After Lilly's surgery, she was moved to an isolation room. Test results showed that not only did she have sepsis infection in her blood, she also had Rotavirus which would really put the other babies in ICU at risk. Man, the lengths that princess will go to to get her own room! In fact, on this day visiting Lilly we had to don some protective gear. We were required to wear gloves, face masks, and gowns to visit our little girl. We also had to perform an extensive cleaning ritual both before and after we would go into her room.
Day 3 in ICU (the day after Lilly's surgery) showed a decrease in infection levels, and on this day our spirits really improved. She was still in a lot of pain, so we restricted our visits to talking, singing, and softly stroking our sweet baby's face, head, and hands. I was still caught up in disbelief that this was all happening, but so relieved that she was now on the path of recovery.
In fact, we found that we had a lot to be thankful for on this day. We felt thankful that the knowledge and expertise of the doctors had taken care of a potentially fatal illness at just the right time and our baby was finally starting to improve. We felt thankful that we could once again imagine putting little pink dresses on this beautiful girl, and wonder at how much Cooper would torment his little sister. My brother, Alan, had been sending e-mails out to friends and family updating them on Lilly's condition. Because of this throughout the days we received a constant stream of encouraging e-mails with words of love and support and prayers lifted up for Lilly. We felt especially thankful for all the people who cared for us and who were asking God for healing for our precious baby. Thank you all so much for your kind words. I wish I could adequately put into words how much it meant to us and how much we looked forward to checking Peter's blackberry in these days. We were both truly touched.
Day 5 in the ICU was a day full of wondeful news. Lilly's sweet nurse stopped us in the hallway and told us not to be shocked that something was missing from Lilly's face. Her ventilator was gone! Next came the news that this day would be Moving Day for Lilly. She was going to be headed to the ward for premature babies. And the best news of all for me . . . I would get to hold my baby for the first time since Sunday morning before she was ever transferred (this was a Thursday).
Here are pictures from the ICU:
Wednesday, May 19, 2010
Lilly's Story - Surgery in the ICU
After that heart wrenching night in the hotel, we called the ICU first thing in the morning to get an update on Lilly’s status. Lilly's infection levels had not decreased, and her belly was becoming increasingly red and inflamed. They put her on a ventilator in the night, not because she couldn't breathe on her own but because of the large doses of pain medication they were giving her. They also informed us that the doctors had decided that she would need surgery and that we needed to be there by 8:00 AM. The doctors weren’t sure what they were going to find, but they were concerned that if they waited any longer and her large intestine perforated, it would be fatal. We got dressed and got over to the hospital as quickly as possible.
I will be the first to admit that I looked terrible. A night of crying had left my eyes swollen to small slits. When I walked into the ICU, Lilly’s nurse asked if I was able to get any rest during the night. They prepped Lilly for surgery and then let us sit by her bed in the OP as they waited for the doctors to arrive. I wanted to say a prayer aloud with Peter, but I was doing everything possible not to lose control of my emotions at that moment so I silently prayed to God to protect her and to guide her doctors. I had an enormous lump in my throat, and my heart felt as if it had a 100 lb. weight sitting on it. I was doing OK, and then we had to leave the room and stand outside the door as the anesthesiologist started talking to us about the risks. It wasn’t his talking that got to me, but just not knowing what was going to happen. I was just so scared for my little girl. You would have thought that I wouldn’t have had any tears left, but as I watched them finish their prep, I could hardly see through all my tears. It was a really ugly cry, but I imagine the ICU folks see a lot of that.
Lilly pulled through the surgery like a champ. We are lucky that she is such a chunky little thing and that she went to full term. Apparently her condition is one that is very commonly found in premature babies, and her size and fully developed body give her a huge advantage. The doctors informed us that the surgery was a success. When they saw inside her tiny tummy, they found exactly what they had suspected. A part of her large intestine was inflamed, bright red, and even black in some places. They created a sort of bypass exit route at the end of the small intestine and put in an opening for a colostomy bag (we kindly refer to this as a poop bag, and it is essentially a bag that attaches on the outside of her abdomen and collects the waste). Having this new exit pathway will allow the infected portion of her large intestine to either have a chance to heal or the severely infected part will kind of shrivel up and die away. After 12 weeks, they will go in again and cut out that dead part of the intestine and reconnect the pieces of healthy intestines allowing food to move through the regular pathways again, after which the bag can be removed.
