Wearing Clothes!!

Jack is doing better. He is up to 2 pounds, 12 ounces. He is still on nasal O2, no vent. Tierney went to see him today and he was wearing clothes! So cute.

He had another head ultrasound today but they didn't have the results yet. He is eating 24 cc a feed. He is getting breast milk ( thanks Tierney!) and it is being supplemented with a calorie booster.

I am going there Thursday. I can't wait to see him and I am hoping that I can hold him. He is over a month old now and he has never been held and cuddled.

Happy new year to everyone!!!

Doing Better

Jack extubated himself yesterday. He grabbed the tube and pulled it out. They had orders to leave it out if he did that. He is on the nasal o2. Yesterday he was doing pretty poorly with that and they said it was likely he would be back on the vent soon.

When I called today they said he started to do better and he is still only on the nasal O2. He is still having some oxygen saturation drops and heart rate drops but considerably less than yesterday. They are going to leave him on just the nasal O2 for now but there is a possibility that may change.

He continues to do well with his feeds and has gained another ounce. He is now 2 pounds, 10 ounces.

Julianna and I had a nice Christmas but she is sick. She had a high fever on Christmas Eve and then again last night. We went to PM Pediatrics last night. They cultured her throat and checked her ears, etc. They did not find anything and said it was likely that it is some type of virus.

We went to my sister Alice Anne's house and my Dad and Betty were also there. We had a nice time with everyone. Santa brought Julianna a ton of gifts. Her favorite is the Barbie Dream House.  I am thrilled that he finally brought that. I always wanted it when I was a kid. LOL.

I hope everyone had a great Christmas!!!

Back On The Ventilator.

Jack is back on the ventilator. He had two prolonged periods of apnea that lead to his heart rate slowing down quite a bit. After the second time they re-intubated him and put him back on the ventilator. He is doing a lot better on the vent and they said his color got a lot better.

They said I should not get too upset about it because it is pretty common for preemies as early as Jack. They also said they are going to try to get him off the vent again soon. They had moved him into the step down unit when they took him off the vent. They are going to keep him there even though he is back on it.

They did tell me this would be a series of ups and downs. Uggghh.

Off The Ventilator!!!

Great news!! Jack is off the ventilator!!! He is on nasal O2 at 25% and he has had no periods of apnea. He is doing great! He is also up to 20cc per feed.

Thanks for all the prayers. They are working!

Beefing up!

Jack has gained some weight. He is currently 2 pounds, 9 ounces. So he is up 3 ounces from his birth weight. He did lose weight at first so this is not too bad.

He is eating 18.5cc at each feed. He is eating so well that they removed his PICC line. He is now getting all nutrition through the oral gastric tube.

They had to raise his oxygen concentration on the ventilator to 25%. That is still pretty good. They did tell me to expect that it will go up and down.They have his breaths per minute at 28. He does over ride the vent sometimes and breathe on his own.

He is doing pretty good. He still has a long way to go. Thanks for all the thoughts, prayers and good thoughts!

Pictures

Jack is doing better all the time. He still has issues, but I am hoping he turned a corner. His ventilator setting is at 22% for oxygen. He is now up to 15cc per feed. He is doing so much better than he was last week. I am hoping he stays on his current path. Yayyy Jack!!

 

Julianna and I went to see the Radio City Christmas show today. We also went to Rockefeller Center to see the big tree and then to Macy's to see Santa. On the train on the way home we saw a huge rainbow. I think that is a sign of good things to come!

 

 

 

 

 

Jack in his Christmas outfit. I bought the Santa hat at Petco. It is for a Chiuaua.

                                                             Jack holding my finger.

                                                                Jack snoozing.

                                                       Julianna and me at the big tree!!

                                                                   Julianna, big tree.

                                                          Julianna with Santa at Macy's.

Jack is Doing Great!

Jack is doing great! It was really nice to see him. He was taken off his oscillator this morning and put back on a regular vent. His blood gases were really good so they thought he could handle it. He is only on 25% oxygen. That is great because regular room air is only 21% oxygen. He is off the photo therapy lights but he does have bronze baby syndrome. That should resolve on its own over time.

He is eating 11cc over an hour and a half through the gastric tube. He makes sucking motions all the time and sucks on his endotracheal tube. They are still keeping him sedated. When his morphine and ativan wear off he moves around quite a bit. He can push his whole body up on his feet. That is pretty good especially since he has a PICC line on one foot.

Tierney is still pumping for him and he loves that milk. I got to have lunch with Tierney and that was very nice.

I have to leave very early tomorrow. My plane takes off at 6am. I can go see him anytime so I will see him just before I have to leave.

I took a bunch of pictures and I will post them when I get home.

What Is Happening in this World?

I am going to see baby Jack today. I dropped Julianna off at daycare. I won't see her until Monday afternoon. That makes me sad, but now with the news of this horrible elementary school shooting in Connecticut I just want to run over to her school and hug the stuffing out of her.

A person who lost a spouse is called a widow. A child who lost a parent is called an orphan. There is no word for a parent who lost a child, because there are no words.

Eating Like A Champion

Jack's feeds are up to 5cc every three hours and he is tolerating them! I am so proud of him.

