job is at any given moment (is this my mother, wink, wink?).
I met Bonnie yesterday. She is another daytime nurse and she apparently was there as the daytime nurse on Ireland's first day at the NICU and also worked with Ireland in some capacity on the day she went on ECMO. That day was obviously foggy for me, so I guess Mikey met her on Wed and I just didn't remember all the people I met that day. ....Anyway, Bonnie is just gorgeous so she's out, totally not standing next to her again!!!.....Kidding. She was great yesterday. She let me know how much of an improvement she sees in Ireland and that she wanted to be her nurse from the get-go. Bonnie is extremely informative. Without having to ask, Bonnie explained every single tube that is on Ireland. All of them. She explained why it was there, what it did...and in plain english. She also started using the masks that I brought for Ireland, proclaiming them the cutest things ever (therefore, bragging on my amateur talents and instantly a loved friend). ...Bonnie also pulls out the computer if you ask about any test results so that we can see things for ourselves. We've actually seen her xrays and ultrasounds. We've actually been there during some of these tests (even befriending the ultrasound technician). Bonnie stays. Ireland will be really in good hands with her.
Then, we met Celeste last night. I was such a motor mouth with Anna (ECMO hat was being worn last night) that I only know a little about Celeste. She is an older, hispanic woman with a really beautiful smile. She seems the most gentle and emotional with Ireland (this is just going on first impressions). Every single time Celeste went to change some tube position, or suction something in or out of tubes, or change a setting on a machine, she'd go get some sanitizer, rub it into her hands and arms, go touch Ireland somewhere, anywhere, smile at her face and then proceed to do her work. This was enough for me to love Celeste and say that I was sure she'd be great with Ireland.
Anyway, pretty long post, huh? I wasn't ready to sleep after I pumped so got on here instead. ...Please continue to pray for all involved (family, drs, nurses, friends, techs, Ireland...anyone and everyone).
Sunday, August 23, 2009
Saturday, August 22, 2009
Chanda and Ireland first hand hold
So far today is going really well. We spent the morning with Ireland and getting all the latest updates and plans for her. She is doing really well. They are just trying to get all the fluid off her now to prep her for getting off of ECMO. Right now they are hoping to take her off ECMO on monday or tuesday!! If that goes well surgery on thursday or friday to repair the CDH. Lots of positive thoughts and well wishes is so great and we thank you all so much!! It's just be on belief that people from all over the country and the world for that matter has been following our little girl and are riding the same emotions that we feel day after day. In a perfect world we would all care and love each other no matter what is going on, but for now it is just so great that we have the support of soooo many people that we have never meet. Thanks to all and I hope that our little girl's story/journey will continue to help other who are going to go down our path or even heal those who have already been were we are.... HUGS TO ALL!!!!!
Friends and Family
Sometimes, I open this little computer that we keep stationed in my room, and even I get excited. I had no idea Mikey posted last night and am so glad that he keeps all of the technical stuff updated for everyone. ...Isn't she adorable? She's still quite a bit bloated but it's such an improvement than what it was! ...Poor Tristan, doesn't that picture just tell you how tired he is?
I wanted to say thank you for all the prayers. I can say with utmost certainty that I have never in my life talked to God as I have in these past few days. And I dare say, I'm pretty sure he hears about Ireland throughout the day from everyone. Funny how this little one has really brought back my faith. How can she not? ...I can not stress enough how much each and every prayer must be helping her. She is doing unheard of improvements in a very short amount of time. Because of the asphyxia and CDH, she has every excuse to be pitiful and instead....she is just amazing.