If all goes well, she will be a regular kid who can run, jump, swim, and play with all the other kids. Relief washed over me at the idea of Lilly having the “normal” life that I had hoped. I was also relieved to learn that my efforts of pumping to get breast milk for Lilly were not in vain. She would not get any food for a while after surgery, however she would slowly be started on tiny doses of breast milk a few days after surgery and if things go well, they will increase slowly and eventually she will even be able to nurse.
We saw Lilly after her surgery, but kept our visits that afternoon short to allow our little girl the rest and quiet that she needed to recover from surgery. I have to say here that the hospital that Lilly is at is incredible. The building may be old, but the staff is excellent. I truly believe that Lilly has the best doctors around who are incredibly knowledgeable and skilled. The nursing staff is an amazing combination of skilled and nurturing. Everyone has treated Lilly as if she were their own baby, and they have treated us with patience and kindness, always available to answer questions and listen to our concerns.
I will be the first to admit that I looked terrible. A night of crying had left my eyes swollen to small slits. When I walked into the ICU, Lilly’s nurse asked if I was able to get any rest during the night. They prepped Lilly for surgery and then let us sit by her bed in the OP as they waited for the doctors to arrive. I wanted to say a prayer aloud with Peter, but I was doing everything possible not to lose control of my emotions at that moment so I silently prayed to God to protect her and to guide her doctors. I had an enormous lump in my throat, and my heart felt as if it had a 100 lb. weight sitting on it. I was doing OK, and then we had to leave the room and stand outside the door as the anesthesiologist started talking to us about the risks. It wasn’t his talking that got to me, but just not knowing what was going to happen. I was just so scared for my little girl. You would have thought that I wouldn’t have had any tears left, but as I watched them finish their prep, I could hardly see through all my tears. It was a really ugly cry, but I imagine the ICU folks see a lot of that.
Lilly pulled through the surgery like a champ. We are lucky that she is such a chunky little thing and that she went to full term. Apparently her condition is one that is very commonly found in premature babies, and her size and fully developed body give her a huge advantage. The doctors informed us that the surgery was a success. When they saw inside her tiny tummy, they found exactly what they had suspected. A part of her large intestine was inflamed, bright red, and even black in some places. They created a sort of bypass exit route at the end of the small intestine and put in an opening for a colostomy bag (we kindly refer to this as a poop bag, and it is essentially a bag that attaches on the outside of her abdomen and collects the waste). Having this new exit pathway will allow the infected portion of her large intestine to either have a chance to heal or the severely infected part will kind of shrivel up and die away. After 12 weeks, they will go in again and cut out that dead part of the intestine and reconnect the pieces of healthy intestines allowing food to move through the regular pathways again, after which the bag can be removed.
If all goes well, she will be a regular kid who can run, jump, swim, and play with all the other kids. Relief washed over me at the idea of Lilly having the “normal” life that I had hoped. I was also relieved to learn that my efforts of pumping to get breast milk for Lilly were not in vain. She would not get any food for a while after surgery, however she would slowly be started on tiny doses of breast milk a few days after surgery and if things go well, they will increase slowly and eventually she will even be able to nurse.
We saw Lilly after her surgery, but kept our visits that afternoon short to allow our little girl the rest and quiet that she needed to recover from surgery. I have to say here that the hospital that Lilly is at is incredible. The building may be old, but the staff is excellent. I truly believe that Lilly has the best doctors around who are incredibly knowledgeable and skilled. The nursing staff is an amazing combination of skilled and nurturing. Everyone has treated Lilly as if she were their own baby, and they have treated us with patience and kindness, always available to answer questions and listen to our concerns.
Sunday, May 16, 2010
Lilly's Story - Escalation from Worried to Terrified
Once the doctor decided to move Lilly to another hospital, everyone started moving fast. A special ambulance for babies was called to transport Lilly to the Schwabing Klinik in Munich. Peter and I went to pack all of our belongings. I had to have a final exam from the doctor and get release to leave the hospital early. All this time I am keeping myself calm and optimistic. I kept telling myself it was something small and it would be taken care of soon. It wasn’t until we went to say good-bye to Lilly before they loaded her into the ambulance that my resolve to be relaxed started crumbling to the ground. The tears starting flooding and ironically enough, the only thing I had in my hands to catch them was a tiny pair of baby socks.
