She has also been moving in ways that are a bit concerning to the doctors. She is scheduled for an EEG (Electroencephalography) on the Thursday that follows to rule out possible seizures.
Allison will also be going in to have her hearing and sight checked as is routine for babies who had a rough start like she did.
We are going to have a very busy couple of weeks ahead of us, but hopefully all appointments and therapies go well!
Dear Family and Friends,
We are writing regarding a very important matter, Allison's health and safety. For those of you who plan to visit us over the next few months, please take a few minutes to read this letter.
We would like to share an important topic recently discussed with us by Allison's doctors. If you are not aware of RSV (Respiratory Syncytial Virus) you are of the majority. Nearly every child has had the virus at least once by age two. For babies born full-term and without complications, it is typically a bad cold. But, the highest risk factors for contracting RSV and developing complications like pneumonia, bronchiolitis, and other sometimes fatal complications are; being born premature, being born with a lung condition, or being born with a heart condition. Allison was born with all three.
Preventing the spread of RSV is very difficult. Thus, we must be vigilant about keeping Allison safe during RSV season (October through April). The virus is spread through physical contact, in the air via a cough or sneeze, or by touching an infected object. The virus can live as long as six hours on hands, and up to twelve hours on objects. If Allison contracts RSV she will likely be hospitalized since she does not have the necessary immunities to fight off infection like the rest of us. Last year alone, over 125,000 infants in the US were hospitalized due to complications from contracting RSV.
That being said, we'll be asking our visitors to follow a few guidelines to help prevent Allison from contracting RSV or other illnesses.
Please be prepared to take off your shoes and wash your hands upon entering our home.
Please refrain from coming over if you are currently experiencing any illness symptoms, or have been in close contact with anyone showing symptoms.
If you are a parent of young children, please refrain from bringing them into our home during RSV season. The most common form of transmission is from child to child.
If you smoke or live with someone who smokes, please change your clothing and refrain from smoking prior to visiting. Allison's lungs are very sensitive to smoke and even passive exposure increases her risk of contracting an illness.
If at all possible, get a flu shot at the start of the season.
Please do not let these precautions frighten you or stop you from making contact with our family. They are simple precautions that every loving parent with a fighter like ours must take during this season.
Unfortunately this also means that there will be events during RSV season that we will be unable to attend with Allison. If you know that either young children will be attending, or that the number of people attending is too large to screen, please advise us of this. Please do not be offended if we have to turn down your invitation, as we are simply trying to keep our baby from going back to the hospital.
We have been advised that Allison's lungs will be fragile until she is 2-years of age. We hope you understand, and we appreciate your help in keeping Allison RSV-free until then.
Best Regards and Warm Wishes!
-Allison's Loving Parents
But, I think we are getting this little girl finally figured out because she is finally gaining weight and we are crossing our fingers that it will continue that way. We are going in weekly for weight checks and she needs to be gaining an ounce a day, so 7oz per visit. The last visit she did exactly that. I keep hoping for a visit where she exceeds expectations - but meeting them will do. If over the next month Alli does not meet her weight requirements, her surgeon wants us to consider fundoplication surgery to help her with her reflux. Another surgery is not something we want to go through right now, so hopefully the meds will keep working for her like they have this week. Its been a rough first month home, but things seem to be getting easier - and its definitely better than her being stuck at the hospital.
Unfortunately we had to make an emergency doctor's appointment for her this morning because she was having bloody stools. Since her bum looked really good to me and there was a fair amount of blood, I decided it was not a simple fissure and that I better get her in. They had me bring a sample in and the doctor has determined that she has a severe milk allergy. The milk fortifier I have been mixing in for Allison is milk based and I have of course been eating dairy products. All her insides are irritated which is where the blood is coming from. They have me now on a strict - no milk of any kind - diet. I got home and looked at our labels...there is some form of milk in almost everything so this is going to be tough. The Doc said it will be. They also switched the fortifier and hopefully she will get better over the next week or so with the change.
Besides that everything is good and we are very glad to have her home. We will be visiting the pediatrician once a week for a while, and we have surgery and cardiology follow ups in the following months. They will be making sure that her diaphragm patch is holding up well and checking to see if the little whole she has in her heart has closed up. As of now it is not causing her any issues, just a simple murmur - and they suspect it is going to close as she grows since it is so small.
Until we have any new news I wont be updating - I will simply be enjoying my perfect little angel and trying to keep up with her high maintenance little schedule. Thank you all for your love and support and for following our story.