I want to thank my family. Immediate, extended, the churches reaching out from the past and present (last count of just my Doss family, 5 churches). Thank you. For my immediate family(parents), Mama, Daddy, Mike and Tammy, Donna, Papa Broad and Reg.....I love you all soooo much. I know that we, unintentionally, hurt you by wanting this time alone to bring Ireland into this world. I know it's just as hard for you guys as it has been for us...maybe harder at times because we can see her and atleast touch her. ...I've wanted each of you here at times, who doesn't want a grandparent oohing and aahing over the prettiest little one ever? I've really wanted my mom here because I guess, something about me having a daughter has wanted me to be closer to her (my mom). I would of loved to see Mikey have his parental support...he's been a rock for us and I am certain that he could of been comforted in ways that I couldn't have provided, especially during those initial hours. I pray that all of you have slowly realized why we made the decisions that we did. .....I would have wanted to visit and look my best and spend time with each of you (what I've needed is rest). We would of struggled on who can see Ireland at which time (only 2 at her side at any given point). We would of wanted to provide you each with the best of accommodations and constantly lent you a hand on directions in the city, where best to grab a bite, where to get a quick rest in the hospital and soooo much more. We probably would of been harder on Tristan because the parents in us would of wanted him to look his best and act the man, when he's been just fine playing too many games this week or watching too much television. ....there are a gazillion reasons that (with each of you living so far from us) we felt this was best. .....life goes on and unfortunately, at this time, our living thousands of miles from each of you makes it to where we have had to make these hard decisions. ...I'll be discharged from the hospital on Sunday and sometime that afternoon we'll be leaving Ireland at Primary's while we go home and figure out how to make a routine. It will most likely be one of the hardest things we ever do. ...BUT, I'd imagine that a comfortable "life" routine that includes some level of normalcy will return and it will be so much easier on us to have everyone visit at various times. ....believe it or not, the terms "so much easier on us" feels selfish to say or write "out loud", but Ireland needs for us to be this way right now. We are grasping in the dark with our entire world at times. ......I am rambling. Sorry. ...I'm just doing my best to convey that I know that this journey is as hard on each of you as it is on us and that deep down, it would be awesome if you lived across the street and could be with us each day. That is just not the reality of our lives. ...I can't wait to see each of you when the time is right and you can visit. Unfortunately, with all that we post of Ireland's continuing improvements, she will be here for a long time. And with that, I really don't know what else to say. I love you all. Thank you for helping us and praying and really, being there for us at any given moment. ...In a month or two, when many have not necessarily forgotten us but they've seen that we're dealing with this just fine, they may forget what we need or for lack of me finding the right words, their lives will adjust and they will have to focus less on us and more on themselves....I have no doubt that during those times, each of you will still have us "front and center".
Okay...no more. I love our parents. I can't wait to see each of you and for Ireland to be held and kissed by each of you.
I meant to simply post a thank you to family and friends. Your prayers are working. It shouldn't "amaze" me to see this happening, but it does. It's truly, corny as it sounds, AMAZING. Her improvements are recordable from one visit to the next. The miracles within her are visible. Hour by hour, tubes are removed, medications are already being weaned off. AMAZING!!!
Anywho, back to thanking everyone!! THANK YOU! THANK YOU! THANK YOU!
...I had a perfect birthday. I've never had so many well wishes in my life.
We also had our first visitors. They couldn't visit Ireland due to the hours, but we loved seeing Meredith, Josh and the girls. More than anything, it was awesome to have the girls making each of us laugh and smile. .......And Jeannie and the kids came....Jeannie doesn't count as first visitor because she has become my Samoan sister, I can't wait for my parents to meet her :)
I hope everyone has a great weekend!
I wanted to say thank you for all the prayers. I can say with utmost certainty that I have never in my life talked to God as I have in these past few days. And I dare say, I'm pretty sure he hears about Ireland throughout the day from everyone. Funny how this little one has really brought back my faith. How can she not? ...I can not stress enough how much each and every prayer must be helping her. She is doing unheard of improvements in a very short amount of time. Because of the asphyxia and CDH, she has every excuse to be pitiful and instead....she is just amazing.
I want to thank my family. Immediate, extended, the churches reaching out from the past and present (last count of just my Doss family, 5 churches). Thank you. For my immediate family(parents), Mama, Daddy, Mike and Tammy, Donna, Papa Broad and Reg.....I love you all soooo much. I know that we, unintentionally, hurt you by wanting this time alone to bring Ireland into this world. I know it's just as hard for you guys as it has been for us...maybe harder at times because we can see her and atleast touch her. ...I've wanted each of you here at times, who doesn't want a grandparent oohing and aahing over the prettiest little one ever? I've really wanted my mom here because I guess, something about me having a daughter has wanted me to be closer to her (my mom). I would of loved to see Mikey have his parental support...he's been a rock for us and I am certain that he could of been comforted in ways that I couldn't have provided, especially during those initial hours. I pray that all of you have slowly realized why we made the decisions that we did. .....I would have wanted to visit and look my best and spend time with each of you (what I've needed is rest). We would of struggled on who can see Ireland at which time (only 2 at her side at any given point). We would of wanted to provide you each with the best of accommodations and constantly lent you a hand on directions in the city, where best to grab a bite, where to get a quick rest in the hospital and soooo much more. We probably would of been harder on Tristan because the parents in us would of wanted him to look his best and act the man, when he's been just fine playing too many games this week or watching too much television. ....there are a gazillion reasons that (with each of you living so far from us) we felt this was best. .....life goes on and unfortunately, at this time, our living thousands of miles from each of you makes it to where we have had to make these hard decisions. ...I'll be discharged from the hospital on Sunday and sometime that afternoon we'll be leaving Ireland at Primary's while we go home and figure out how to make a routine. It will most likely be one of the hardest things we ever do. ...BUT, I'd imagine that a comfortable "life" routine that includes some level of normalcy will return and it will be so much easier on us to have everyone visit at various times. ....believe it or not, the terms "so much easier on us" feels selfish to say or write "out loud", but Ireland needs for us to be this way right now. We are grasping in the dark with our entire world at times. ......I am rambling. Sorry. ...I'm just doing my best to convey that I know that this journey is as hard on each of you as it is on us and that deep down, it would be awesome if you lived across the street and could be with us each day. That is just not the reality of our lives. ...I can't wait to see each of you when the time is right and you can visit. Unfortunately, with all that we post of Ireland's continuing improvements, she will be here for a long time. And with that, I really don't know what else to say. I love you all. Thank you for helping us and praying and really, being there for us at any given moment. ...In a month or two, when many have not necessarily forgotten us but they've seen that we're dealing with this just fine, they may forget what we need or for lack of me finding the right words, their lives will adjust and they will have to focus less on us and more on themselves....I have no doubt that during those times, each of you will still have us "front and center".