The nurse said they had to raise his oxygen settings but he is still only at 35% oxygen, via the oscillator, so that is pretty good.

He is jaundiced again so he is back under the photo therapy lights. They said that is pretty routine and most small premature babies will go under them a number of times before they are discharged.

He is somewhat swollen. He is on lasix ( a diuretic) to try to reduce that swelling. He is also on steroids to try to keep his lungs from swelling.

All in all he is having a good day. I will get to see him late tomorrow night. I can't wait!

Thanks everyone for all the prayers, good wishes, assistance with child care and everything else. And thanks Tierney for visiting Jack and giving him love!!!!

Super Great Eater!

Jack is really eating a lot. They raised his feeds to 3cc a time. It goes over a few hours but before they start a new feed they aspirate to see if there is any residual. He has had hardly any residual. That is great. I think eating is going to make a big difference for Jack.

His x-ray was good. His blood gas was good. They changed his position and are elevating him a bit because they are worried he will swell because he has been in the same position for so long. He is still getting morphine because they do not want him to get agitated or uncomfortable. His oscillator settings are staying the same.

I am watching the 12-12-12 concert. I was going to go to it but there is too much going on here. I would love to have gone but seeing it on tv is good too. Bruce Springsteen is on right now, my favorite, so I must go check it out!!

He Is Eating!!!

"Out of difficulties grow miracles"  ~  Jean De La Breyere

I called tonight and the nurse told me that Jack tolerated three feedings!!! I am over the moon about this!! They were each 1.5 cc and given to him over a 2 hour period, but he tolerated it.  I really feel that this could make all the difference for Jack. I think if he can just eat and put some weight on he will get stronger and do well.

He got another blood transfusion today. His ventilator settings stayed the same. He will have an x-ray of his chest and abdomen tomorrow. (They only need one film for his tiny body.)

I watched my Dad tonight and it was a tough evening. He was really difficult and Julianna stayed awake until about 11 pm. It should be interesting getting her up tomorrow. They have some sedatives but they don't do anything. I get through it by mentally amusing myself. Thinking things like, should I crush his pill and have him snort it? Or, can we simply ask the doctor for whatever the Wild Kingdom guy (Jim) used in the dart gun that could stop a charging rhino in seconds?

Any disruption in his regular routine makes him really difficult. I want to help so Betty can get a bit of a break but I must admit that it is becoming super hard. First I had to take him with us to Julianna's violin lesson. He was super good there. I picked up food and we went back to his house. It went down hill from there .He was trying to hide my sneakers, wearing my jacket, peed on the bathroom floor (not missed, directly),  tried to carry Julianna and she was yelling that he was squeezing her, put three pairs of pants on (at the same time) when I was trying to get him to put pajamas on, tried to open presents Betty wrapped to send out, threw out mail and on and on. Most Alzheimer's patients get worse at night and he is no exception.

It was stressful with my Dad but when I got home I called about Jack and now I am super happy. I sure hope he decides eating is good and he keeps it up. Way to go Jack!

Raised the Vent Settings

I called about Jack. They said his blood gas was not good and they had to raise the ventilator settings. The nurse said he is doing better with the higher settings. They were getting ready to do another blood gas to see how that was.

They weighed him yesterday and he lost another ounce. They are going to try a feed some time today.

Tierney visited him yesterday and was able to bring him more milk. I sure hope he gets to eat some of that milk soon. If he would only get the feeding down I think it would make a world of difference.

I sure hope to get some positive news soon. They did say he was resting comfortably. Time to rally baby Jack!!

Back Under the Lights, More Blood

I called about Jack about 3am Arkansas time because I was awake and of course I worry. The nurse said his bilirubin was getting a little high and he looks a little jaundiced so he will be going under the photo therapy lights again. His blood counts are also a little low so he will be getting another blood transfusion. She said he was not showing any symptoms of that and all his vitals are stable.

She also gave him a bath and changed his linens. She was not able to weigh him because he will not tolerate being off the ventilator for very long.

She said he was resting comfortably and is having a good night.

He likes the oscillator, but not food

Jack is doing well on the oscillator. His O2 saturation and vitals have been great since he has been on it. They are not sure how long he will be on it but I hope he is on it long enough for his lungs to heal. They can't give me any real idea because each baby is different.

His last feed was a failure. A few hours after the feed they aspirated bile tinged residual. She didn't tell me how much but it was enough that they are stopping his feeds again. I asked her if this was normal and she said it was not normal but it was expected. In other words, this is common for babies as early as Jack. She said some take awhile to start feeding. She said his belly was soft and that is good. He will try again in a day or so. I don't know if he is losing weight because of all of this because they only weigh him on Mondays and Thursdays. They will let me know tomorrow what his current weight is.

It is not known why, but white male babies are known to do poorly in the NICU. I remember them telling me that when Julianna was in there. My cousin Kaitlyn told me they said that about her son too. "Wimpy white boy" syndrome. I told Tierney that and she said she is hoping Jack has some black in him to help him fight. I sure hope so too!

Up and Down

One step up, two steps back.


Jack is gaining in some areas and losing in others. He had an x-ray that showed that his lungs are swelling. That is a bad sign and because of that they took him off the regular ventilator and put him on an oscillator or high frequency ventilator. The oscillator gives him and extremely high amount of breaths per minute (over 600)  but it doesn't have the force that the regular ventilator has. They are worried that his lungs are starting to get damaged from the regular ventilator.