The goal the doctors have set for her is to drink and keep down 5mL of Pedia Lite (inhanced water for babies, sort of like Gatorade for us) two times in a day before they give her breast milk. So far she has drank the whole amount once but threw it back up, and half the amount three times and kept that down twice - so she is trying. The worry is that if she can't keep things down she will need another surgery to repair the muscle at the top of the stomach that keeps the food from coming back up. Also, if she can't get the feeding down, she will have to have a surgery to put in a G-tube for feeding. So, we really want to see her meet her feeding goals. The nurses have told me that they will give her lots of time and chances to try feeding before those decisions are made which is good, but knowing there is a chance that more surgery is needed is scary.
Besides the feeding hurdle that Alli girl is being faced with, she is doing really well. All of her vitals look good, and she is still on the IV that gives her the nutrients she needs directly into her blood until they figure out if her tummy is working. The cultures they took to check for infection have not shown any growth so that is good. They will make a decision today about the antibiotics she is on. They may finish them out just in case. She is going over 12 hours a day without pain medications which is great! They have been trying to get her weened off all of that. And she is as cute as can be :) It is has been really nice to be able to hold her all the time now and she continues to look better and better everyday.
I will continue to update with the progress she makes or if any big changes take place. Please continue to keep her in your thoughts as she continues her recovery.
I got to hold her today. Twice! And when Steve came from work he was able to hold her for the first time too. She also went most of the day without any pain medications. What a strong girl! Dad picked out a cute new cap for her to wear with butterflies. I think she likes it very much :) We were told she may be showing signs of possible infection so they started her on some antibiotics and took a blood and urine culture to be on the safe side. Hopefully it is nothing. All in all it was a really great day and a lot of progress was made.
Everyday getting to go in and see that one more thing has left her bedside and see how much better she looks is so encouraging. Each day she opens her eyes more and looks better in color than the day before. We can actually hear her little cry now too. The ventilator went down through her windpipe so she couldn't make any sound before. Who knew it could ever be exciting to hear your baby cry?! We are still waiting to be able to hold her, but it is looking like that day will be here soon. I figure it will only be that much more special since we had to wait.
Hoping we will have more exciting news soon. Until then continue to keep her in your thoughts as she heals.
The hole in her diaphragm turned out to be much larger than they expected, so they had to use a gore-tex patch to do the repair. They also said her esophagus muscle looks very thin, so there is a chance she will need reflux repair in the future. Also, 30% of CDH repairs develop re-herniation and a second repair is required. So basically, there are no guarantees for us... as usual, but she is definitely on track now.
Her vitals stayed perfect through surgery and the hours following. Now we are just waiting and hoping that stays the same for the next few days. After that, it is all up to her. They want to see her lungs start functioning without the ventilator and they want to see her able to eat on her own before she comes home. They are unable to give us a time frame because every baby is different. They also told us that it is likely she will come home on a nasal cannula for oxygen for sometime, but eventually she should be able to live a perfectly normal life without any kind of support.
Please continue to keep her in your thoughts and prayers these next few days. I will update again if we receive any new news or big changes take place.
They got me all checked in and determined that Allison was definitely on her way. Steve and his parents showed up not long after they got me into the room. They had the family wait in the waiting area for a time while they finished up admissions with Steve and I. When they were able to come back in, we all played the waiting game as I did my best to breathe through contractions. My sister-in-law, Jauharallah, was able to come and join the action after she finished up her nursing shift. It is so nice that we have a Sacred Heart staff member in the family. Steve's parents stayed as long as they could before they had to head home.
After several hours I did decide to receive pain management. The doctor came in and placed the epidural - that was a struggle but ended up being worth the relief. After they placed it they also decided to check my cervix. I was up to a 6 - more than half way there! We had a little scare with a blood pressure drop but they gave me a quick shot and placed me on some oxygen and it came right back up.
After I was fully dilated we started in with some mild pushing. At this point my team was Jauharallah, Steve, my mom, and our amazing delivery nurse Tom. We tried several different positions of pushing to get things going. Once baby's head was mostly visible, they called in the team of doctors - an OB to play catch, and several Intensive Infant Care doctors to get Allison set up on her machines first thing.
Steve held one leg, my mom held one leg, and Jauharallah helped with my back. After several good pushes, out she came at 2:57am. She gave us two little cries before they started in with the machines. Steve cut the cord and they whisked her over to a little station they had set up with all of her equipment. Steve and Jauharallah went over to watch as they were getting her all set up. My mom stayed by my side as the doctor finished up with my delivery. They wheeled Allison's station to my bedside for a short moment so that I could take a look at her before they took her up to the Intensive Care Unit. I may be bias, but she is the cutest baby in the world! She was making the sweetest little pouty face as they wheeled her away.
After they got me all stitched up, it was time to move rooms. Out of labor and delivery and into mother-baby recovery. Unfortunately in this case it is only mother recovery. After they got me settled into my new room, Jauharallah and my mom headed home to get some rest after a long night. The NICU (neonatal intensive care unit) doctor came to give us an update on Alli's condition. They were able to get her on the right combination of drugs and oxygen to get her stabilized and we could now go and visit her.
