Today I am praying hard for Clara. Sweet baby girl, with a beautiful name, fighting for her life. For the last three weeks I have been following her story (she is in North Carolina) as well as Pearson's who is at Shands Hospital in Florida, where we were treated. Both babies were born around the same day. Both went on ECMO shortly after birth. Both had to have their surgeries on ECMO. Pearson has Right-sided like Dakota, Clara is left-sided. When I first started following them and praying for them, the thought popped into my head, if the statistics are right, one of these babies is not going to make it. I instantly got mad at myself for even thinking it!!!!!! I hate, hate CDH, but I love the babies, I love their strength and fight. Everytime I read a blog, I am right back to standing by Dakota's bed, listening to the oscillating ventilator, watching her little body shake, staring at the ECMO machine and the tubes of blood, following them with my eyes, staring at the monitors, putting my finger in her little hand, and praying. Pearson is doing wonderful ... Dr. Kays always said that he is never completely happy until the baby is home and healthy, but Pearson is showing all good signs: off ECMO, ventilator settings being turned down, everything is moving in the right direction. Miss Clara is still in the thick of the fight, and the signs are going in the opposite direction. Oh, how I hope they are wrong. I pray for a miracle. I pray that both these sweet babies and all the babies survive ... yet I know my prayers are not always answered and I ache when they are not. All we can do is pray, hope, and offer support. You can do it Clara!

I don't know how long I will do this for, but this is my second year and I still find myself reliving Dakota's days in the hospital, especially momentous days. I have been doing it like crazy the last week .... not even trying, but my mind just flashes back to emotions of that time. This is going to be a ramble, but I need to get it out. Of course on Dakota's birthday, I relived the stress of her birth, and saying goodbye to her ... but I also remembered how I was eerily calm that night. I remember sitting in the hospital, reading my book that my sister gave me on "The Bro Code by Barney Stinson" eating crackers and gingerale and calling in to Shands and pleased that my little girl was stabile. On the 26th, I relived the dissappointment and fear I felt when I called in that morning and heard she was no longer doing so well. I remember the hospital handing me a knitted christmas hat and said that maybe Dakota could wear it later. I knew that it would be so long past Christmas when she could wear a hat, that she would never wear this one. This hat made me aware that most moms were holding their babies now, and I was holding a hat to put in her rememberance box that she would never wear. I still have that hat and look at it as a symbol of what was so very wrong with Dakota's birthday. I remember packing for Gainesville in a daze (and what I packed brings back memories, like the scarf I am wearing today). I remember Dr. Kays calling me and telling me that he thinks Dakota needs to go on ECMO. She's doing all right, he said, but they are at the end of their options, other than ECMO, so it's time. I said yes on the phone. I remember riding up to Gainesville, waiting for the phone call confirming that she was safely on ECMO and trying to force myself to eat a plain chicken sandwich from McDonalds (I did not want to pass out, so I was trying to force myself to eat). I remember arriving that night and being so happy and so relieved to see Dakota. She looked exactly like I expected her to look on ECMO. Her numbers looked good. The nurse showed me her chart from the day and showed me how she had started to crash and then showed me her last couple of blood gases since she'd been on ECMO and how they had improved. They actually had to turn the flow down already since her oxygen was a little too high. I remember how good it felt to hear this. I remember feeling pride for my girl. I remember grabbing my hands behind my back so I wouldn't touch her and going up to her and telling her we were there and we love her and taking her first picture. I remember the nurse telling me I was very calm- she asked me if I was just a calm person. I was very proud of myself and told her that I had prepared myself for this. Honestly, I was in shock. Dr. Kays told me that he was leaving for vacation and that Dakota would be on ECMO a minimum of 10 days while he was gone. He said he was leaving me in great hands and would be in contact as well. He was happy with Dakota's status on ECMO. My parents called to tell me they were driving up. I remember telling them that was silly since they were scheduled to ride up with the motorhome the next day - there was no need to come tonight. My dad said that they just wanted to be there for me. I know now that what they wanted was to be there with