Tomorrow is CDH Awareness Day. Please wear something turquoise to spread the word about CDH and to honor Ramsey and all other children born with the birth defect. Please also remember Pearson and Clara who are currently fighting their CDH battles.
We still haven't heard any response regarding the alarms that went off last week on the monitor. Ramsey still looks and acts great and it hasn't gone off like that since. Still, it sure would be nice to hear something!? I was told they probably had to send the information by mail instead of electronically which really blows my mind. Ramsey's nurse came on Monday. He gained 5.5 ounces in just a few days. His weight was 8lb. 12.5 ounces!
I received this incredible message from a CDH survivor. She is 23 years old and was the first child in Pittsburgh to be placed on ECMO. She is currently training for a half marathon although she only has one lung. I feel so blessed to meet such extraordinary people!
Dear Lisa and family,
I came across your blog somewhat randomly this evening while browsing through some other blogs, and admittedly, your very cute logo/badge made for Ramsey caught my eye and I read on! I am so happy that I did, though, because I soon found out that your adorable son is fighting a CDH diagnosis- the same condition that I was born with 23 years ago. I was born in the winter of 1987 and was rushed to Children's in Pittsburgh, immediately was taken into surgery to rearrange my organs, and was the very first child in Pittsburgh to be placed on ECMO. I stayed for two months in the NICU and came home for the first time on Valentine's Day!
I am so incredibly happy and thankful to see that Ramsey is doing well right now, and I just wanted to write to let you know how very touched I am by your story and your blog. I have never met anyone else with CDH, and as you can imagine, the survival rates then were much slimmer than they are today. I am doing well now, thanks to the extraordinary care at Children's. I now live with just one lung and only had a few diaphragm repairs when I was little, but other than that, I am healthy! Know that there is a light at the end of the tunnel - your little boy certainly seems to be a fighter!
In any case, I just wanted to let you know that your story is amazing for me to read today and makes me think that there is certainly a reason for everything - including my sleeplessness this evening that led me to reading your blog!
Thank you for sharing your story, and I hope and know that Ramsey will continue to grow stronger with each day. I will keep him and your family in my prayers!
Best,
Erika
I have come across a blog about a newborn named Clara who was just born with CDH. I am now obsessed with following it and nervously waiting for an update. As of last night, they were ready to put her on ECMO. I'm praying for Clara and her family and hoping they have the same joyous outcome that we have had with Ramsey! Please offer your support to them at thehardylife.blogspot.com Now, I understand what it feels like to be in your shoes...I keep checking for an update and praying for baby Clara. At the same time, I can completely relate to Clara's parents. They have fear and uncertainty, and like us, they are extremely touched by the amount of support they have received from friends and strangers.
Ramsey is home now, but a certain level of fear continues. For a 24 hour period, starting Wednesday night, Ramsey's alarm started sounding off and on. This was the first time it happened since we came home two weeks ago. Our instinct told us that it was a false alarm. The hospital said to have the monitor checked since he continued to have good color, a good disposition, and he was still eating well. Although he seemed OK, the whole experience was a bit unnerving. I couldn't help but wonder, what if our instincts were wrong? The monitor was just downloaded today and we are waiting to hear what the doctor thinks about the results. The nurse came this morning and she agreed that he looks great and everything sounded good. I hope it was in fact a faulty monitor and that the doctor will be able to tell that after seeing the results.
Yesterday I went to work for the first time in months. The reality of how long I had been away struck me when I entered my office. An unopened Christmas card was on my desk. On the wall hung my 2010 calendar still on December. In reality, I hadn't been to work since November but my co-worker changed it for me (she has a pet peeve over calendars that aren't on the right month). I'm sure it killed her to leave a 2010 calendar on the wall, but it served as a reminder of how long I've been gone. I'm so thankful that my bosses are understanding about my absence. I've worked when able from my laptop, but it's not the same as being there.