When I was speaking to the nurse I said he was breathing on his own at first, then was on the ventilator. A few days ago they told me he had the lowest settings possible for the ventilator, which was a great sign. Now he was doing so poorly on it that he had to be put on the oscillator. I told her it seems like he was going backwards. She said he is. She said this back and forth is very common in babies born at his gestational age. Many of them do this for a very long time.

On a brighter note, they gave Jack 1cc of Alimentum at 10 am today. They aspirated later and they did not get any back. So he tolerated 1 cc and that is awesome!!! They will keep trying it and hopefully he keeps making progress there.

Julianna, Grandma, Pop-Pop and I all went to breakfast with Santa today. She had a great time. I had planned a lot of things for us to do around Christmas this year because I knew it would be hard to do with the baby next year. I am going to try to still do as many of the things we can when I am in NY. Next week I will be in Arkansas to see Jack. I will be thrilled to see him.

Resting



Tierney went to visit Jack tonight and she sent me this picture. Jack is on his belly. The large hand on him is called a Zaky. It is weighted with beans like a bean bag. It is designed to provide comfort to preemie babies and it simulates a hand holding them.He had a hard day so I am glad he is cozy now.

 

Feed Are Not Going Well

They tried to feed Jack three times over the last 24 hours and each time it did not go well. They gave him 1.5cc of breast milk. A few hours later they aspirated about half of it back out. They tried again on an empty belly and they got about 2/3 back. Then they tried again and got 1.2cc back. They gave him pedialyte and stopped feeding him.

They are measuring his belly to make sure it is not swelling. They are going to xray it in the morning. They have him getting nothing through the stomach for at least 24 hours. They have increased his intravenous rate to try to make up for some of the difference.

The nurse was very encouraging. She said this does not mean he has NEC but they have to make sure. She said his GI system is not ready for feeds but it could just be that he isn't developed enough yet. She said this is very common in babies this age.

I was really hoping it would go well and of course this is a big blow. It is so hard to be here when he is so sick and needy way down there in Arkansas. I am going on 12/14. I wish I could be there now. I do know he is in good hands but the worrying is agonizing.

I was off from work today but I watched my Dad so Betty could get out. It is hard to watch him too because his deterioration is so profound.

On a lighter note, Julianna is a little love. She is super excited about Christmas and Santa and her happiness fills my heart with joy.

Thanks everyone for all the prayers. Please keep them coming.

No Bleed!!

Jack had his head ultrasound yesterday and he has no evidence of any brain bleed. They are going to repeat it on 12/31. I am so thrilled about this! Thanks for all the prayers!! They are working.

Tierney vistited Jack last night. She brought him more milk and she sent me some pictures. He is still on the ventilator. He was lying on his belly. He got the PICC line and it is in his leg.

He was weighed and his weight went down to 2 lbs 3 oz. He is going to start feeds today. The iv lipids and hyperalimentation he has been getting are only to try to maintain his weight. He will not gain weight from that. When they feed him they will put a few cc's of milk down his oral gastric (OG) tube. A few hours later they will aspirate from the tube to make sure it is digested. If it is they will continue with the feeds. If not, they will wait awhile. This is all the prevent necrotizing enterocolitis (NEC). NEC is a huge killer of preemies and staying away from this disease is Jack's next big hurdle to jump.

Question: What is Necrotizing Enterocolitis (NEC)?


Answer: Necrotizing enterocolitis, usually called NEC, is a condition where the intestines become infected and can begin to die. The disease usually affects premature babies, although term babies may also get NEC. Necrotizing enterocolitis is a serious condition that may require surgery, and has a high morbidity and mortality rate.

What Happens With Necrotizing Enterocolitis?

The inner lining of the intestines contains millions of bacteria. Usually, these bacteria (called the normal flora) are harmless and are part of the digestive process. In NEC, though, the bacteria begin to attack the intestinal wall. If the disease is not treated promptly, the intestinal wall will weaken and may die. Eventually, a hole can form through the bowel wall (a perforation), spilling its contents into the abdominal cavity. Bowel perforation is a medical emergency that requires immediate surgery and has a high mortality rate.


What Causes Necrotizing Enterocolitis?

Prematurity is the biggest risk factor, because preemies are born with immature intestines. Beyond that, doctors aren’t exactly sure what causes NEC. They know that the vast majority of infants who get NEC have begun milk feedings, but they also know that delaying feedings does not reduce the incidence of the disorder. Reduced blood flow to the intestines may also play a factor in the development of necrotizing enterocolitis, and babies who have heart conditions such as a patent ductus arteriosis (PDA) are at higher risk for developing NEC.

Symptoms of Necrotizing Enterocolitis

In the early stages of NEC, the infection causes the movement of food and air through the intestines to slow down or stop. This causes the baby’s belly to look bloated or distended. After feedings, food will be left in the baby’s stomach as gastric residuals. Eventually, enough food and air becomes trapped in the intestines that bowel loops will be visible on the baby’s belly. The belly will become painful and discolored, and the baby may begin vomiting bile or having bile-tinged residuals. Blood may be present in the baby’s stools, and the baby may begin to be bloated all over and have less urine output. The baby may also have a hard time regulating his temperature and may begin to have spells of apnea or bradycardia. Eventually, the bowel will rupture, causing widespread infection and respiratory distress.