Okay...no more. I love our parents. I can't wait to see each of you and for Ireland to be held and kissed by each of you.
I meant to simply post a thank you to family and friends. Your prayers are working. It shouldn't "amaze" me to see this happening, but it does. It's truly, corny as it sounds, AMAZING. Her improvements are recordable from one visit to the next. The miracles within her are visible. Hour by hour, tubes are removed, medications are already being weaned off. AMAZING!!!
Anywho, back to thanking everyone!! THANK YOU! THANK YOU! THANK YOU!
...I had a perfect birthday. I've never had so many well wishes in my life.
We also had our first visitors. They couldn't visit Ireland due to the hours, but we loved seeing Meredith, Josh and the girls. More than anything, it was awesome to have the girls making each of us laugh and smile. .......And Jeannie and the kids came....Jeannie doesn't count as first visitor because she has become my Samoan sister, I can't wait for my parents to meet her :)
I hope everyone has a great weekend!
Friday, August 21, 2009
Still looking good
Well little Ireland has been doin quite well. She started off with 16 syringe pumps of medicine and now is down to 8! She's peeing like crazy so kidneys are working fine.. Doc were worried about them because of the lack of O2 during birth but she's fine on that. Her blood pressure is doin great. Echocardiogram and head ultrasound's have all come back a ok. Tomorrow around 9 am she is due to come off the cooling of her blood. The will start to heat up her blood back to normal temps. Right now shes about 92-93 degree's. As far as the ECMO goes she is doin really good on it. They have taken her down to about 20% on it and her BP is still very strong. They talked to me this afternoon about if she keeps up the pace they are trying to take her off ECMO on Tuesday or Wednesday and depending on how she is holding up may do her surgery to put the intestines and stomach back down on one of those days also. Still keeping in mind that this is all best case seniouo and something could change but as we have learned from everyone else here on the blogs that have been in our place.. take the good when you can and that is what we are doin today... Thanks to all for the well wishes and prays and whatnot... Your comments are great encouragement to both of us everyday...
Mikey
P.S. some more pics of "daddy's girl"!!
Mikey
P.S. some more pics of "daddy's girl"!!
Running with the good news and happy birthday Chanda!!! xoxox
Its Mikey,
You all thought now that Chanda is back that I would just leave you all... well you can't get rid of me that easy people!!! I got some very much needed sleep last night thanks to my little girl having a much better afternoon and nite... We are on our way to the 930 get together with all the doc's and nurses, specialists etc... will post on the outcome later... thanks to all for the love and well wishes... Ireland says "THANKS"!!!!!!
You all thought now that Chanda is back that I would just leave you all... well you can't get rid of me that easy people!!! I got some very much needed sleep last night thanks to my little girl having a much better afternoon and nite... We are on our way to the 930 get together with all the doc's and nurses, specialists etc... will post on the outcome later... thanks to all for the love and well wishes... Ireland says "THANKS"!!!!!!