My welcome back flowers and cinnamon crunch bagel from my boss :)
Everything feels strange to me. I can't believe it is spring because I missed winter. I suppose that's a very good thing. Still, I feel like I'm coming out of hibernation and I can't wait until Ramsey can join me. It is hard feeling stuck at home, but I can't complain...it's good to have him home with us, period.
Look who's smiling!
Ramsey had another checkup today and is up to 8lbs. 8oz! I'm surprised he is still gaining weight consistently since I started nursing him almost exclusively. We were skeptical of how well he would do with nursing since he was getting extra calories when bottle fed.
Today, he had his second Synagis shot (for RSV) and may need another one next month; not what I wanted to hear since I am anxious for the season of germs to be over. I received this information about RSV today that helps to explain what it is and why it would be harmful to Ramsey:
"Respiratory syncytial virus, or RSV, causes most children to develop a cold. RSV is very common. In fact, almost all children catch RSV by age two. But for most babies born early or with certain lung conditions, RSV is different. For those babies, RSV can lead to serious lung infections like pneumonia and bronchiolitis. In fact, RSV is the number one reason why babies under 12 months old in the US have to go into hospitals."
I'm glad we were spared by today's tornado! Our deck had 2 inches of hail in spots. I don't know when I've ever felt so nervous over the weather, but I tend to be paranoid these days. I know it's irrational, but I fear that something bad is going to happen to one of us because Ramsey is doing so well. I keep thinking of stories I've heard of soldiers who survive the war only to suffer some tragedy at home. I wonder if there is a name for this type of fear and if or when it will end for me.
We went to the pediatrician today and Ramsey gained another 4 ounces! He was up to 8lbs 4 oz and I couldn't be happier! His heart and lungs sound great. A few of you had asked where his lungs stand. Basically, we are not stressing over how big they are at this point because what matters is that they are working well! He may not be a track star, but we can deal with that.
I am not Irish, but I'm sure feeling lucky this year! Happy St. Patty's Day!
Ramsey's nurse came today and he now weighs 8 lbs. Woo Hoo! So glad he is still gaining weight.
Tomorrow we will return to the pediatrician and the nurse will return Friday. It's so reassuring to have continued monitoring of his vitals and weight. I'm so thankful for a wonderful pediatrician who called last night to see how we were both doing.
I would love to write more, but I am off to bed. You know you have tired/blood shot eyes when your three year old says, "Mommy your eyes are cracked!"
Today was Ramsey's first appointment at the pediatrician's office. We made it there in time, but not without the last minute rush that seems to occur with those first doctor visits. My car hadn't been driven since early December when my bed rest began. During those un-driven winter months a mouse apparently moved in! Dennis found a nest in the trunk and a hole that leads to my backseat. Needless to say, I didn't drive my car to the appointment.
I was relieved that no one else was there and we were taken straight to exam room. It's always a bit unnerving taking a "well" child to the doctor and with Ramsey it is even worse. Although, it was fun to take him there because I haven't been able to introduce him to many people outside of our immediate family and friends. Everyone seemed happy to meet our miracle. I can't wait until we can show him off a bit more!
Ramsey had a special visit yesterday by his Great Grandma Razza. I am so glad she was finally able to meet him and hold him.
My friend Dana set me up with the cutest goodies from her friend Sarah of S Schadler Boutique (see the pic above). Sarah made the boys tie tees, and a bunch of other sweet things for Ramsey...bibs, burp cloths and even leg warmers! She chose the cutest fabrics too. Check out her web page to see all of her great work for boys and girls too. I can't wait to have the boys photo taken in their tie tees!!
We left children's yesterday afternoon just one day short of Ramsey's 2 month birthday. Both boys slept the whole way home. At one point, Reed awoke, quickly looked over at Ramsey, smiled, then went back to sleep. He is so excited to have his little brother, or "Ram Man" as he has started calling him, at home.
The night went pretty well. I wasn't nervous because we came home with the Ramsey was fed at 12 then slept till after 4. He threw up and had trouble going back to sleep, but the nurse came today and fortunately, he gained weight! Ironically, the nurse realized that she recognized us from reading the blog!