Treating Necrotizing Enterocolitis

In the early stages, treatments for NEC include stopping milk feedings to let the bowel rest, giving antibiotics to treat infection, and removing air from the stomach. The baby will receive frequent x-rays to watch the disease’s progress.

If medical treatment is not working or if the bowel perforates, surgery is required. A surgeon will remove any dead sections of bowel and other infected material. The bowel will either be reattached or will be diverted to the abdomen through a stoma. Medical treatments will continue until the disease is resolved.


Outcomes of Necrotizing Enterocolitis

NEC is a serious disease, and about 25% of infants who recover from NEC will need treatment for long-term problems. Infants who are medically treated for NEC may have growth delays, trouble absorbing nutrients, and trouble with their livers and gall bladders. NEC also increases the risk of developmental delays.

Infants who have had surgery for NEC also show long-term effects from the disease. In addition to the effects of medical NEC, surgical patients may have severe absorption problems such as short bowel syndrome and have an increased risk of cerebral palsy and brain and eye problems.


Preventing Necrotizing Enterocolitis

Preventing premature birth is the best way to prevent necrotizing enterocolitis. If you are at risk for preterm birth, talk with your doctor about what you can do to lower your risk.

If preterm birth does occur, then feeding only breast milk can significantly lower the risk of NEC. Breast milk contains protective factors that encourage good intestinal development and can reduce the amount of harmful bacteria in the intestines. In one study, infants whose feedings contained at least 50% breast milk had a six-fold decrease in the incidence of NEC.


In addition to preventing preterm birth and feeding breast milk, giving steroids to the mother when premature birth is expected may reduce the risk of NEC. Also, supplementing breast milk and formula with different substances such as probiotics or immunoglobulins may help, although more research is needed.

Some Statistics About NEC


Over 90% of infants who develop necrotizing enterocolitis (NEC) are born preterm.

The incidence of NEC is between 5-10% of all very low birth weight infants (less than 1500 grams).

The mortality related to NEC in very low birth weight infants is between 20-30%

The mortality related to NEC in extremely preterm infants (less than 1000grams) is approximately 40-50%

Infants who weigh less than 1000 g at birth have the highest attack rates. This rate dramatically drops to 3.8 per 1000 live births for infants who weigh 1501-2500 g at birth.

Rates of NEC drop dramatically for infants born after 35-36 weeks' gestational weeks of age.

The average age of onset has been reported to be

20.2 days for babies born at less than 30 weeks' gestational age,

13.8 days for babies born at 31-33 weeks' gestational age, and

5.4 days for babies born after 34 weeks' gestation.



(Read more about Preemie Health Complications Statistics by preemiehelp.com)

Julianna had a small risk of NEC. She did not get it and did great with her feeds from the beginning. She was able to take her mik orally although they all said she would probablly not be able to do that. She proved them all wrong and took her 4cc's by bottle, digested it like a champ and demanded more a few hours later.

Jack has a much bigger risk but he has a greater chance of not getting it than he does of getting it. He will be at great risk for this until he is released from the NICU. The average age of onset of NEC for his gestational age is about 3 weeks.

So far Jack is doing great and I am thrilled with his progress.
Thanks for the encouragement, prayers and support!

PICC line today

I called about Jack and they said he is doing ok. He is going to have surgery to place the PICC line today.

Tomorrow he will have the head ultrasound to see if he had an intraventricular hemorrhage. They do not know what time it will be. His nurse said it depends on the schedule of the ultrasound technician. If he has it early they should know the results before the end of the day but if he has the test late they may not have the results until Thursday.

I am very worried about this test. If he has a bleed it is already there. If he has a serious bleed there is a strong likelihood he will never be normal. I know I will deal with whatever I have to, but I want him to be healthy. I want him to run and jump and climb and get into mischief just like his sister.

Most bleeds happen in the first four or five days of life. If he does not have a bleed it is unlikely he will get one.

When Julianna was born at 34 weeks they told me she had the possibility of all kinds of problems. She did have some delays and a lot of small preemie issues. However, she didn't have anything major. She is perfectly normal now. She is a bit small for her age but she doesn't seem to know that!

I hope for the same outcome for Jack.

Pictures

                           Tierney, who carried baby Jack, with me and Jack in the NICU.

 

Stephanie Scott, one of the directors of Simple Surrogacy (the agency I used) with me and Jack in the NICU. Stephanie flew in from Idaho to be there for me, Tierney and Jack. Simple Surrogacy has been amazing. I highly recommend them.

Echo Cardiogram Results

The NICU called me with the echo cardiogram results. Jack does have a PDA. However, it is small and they think it should close on its own. They will keep watching it so he will have more echo cardiograms in his future. I am happy that it is not a bigger one that will be a real problem for him.

They called me for consent for a PIC line. That is a surgically implanted intravenous line. He will need that because they are going to have to take his umbilical lines out soon.

The nurse said he is doing great. I can't wait to go see him.

