Well, we have known that Allison has had some trouble holding her head up straight, but over time it has gotten more severe. She will be starting some more intensive physical therapy this coming Monday to help her gain the strength to overcome this condition that they call torticollis. Hopefully she does well.
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!
Upswing
Well, all the testing came back normal. It turns out that the swallow study they did was not the one that the GI doctor wanted, so I think they are scheduling us for that again. But Allison seems to be eating better and had really great weight gain last week. Hopefully it was just a fluke month and she will get right back on track with growing. Her therapist has given us exercises to work on too to keep Alli on track with meeting her physical milestones. She was getting behind, but the therapist said she is seeing tons of improvement since we started the workouts. So all in all, it looks like we are back on the upswing with things! We visit the pediatrician again on the 9th. Hopefully Alli's good weight gain will continue and there will be nothing more to discuss :)
Failure to thrive.
Allison has been unable to gain weight since her last exam. The doctors have her scheduled for an upper GI study on Wednesday to check for issues with swallowing, and an Echo on Monday to make sure her heart is doing okay. She had a gastric emptying scan done last week and the results came back normal so her tummy seems to be working properly. We are hoping we get things figured out quickly so we can get this girl eating!
Amazing Girl!
Had our follow up appointment with Dr. G (Alli's Surgeon) today. He looked at her chest x-ray and told me that she is perfect! :) I can hardly believe it, but he said that we no longer need to follow up with him unless we have concerns. Her lungs have properly filled her chest cavity, her heart has perfectly moved into the correct position, and her diaphragm has just the right symmetry. She hardly vomits at all anymore, and is growing great! Her lungs are still fragile so we need to keep her from getting sick, but that is standard pediatrician stuff. So now all she will have are her normal well baby checks with Dr. Prince (local pediatrician), just like any other baby. When she is 1 the cardiologist will see her to make sure the wholes in heart have closed, but other than that we should not have to go all the way to Sacred Heart anymore. Her therapists will continue to visit her once a month to make sure she stays on track with her milestones, but so far that is not at all a concern as Allison has been exceeding expectations. We are so blessed to have such a strong little girl. What an amazing come back! Allison is the most amazing girl!
Breathing Issue Update
We got a call from Allison's pediatrician this morning to come in for a follow up to her ER visit the other night. It turns out that after reviewing the x-rays she has early stages of pneumonia. We are so glad we took her in the night we did, because if the pneumonia had developed further it would be life threatening for Alli. It would have been easy to miss because overall Allison's health seems fine - just the one breathing struggle incident. It is uncertain what caused the pneumonia since she has not been ill, but any irritation to her fragile lungs can trigger it. She is now on an antibiotic which should clear things up fairly quickly, but this just shows us how careful we will need to be with the upcoming flu season.
Quite a Scare! 9/11/11
Allison gave us quite a scare last night. She wasn't able to breathe. For at least 15 minutes she was unresponsive and gasping for air. We rushed her to the ER, it was 11 o'clock at night. Before we arrived the dyspnea subsided and the doctors were not able to find anything wrong. They did a chest x-ray and all. They sent us home after basically 3 hours of waiting around for no information, and she has been totally fine since. We are unsure what happened and are praying it will not happen again. Fortunately she has an appointment with her surgeon on Wednesday. Hopefully he will have some answers for us.
Keeping Alli Safe!