Thursday, August 20, 2009
GOOD night
Well, Mikey and I did our night visit with Ireland and she was doing wonderful! I'm still heavily medicated and can only understand things to a point....so with ultra simplicity I present her numbers for you. The number that is supposed to be between 40 and 50 but best at 50 was............50!!!! The 2 numbers that were supposed to stay the same.....were flipping back and forth between the same and one off!!! And for the CDH mama's that have been there before me...she is peeing lots!! For those that don't have a clue about the urine output.....basically Ireland is extremely swollen from the ECMO (bypass) and she is doing very well passing these fluids. And mystery of all mysteries, our baby has pooped TWICE!!!! Those in the know, well yes, we're proud. For those that are learning, pooping tends to mean that the stomach and bowels (that are still in her chest cavity) are working properly! For the Brady's out there, yes, this confirms your genetics :) !!! .......I will sleep well tonight. Ireland's doctor did walk by and say that the pooping was indeed a mystery and something to look into further (must they all be so brainy and scientific)....but I choose to believe that this is going to prove our baby is performing miracles.
Yes, we know to be prepared for a roller coaster with many ups and downs but tonight feels celebratory! Your prayers are working. So thank you everyone!!!!
Yes, we know to be prepared for a roller coaster with many ups and downs but tonight feels celebratory! Your prayers are working. So thank you everyone!!!!
up til now
First off, Mikey has been incredible, huh?! I spent a good amount of time last night just reading what Mikey has written and also the post from our friends and family. Thanks so much for all the thoughts and prayers. We've needed them.
As for me, I am well as can be. My entire pregnancy has been healthy and pretty great. I've learned all I could about cdh and well..........what happened is beyond belief.
Mikey has pretty much updated step by step so I'm sure I'll be repeating things....but here is my story.
Tuesday morning we were up at the said time of 430am....I was up at 4 because this was apparently my body's own determined time. ....anyway, we all got ready, did our thing and were out the door by 5. We started our journey pretty dang excited and all that was left, was to call to make sure emergency c-sections wouldn't push us back. We called, were told no emergencies....great. Said we'd see them at 6am and the other end of the phone said "name again"..."Brady"...."oh, we've got you down for 1230pm, cut at 230pm".......this begins our drama.
I was pretty distraught. In hindsight, I was overly upset but lets remember that I'd been told 7am for atleast a month and was told in the recent week or two that I'd have to wait about 12 hours before I could see my baby after the c-section. .....Well, do the math. If I was being cut at 230pm.....who was going to take me to see Ireland at 230am? I was beyond upset!!! I was an official wreck. Well, we turned around, went home, called a few folks and tried to relax. Mikey and Tristan did much better than I with the whole relax thing...T slept until 10 and Mikey just about had to be woken up. I fell asleep for about an hour and then spent the rest of the time playing solitaire.
Well, we all got prettied up and decided to do our best of getting excited again. This was not as easy as you'd think. I was still under the impression of having to wait 12 hours to see her and who was going to wheel me to my baby in the middle of the night. Actually, I was beyond hysterics. Once the nurse had us in what was to be my labor room, I broke down in front of her and commenced to look like an idiot that wanted someone's job for not calling us when there was a major scheduling problem and then to reschedule us at a time that would make it hard for us to see our baby....well, I can not remember a time that I cried so hysterically. .........Fortunately, this irritatingly cute nurse had seen my type before and ended up being some sort of angel that had me calmed and assured in minutes. She assured me that I'd see Ireland as much as I wanted and that the nurses were there for me.
....to keep a long story somewhat short, the nurses have been here for me. Also, because I could probably write entirely too much for one post AND Mikey has done a good job keeping everyone updated, I'll just try to quickly update up to now.
Well, I calmed down and changed into my lovely hospital gown. I spoke with several nurses and doctors about various topics of c-section, CDH, baby names, important paperwork and recovery for myself and later for Ireland. I was given an IV and then the ultrasound machine was rolled in. Sure enough, Ireland had flipped to head down. Crazy girl, when did she do that?!
We were moved to the big room across the hall and back to plan one where I would have a vaginal birth. .........After 2 cervix softening pills (right inside you and pushed painfully into me , or it felt that way) that took 4 hours a piece to take, I had actually started contracting pretty much on my own. Some contractions were stronger than others, some were felt and some were not. I believe I was given one more of the cervix softening pills and the pitocin (contract starting medication) was give to me a little before midnight. The plan was a very small dose of pitocin and just a very gradual increase in the drug because the NICU would be better prepared in the morning and Dr. Silver would also be there. I sort of on and off napped during this time. At one point, I went to the bathroom just because I felt that I could really have a BM and truth be known, sitting on the pot was sort of comfortable. After a minute or two of comfort, I heard that swish and was pretty sure my water had broke. Mikey came in to look because the swish felt different and sure enough he saw quite a bit of blood in with the amniotic fluid. He called the nurse in and she simply had me go back to bed and she'd talk to the doctor on call and see what the plan was from there. ....good patient that I am, I went back to bed, slept some, and slowly got to that point where I was just whiny and uncomfortable. Nothing was working in the bed so I had Mikey help me to the bathroom again. I think I was there for all of 5 minutes, somewhat comfortable just sitting there when there was another swish sound and i knew more fluid was in the toilet. Mikey came to see what I needed and I said to just call our nurse, it was time to get something going...plus, she hadn't gotten back with us on what was the game plan. Well, I got back to the bed, the nurse had arrived and started to check me. The next thing I remember is hearing something about the cord, feeling as if someone had a fist inside me and having a mask slammed in my face where I just knew that I was supposed to breathe.