Steve headed up right away while I waited on the nurses approval. When Steve got back he headed straight for the couch and fell asleep. Once the nurse checked all my vitals, she wheeled me up to have a visit with Allison. Her stats were great and she was nice and sedated. It was fun to talk to her and watch her wiggle her sweet little toes, but it was really hard to see that she needed so many tubes, wires, and machines to keep her going.
After my visit I came back to the room to try for some rest. I slept almost two hours when the nurses came in to have me eat some breakfast and again check on my vitals. Steve and I were now awake for the rest of the day. We had several visits from friends and family and paid Allison many visits as well. We finally got some on and off sleep through Thursday night.
Today is now Friday, and Allison's stability (blood oxygen levels, blood pressure, heart rate, etc.) has had its ups and downs but she is still just sleeping away. The surgeons will make some decisions about her surgery after she has a few days of good stability. I will update with any big news we receive.
For now I have a mild case which simply means they will continue to monitor us closely. The extra fluid causes me additional discomfort, but Allison still looks great so they will not be intervening. If my levels continue to rise, they may attempt to drain the excess fluid or prescribe medication depending on the severity because polyhydramnios puts us at risk for preterm labor and other complications. The past few appointments I have been at 20cm which is high but still safe - the maximum before they worry. Today I am at 26cm. I will update on next weeks measurements. The hope is for the levels to stay the same or even decrease.
All other testing they did today was great. Allison is doing a great job growing and moving. Her heart rate is where it belongs and so is mine. No visible signs of preterm labor thus far.
They are saying now that the earliest they would induce, and only if my body is already preparing for birth, would be May 9th (39 weeks gestation). Otherwise we will wait it out for when we are ready on our own. If for some reason she does not want to come out, they are saying they would induce around May 21st (41 weeks gestation) because it gets dangerous for babies to go too far past their due dates. And of course all of this is assuming she does not decide to come earlier on her own - which changes everything. Thus far, things are right on track though, and there are no signs of preterm labor. A lot of ifs-ands-or-buts, so we are trying to just go with the flow and do everything we can in Allison's best interest.
Starting next week we will be doing fetal monitoring every Monday and Thursday. They will do what's called a non-stress-test both days where I have to sit with monitors strapped around my belly for 20-30 minutes. They watch the changes in the babies heart rate while I use a clicker to note each time that I feel her move. One of the monitors strapped around me also watches for contractions and how those affect baby. On Thursdays only, they will also do AFI testing. This is to track the amount of amniotic fluid around the baby and is done through ultrasound. Also on Thursdays, I will have regular visits with my OB. It seems like a lot, but we would do more if we thought it would be helpful in preparing for baby Alli. Hopefully we will have a tour of the birthing center and NICU scheduled soon too, so that we know better what to expect when the time comes. It is creeping up on us really fast!
So, the only bad news we have is that the bills are now starting to file in. Yikes! We are having to fight with the insurance companies already, and she has not even been born yet. It is crazy that a doctor can bill over $300 for just 15 minutes of their time and call it a consultation. Anyway, all is well, and I will update again soon with any new news that comes with the many upcoming appointments.
Our little cherub Allison received a gift package today in memory of Hannah Rose, a cherub that is now an angel. She got a blanket, hat, t-shirt, socks, and more! There were also some things in the package for Steve and I - awareness bracelets, pins, research information and a CDH Baby Book with loads of great cherub information.
CHERUBS is a great organization, and all donations are tax-detuctible so if you have been looking for an organization to donate to, this is the one. We will be donating in honor of Allison as soon as we can!
When he came in he seemed very friendly and caring, but he also got right to the point. I liked this a lot. He explained what he knows about CDH cases and then allowed us to ask questions. It turns out that he has just recently moved to the Spokane area and started work there at Sacred Heart. He has dealt with 100's of CDH babies and is actually a founder of the National CDH Doctor's Study Group. How perfect is it that a Pediatric Surgeon with such an interest in diaphragmatic hernias would start working at Sacred Heart right at the time when I need him?!?