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
Beautiful Miracle
Had a long day at Sacred Heart last week, but all the news was good. Weight gain is good enough over all that the surgeon does not have to do the reflux repair just yet. The hope is that with age the reflux will get better, and they will re-evaluate about doing the surgery around 9 months old, or if weight gets too off track. Until then, meds will help with feeling better, and mom will just have to continue cleaning up after all the spitting up - much better than another surgery! He explained how GERD (gastroesophageal reflux disease) was inevitable in her case because her make-up is just different. She has Gortex in place of muscle for a diaphragm. Normally the muscle helps keep food down. They did another chest xray to check up on that interesting diaphragm, and while the experience was horrific because of the measures they need to take to get a proper xray from a wiggly infant, the results were positive. We go back to see the surgeon again in 2 months. They did a renal-ultrasound since she left the NICU with unexplained hydronephrosis (swollen kidneys) and it has resolved as they expected. Saw the cardiologist, and he did an echo of her heart. There are still two small wholes in her heart. One between the atrial chambers and one between the ventricle chambers. They are not affecting her, and they expect them to close - we go back when she is 1 year old to make sure that they have. She will be weighed again on the 26th, and I am aiming for a whoppin' 10lbs, though 9lbs 13oz is the main goal. We were evaluated at a feeding clinic earlier last week and they upped the calories of her milk and increased some of her medicine doses to help us meet our goals. It is a blessing that Allison is doing so well - she is a beautiful miracle!
Getting Better
Allison had her follow up with the surgeon last week and the xrays still look good. He wants to see her back in another month. At her last weight check she finally gained what they are expecting from her. The first few weeks she was behind because of the allergies and reflux issues. She is now on Prevacid and Zantac and a special medical grade hypoallergenic formula that we have delivered monthly called EleCare. It's $132 a can! Thank goodness the insurance covers it.
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.
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.
At Home
Allison was discharged from the hospital Monday afternoon. We had a wonderful night together. It is so nice to be able to hold her wire free anytime day or night. She is doing decently with her feedings. They told us she must have at least 50mL every 3 hours and that 60mL is best. She takes about 55mL each feed. They have me mixing special formula and vitamins in with her breastmilk to add calories and give her immune system a boost, plus extra iron for her anemia. I have been pumping bottles, mixing bottles, washing bottles or feeding her the bottles basically non-stop since I got home.
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.
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.
Scheduled For Home
As of yesterday, Allison is officially scheduled to come home on Monday! She seems to have picked up a little bug that is causing her a cough and some diarrhea, but as long as she does not get worse then she will be home Monday afternoon. Our discharge is scheduled to start Monday morning, and they will be loading us up with follow up appointments and information for caring for Allison's special needs. We are so excited and can hardly wait. I have spent the day cleaning and setting things up at home to be ready for Allison when she gets here. I will update again after we get settled in.
Minor Set Back
We had a little scare with Allison Tuesday night. She had some bloody stool which is a cause for alarm after all that she has been through. They stopped her feedings and put her back on an IV. They did several x rays and took lots of blood samples and found nothing. They ran a viral scan and did an ultrasound and still came up with nothing. The final say is that she simply had an anal fissure which is very common among breast fed babies since they fill their diapers quite often and abruptly. She is back to eating today, but they are going to watch closely to be certain that her insides are all okay and functioning well. Thank goodness it turned out to be nothing, and hopefully all the poking, prodding, and not allowing her to eat yesterday will not affect the progress she has made with her feeds. Crossing our fingers that she will be coming home very soon!
First Full Feed 5/5/11
To celebrate Cinco de Mayo Allison ate her first full feeding all on her own! Actually she gobbled down 55mL and a full serving for her based on weight is 51mL - Woo Hoo! She has consistently been taking 25-30mL most of the time now so she is almost there. They took out her PIC line (a special kind of IV) earlier this week, so she was able to have her first real bath on Tuesday. She really liked it! She did not at all care for the wipe downs she had been getting up until now but she loved soaking in the warm water and getting rubbed down. Who wouldn't like that? She now weighs 5lbs 15.7oz - almost 6lbs! Hopefully they will start discussing discharge with us soon. Until then, keep Allison in your thoughts and pray that she continues to do as amazingly as she has.
No More Hook Ups
Allison is now officially free from all medicines and gadgets! They took her off of her oxygen, antibiotics, and nutrition IV's yesterday. The only things she still has on her are monitors and her nasal feeding tube for the breast milk she is unable to finish eating herself. It is so nice to be able to see her beautiful face without the oxygen tubing. It is also wonderful not to have to be concerned when you hold her about her special IV line. So truly all that is left before she comes home is to get her taking full feedings on her own. She takes anywhere from 10 to 30mL each time on her own and a full feed for her is 45 to 50mL so she is getting there. Hopefully the day will come soon that she is strong enough to finish her whole serving. With all the breast milk she is getting now she is up to 5lb 12oz! She was 5lb 2oz at birth, so she is growing great. With growth she should gain the strength to eat.