me if she died ... because when she went on ECMO, they believed she was going to die. I did not believe this at all so I didn't even realize what they were saying. I just thought they were being silly. I remember the morning of the 27th, my parents were waiting in the NICU waiting room when we got to the hospital and I showed them with pride my baby. I showed them the chart and the machines the nurse had showed me the night before and told them what are good numbers and what they were looking for. Dakota's numbers looked great all day. Her sats were at 100. Her blood gas oxygen was over 100 her CO2 was under 40. I worked on pumping and sat by her side all day. I read the notes in her notebook and soaked up everything I could about what to look for. I talked with her and they let me hold her little hand (Dakota didn't mind a little stimulation so I was able to touch her quite a bit during her ventilation period.) I started reading the Twilight Series next to her bed. I went to toys-r-us and bought a breast pump. Again, I was eerily calm all day. That night I called in every three hours, again all good news. The next morning (December 28th) I woke up with a pit in my stomach, anxious to go see my girl. But Derek was working on getting the wireless internet set up in the motor home and he wanted to get it set up before we left so he could work when we got back from the hospital that night. I was getting angry, I called the hospital again and she was still doing fine. We finally got to the hospital at around 10am and they had us wait a little before letting us come back. I didn't know what that meant. when I walked in to Dakota's area, the alarms were going off on the ECMO machine, but to me at that point, they were just alarms and they meant my baby was in trouble. I remember watching as the nurse adjusted Dakota's position and commented to the ECMO technician that maybe she should just hold her like that all day. She wedged some blankets under Dakota to hold the position and then turned to explain to me that they were having a tough time getting the flow of the ECMO machine that Dr. Kays had ordered. That terrified me. I remember sitting there and waching the alarms go off with wide eyes and a fast beating heart. The nurse after readjusting Dakota again, turned to me and noticed my face. She said, look, look at your baby. She is pink, she is comfortable. Look at her sats on the monitor, she is still 100/100. Look at her last blood gas, it was good. This is our problem with the machine, Dakota is doing fine. Finally I understood. I kept asking questions though, would a slower flow increase the chance for blood clots? The answer was maybe but they were watching closely. Does Dr. Kays know what is going on? They told me they had left him a message. This is the first time I broke down. I remember going back to the pump room and just crying and rocking. I said, why, why does this have to be our journey? Please let her be okay, please let her be okay. The other surgeon came by and the nurses told her what was happening. She looked at Dakota's charts and then said, well, it looks like this baby is ready to come off ECMO. Are you sure?? I said, Dr. Kays said a minimum of 10 days. Yes, she said. She explained that they would have to have another surgery to reposition the cannulas in Dakota's neck if she was going to remain on ECMO, but while the flow had been lowered, she had shown that she didn't need the machine anymore and remained "stabile as a rock" so they were going to take her off. She told me that Dr. Kays was aware of what was happening and approved. So they lowered the flow way down to what could be sustained without having to constantly reposition Dakota and told me they would do trials off all night and then take her off the next day. I called in all night and she was still doing great. So now we're up to today, the 29th. My mom and sisters were still in Gainesville, my dad had gone back home to work. I remember sitting in the waiting room and waiting for them to take Dakota off ECMO. I remember going back to see her and thinking how big the area looked without that machine. I remember again being so proud of Dakota - I called her my little overacheiver. I remember some fear in realizing that they did not leave the cannulas in the neck just clamped off as another CDH baby's mama, Olivia's mom, told me they did with Olivia, in case she had to go back on ECMO. But they were confident that Dakota was doing well. I remember before each blood gas that day, my stomach was in knots and then big smiles would break out as we realized she was doing well. It was a good day. My sister later told me that she thought that Dakota would die until they took her off ECMO. It wasn't until that point that she allowed herself to believe she would live. I am glad I believed it the whole time! I love you baby, I am so glad that you are here with me and that these memories have a happy ending!!!!!!!!!