Jack is hanging on

I called the NICU and they said Jack was doing ok today. He had a blood transfusion, his second so far. They didn't tell me how much this was was but the last one was 8cc. That is less than 2 teaspoons. He is getting blood to replace the blood they are drawing. He also received sodium bicarbonate (IV) today due to being slightly acidotic. He is still on the ventilator.

On Saturday they advised me that he had a heart murmur and they suspected he may have a PDA. That is a patent ductus arteriousis. That means that the hole for his fetal heart circulation likely did not close. That means he has a hole in his heart. They gave him medication to try to close it and he had an echo cardiogram today. We will not get the results of the echo cardiogram until tomorrow. I am hoping the medication worked and that it is fixed. Tierney came to the hospital to be with Jack during his echo cardiogram. She also brought more breast milk since she has been pumping for him.

Jack has not yet eaten. He will not be able to eat anything until they remove the umbilical catheters. He has one in this vein and one in his artery. After that they will put 4cc of breast  milk down his oral gastric (OG) tube. Then they will wait 4 hours and aspirate the tube to make sure he digested it. If he did he can continue with small feedings. If not, they will stop. Feeding a preemie that is not ready to feed is a huge big deal. They can get necrotizing enteric colitis (NEC). This is a huge killer of preemies and they have to be super careful with him. Even with the utmost care some babies get NEC and most do not survive it.

On Wednesday Jack is having an ultrasound of his head to make sure he does not have any bleeding into his brain. Intraventricular hemorrhages are very common in small preemies. They are graded from 1 to 4 with 4 being the most serious. They are most common in the first 4 or 5 days of life which is why they scan them when they turn a week old. The doctor said some babies with severe brain bleeds do very well because their brain is pretty plastic. In other words, their brains are still capable of making alternate pathways at this point. However, some babies do not do well with even small bleeds and develop cerebral palsey or other difficulties. The doctor said it is very rare for it to effect their intellect, it is usually physical.

It is all very scary. It is a bummer not to be there with him. I have scheduled a trip back for 12/14. Please pray for him.

 Jack's bear next to his monitor. The bottle next to it is 1/2 liter.

 Jack with his teddy bear. It is much bigger than him!

 I am holding Jack's hand when I had to say goodbye.

The priest baptizing Jack. He will have a real baptism when he gets home.

The Baby is Here!!

I was called a few days ago and told to get on a plane to Little Rock because the baby was coming. Tierney had pelvic floor pain and then vaginal pain. It got worse and then seemed to come in waves so she went to the ER. They checked her and she was dilated to a 6. They immediately gave her steroids and had her almost upside down on an inversion table to try to keep the baby in at least 24 hours so she could get the second steroid shot. The steroids help the baby's lungs develop.

I was notified at about 2pm. I left work, went home, packed a bag for me and a bag for Julianna. I set up people to get Julianna and keep her for a few days. My neighbor gave me a ride to the train station. I got to JFK airport just in time to board my flight. It took off at 6pm. I had to fly to Charlotte, NC and switch planes to get to Little, Rock. When I was switching planes I got a message that said they were prepping Tierney for a c-section.

Baby Jack Richard Humphrey was born at 7:51 pm Arkansas time. Unfortunately my plane landed at 10pm Arkansas time. He was 26 weeks, 2 days gestation. He was big for his age at 2 pounds, 6 ounces and 14 inches. He is in the NICU at Baptist Hospital in Little Rock, Ark. It is a level 3 NICU (the highest level). He is critical but stable. He came out screaming and was breathing on his own for some time but had to be put on a ventilator. He was getting tired and forgetting to breathe. He is super tiny. I got to touch him but it will be some time before he can be held.

He has a lot of risk for a lot of issues. He has a heart murmur so they think he may have patent ductus arteriosus (PDA) it is very common in extremely premature infants. They gave him medication that may correct this problem. He will have an echo cardiogram tomorrow. He is at high risk for brain bleed so he will have a brain scan on Wednesday.

I have to leave here tomorrow. It makes me very sad to leave him but it is likely that he will be here 3 months. I am going to try to come here every other weekend. Everyone in this hospital is super nice. They said they will email me pictures of him every day. I can call anytime to ask about him.

Tierney had to have a c-section due to him being breech and being so small. She was not feeling great for awhile but was able to be discharged today. She is pumping milk for Jack. It will be sometime before he can have it and then it will be through the oral gastric tube. I am eternally grateful for all she has done. They do not know why Jack came so early. It might have been an infection and it might have been a blood clot on the placenta. The placenta went to pathology but it takes some time for the results to come back.

Tierney said she will visit Jack and continue to pump milk for him. The nurses and other staff at the hospital said they will give him extra love since I won't be here all the time.

Julianna was born at 34 weeks. I am amazed at the world of difference between a 34 weeker and a 26 weeker. The amount of intervention required to keep Jack alive is amazing. In Julianna's case she was a "feed and grow" preemie, meaning she didn't require much intervention. Jack certainly does. His care will be over $1 million. They applied him for medicaid. I advised the social worker that is was unlikely I would qualify for that. She told me that all babies born at under 1200 grams automatically qualify. It should cover all expenses my insurance will not cover. I am hoping that is true.