No Restrictions.
She has been nippling her entire 10mL on her own so they have taken off her restriction. So starting today she can take as much milk as she wants. If she is too tired they are still giving her occasional feedings through her nasal tube. When they help her out, they are increasing each feeding by 1mL. She is on a 3 hour schedule 3,6,9,12 around the clock. She was pretty sleepy today and only took 5 or 6 on her own at her feedings, but they topped her off through the tube and she was up to 13mL at her 6pm feeding and tolerating it well.
Feedings Update.
They have bumped her up to 10mL of breast milk every three hours! She is nippling 5 or 6 on her own each time...unless she gets a crummy nurse. Most of the nurses are great, but some are lazy and take advantage of the fact that she has a feeding tube and don't take the time to give her a chance to try eating on her own. I always get frustrated when they do that. Anyway, she is doing really great and we are so happy that she is tolerating the feedings well. She is still only at about a twelfth of what a well baby eats, but she is getting there.
One Step Closer.
The doctors decided to start her on breast milk today. She gets 5mL every 4 hours. She nipples what she can from breast or bottle, then they give her the rest down a nasal feeding tube if she can't finish it. So far she is tolerating it okay, only spitting up small amounts occasionally. Once she is getting enough, they can start weening and eventually take out the IV's she has for nutrients- which is one more machine we want to see gone. One step closer to coming home.
The Next Big Hurdle.
It is looking like Allison's next big hurdle will be figuring out how to suck and swallow while doing her rapid breathing. Imagine trying to drink a glass of milk after you just sprinted a mile. She is now two weeks old so missed out on those initial days, plus had tubes down her throat which may have caused her to develop a slight aversion to things in her mouth. We really take knowing how to eat for granted.
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.
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.
Making Progress 4/19/2011
Today was a big day for Allison. She finally got her first sponge bath and was moved from her raised, heated bed for critical babies into an open crib. She had the suction tube removed from her stomach and has been given the go ahead to start small feedings of PediaLite. If the feedings go well they will start her on breast milk. Because her breathing is so rapid with her one little lung, they are uncertain if she will be able to suck and swallow and believe it is likely she will be put on a feeding tube, but they are trying bottle first. Dr. Georgeson (her surgeon) said that babies with defects as severe as hers usually go home on a feeding tube and oxygen. What she needs now is to grow, so struggling to eat and breathe is not something she can afford to do. She uses a lot of energy breathing so getting enough calories is very important. Eventually she will grow out of needing the extra help.
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.
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.
Off Ventilation 4/17/2011
Allison is breathing all on her own now. She is such a strong girl to do all that work with just one lung! It is so nice to see the machines that surround her slowly dwindling in numbers. First they took away the Nitric Oxide machine which was dilating the blood vessels in her lungs for her. Next to go was a machine that gave her a drug called Dopamine that kept her blood pressure high enough. As her vitals stayed perfect through these changes, they began lowering the amount of help the ventilator gave her. Next to go was the photo therapy light she had for jaundice and a machine that administered a drug for pain called Fentanyl. And today they took her off the ventilator. What she is still hooked up to are a nasal cannula for oxygen, a suction tube for stomach secretions, and an IV of fluids, sugars, and fats for nutrition. She also receives small doses of Morphine for pain as needed.
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.
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.
Surgery 04/12/11
Allison received her repair surgery today. She did very well. The doctors say the next three days are critical in her recovery, but it should be uphill from there. Unfortunately she did have to receive the invasive form of the surgery, so recovery time will be a bit longer and she will have a scar across her lower left chest. But no big deal - she can finally work on getting better now!
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.
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.