Here is a picture of the ambulance workers and all their gear coming to take Lilly away. Sorry they are a bit blurry, all we had was Peter's blackberry at the moment.
Here is a picture of the ambulance workers and all their gear coming to take Lilly away. Sorry they are a bit blurry, all we had was Peter's blackberry at the moment.
We drove to the hospital, which for me was such a long drive filled with worry and disbelief that this was all happening. When we arrived, Lilly was put onto the premie ward, and the doctors began their examination. They asked us to leave the room in order to get a stool sample from Lilly, and shortly thereafter a doctor came into the waiting room to inform us that they were concerned by blood in her stool and would be transferring her immediately to the intensive care unit. They also found sepsis which is a very serious infection in her blood. The whole time I kept wondering how everything had gone so wrong so quickly. This was supposed to be a wonderful and happy time for us.
In intensive care, the doctors let us know that they were going to have to take some ultrasounds to see what might be going on. The ultrasounds showed some air bubbles in Lilly’s intestines, but nothing really conclusive. They suspected that Lilly might have a perforation in some part of her intestines, or that perforation might be about to occur. They planned to watch her that evening and do more ultrasounds to see if the bubbles moved outside of the intestines. If it was as they thought, she would have to undergo surgery.
We hadn’t eaten anything since early that morning, so we left to grab a bite to eat, and then returned to the hospital again. I knew that I would need access to a breast pump, but it seemed crazy to think about having to get up and come to the hospital to pump in the middle of the night. Peter got one of the doctors to write a prescription for a rental pump and he got on the phone and started calling pharmacies in the area to find a pharmacy who was not only open after hours, but that also had a pump on hand. I can’t even begin to explain all the ways that Peter has amazed me in this whole event, but his determination to find a pump for me was just the start of many incredible things that Peter would do for me over the course of the next days. I have never seen a person respond under pressure the way my wonderful husband does.
That night in the hotel was an inner battle for me. A battle of emotions, a battle of feelings and talks with God, a battle to stay optimistic, and a battle to take care of all the postpartum needs that a woman has to do for her body after having a baby. Having to wake up a few times in the night to pump was frustrating. I didn’t have milk yet (the pumping was required to get my body to produce milk as if I had a nursing baby), and the thought of putting my body through all this in the uncertainty of whether Lilly would ever need it was hurtful. I had an aunt coming in less than a week with suitcases of pink dresses and onesies and a pink and brown diaper bag with Lilly’s initials embroidered on it. What if we never needed those things? What if my aunt was coming over for a funeral rather than a celebration? I weeped and sobbed and prayed and begged God to help Lilly and to help the doctors.
In the wee hours of the morning, I talked with Peter about God’s will. When bad things happen to people, I typically come to two possible conclusions. Either God is punishing them or God has chosen them for something special. I don’t think that God is punishing us. Peter and I are good people. But I felt anger at this moment that it seems as if there are so many dishonest and terrible people in this world who have everything: wealth, happiness, and a normal family with healthy children. What had we done to deserve this? And the other alternative would be that He has chosen us. And quite frankly, at this moment I didn’t want to be chosen. I know it is wrong to say, but it is how I felt. God, this hurts too much. Please don’t use me in this way. But it isn’t our choice and it isn’t our will, is it? God’s plans often don’t feel good.
Here are some pictures from the ICU that first day (Sunday). They ended up putting Lilly on a ventilator, not because she couldn't breathe on her own, but as a precaution because she was receiving so much pain medication.
More about Lilly's stay in the ICU coming soon.
Thursday, May 13, 2010
Lilly's Story - The First Signs of Trouble
As a new mom with Cooper, I recall stressing over every incident, feeding, diaper, and small details. I had convinced myself that this time I would be relaxed and calm, and just let Lilly set her own schedule of eating/pooping/sleeping, etc. I was doing great, and so was she. However, the first evening (Friday evening), Lilly's blood sugar levels were very low. The doctors and nurses started off giving her a few bottles of a glucose mixture between nursing sessions. After several tries, her blood sugar still wouldn't come up, so during the night they took her and put in an IV infusion. I didn't get to see her at all Friday evening. But the nurses and doctor assured me that this can be common with bigger babies and that everything was fine. On Saturday morning, they continued with the infusion and bottles. And we were happy when her glucose levels came up and the IV was removed. She got her last bottle of glucose mixture at about 3:00 that afternoon and I thought we would be all set to return to nursing only.