Jack was baptized yesterday. The priest came to do it. I figured it was best to have him covered. We will have a real baptism when he comes home.

Please pray for baby Jack. He has a very long road ahead of him. He is a real fighter and I am told he is doing great.

Thanks everyone who helped me out with Julianna, Smudge and with good thoughts and prayers!!

Crazy Times

Things have been pretty crazy in the last few weeks. Hurricane Sandy came and devastated Long Island and many other places. We lost our roof in the storm and were without power or heat for over a week. Most of my neighbors lost their first floors in the flood water and many lost their entire homes. With the help of family and friends I was able to get a tarp on my roof and re-mortar the chimney. When the power came on I was able to get the furnace started. My upstairs tenants moved out because they were worried that the ceiling would cave in. My upstairs is now being used as a community shower for my neighbors who are still without heat and hot water. I have a lot of work to do to fix everything but we will get through it.

Tierney called me yesterday to tell me that her OB put her on bed rest. She is having pelvic floor pain. I am hoping and praying that the little guy can stay in as long as possible. She is almost 24 weeks pregnant so it is way to early for him to be born. I am really hoping he is a full term baby. I am praying and keeping my fingers crossed.

I am here in a nice warm house with power so things are good. Thanks to everyone for the help!!!!

Its A.......

I am back home from Arkansas. It was great to see Tierney. We were able to spend some time together.

We saw the sonogram. It was great. The baby is a boy!!! He appears to be healthy and is now 13 ounces. Julianna was the first person I called. She was a little iffy about a brother but was won over when I explained to her that Uncle Rich is my little brother. She loves Uncle Rich and hopes her little brother is as great. She did correct me to say that Uncle Rich really isn't little.

She was picked up at school Tuesday night by my friend Vanna. Vanna called me to say she thought Julianna had pink eye. She was nice enough to take her to the doctor who said she did have pink eye. Betty picked her up at Vanna's house and kept her Tuesday night and Wednesday. She has been on the drops since Tuesday but was still unable to go to school today. I am hoping she can go tomorrow.

So we are celebrating the happiness of expecting a baby boy!!!!! Thanks everyone!!

Going to Arkansas

"However motherhood comes to you its a miracle!"

So I am off to Arkansas tomorrow! The big 20 week sonogram is at 8am (Arkansas time) on Wednesday morning. I will get to see Tierney and the baby. If all goes well we will find out the gender. I am pretty excited about it. I promised Julianna that I will call her when she gets picked up from school so I can tell her all about it.

My flight leaves Laguardia airport at 6am. I was not able to get a flight to Arkansas for under $900 and with less than 2 stops so I had to make some concessions. First, I hate Laguardia airport, but I am going from there. JFK is better because it is so easy to take the train there. But, there were no flights from there that worked.  I decided to go to Memphis instead. Memphis is about 100 miles from Little Rock. It appears to be a straight shot on I 40. I will zip over there in my rental car. I am staying overnight in Little Rock and then driving back to Memphis after the sonogram. I should get home at about 11 pm Wednesday night.

Julianna is sleeping at my friend Colleen's house tonight. She will drop her off at school tomorrow. My friend Vanna will pick her up tomorrow afternoon and she will sleep at Vanna's house. Vanna will bring her back to school Wednesday and Colleen will pick her up and bring her to my friend Lori who will keep her until I get home about midnight. It will be easy to get her home since Lori is right next door.

I worked my days off to make up for these two days so I don't have to waste any time off. I want to save as much as I can for when the baby comes. I used a lot for cancer treatment. Not fun, but I had no choice.

So it is all set up and now I am ready to roll in a few hours. Thanks to everyone for helping me out!!!!!!

Getting Excited!!

I am getting very excited about the baby. The "big" 20 week sonogram is on October 17th. I am going to go to Little Rock, Arkansas to see it. I am going to fly down on the 16th, stay overnight, see the sonogram and fly back. There are no direct flights from any of the New York airports to Little Rock. This means you have to change planes somewhere. The best airfares have you changing planes two or three times, but that is too much for me even if it is a big savings. I am still seeking out the airfare, stealthily checking various sites at all hours of the day and night. This method has worked for me in the past so I am hoping it works again.

My stepmother Betty has shingles. She is in a ton of pain. I went over there yesterday so she could go to the doctor. They confirmed it was shingles and gave her an anti-viral and pain medication. She is currently having very severe flu-like symptoms, fever and bad nerve pain. Of course this disease is stress induced. Her stress level is super high. If you can get the shot for this I would suggest it, it is a terrible illness. I called my pediatrician immediately because someone who has not yet has chicken pox can get the chicken pox from someone with shingles. She cannot transmit the shingles to anyone who has had chicken pox. In that case the disease is already dormant in your body. Julianna has not had chicken pox and her whole immunization schedule was disrupted, first because she was a preemie and needed RSV shots and then because I was having chemotherapy and she was not allowed to have any vaccines during that time due to the extreme immunosuppression from the chemotherapy.

We went to the pediatrician this morning and it turns out she actually had the varicella (chicken pox) vaccine right before I was diagnosed with the breast cancer. Score! But they did give her her last hepatitis B vaccine and a flu vaccine. She was a trooper as usual and we are finally all caught up with all shots. I wanted her to get caught up for her health as well as the new baby's health.