Many hours later, I wake up from a fog, ready to go back to sleep...stay up for some reason and start to talk to Mikey. He calls me Mama and precedes to let me know that I had an emergency c-section. Whoa!!! That was just weird because I don't remember any of that.
I had a tough time realizing that Ireland was born on a Wednesday and that I gave birth. Nurses are coming in giving me meds, I'm sort of in pain and I just want to see Ireland. Somewhere at some point, I sign some papers, Mikey kisses me and my baby girl is rolled in to see me. I only really see her legs and part of her chest. I see a cute little baby but not really, I can't see her face or anything. I can't get out of the too low bed and she can't be moved in her too high isolette. ....Mikey gives me another kiss, tells Tristan to take care of me and lets me know he'll take lots of pics and he'll be back soon. ........I am moved to yet another room, meet more nice nurses and just sleep. Tristan helps me with anything and everything and I see that my man/child is good. He's really good. Better than that even. ......My bestest friend, Jeannie has been there when nothing was happening and then becomes my sister, mother and nurse all in less than a morning and early afternoon. Mikey has become daddy. He's always been Tristan's #2 daddy and now he's Ireland's numero uno!!......I all of a sudden really want my mama here.........I learn that our beautiful baby girl has asphyxia (result of umbilical cord having been pinched off and taking away her precious oxygen to her brain), in addition to pretty severe pulmonary hypertension (somewhat expected with CDH but in truth we were expecting this to be a milder case). .......My throat hurts because a tube was inserted in my throat when I had to have anesthesia for the emergency c-section. My incision hurts....and I am so tired. .......I want to see my baby. Well, baby girl has been having a tough time getting all of her initial tubes and such in her body. Her veins are awfully tiny because she's been on a cooling blanket. She needs to be at 35-36 degrees Celsius to help ease what has happened to the oxygen that was cut off to her brain due to the asphyxia. .......Tristan has met his baby sister. Mikey has spent some time with daughter and is distraught because he can not do for her. Mikey has also been told to stay away several times because the doctors have been working on getting certain procedures to work on her. ....Some point during the afternoon, Tristan watches a movie and Mikey rolls me to the NICU so that I can properly meet my daughter. She's so beautiful and honestly, just fat and cute. She's actually 7 lbs 12 ozs and 21.5 inches tall. Perfect really. ....did I say that already?...I'm told to ask questions. I do this and with each question, I get the answer that they can't answer that, they just don't know, time will tell. I just had percocet about 1/2 an hour before Mikey wheeled me to Primary Children's, so of course the facts that they give me, I'm having a hard time retaining the information or even understanding. .......I'm pooped. We throw kisses at our baby girl and leave her in the hands of the good doctors and nurses. .....I see that Mikey is also exhausted. On the way back to my room at the UofU, Mikey and I decide that he and Tristan should go on to the hotel and that we all get a good night of sleep. It's still somewhat early, but they need a decent meal, Tristan needs a change of scenery, and I really could use some time to process all of this. .....Mikey lets me know that he'll come back a little later in the evening, so that he and I can see Ireland again before we go to bed. ......After too little rest, too little to eat, and having talked to family on the phone, Mikey shows up and we spend a little time talking and then we're off to wish Ireland a good night. ........She is so still now. She was given a "paralytic" drug. She had been fighting her machines nonstop and she needed to rest. .....We love her so much already! We say our good nights. .......Mikey is sent back to the hotel with some aspirin, love, many thanks for keeping everyone updated and a wish that he'll finally get the deep rest he needs. I go back to my room for some breast feeding 101 and then to try to rest. I read all that Mikey has been posting and just love him even more. .....I hurt but am also amazed that it isn't as bad as I thought it would be. ..........I am woken a few times during the night with pain and some meds. Around 3am my phone rings. It is the NICU and decisions need to be made. ECMO has entered our life. I'm at that time being checked for UTI and having a catheter inserted for a sample and needing to call Mikey....What day is it again?........Well, I take care of my basic needs and call Mikey and let him know that the nurses know that I'll be needing a wheel chair and that Tristan will be in the room......Mikey and I meet with the doctor and we agree to start ECMO (heart/lung bypass machine). This was our biggest fear but we know that this is what is needed. .......Apparently, asphyxia and pulmonary hypertension is a new one for all the big CDH docs. Our doctors have been consulting with the "cooling" experts to prevent further damage to Ireland's brain (due to the cord prolapse). The pulmonary hypertension that we