It is not fair in any way!!!! I hate when any angel is lost to CDH. I think a baby lost after only an hour of life, or a day, or even in the womb, is a huge tragedy. The parents and family loses all the hopes and dreams for their angel and it breaks my heart. But I tell you, the loss of an angel who has already been home haunts me even more. The stories I hear where a baby survives for a month at home, or a few months or even a year or more, terrify me and devastates me to the core. I think it is because I know I love Dakota more and more every single day, and I believe that it would hurt more to lose her now than it would to lose her while she was in the hospital that first week. I loved her before I even knew her, I truly did ... and I loved her before I saw her eyes open and before I was able to hold her. But I love her even more than that now. I remember my sister telling me after Dakota got home, that the first couple of nights my mom came back to their hotel room in Gainesville and told her that she almost hated seeing Dakota (Dakota was on ECMO and fighting for her life) because every time she saw her, she fell more in love with her, and she didn't want to love her so much if she was going to lose her. However, I once read a blog of a CDH angel, and the mom said that before she was born she prayed that her baby would either be taken quickly or survive. But her baby fought for 30 days and there were days when they thought she was going to survive, but she didn't. Yet she was so grateful for those 30 days, grateful for the days of hope, and was glad her prayer that her baby being taken right away wasn't answered. I don't know. I don't know how I would feel in that situation. Right now there are tears streaming down my face for Heath's parents, for Sarah (Jeremiah's mom), for Dawn, for the mommy who just wrote in who lost her 15 month year old ...In a way, I know they were blessed with time to spend with their cherubs, but I imagine the pain of loss would be so much more as well. But maybe there is not greater pain than the loss of any angel, so you can't even compare. I don't know, I shouldn't judge. I am so grateful that I don't know. But right now, my heart hurts so bad for Heath's parents, who I have never met, but who I feel I know deeply. Not fair, not fair at all! God has some answering to do when I get there!

I am happy to be writing this entry while Dakota is almost 22 months, rather than writing it a year ago. About 2 months ago, Dakota suddenly developed a cough. I did not see symptoms of a regular cold before the cough, it just started as a juicy, mucousy cough. I waited a week and then called the pediatrician on the phone. I told her that Dakota was doing okay with it but that she had thrown up several times from coughing, but no fever and was otherwise acting normal throughout the day. She was not eating much, but that wasn't new. She told me to give her over the counter medicine and make an appointment in 10 days if she did not improve. So 10 days later, it was still the same and I brought in Dakota, the doctor told me it was just a cold with a cough and sent me home without any prescription. I told her that I wanted to stay ahead of it, since this was her first one, and that of course I was worried with her weak lungs, but she told me it was not bronchitis or pneumonia. 2 weeks after that (it had been over a month now) Dakota was still coughing, so I sent my husband with Dakota back to the Dr.. She gave him a prescription for the mucous, but no antibiotics. Again, no improvement and the cough seemed to get a little deeper, so 10 days later I took her back AGAIN! Finally, the doctor gave her a prescription for antibiotics and told me it sounded like bronchitis now (but not when my husband had taken her in). After the antibiotics, the cough seems to be on the mend and it is very rare now, but now she caught a cold from me and my husband and her nose is running! She is acting okay though and eating ok for her. I am hoping it doesn't make her cough come back!
This experience has resulted in several thoughts:
1. I am disappointed in my pediatrician, but I don't know if I should be. This is the first time I truly needed her and I feel like she was not as proactive as she should have been and let the cough go on way too long for a child with fragile lungs! On the other hand, I know she was not exhibiting the symptoms of infection and antibiotics aren't prescriped for pure viral things like colds, so maybe she did all she could. But I was still upset watching my baby be sick, even a little bit, for 2 months!!! Now I am worried that she is not a good enough doctor for Dakota but in my area with limited child services I don't know of any others that have even heard of CDH.
2. I felt like a failure as a parent for having failed to protect Dakota from sickness, especially this second cold she caught from my husband and I. I know that she will get sick and this is just the beginning logically, but emotionally I feel like I have failed her. I don't do everything I could to keep her isolated-I forget to wash my hands sometimes and faile to tell others to do it sometimes, but I don't think that is good for her age, so I am going to have to accept emotionally that she is going to get sick.
3. Dakota is a rock star! She has proved that she can handle even a long sickness and even bronchitis with spirit and good nature! She never acted sick and always ran around like a monkey, smiling and laughing. I am so proud of her!