About the time that Lilly had her last bottle, she started having some spit up. I am a veteran when it comes to spit up considering all we went through with Cooper’s reflux as a newborn so I was not at all alarmed. At about 7 in the evening, I was surprised that she still was not ready to nurse (remember her last feeding was at 3 in the afternoon). I asked a nurse about it and she said that Lilly had just had a lot of bottles to regulate her blood sugar levels plus the IV in addition and that she must have just been full to the brim. She advised me to wait another 1-2 hours and try again. Two hours later (9 in the evening) I tried again, but Lilly had been sleeping the whole time and showed no interest in waking to eat.
I maintained my “no stress” demeanor even though I was concerned. Babies just don’t go that long without eating. At 10 I tried again with no luck. Finally at midnight, I started to really worry. I spoke with the night nurse who was so nice and nurturing. Together we brought Lilly out to the nurse’s station and tried a few different tactics to wake her, including sticking her heels to test her blood sugar levels. We would be able to get Lilly to open her eyes and fuss a little, but once I would get her into nursing position she would be back asleep.
Then the nurse suggested something that no nurse in the US would ever be allowed to suggest. She suggested that I lay in bed with Lilly tucked in beside me and try to nurse and sleep. The nurse came into the room with me, set up pillows all around us, put up the guard rails on the bed and tucked the covers around us. She and I both felt that Lilly would have to get hungry soon and eat. I felt cozy with my sweet baby next to me and settled in feeling her warmth against me. I slept on and off like this with Lilly for the next couple of hours.
At 2:30 in the morning, I was getting uncomfortable from laying in the same position and more worried. I called the nurse again, and yet again we tried different tactics to wake Lilly up. She would cry a little and then always go right back to sleep. The nurse then helped tuck Lilly and I into bed again, this time skin to skin with her on my chest and pillows propped all around us. I later told Peter that it felt so nice to be tucked in and I actually got the best sleep that I had had up to that point with Lilly’s soft, warm little body and gentle breathing on my chest. It was a cherished time for me with my sweet girl.
4:30 – Lilly cried and fussed a little, but still wouldn’t eat.
5:10 – Still not.
I tried every hour until the pediatric doctor came in for rounds around 9:00 AM. We let him know that we were really concerned. He checked Lilly out and gave her a thorough physical exam. He noted that her belly was firm and she was still having spit up. And even after all this time without food, she was still having several wet and poopy diapers, all indicators that she has food in her tummy. The doctor wanted to keep a close watch on her until noon. Just after he left the room, Peter and I went to change her diaper. We noticed some blood in her stool which we had on a wipe. Peter took the wipe to the nurse, she took the wipe to the doctor, and the doctor took another look at Lilly. At that point he made the decision to send her to a pediatric hospital in Munich.
More to come in the next part of Lilly's story. I will try to update tomorrow with pictures of her transfer to ICU.
About the time that Lilly had her last bottle, she started having some spit up. I am a veteran when it comes to spit up considering all we went through with Cooper’s reflux as a newborn so I was not at all alarmed. At about 7 in the evening, I was surprised that she still was not ready to nurse (remember her last feeding was at 3 in the afternoon). I asked a nurse about it and she said that Lilly had just had a lot of bottles to regulate her blood sugar levels plus the IV in addition and that she must have just been full to the brim. She advised me to wait another 1-2 hours and try again. Two hours later (9 in the evening) I tried again, but Lilly had been sleeping the whole time and showed no interest in waking to eat.
I maintained my “no stress” demeanor even though I was concerned. Babies just don’t go that long without eating. At 10 I tried again with no luck. Finally at midnight, I started to really worry. I spoke with the night nurse who was so nice and nurturing. Together we brought Lilly out to the nurse’s station and tried a few different tactics to wake her, including sticking her heels to test her blood sugar levels. We would be able to get Lilly to open her eyes and fuss a little, but once I would get her into nursing position she would be back asleep.