thought would not be such a big deal with our "best case scenario" baby is now off the charts. ...Essentially, we had prepared ourselves for so much, while believing the best, and have instead landed in this vast place of newness and scary terms. ........The ECMO took a very long time to settle into place due to the complications with cooling. .....Mikey and I left to try to get some rest. I got a call sometime this morning that she was stable. With Mikey having been sent back to the hotel to finally get some sleep, Tristan wheeled me to Ireland. .......She is now very swollen and so very still. It's spooky to me. It's hard to look at this precious baby of mine. I'm somehow staying strong and ever positive. I listen in on a meeting of doctors, nurses and experts. I'm so tired. I'm hungry too. I take notes and don't really understand them. I stop taking notes because I really have no idea what I'm writing down. I talk to the nurse. I feel pride that my son is acting a responsible man and loving brother to this precious new life. I touch Ireland as I'm instructed while scared of hurting her or touching one of the flimsy tubes. I listen to that loud pumping Nitrous Oxide machine. I look at the bright red blood going into her neck and the darker blood that enters the ECMO machine. The good nurse is telling me that I should go get some rest. She's right. I'm so tired. ......Tristan wheels me back to my room. I talk to Mikey and we break down over the phone. My nurse takes more vitals from me, I'm given paperwork for a birth certificate, and I have a conversation that I don't really remember with a social worker. I eat a lousy sandwich and fortunately, for savings sake, they have an extra lunch and give Tristan a lousy sandwich too. Mikey calls and he's on his way, stopping to see Ireland first. ....Well, I'm hurting. The greatest nurse I can have talks with me a bit and out of nowhere, I finally break down. I hurt, I'm tired and my baby is at that hospital across the tunnel and I don't know what to do with myself. She hugs me and says it's about time because I need to grieve. I don't want to grieve but I know what she means. It feels good. ........She leaves, brings back some strong medication and explains the new pain medications I'll be on and at what doses. I laugh and say that I have no clue what she's talking about. She hugs me again, leaves and I write this post. Tristan has been my nurse and Mikey will be here at any time. .....I'm tired and plan on getting a nap now. .....I am told to not ask what's happening tomorrow or next week. I ask how the hours are going and if it was a good "shift". ....I feel guilty because I'm tired, wanting sleep and not standing over Ireland. ........I hope she can feel the prayers and love I'm sending to her. ...........this is it for now. I think I've caught up everyone. Please continue to pray for us, we need them. ...my eyes hurt.
As for me, I am well as can be. My entire pregnancy has been healthy and pretty great. I've learned all I could about cdh and well..........what happened is beyond belief.
Mikey has pretty much updated step by step so I'm sure I'll be repeating things....but here is my story.
Tuesday morning we were up at the said time of 430am....I was up at 4 because this was apparently my body's own determined time. ....anyway, we all got ready, did our thing and were out the door by 5. We started our journey pretty dang excited and all that was left, was to call to make sure emergency c-sections wouldn't push us back. We called, were told no emergencies....great. Said we'd see them at 6am and the other end of the phone said "name again"..."Brady"...."oh, we've got you down for 1230pm, cut at 230pm".......this begins our drama.
I was pretty distraught. In hindsight, I was overly upset but lets remember that I'd been told 7am for atleast a month and was told in the recent week or two that I'd have to wait about 12 hours before I could see my baby after the c-section. .....Well, do the math. If I was being cut at 230pm.....who was going to take me to see Ireland at 230am? I was beyond upset!!! I was an official wreck. Well, we turned around, went home, called a few folks and tried to relax. Mikey and Tristan did much better than I with the whole relax thing...T slept until 10 and Mikey just about had to be woken up. I fell asleep for about an hour and then spent the rest of the time playing solitaire.
Well, we all got prettied up and decided to do our best of getting excited again. This was not as easy as you'd think. I was still under the impression of having to wait 12 hours to see her and who was going to wheel me to my baby in the middle of the night. Actually, I was beyond hysterics. Once the nurse had us in what was to be my labor room, I broke down in front of her and commenced to look like an idiot that wanted someone's job for not calling us when there was a major scheduling problem and then to reschedule us at a time that would make it hard for us to see our baby....well, I can not remember a time that I cried so hysterically. .........Fortunately, this irritatingly cute nurse had seen my type before and ended up being some sort of angel that had me calmed and assured in minutes. She assured me that I'd see Ireland as much as I wanted and that the nurses were there for me.