I hope she is completely well soon. I know the cold that my husband and I got passed for us in a few days without any lingering cough, so I hope it is the same for her. If not, this time I will press harder for antibiotics sooner.
4. My problems are small in the large scheme of things. I have been so worried, but then I think back to the days when Dakota was in the hospital - that is real worry. This is just normal parent worry. And I read about some babies who really are struggling with colds and pneumonia and being hospitalized for it and realize that Dakota is doing just fine. I just love my little monkey so much and want her to always be well ... as we all do for our babies.

So I just took Dakota on her first plane ride/vacation. She turned 19 months while we were away. My husband had to stay behind and watch the hardware store for my dad. I travelled out alone with Dakota to Las Vegas, and met my parents and my sisters to stay in my parent's timeshare. I was nervous about travelling with Dakota, especially by myself. It was awesome! I have the best baby in the world. I don't have any comparison since I do not have any local friends with babies, but I think Dakota is just the sweetest little girl. She was awake for the whole first flight but did great, just played with her stickers (her obsession right now), watched mickey mouse clubhouse, ate ice (another obsession-I wish ice had calories!), and smiled. At the layover, she started to get really tired (way past her bedtime), and she fussed for like 5 minutes when we first got on the plane until she fell asleep. We got to Vegas at about 2am our time, and she was startled awake by the lights turning on when we landed so she cried until we got off the plane-but I understood, I wanted to cry too I was so tired. She was so much fun in Vegas. It was much different than going with my husband and gambling-but still fun! We took her to see Cirque de Solei, Mystere, and she sat through the entire 1 1/2 hour show mesmerized. She was pointing at everything. Such a good girl! She seemed to like all the lights and stimulation of Vegas in general. We took her swimming and shopping, and then to a joust/medevil show-Tournament of Kings, which she also loved! She ate some of the meal (she loved the tomato soup) and even cheered (she raised her little arms and clapped) ... so cute!!! I was amazed that she made it through both shows without any fussing at all! On the flight home, we were delayed first 2 hours on our first flight and then 5 hours on our layover!!!!! YUCK!!! But Dakota was an angel. We just walked and walked, and she sat contentedly and just looked around. We had dinner at a restaurant in the airport and she was a good girl. Slept the whole second flight home. I am so proud of my little girl! So far, no plane germs ... but I am watching her!

Dakota had a great check up with Dr. Kays. I can't tell you how excited I get to see Dr. Kays. It's bizarre. Do other CDH moms feel this way about their surgeon? It's almost like seeing a movie start. He is seriously one of my heros. Anyways, Dakota's x-ray looked perfect! Her diaphragm is back to looking even (not elevated on the repair side as it was previously) so that is good news! And Dr. Kays didn't care about Dakota's weight not being on the chart! Thank goodness! We work so hard and I stress so much about eating that meal times are such a chore! I can't wait till they are over and I love when Dakota actually eats well! To me, she looked healthy and happy, so I am glad that opinion was confirmed. I will just continue to work with her.
What I really want to talk about was our visit to NICU III. We visited Christy and Noah. Christy and her husband were sweet and so loving and Noah was so cute and looked really good! I am so happy for them that he is making progress every day! The visit was our first time back in NICU III. Last time I visited, we visited with some nurses in the waiting room and I got to see a baby in NICU II ... but for some reason that was not as weird. NICU II has a completely different feel than NICU III. NICU II babies are going home ... it is just a matter of when. NICU III is where life hangs in the balance. It is much more sterile, bright, and quiet. The babies don't cry in NICU III. I forgot that. When I walked in NICU III and began washing my hands, my heart started beating so hard. The smell ... it all came flooding back. And Noah is in Dakota's old room! Seeing him, was like being right back there with Dakota! It was so bizarre. It felt good to remember in such a vivid way. I don't even know if I can put into words what Shands means to me ... how a place can mean so much and evoke such feeling. How machines and beeps and numbers can be such a important part of my life and experience. It was good to be back there. I am praying that Noah and all the CDH babies fighting for their life are home soon and that those moms and dads get to come back and visit and reexperience the miracle of their children.