Doctor's Update 04/10/11
This morning we received a phone call from Dr. Gretebeck (Allison's NICU doctor) with an update on baby Alli's condition. She says that she is "tickled" with how well Allison is doing considering her condition. She has been colaborating daily with Dr. Georgeson (Allison's Surgeon) and they are planning on having her surgery Tuesday if things continue on this positive path. Tomorrow they are going to try switching her from her high frequency ventilator to a standard ventilator. The standard ventilation is required for the surgery to be preformed, so hopefully she does well with the switch. It was so exciting to hear that they are planning on surgery so soon since just a day or two ago it looked like surgery could be at least another week out. The CDH repair is the next big step to Allison's recovery, so we are glad to hear they believe she is ready.
Allison's Arrival 04/07/2011
After a long day of teaching, my water broke right when I got home around 4pm Wednesday. My mom rushed over from working on the store - luckily only a few blocks from the house - to get me to Sacred Heart ASAP. I called Steve (who was at work and without a car because I was suppose to pick him up when he got off at 5) to let him know what was going on. Fortunately, his dad was available to pick him up and get him rushed over to the hospital as well.
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.
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.
Update 3/31/2011
Fluid levels look to have stabilized at the 26cm after the jump last week. No jump this week, we are still at 26 - Woo Hoo!
Polyhydramnios 3/24/2011
Today's testing showed that I have polyhydramnios due to Alli's condition. The doctors previously mentioned that it is common in CDH cases and have been watching me closely for it. Polyhydramnios is the excessive accumulation of amniotic fluid in the uterus during pregnancy. Amniotic fluid is the fluid that surrounds and protects a baby during pregnancy. Your baby breathes this fluid into its lungs and swallows it. This helps your baby's lungs and digestive system grow strong. Because Alli's lung and digestive system are not what they should be, she is unable to process the fluid properly which leads to the build up.
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.
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.
Check Up 3/16/2011
Another good check up today! She is now 4lb 8oz and still right on track with her growth. We did some of the monitoring today prior to the regular check ups and she was super active. All the numbers are still positive and she is still on the best end of the spectrum for babies with CDH. As we get closer, it is sounding like an induction may not be necessary which would be great. So far we have gone from thinking a cesarean in Seattle, to an induction around 37 weeks at Sacred Heart, to now most likely allowing her to come on her own at Sacred Heart. The news just keeps getting better - hopefully it will continue this way.
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.
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.
Baby Shower 3/5/2011
We had the baby shower on Saturday. It was such a great time! I can't thank those who contributed enough. We had such a long list of things to get before Allison arrived that is down to nearly nothing now. We are lucky to have such great friends and family.
Check Up 2/23/2011
Measurements are still great! She is now 2lbs 12oz with an LHR of 3.6 and liver still down where it belongs. Mommy looks good too - perfect blood sugar and blood pressure levels. One more stretch to a regular check up on the 16th, then we start having appointments twice a week for fetal monitoring and weekly ultrasounds.
Cherubs Donation
A cherub is the nickname given to babies diagnosed with CDH. CHERUBS is also the name of an organization that promotes research, awareness, and support for CDH. There is a link to their website provided to the left.
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!
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!
Meeting the Surgeon 2/2/11
At today's appointment I got to meet the surgeon that will be operating on little Alli when she arrives. Steve could not get work off, so my mom came along with me instead. We checked in at the office after navigating our way through the Sacred Heart Children's Hospital at about 12:30. After a short wait a nurse brought us back to the room where we would consult with the surgeon. She informed us that the wait could get a little long because he was just finishing up with a surgery, but it did not seem too long at all.
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.
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.
Great News 01/05/11
Today we had another set of appointments at Sacred Heart. First we visited the cardiology department where they took a much closer look at her heart to be sure that her condition was not affecting its development. It was a long wait before they took us back. I was expecting some special equipment to be used to view her heart in closer detail, but it was just like the ultrasounds we had already done. The difference was that all of the shots they took were zoomed in on her heart and they did lots of sound recordings of the different valves and things. The doctor came in not long after the tech finished her recordings. She said everything looks great! Everything about Allison's heart looks perfectly normal and healthy except that it is shifted to the right a bit.
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.
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.
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