....to keep a long story somewhat short, the nurses have been here for me. Also, because I could probably write entirely too much for one post AND Mikey has done a good job keeping everyone updated, I'll just try to quickly update up to now.
Well, I calmed down and changed into my lovely hospital gown. I spoke with several nurses and doctors about various topics of c-section, CDH, baby names, important paperwork and recovery for myself and later for Ireland. I was given an IV and then the ultrasound machine was rolled in. Sure enough, Ireland had flipped to head down. Crazy girl, when did she do that?!
We were moved to the big room across the hall and back to plan one where I would have a vaginal birth. .........After 2 cervix softening pills (right inside you and pushed painfully into me , or it felt that way) that took 4 hours a piece to take, I had actually started contracting pretty much on my own. Some contractions were stronger than others, some were felt and some were not. I believe I was given one more of the cervix softening pills and the pitocin (contract starting medication) was give to me a little before midnight. The plan was a very small dose of pitocin and just a very gradual increase in the drug because the NICU would be better prepared in the morning and Dr. Silver would also be there. I sort of on and off napped during this time. At one point, I went to the bathroom just because I felt that I could really have a BM and truth be known, sitting on the pot was sort of comfortable. After a minute or two of comfort, I heard that swish and was pretty sure my water had broke. Mikey came in to look because the swish felt different and sure enough he saw quite a bit of blood in with the amniotic fluid. He called the nurse in and she simply had me go back to bed and she'd talk to the doctor on call and see what the plan was from there. ....good patient that I am, I went back to bed, slept some, and slowly got to that point where I was just whiny and uncomfortable. Nothing was working in the bed so I had Mikey help me to the bathroom again. I think I was there for all of 5 minutes, somewhat comfortable just sitting there when there was another swish sound and i knew more fluid was in the toilet. Mikey came to see what I needed and I said to just call our nurse, it was time to get something going...plus, she hadn't gotten back with us on what was the game plan. Well, I got back to the bed, the nurse had arrived and started to check me. The next thing I remember is hearing something about the cord, feeling as if someone had a fist inside me and having a mask slammed in my face where I just knew that I was supposed to breathe.
Many hours later, I wake up from a fog, ready to go back to sleep...stay up for some reason and start to talk to Mikey. He calls me Mama and precedes to let me know that I had an emergency c-section. Whoa!!! That was just weird because I don't remember any of that.
I had a tough time realizing that Ireland was born on a Wednesday and that I gave birth. Nurses are coming in giving me meds, I'm sort of in pain and I just want to see Ireland. Somewhere at some point, I sign some papers, Mikey kisses me and my baby girl is rolled in to see me. I only really see her legs and part of her chest. I see a cute little baby but not really, I can't see her face or anything. I can't get out of the too low bed and she can't be moved in her too high isolette. ....Mikey gives me another kiss, tells Tristan to take care of me and lets me know he'll take lots of pics and he'll be back soon. ........I am moved to yet another room, meet more nice nurses and just sleep. Tristan helps me with anything and everything and I see that my man/child is good. He's really good. Better than that even. ......My bestest friend, Jeannie has been there when nothing was happening and then becomes my sister, mother and nurse all in less than a morning and early afternoon. Mikey has become daddy. He's always been Tristan's #2 daddy and now he's Ireland's numero uno!!......I all of a sudden really want my mama here.........I learn that our beautiful baby girl has asphyxia (result of umbilical cord having been pinched off and taking away her precious oxygen to her brain), in addition to pretty severe pulmonary hypertension (somewhat expected with CDH but in truth we were expecting this to be a milder case). .......My throat hurts because a tube was inserted in my throat when I had to have anesthesia for the emergency c-section. My incision hurts....and I am so tired. .......I want to see my baby. Well, baby girl has been having a tough time getting all of her initial tubes and such in her body. Her veins are awfully tiny because she's been on a cooling blanket. She needs to be at 35-36 degrees Celsius to help ease what has happened to the oxygen that was cut off to her brain due to the asphyxia. .......Tristan has met his baby sister. Mikey has spent some time with daughter and is distraught because he can not do for her. Mikey has also been told to stay away several times because the doctors have been working on getting certain procedures to work on her. ....Some point during the afternoon, Tristan watches a movie and Mikey rolls me to the NICU so that I can properly meet my daughter. She's so beautiful and honestly, just fat and cute. She's actually 7 lbs 12 ozs and 21.5 inches tall. Perfect really. ....did I say that already?...I'm told to ask questions. I do this and with each question, I get the