Okay, I have to admit something. I just reread my last blog entry and I said something a little untruthful. I said that I did not join Cherubs before Dakota was born because there just wasn't time. That is not all true, because I researched obsessively for the less than 3 weeks between diagnosis and birth, so of course I found Cherubs, but to be honest, the name Cherubs scared me. At that time, I had a strict rule for my sanity-I would only read survivor blogs. The couple of angels I heard about stuck with me and played over and over in my head like a nightmare, so I avoided signing up for this site because I was scared of the angel stories. I regret it now, because like I said in the last entry, I would have loved to have the support, knowledge, and unselfish love from others who went through what I was going through, whether they had a beautiful angel or a survivor. But I am so glad I signed up when I got home! Each cherub I hear about and pray for makes my life richer and fuller and changes me in some way. So thanks for sharing ... and I am glad a lot of other moms are braver than me.

As I was in the hospital with Dakota fighting for her life, I remember feeling enveloped in love and support. I did not have a blog, and was not on Cherubs yet (I only had a couple of weeks between her diagnosis and her unexpected birth), so my love and support came from my family and from friends and acquaintances, and I was so touched.
But I always wished I was part of Cherubs and/or had a blog at the time, because the beautiful love and genuine concern for stangers just pours out of this forum. The pure, multiplied love of CDH parents radiates from the posts of both angels and survivors. We have, or are, battling something that we never thought we would have to face, and what comes through the fear and sadness, is just beautiful, pure love, for our babies, but also for others we have never met. This is the best of humankind on display. I mean, look at Shelley (I hope you don't mind me mentioning you), having surgery today, losing her sweet grandson, and yet praying so hard for the other babies fighting the fight. All the moms of angels, who have the strength and courage and sweet spirit to pray for other parents to get to keep their cherubs on Earth ... Just beautiful, and so unselfish and amazing. I am so proud to be part of this community today. Hugs to everyone.

I had a fabulous mother's day with my little girl! First, on Saturday, we drove with Dakota and my mom to Sawgrass Mills Mall in Fort Lauderdale (an hour and a half drive) to meet my Nana and Aunt and cousin to celebrate mother's day and do a little shopping. Dakota did perfect in the car and slept the whole way there and back! She, of course, impressed everyone with her cuteness and showed off walking!! I love, love, love, so see her walking around now! It took her a while to gain her confidence, but she is so adorable when she walks!
Then Sunday, I got a massage which was wonderful, and then spent the rest of the day doing chores or relaxing until my parents and Derek's parents came over for dinner. I am so grateful to have my little girl, my mom and my nana to celebrate mother's day with. I am a blessed woman.
On the eating front, I think finally, Dakota gain a few ounces. She has been the same weight for the last 3 months .... not good!!!!!!! I called the local hospital and they are supposedly working on finding me a pediatric nutritionist. It is so hard in this area to get any services for children!!! I feel like by reading this forum, I should be doing so much more for Dakota -PT, OT, speech therapy, nutritionist ... but I can't find these things in my area, and if I find them, they are an hour drive away and I have no idea how to get Dakota there with working full time. I hope I am not doing a disservice to her. I know she is a little behind, but she is always progressing. Now she is walking so that is great. She is now behind on speech, but she is very smart and understands everything and communicates ... just not with words unfortunately. I really feel like the words will come though without therapy. Then there is the eating thing ... I suppose I should have got an OT and/or nutritionist a long time ago. But for a long time she was gaining and following a parallel growth curve. I have a lot of guilt as a parent, and I want to do the best I can for my baby, but on the other hand, she is a healthy, vibrant little girl so I can't being doing that much wrong. Ah well, I am greatful that she is here and that I have these worries.