Tierney is super busy but she is feeling good. It is amazing that we are almost half way there!

Good News!

Go confidently in the direction of your dreams. Live the life you have imagined.
 ~ Henry David Thoreau


I had my MRI. I had an appointment for Thursday at 7:30 am in the Nassau Radiology (NRAD) Garden City office. Just as I was about to pull in the parking lot they called me and asked me to go to the Woodbury office instead due to some problem with the machine. So off I went to Woodbury in the heavy Long Island morning rush hour traffic. I got there and there was a wait due to them moving everyone around. The MRI tech marked the spot on my clavicle by taping vitamin E capsules to the spot. The MRI took about 40 minutes. It was super loud and they put a head immobilizer on me right before they slid me into the tube. I was happy to get out of there.

I went back to work after it. I had to give a lecture and just as I was walking out of it my cell phone rang. It was Desiree from Dr. Citron's office to tell me that the MRI was negative. They don't know why it is swollen and tender but its not cancer. Big relief!! That is an area where breast cancer often goes. I don't know why it is swollen either but a few weeks ago I had an incident where my elbow swelled up. It was very swollen, red and hot. I had not injured it as far as I knew. I went to the orthopedist and they said it was infectious bursitis. They put me on an antibiotic and antiinflammatories and it went away, but it took awhile to go away. So now I am wondering if the two things have anything to do with each other. I do not know but I am just happy it is not cancer.

I like to think I beat the cancer but it does creep in to mess with my head. Just when everything is great it seems like it creeps in to remind me, "not so fast, I can take it all anytime." I don't let it take me over. I really do my best not to think about it too much but sometimes there is no choice but to think about it. It does remind me about how lucky I am and how grateful I am for everything in my life.

Good Things and Bad

Tierney is feeling good. The baby is getting bigger. I am going to try to get to Arkansas for the 20 week sonogram.

I went to Dr. Citron, my oncologist, yesterday. I have some pain to my right clavicle that has been bothering me for about a month. He said it does appear to be inflamed there and is sending me for an MRI. He said it could be an inflamed sterno-clavicular joint. Of course they never tell you what else it could be.  But I already know that. They can't do the MRI until Thursday due to having to wait for insurance approval. Then I will have to wait for the results. I hate waiting for these tests, it is torture.

My Dad's Alzheimer's disease is progressing. Betty has been considering a nursing home. While that is probably a good idea it is very tough. He has been getting harder ans harder to care for which is what led to that decision. So she got to the point of making that decision and suddenly he started to get easier. It is like he knows and doesn't want to leave. I had him on Friday. I took him to lunch and for a drive. Then I got a pizza and picked up Julianna and we all ate together. He really was easier. It was hard to believe. We are still going to check into places so we are ready but for now it is on hold. I was happy that we got to have such an enjoyable visit.

All these things going on help me to put things into perspective. What matters, what doesn't. Julianna is involved in a lot of activities and I love watching her discover new things. She is such a happy little girl!

Three Years From Diagnosis

Three years ago today I was diagnosed with breast cancer. It was a long road but I am happy to say I feel great and I am very optimistic about my future. I realize the cancer can still recur but I do my best not to dwell on it. A number of women who were diagnosed with similar stage, grade, tumor markers and at the same time as I was have recurred and are now stage 4, but most are fine. I spoke to a lot of women on breastcancer.org. and I have continued to follow some of their journeys. It was a great site and I learned a lot there. Back then people told me I should join a support group. There was no way I could do that since babysitting was an issue for me, plus, a lot of the time I was too tired to go drive somewhere. Breastcancer.org is an online support group, discussion site and wealth of information. I highly recommend it to anyone dealing with breast cancer.

So for me it is a happy anniversary. I am happy to have gotten through tough tines and happy to be looking ahead. Tierney is almost in the second trimester. I really feel like we will make it this time and have a baby. Life is good!!

Moving Along!

Tierney is starting to feel a lot better. She says she is hungry all the time. She is also  (finally) off the progesterone shots. The progesterone shots are intramuscular shots that are needed every day. It is a think fluid and the shots are pretty painful. They also cause intense itching. These shots are required with in vitro fertilization (ivf). Why are they needed, you ask? Well, with natural fertilization the follicle on the ovary ruptures and the egg comes out and is fertilized, usually in the fallopian tube. The part of the follicle that is left behind after fertilization is called the corpus luteum. The corpus luteum produces progesterone to support the pregnancy until the placenta takes over. In ivf the egg is removed from the ovary via syringe. The egg is fertilized and then put back in the body. Or, in this case put back into Tierney's body. So, there is no corpus luteum to produce the progesterone. But now the placenta is making enough progesterone to support the pregnancy so she can stop these painful shots.

When I did IVF myself I had to do the shots. In my case I lost any pregnancies I achieved via IVF so I wasn't on the shots for very long with any cycle. When I was pregnant with Julianna (IUI) I used supplemental progesterone too. It was great when I got to stop so I know how happy Tierney is about that!

We have a week and a half to go until the second trimester starts. That is very exciting because the risk of losing the pregnancy goes down a lot at that point.