We are very eager for everyone to meet Ramsey. If we could we'd throw a huge welcome home party, however, the hospital stressed how careful we need to be. Apparently, this is one of the worst flu and RSV seasons. It is so bad that they have folding chairs set up in the ER. They have advised us to keep Ramsey away from any children that attend daycare or school until the season is over, so it should be safer around Easter. As far as adults, anyone that has been free of illness, coughs, etc. for at least three days should be OK to visit. We hate to tell our nieces, nephews and friends children that they can't visit just yet, but that time will come soon enough and we have a lifetime of visits to look forward to.
It's so good to be home, now time to clean, unpack and cook - LOL.
Ramsey gained weight today so we can go home tomorrow!!! Yippee!!!!!!!
Our monitor was delivered today to the hospital so we can use it on the drive home. Ramsey is sitting in his car seat now for his car seat test. He has to stay in it for 90 minutes to be sure he can handle the ride home.
I successfully nursed Ramsey for the first time. He didn't show any confusion. Excusively breastfeeding is something I can attempt to work up to, but he willhave to increase his volume to make up for the extra calories he gets by bottle.
Throughout this difficult journey, we have met so many wonderful people. There are the outstanding employees of Children's who brought Ramsey to where he is today, the families of other patients enduring long stays at the hospital, and especially other CDH families who have reached out to us because they know what it is like to be in our shoes.
Among those families are both earthly and heavenly angels. I was recently contacted by Erika, another CDH mom whose son Logan lost his battle with CDH. She prayed to her son throughout Ramsey's journey that he might give him strength. I believe that he did, and that he continues to do so. Ramsey lies in his crib just calmly looking around and I can't help but believe that he is not alone. There are many angels watching over him.
Below is a Rascal Flatt's song Erika shared with me from "her angel to my soldier":
I love the words to this song!
Following is Logan's story which Erika was open enough to share. May God continue to bless her with the comfort of knowing Logan has a special job in heaven, watching over our earthly angels.
Logan Charles Minch ~ ~October 26, 2007~November 2, 2007
It has taken me almost a year and a half to finally find the strength to write Logan’s story. My husband and I were ecstatic to find out we were pregnant with our second child. My first pregnancy was completely normal and uneventful. We assumed the second pregnancy would be just as easy. Our first child was a year and a half, and she was a picture of health. We went for our routine ultrasound at 19 weeks. The tech. was very quite during the test, but did not seem to be concerned. We found out we were having a boy, and were very excited to have one of each. Within a half hour, our doctor called. We were not home; therefore, missed the call. The next day he called us. We were prepared for bad news since he had called so quickly the day of the ultrasound. He told us that our son had a rare condition called diaphragmatic hernia. He referred us to Magee Women’s Hospital for further testing and genetic counseling. On June 21st our fears were confirmed. Logan had a 50/50 chance of survival since his stomach; all of his bowel, and part of his liver were in his chest. We decided we were going to give him every shot possible. After months of tests and consultations, Logan was born on October 26, 2007. (2 weeks early.) The NICU staff at Magee immediately resuscitated him. I remember the neonatologist gave me a “thumbs up” shortly after his birth. They quickly took him to the NICU to stabilize him before transferring him to Children’s Hospital. I had to stay at Magee, but my husband went with Logan. During the night, Logan had to be put on an oscillating machine, because he was not receiving enough oxygen on the ventilator. Logan’s first few days were great. He was doing well, and the doctors were optimistic about his prognosis. His surgery was scheduled three days after his birth. That Monday his levels did not look as good as they had been. Surgery canceled. Each day things slowly started to get worse. Surgery was postponed Monday, Tuesday, Wednesday, and Thursday. Finally, on Friday, Nov. 2, the doctors decided it was a now or never case. They felt Logan was as stable as he would be for the surgery. I kissed Logan on the head and went to the waiting room to start the wait. After several hours, the head surgeon came out and explained that the actual surgery was a success; however, Logan was not rebounding as expected. His left lung was the size of a grape, and his oxygen levels were extremely low. We were asked to sign permission for him to be placed on ECMO. Deep down I knew we were losing our son. My husband kept telling me to not give up on him. I guess it was a mother’s instinct. The next thing I heard was the intercom paging a social worker to the NICU stat. I knew it was for us. She arrived and took us to a separate room where the surgeons came to meet us. As Logan was being placed on ECMO he began to hemorrhage out of his right lung. They were unable to save him. We held our precious angel for the first time (tube free) shortly after his passing. He was perfect on the outside. I relive that day every day. I pray to God that he is happy and healthy in heaven. A year and one month after Logan passed, we welcomed a healthy baby girl. Our girls will have a guardian angel watching them always. I know Logan would have had so many problems. He is now pain free in heaven.