Then the nurse suggested something that no nurse in the US would ever be allowed to suggest. She suggested that I lay in bed with Lilly tucked in beside me and try to nurse and sleep. The nurse came into the room with me, set up pillows all around us, put up the guard rails on the bed and tucked the covers around us. She and I both felt that Lilly would have to get hungry soon and eat. I felt cozy with my sweet baby next to me and settled in feeling her warmth against me. I slept on and off like this with Lilly for the next couple of hours.
At 2:30 in the morning, I was getting uncomfortable from laying in the same position and more worried. I called the nurse again, and yet again we tried different tactics to wake Lilly up. She would cry a little and then always go right back to sleep. The nurse then helped tuck Lilly and I into bed again, this time skin to skin with her on my chest and pillows propped all around us. I later told Peter that it felt so nice to be tucked in and I actually got the best sleep that I had had up to that point with Lilly’s soft, warm little body and gentle breathing on my chest. It was a cherished time for me with my sweet girl.
4:30 – Lilly cried and fussed a little, but still wouldn’t eat.
5:10 – Still not.
I tried every hour until the pediatric doctor came in for rounds around 9:00 AM. We let him know that we were really concerned. He checked Lilly out and gave her a thorough physical exam. He noted that her belly was firm and she was still having spit up. And even after all this time without food, she was still having several wet and poopy diapers, all indicators that she has food in her tummy. The doctor wanted to keep a close watch on her until noon. Just after he left the room, Peter and I went to change her diaper. We noticed some blood in her stool which we had on a wipe. Peter took the wipe to the nurse, she took the wipe to the doctor, and the doctor took another look at Lilly. At that point he made the decision to send her to a pediatric hospital in Munich.
More to come in the next part of Lilly's story. I will try to update tomorrow with pictures of her transfer to ICU.
Lilly's Story - A Great Start
Lillian Kate Claus was born on Friday, May 7th at 3:25 in the afternoon. The doctors and midwife in the delivery were really great and everything went quickly and smoothly.
To me, Lilly does not look like her brother, Cooper. She has a different chin and nose. She has more hair than Cooper did and it is a medium to dark brown. Although Cooper lost all of his hair, so we'll see what Lilly's hair does. She came out with long fingernails and I promised her that we would both get a manicure as soon as possible. She has long, skinny fingers and toes. She was the same length as Cooper at 53 cm, so she will likely be tall as well. However, unlike her brother, this girl came out with some meat on her bones! She weighed in at a whopping 8 lbs. 12 oz (4010g), a full pound heavier than her brother's birth weight.
I had known throughout the pregnancy that we were having a girl, but Peter wanted a surprise. So, I did my absolute best to keep it a secret all the while collecting little pink things and hiding them. When Lilly came out, the doctor took a quick glance and proclaimed that we had ourselves a baby BOY! I was shocked until the midwife corrected him and confirmed that we had a perfect little girl.
From the start, she proved to be a pro at sucking and did very well nursing immediately. Being in a small hospital in the country, Peter and I had a lot of quiet time to hold and bond with our special girl in a family room where Peter had a bed to sleep and stay the nights with us. We got visits from Peter's parents, Peter's sister (Christina), and Cooper. I was shocked when Cooper walked into my hospital room for the first time. After holding and looking at a tiny little Lilly, I was astonished at how big my "little" boy suddenly had become to me. He looks so tall and grown up to me now. Cooper took little interest in Lilly, but was very sweet at one point wanting to put the tiny pink pacifier in her mouth. Other than that, he was more interested in jumping up and down on the bed, sticking his banana in a little cubby cut out of the wall, climbing on mommy and pressing the nurse call button, which he did several times when we weren't paying close enough attention!
From the start, she proved to be a pro at sucking and did very well nursing immediately. Being in a small hospital in the country, Peter and I had a lot of quiet time to hold and bond with our special girl in a family room where Peter had a bed to sleep and stay the nights with us. We got visits from Peter's parents, Peter's sister (Christina), and Cooper. I was shocked when Cooper walked into my hospital room for the first time. After holding and looking at a tiny little Lilly, I was astonished at how big my "little" boy suddenly had become to me. He looks so tall and grown up to me now. Cooper took little interest in Lilly, but was very sweet at one point wanting to put the tiny pink pacifier in her mouth. Other than that, he was more interested in jumping up and down on the bed, sticking his banana in a little cubby cut out of the wall, climbing on mommy and pressing the nurse call button, which he did several times when we weren't paying close enough attention!