This has been bothering me, so I figured I would get my thoughts out on this blog because I am not a doctor and these are just my thoughts. I am an attorney, and I never work in absolutes. There is very rarely a yes or no answer to anything, it is always a matter of argument with facts leaning towards one side or the other. I believe that medicine, especially with regard to the proper treatment of CDH is the same way ... or it should be. I am not an expert but I have read countless blogs now, everything I can get my hand on, and I watched Dr. Kays work his magic, and I believe the treatment of CDH is an art and hard and fast rules are to the detriment of the patient. I don't like that so many hospitals have a time limit for how long a baby can be on ECMO. I understand that there may come a point where it will be clear that the baby is not going to get better, but I do not think that a hospital can know that that point can be at 7 days or 10 days, period. Olivia, who was in the hospital with us, was on ECMO for almost a month. It took that long for her to get stabile, she needed that time. And now she is home and thriving with no long term apparent effects. Olivia's mom told me that one of the reasons she picked Shands was that a couple of other hospitals she investigated told her that Olivia could be on ECMO no longer than 2 weeks, period (one hospital said 1 week) ... Dr. Kay's answer to that question was "as long as it takes." Most important for our case, most hospitals will not allow a baby on ECMO before 34 weeks, period. Well, Dakota was 32 weeks and 5 days, but she was large for that premie status and she had a good lung volume, but she needed ECMO to get over a crash caused by an infection, and Dr. Kays gave her that chance. I thank God that no one told me that my baby didn't meet the guidelines so there was nothing they could do. I guess it is important to have guidelines but I think, in my humble opinion, it is so important to treat the baby and not adhere to such hard and fast rules. Each CDH baby is different ... we hear that phrase a million times! So treat them like they are different!!! We all love our surgeons and it is not fair or right to praise one above all others because there are great ones all over the country for CDH, so I do not mean to say that Dr. Kays is the only good doctor. But he is the doctor I experienced and I think he is doing what other good CDH doctors are doing around the country, and what all CDH doctors should be doing, treating the patient!!! Just my two cents.

I was reading a blog the other day of a CDH angel. It was heart breaking, but the mom said something so beautiful ... she said that before the baby was born, she prayed that if the baby was going to die, to take her quickly. But the baby lived for 37 days and the mom was thanking God for not granting her prayer. She said the days where her baby was in the hospital were some of the best days of her life. It really made me think. The days in the hospital were definitely some of the hardest days of my life ... I hated seeing my baby struggle, I hated the lack of control, I got sick of being in the hospital and I just wanted to hold my baby and take my sweet girl home. But they were also some of the best days of my life too. There were days where my husband and I were just the very best versions of ourselves. We were so strong. I was so very positive and hopeful and optimistic. All the crap of everyday life fell away, and we only worried about the most important things in life-health, life, love, and family. We really got to see how much our family loved and supported us and would go to the ends of the earth for us. And more than anything else, I was so very proud of my baby. I knew she was special, and this experience would always make her special. One of the best days was the day after Dakota got off ECMO. She was supposed to be on for 10 days minimum, but the cannula in her neck got kinked and she surprised everyone by showing she didn't need ECMO anymore! So they took her off after 3 days! And the day after she was off she was doing amazing! Great numbers and they were turning down her ventilator! I was so incredibly proud of her!!! I imagine it was like how I will feel when she gets a good report card or is performing in a dance recital. I remember a few days after that an expecting CDH family was on a NICU tour and Dr. Kays asked if he could bring them by ... we said of course. And I showed off my baby with such pride. She hadn't even had her surgery yet but I was so sure that she was going to survive and do well. She was my little fighter and even then I showed her off like "see how wonderful your baby can do?" I was a little deluded at times, but beautifully so. They really were some of the best days of my life and they made me a better person. I am so grateful for my little miracle.

My little girl is just the sweetest baby ever ... she has an adorable disposition and has been really healthy *knock on wood* but Man, I wish she would eat more. For the first time I weighed her and she went down in weight. She is often the same and only goes up very, very slowly, but this time she lost=(! We have never been on the growth curve, not even close, and not even for her adjusted age. However, we have also never had a tube since we were discharged. I want to keep it that way and I always hold my breath for the time that my ped expresses concern that we have to do something else. I am trying so hard! I offer her food whenever possible, but she just doesn't eat a lot of volume. She uses that "all done" sign on me way too fast (don't worry, I don't always listen to it and still try to push her a little, without pushing her too much, to try a little more or eat something different). I am going to research today for more high calorie foods I can try. Mac and cheese is a hit, but it also constipates her so I need to not have to give it to her 2x a day. We have also tried cream soups with some success, but she just doesn't take a lot. I want her to stay healthy and keep growing. Ugh!!! I am so grateful she is here and doing so well ..... but EAT BABY EAT!!!!!