Ramsey didn't gain any weight yesterday, but he stayed the same so that's not too bad. Hopefully he'll gain a little today. We are still planning on a Friday discharge. Plans are being made to have a monitor delivered to our home. A nurse will visit twice a week for the first two weeks. Following that, they will determine how often he needs to be seen.
Normally it took a lot of work to get Ramsey to finish his bottle. Today, he drank about 80 ml at every feeding without hesitating! He is doing so good, we can now eliminate the 3AM feeding; sleep here I come!
In photos, you may have noticed a ridge along the top of Ramsey's head. He has what is called overlapping sutures; the bones of his skull are overlapping. This typically happens to infants when they are passing through the birth canal so I'm not sure why Ramsey has it since he was delivered by C-section. Plastics came to take a look at it today and said it looks fine and that it should correct itself.
Today's blood work indicated that the billirubin is down a bit more. It still has a ways to go, but it is moving in the right direction.
They are taking the feeding tube out today! Since Ramsey eats a little less at night, we will offer him more volume during the day. After the tube is out, I will be able to try nursing him. They think we will go home this week, if there are no surprises. We should be good to go if he continues to gain weight consistently. His current weight is 3.4 kilograms...I think that's about 7 lbs 5 oz.
Ramsey continued to do well yesterday and overnight, drinking everything except a portion of two feedings! We've been told he is way ahead of the curve compared to other diaphragmatic hernia patients; not surprising since Ramsey rocks! They will be removing his tube soon.
I am so thankful for how well Ramsey is doing yet I feel so sad when I look around and see the other patients and families that are suffering. I pray for their strength and for positive outcomes.
Ramsey did pretty well today! He continues to be offered 65 ml by bottle and whatever he doesn't finish, he is given through the tube. The first few feedings, he only took 45-50 ml but he gradually improved and even finished 2 bottles! They plan to leave the tube over the weekend. I hope he continues to make such great progress. Home in on the horizon!
Today, they offered Ramsey his goal of 65ml every three hours. He took the first completely at noon. However, at three, he drank the first 40 ml and threw it up. For each subsequent bottle, he only drank about 40, but at least he kept it down. Hopefully it was just a bad day and he will drink more, and not throw up tomorrow!
Yesterday, I was queen for a day! My brother and his fiance, Elaine, are opening a spa in Bridgeville. The spa is above Elaine's salon, Boagie and Bachall's on Vanadium Road. Spa on Vanadium will host a Grand Opening party on March 21st...I was lucky enough to preview their services as they treated me to a makeover. The staff at the salon have been Rooting for Ramsey and were gracious enough to pamper me. I received a facial, massage, cut/color, manicure and makeup application...more perks than I ever thought I'd get in one day. After 7 weeks of staying in the hospital, I needed it! Thanks to Alan, Elaine, and everyone at Boagie and Bachall's and the Spa on Vanadium for making it such a special day!! Check out their services or make an appointment- who doesn't deserve a little pampering!?
Lisa (Before) with Elaine at the Spa on Vanadium
After photo with the gang from
Boagie and Bachalls and the Spa on Vanadium
Ramsey is only 10 ml away from his goal. Let's hope for smooth sailing so he can come home soon!