Due to his past experiences he informed me that he would not be comfortable doing the surgery here at Sacred Heart where ECMO technology is not available unless the ultrasound showed two things - High LHR and Liver Down. When CDH is the only problem a baby has (good heart, no chromosomal defects, etc.) which we have discovered to be Allison's case, the severity and, thus, outcome is determined by two factors: 1) liver position, and 2) lung-to-head ratio or LHR. Liver position refers to whether or not any portion of the liver has herniated, or gone up into the chest of the fetus. Fetuses with the liver up in the chest have a more severe form of CDH and a low survival rate. About 75% of all CDH patients have some portion of the liver herniated into the chest. The lung-to-head ratio, or LHR, is a numeric estimate of the size of the fetal lungs, based on measurement of the amount of visible lung. High LHR values are associated with a good outcome. Fetuses on the best end of the spectrum do not have liver herniated into the chest (liver down) and have a high lung-to-head ratio (LHR greater than 1.4) Only about 25% of CDH babies are on the best end of the spectrum (liver down and high LHR), and they all do well after birth. If Allison is one of these 25% then she will not require the assistance of ECMO, and though still requiring major surgery, will do very well and have no long term affects from the CDH.
He, in his short time at Sacred Heart, has already started developing an ECMO program that will likely become available sometime next year---but that is a little too late for us. He said he is not one to take any risks and even if she is likely not to need ECMO he wanted it available to him unless she fell into this specific best end of the CDH spectrum. I told him that I believed she did based on our last appointments, but that I would get the information sent to him after the ultrasound scheduled for right after this meeting. All in all I really liked Dr. Georgeson and am very glad to know that someone with so much experience with CDH will be handling Alli's case.
Next we headed over to Fetal Medicine for the routine check-up. First they checked on me - weight, blood pressure, questions, concerns, etc. Everything is right on track! Next was the ultrasound. I informed the tech that Dr. Georgeson would be needing the information about her liver position and LHR so that she could pay special close attention to those two things. After she finished the Fetal Medicine Doctor came in and said that all of Allison's growth looks great! She is now 2lbs and developing perfectly. He informed me that her liver has not herniated and that she looks to have a large amount of lung space still available. Woo Hoo! He told me that they would get the information over to Georgeson and gave me a slip to schedule my next appointments.
On my way out they handed me an orange glucose drink that I am to drink the next morning and head into a lab to have blood drawn for the usual 25 week pregnancy glucose tolerance test. I don't expect any issues with that since there are no signs of an issue in any of the usual pregnancy screenings. My next appointments are set for the 23rd. They informed me that after that the appointments will be back to every two weeks since I am at risk of developing polyhydramnios (too much amniotic fluid) with a CDH baby. My levels are perfect now but it can change quickly so they want to keep me monitored because it can cause baby to come too early which is very dangerous for CDH babies.
Overall the days appointments went really great once again! No bad news, and another promising set of measurements. Plus, finally some input from someone who has lots of CDH experience.
We quickly headed to our next appointment back in the fetal medicine department where we spent most of the day our first day at Sacred Heart. They did another full work up ultrasound checking all of her growth and development. We got some really fun pictures of her face at this one. We were to see a different perinatalogist this time, but with the same office. She came in to talk to us about the ultrasound right away. All she had for us was good news!
Allison looks to only have her stomach shifted up and no other organs involved in the herniation. The fact that her liver is down, as you will discover in any CDH research you do, is a huge factor in determining that the severity of her case is on the low end. The doctor said she sees plenty of room on the right side for at least her right lung to develop almost fully. The left lung is still questionable, but one lung is much better than none. It is very common that many organs move up into the chest burdening the growth of both lungs when CDH occurs. Because of the herniation, it is also seen that CDH babies have much smaller abdomen measurements than regular babies. This measurement also helps determine the severity of the case. CDH babies with very good chances have abdominal measurements in the 20th percentile. Allison falls in the 30th! The doctor said that she did not expect such great measurements from a CDH baby.
If these measurements stay the same or get better as the pregnancy progresses, Allison will not require the assistance of ECMO (lung bypass that is only available at level IV NICU's). This would mean that we can have the birth at Sacred Heart instead of in Seattle making everything so much easier! She would still require the immediate surgery to push her stomach down and fix the hole in her diaphragm, but she would simply require the assistance of a ventilator to survive rather than the bypass which Sacred Heart can provide.
Last we met the Nurse Practitioner that will now be handling my OB care. Her name is Kim. It was nice to get to work with someone who plans on continuing our care. A familiar face will be nice as time goes on. She works with patients who's pregnancies involve correspondence between fetal medicine and the general hospitalist OB's. She took the time to get to know us and our case and answered lots of our questions. The specialists are actually suggesting a vaginal birth which surprised us, but they say that the process of birth actually prepares baby to fight for life better than with a C-section. They are however also suggesting a planned birth which involves induction so that everyone can be present when she arrives rather than, if she decides, allowing her to come on a Saturday at mid-night when none of the specialists are there.
Overall it was a great day! Lots of promising information. They will continue to monitor Alli and me closely throughout the pregnancy and of course all plans are subject to change if something comes up. We know all about that! Our next set of appointments are in four weeks to do another full check up, and also to visit with the pediatric surgeons to learn more of what to expect with Alli's arrival.