answer that they can't answer that, they just don't know, time will tell. I just had percocet about 1/2 an hour before Mikey wheeled me to Primary Children's, so of course the facts that they give me, I'm having a hard time retaining the information or even understanding. .......I'm pooped. We throw kisses at our baby girl and leave her in the hands of the good doctors and nurses. .....I see that Mikey is also exhausted. On the way back to my room at the UofU, Mikey and I decide that he and Tristan should go on to the hotel and that we all get a good night of sleep. It's still somewhat early, but they need a decent meal, Tristan needs a change of scenery, and I really could use some time to process all of this. .....Mikey lets me know that he'll come back a little later in the evening, so that he and I can see Ireland again before we go to bed. ......After too little rest, too little to eat, and having talked to family on the phone, Mikey shows up and we spend a little time talking and then we're off to wish Ireland a good night. ........She is so still now. She was given a "paralytic" drug. She had been fighting her machines nonstop and she needed to rest. .....We love her so much already! We say our good nights. .......Mikey is sent back to the hotel with some aspirin, love, many thanks for keeping everyone updated and a wish that he'll finally get the deep rest he needs. I go back to my room for some breast feeding 101 and then to try to rest. I read all that Mikey has been posting and just love him even more. .....I hurt but am also amazed that it isn't as bad as I thought it would be. ..........I am woken a few times during the night with pain and some meds. Around 3am my phone rings. It is the NICU and decisions need to be made. ECMO has entered our life. I'm at that time being checked for UTI and having a catheter inserted for a sample and needing to call Mikey....What day is it again?........Well, I take care of my basic needs and call Mikey and let him know that the nurses know that I'll be needing a wheel chair and that Tristan will be in the room......Mikey and I meet with the doctor and we agree to start ECMO (heart/lung bypass machine). This was our biggest fear but we know that this is what is needed. .......Apparently, asphyxia and pulmonary hypertension is a new one for all the big CDH docs. Our doctors have been consulting with the "cooling" experts to prevent further damage to Ireland's brain (due to the cord prolapse). The pulmonary hypertension that we thought would not be such a big deal with our "best case scenario" baby is now off the charts. ...Essentially, we had prepared ourselves for so much, while believing the best, and have instead landed in this vast place of newness and scary terms. ........The ECMO took a very long time to settle into place due to the complications with cooling. .....Mikey and I left to try to get some rest. I got a call sometime this morning that she was stable. With Mikey having been sent back to the hotel to finally get some sleep, Tristan wheeled me to Ireland. .......She is now very swollen and so very still. It's spooky to me. It's hard to look at this precious baby of mine. I'm somehow staying strong and ever positive. I listen in on a meeting of doctors, nurses and experts. I'm so tired. I'm hungry too. I take notes and don't really understand them. I stop taking notes because I really have no idea what I'm writing down. I talk to the nurse. I feel pride that my son is acting a responsible man and loving brother to this precious new life. I touch Ireland as I'm instructed while scared of hurting her or touching one of the flimsy tubes. I listen to that loud pumping Nitrous Oxide machine. I look at the bright red blood going into her neck and the darker blood that enters the ECMO machine. The good nurse is telling me that I should go get some rest. She's right. I'm so tired. ......Tristan wheels me back to my room. I talk to Mikey and we break down over the phone. My nurse takes more vitals from me, I'm given paperwork for a birth certificate, and I have a conversation that I don't really remember with a social worker. I eat a lousy sandwich and fortunately, for savings sake, they have an extra lunch and give Tristan a lousy sandwich too. Mikey calls and he's on his way, stopping to see Ireland first. ....Well, I'm hurting. The greatest nurse I can have talks with me a bit and out of nowhere, I finally break down. I hurt, I'm tired and my baby is at that hospital across the tunnel and I don't know what to do with myself. She hugs me and says it's about time because I need to grieve. I don't want to grieve but I know what she means. It feels good. ........She leaves, brings back some strong medication and explains the new pain medications I'll be on and at what doses. I laugh and say that I have no clue what she's talking about. She hugs me again, leaves and I write this post. Tristan has been my nurse and Mikey will be here at any time. .....I'm tired and plan on getting a nap now. .....I am told to not ask what's happening tomorrow or next week. I ask how the hours are going and if it was a good "shift". ....I feel guilty because I'm tired, wanting sleep and not standing over Ireland. ........I hope she can feel the prayers and love I'm sending to her. ...........this is it for now. I think I've caught up everyone. Please continue to pray for us, we need them. ...my eyes hurt.
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