Today is the anniversary of bringing my baby home from the hospital. As you all know, in some ways, this is the anniversary of the day when I really became a parent, because up till February 25th, Dakota really was cared for by a whole team of doctors and nurses, but on February 25th, for the first time, she was solely our responsibility and ours to protect and love. The weekend before, I had roomed in the hospital for 48 hours and had done every feed of Dakota's. She had not quite taken the volume she was supposed to, but she had gained weight (barely). The fellow thought that Dr. Kays might be willing to let us go home ... the Nurse Practitioner was leaning the other way ... one Nurse and the Occupational Therapist were pushing for us to go home because they believed Dakota would thrive better at home .... so we were just waiting on Dr. Kays, the man who makes all the decisions. One thing about Dr. Kays is that when you really need him, he is always there, to the extent of spending the night with a critical baby and never leaving his/her bedside until he/she is stabile. But once the baby is past the critical time, he becomes harder and harder to track down (and rightfully so-he is a buys man, but it is frustrating when you need a decision). So we had been waiting for 2 days for the Nurse Practioner to be able to talk to Dr. Kays and Derek and I were sitting in the cafeteria when Derek spotted Dr. Kays accross the cafeteria. He screamed out "THERE'S DR. KAYS!" Everyone looked, I wanted to hide under the table. Dr. Kays smiled and came over and said, "I heard your baby gained like 4 grams/day and you want to go home." He then said, seriously, I think Dakota is ready and he just wanted to check with the Fellow who had been closely following us and then he would sign the discharge papers. Yay! So that next morning, we got the phone call and frantically packed up my inlaw's motor home we were staying in and tried to clean it the best we could. We hurried down to the hospital, shoved a bottle in Dakota, got a flurry of instructions, signed a ton of papers, picked up prescriptions, got the oxygen set up, and were out of there by 3pm. It was so frantic that I couldn't breath until we were driving home. I called my mom and she started crying she was so happy. It didn't hit me until we walked into the front door of our house (which I had not been at since the day after Dakota's birthday-day after Christmas Day). There were unopen Christmas presents and Christmas decorations everywhere. I walked with a sleeping Dakota to her room, which I had set up in faith that this day would arrive. I placed her in her crib and took a deep breath. We did it. We brought our baby home!

So yesterday, February 14th, was not exactly an anniversary, but I remember the day very well. First of all, it was Dakota's original due date. Parents in NICU of premies are often told that the goal is for the baby to be released by their original due date. Of course, with CDH, all bets are off, but back around January 31st it looked doable. After all the drama of ECMO, the surgery, getting extubated, getting through an infection and C-PAP, Dakota was on nasal cannulas by the last week of January and had started feeding. She was progressing really well respiratory wise, and her oxygen was down to 100ccs, the lowest setting, and we were told the setting she would probably go home with. So in a way, she was out of the woods. Most of the adrenaline of the last month left our bodies, we were so thankful and happy and we were ready to take our baby home. Not so fast! She has to learn to eat. But that can't be so hard right? Hah! Well, it started pretty well. Dakota was weak at eating (We had to give her jaw support and rub her cheeks to get her to suck, but she did not totally refuse the bottle.) She was slowly making progress. And on January 30th, Dakota had her GI test. January 31st was a good day. The night before I was told Dakota had some reflux on the study and so I had been up all night researching the nissen procedure which I thought Dr. Kays would reccommend. I was dreading another surgery for my baby and I did not like the idea of the procedure one bit. I understood it and the need for it for some babies, but I didn't like it and I did not want it. I came armed with questions. Dr. Kays met with us that morning and said after looking at the study, even though Dakota had reflux, he would like to try treating it with just medicine and not give her the nissen procedure. Yay!!! My whole body felt the relief!!! He pointed out that she was progressing on eating, even if slowly and inconsistently and also there was the fact that she was right-sided, which meant her stomach was never out of place, making her reflux potentially less severe. Also on the night of the 30th, the night nurse had