Here are some pictures of our first day with Lilly. Stay tuned for more posts on the big adventures of our little girl.
Monday, May 3, 2010
The Belly - 3 Days Before Due Date
Here are pictures that we took this evening. I am now at 39 weeks and 4 days. Only 3 days till the baby's official due date. I am starting to worry that this baby isn't going to budge before due date. This is a good comparison to the pics from 32 weeks since I am wearing the same outfit.
Are we sure there's only one baby in there?
This is my better side.
Are we sure there's only one baby in there?
This is my better side.
Saturday, May 1, 2010
Little Boys Make Big Messes
Yesterday Cooper and I had quite a messy experience. After a busy morning of running errands, I laid Cooper down for his afternoon nap. As usual, I had to go up and down the stairs several times making him get back into bed. My last attempt proved to be quite a shock to me. Upon walking in I could instantly smell a poopy diaper. Unfortunately for me, the diaper was no longer on Cooper. He had taken his poopy diaper off, had poopy smeared all over his hands and arms and was as jolly as could be sitting in his upholstered rocking chair and rocking.
I didn't get pictures, I was too busy screaming. Cooper and I went directly down to the bathtub to get him cleaned up and I cleaned up everything I could in his room. Of course, I had to call Peter to tell him what "his" son had done. These things only seem to happen when daddies are away!
I didn't get pictures, I was too busy screaming. Cooper and I went directly down to the bathtub to get him cleaned up and I cleaned up everything I could in his room. Of course, I had to call Peter to tell him what "his" son had done. These things only seem to happen when daddies are away!
Weekend Waiting
Well, the full moon had no impact on this baby. We are still waiting around this weekend for the little pooper to come out. As we wait we are trying to get as many tasks done as possible, knowing that things are easier to accomplish without a newborn. Today we worked in the yard a bit, pulling weeds, cutting grass, and planting flowers. I got my window boxes planted yesterday in my nesting state. As you can see Cooper enjoyed working in the garden as well.
What's In Your Pantry?
I am starting to find the condition of our pantry quite humorous. We used to be a typical family with yummy items tucked away in the pantry. Staples such as Cheerios (here they are called Honey Loops), Corn Flakes, Special K cereal, Chocolate, Brownie Mixes, Flour, Pasta, Cans of Chicken Noodle Soup, Sauce mixes, Candy, Crackers, and Cookies among many other things have always had a constant, comforting presence in our house.
Now our pantry contains items that I never new existed and never imagined that I would be buying and eating. So, here are a some of the things that have started to take over our pantry:
Now our pantry contains items that I never new existed and never imagined that I would be buying and eating. So, here are a some of the things that have started to take over our pantry:
- Potato Flour/Starch
- Corn Flour
- Rice Flour
- Tapioca Flour
- Agave Nectar
- Flaxseed Meal
- GFCF bread
- Rice pasta
- Corn Pasta
- Guar Gum
- Almond Milk
- Soy Milk
- Coconut Milk
- Tamari
- Soy Vanilla Pudding
- Rice Cakes and Corn Cakes
- GFCF Vegetable and Chicken Broths
In addition to these weird things, we are buying more fresh fruit and produce than ever. Sure it all sounds healthy and you would think that we would all be losing weight, but not yet. Believe it or not, I can still find the most fattening recipes using this stuff. This morning we had GFCF donuts. Yes, I made them from scratch! But I hope that over time we (Peter and I) will lose some weight with this new diet. Unfortunately, these new grocery items don't come cheap. It's more expensive to feed our family this way.
I am starting a new section on my blog for GFCF recipes. I will be posting recipes that we test in our house and those that get the stamp of approval from Cooper. Many of these will be recipes that even those who don't follow a GFCF diet can make and enjoy. You will be able to find these recipes by clicking on the tab at the top of this page underneath the main picture. If you have any recipes that you can add, please send them to me. I promise to give you full credit. I am really bad about vegetables. I have never been a big vegetable eater and just don't have a clue how to cook them. I would love your suggestions. My hope is that this will be a help to other families out there struggling to find good things that their kids can eat, whether autistic or not.
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