switched to a NUK nipple and for the first time Dakota had taken a full feed by mouth. It was a good day! We asked Dr. Kays if we could be out of there by February 14th and he said it was dependent on Dakota, but very possible. It didn't happen. In the next, very frustrating two weeks, Dakota progressed at a snail's pace. She just did not want to take a full feed. We would get slowly closer and we would have good days where my husband and I would get her to almost take all her full feeds, then we would call in that night and the night nurse would have only given Dakota 1/2 of her feed by mouth. The doctors said she had to take all of her feeds by mouth consistently to go home. In the meantime, Dakota was gaining weight, so the amount of ccs per feed was going up. We felt like we were trying to reach an ever moving target. On February 14th we felt like we would never get home. I remember going into the pumping room that day and crying my eyes out (harder than I ever cried while Dakota was on ECMO). I just wanted to take my baby home. My maternity leave was rapidly disappearing. I had to be back to work by March 15th and I had so wanted a whole month with Dakota at home (I was so looking forward to my maternity leave and I never really got to experience it like I wanted.). I could not see the light at the end of the tunnel. The walk to the hospital every morning seemed endless. I was sick of living in a motor home. I was 5 hours from home. I wanted to take my baby home. I knew I should feel lucky that Dakota wasn't in danger, respiratory wise at that point. I told myself that I was lucky that she was progressing, even slowly. I knew I didn't want her to get a g-tube just to get out of there ... I would never subject her to a surgery just because I was impatient. So there was nothing I could do but wait and try to enjoy my baby, even though she was in the hospital. I told myself to look at the nurses as nannies and wasn't I lucky to have such good nannies. On February 15th, a great and caring neonatologist came and found us. She said "I have been following you guys and you guys are at a plateau. I know you want to go home, but at this pace I don't see that happening in the near future. So we have to change something." She suggested doing a trial. Taking the NG tube out of Dakota's nose (which makes it much more enjoyable for a baby to eat), having me spend 48 hours rooming in at the hospital and doing every feeding and see if Dakota gained weight. If nothing else, we could see how near or far we are to our goal. We scheduled the trial for the next week. It was a very stressful 48 hours. Dakota did not eat her full feeds ... but she ate enough to gain weight and with much lobbying and talking, finally, on February 25th we were discharged. That is an anniversary I am looking forward to celebrating!!!!!!!!

Okay, so the sleeping thing is not going so well .. and the eating thing is just going mediocre ... but I don't care about all that today. Today I would like to talk about all the adorable things my baby does:
My Dakota loves to crawl around and pull everything she can off shelves, out of drawers, out of purses, etc. She does not like to put things back in. But the key is, she doesn't just pull things out. She pulls them out, examines them closely, turning them from side to side, then offers them to somebody else (whoever is closest) ... if you don't take it from her, it's fair game and in the mouth. But I think it is so cute that she always offers things to others first before partaking of it herself (not quite as cute is that she offers our dog her food before eating it herself ... trying to work on that one). =) She is a very generous little girl.
She can touch her hair and nose if you ask her to (she loves to shove her finger up her nose). She gives big open mouth kisses and waives hi and bye (but usually when people aren't looking-she is shy). She loves to play with our dog and laughs so hard her whole body shakes. She points and grunts at everything now and wants to touch and examine everything!!!! She knows how to do the whole "Pat the Bunny" book. She pats the bunny, plays peek a boo with paul, smells the flowers (so cute), looks in the mirror, reads the book, and sticks her finger through mommy's ring). She seems entranced by Mickey Mouse Clubhouse on TV. She loves to take of her socks, and while doing it she makes the cutest grunting sound. She babbles, but doesn't say any recognizable words except for maybe Hailey (our dog's name). Miss Dakota is getting so good at cruising ... so close to walking! I just love my baby so very much! I love to hold her in the middle of the night and feed her while she strokes my arm! I love to smell her hair (usually full of food) and kiss her sweet face. I love her so much and am grateful for each day with her!