When the doctor did the last sonogram he said that the sack is measuring exactly as it should be but the baby is slightly bigger. He said he thought it would be a big baby. It is amazing that they can even say that at this point. We will see what happens. It will be strange to have a big baby after such a peanut last time.

Keep your fingers crossed!!!!!

Bad Morning Sickness

Tierney is super sick. So much so that she went to her doctor and he said her blood pressure was low. She said she hardly had any morning sickness with either one of her boys. Her mother said it is probablly a girl because only girls could be that mean. Her mother said she was pretty sick when she was pregnant with her.

I was super sick when I was pregnant with Julianna. I threw up every day up to and including the delivery. I vomited through the whole c-section and then they gave me something in the iv to knock me out. I missed seeing her which made me pretty sad. Damn pre-eclampsia and HELLP syndrome!

I am hoping that Tierney starts feeling better soon. She has another doctor appointment on Saturday and they will do another sonogram then. I am super excited about this baby but it is sad not to be there to experience everything first hand. I am not sorry to be missing out on the morning sickness though.

Feel better Tierney!!

Sonogram Today

Tierney had a small bit of bleeding today so they did a sonogram to check things out. There is only one baby in there. It is measuring fine for dates and they even saw the heartbeat. She is having pretty bad itching from the progesterone and of course bleeding is always a concern. They are going to repeat the sonogram in two weeks. Keep your fingers crossed that the baby stays in and stays healthy!!!

Waiting For Sonogram

Well, our first beta HCG was 112 (day 15 post ovulation) and two days later it was 237. The numbers are perfect for a single. The numbers make me and the (experts) on surromomsonline.com think it is a singleton. They do caution me that the sonogram is the only way to know for sure.

When I was pregnant with Julianna my day 13 # was 135 and day 15 it was 403. Everyone thought it was twins but when we had the ultrasound there was just one strong little heartbeat there.

Doctors say the numbers don't mean that much but there are entire websites devoted to these numbers. www.betabase.info and then before the blood test and using home pregnancy tests there is www.peeonastick.com .

Our first sonogram is scheduled for 7/18 at 10:30 am Arkansas time. Then we will know. In the meantime Tierney is feeling pretty sick. All normal for early pregnancy but nevertheless, no fun. She is super tired and has been going to bed by 9pm.

We believe the due date should be 3/4/13. This still has to be confirmed by the doctor. I am really hoping this baby decides to stay. I haven't told Julianna yet. It is too soon and you never know.

Keep your fingers crossed!!!!

Official Beta HCG Results

The blood pregnancy test is officially positive!! The number was 112 and that is 14 days post ovulation. They will do another test on Wednesday to make sure everything is doubling as it should and then they will schedule the first sonogram.

I am very excited!!!!

Picture!!!!

Tierney sent me this picture!!!! The official blood test is tomorrow, but this looks pretty good!!!

Blood Test Tomorrow

Tierney will have her blood tested tomorrow to see if she is pregnant. I am keeping my hopes up.

I went to see Dr. Marc Citron (oncologist) the other day. He did an exam and drew blood. Everything was fine with the exam and he said they would call within two days if there were any problems with the blood. Specifically, they do tests for tumor markers to see if anything is rising. I have never had high tumor markers. It is hard to say if I ever did since the first time I ever had that test was after my surgery where any tumor was removed. In most cases if there is a recurrence anywhere in the body the tumor markers will rise. I did not hear anything from Dr. Citron's office, no news is really good news. I have to go back to see him again in November.

Julianna and I have been having a good time. We went to Walt Disney World last month, Sesame Place this month, lots of beach trips, parks and the movie Brave last night. We pack a lot in. She has gotten so easy to do things with I sometimes wonder if I am crazy to add another baby. But, then she tells me how she wishes on stars and prays for a baby so I think it is the right thing to do.

I will post when I find out the results of tomorrow's blood test. Fingers crossed.

Two Embryos Transferred Today!

Tierney had the embryo transfer this morning. The embryologist called me to say the embryos thawed well and were considered "good" quality. Not excellent, but good.

Julianna and I were at her t-ball carnival and she received her trophy. While we were there Tierney was in Texas having the transfer. She called me, pretty groggy from the valium, saying she was just about to be wheeled into the procedure room.

So now the waiting begins. Since the embryos were at a 6 day stage when they were frozen we will only have to wait 8 days to find out if it worked. I sure hope so!!

Embryo Transfer Tomorrow

So tomorrow is the big day!!! Tierney is flying to Texas today for the embryo transfer tomorrow. The doctor should call me just before the transfer to let me know how the embryos look. We are probably going to transfer two, but that depends on the embryo quality.

Keep your fingers crossed!!!!

Well, we are hoping to get moving again. Tierney is feeling better and that is good. However, she lost a  lot of time from work due to the bed rest, miscarriage and D & C. Since she did not yet have a year at her job she did not qualify for FLMA. She has been told she can't miss any work time. Our clinic is in Texas and she is in Arkansas. She will have to fly there for the transfer. The clinic was saying there was no way they would do a frozen embryo transfer (FET) on the weekend. This was a huge issue and meant we would just have to wait until Tierney's job gives her some time off.

We were lucky because the clinic doctor has agreed to allow us to do our FET on a weekend. This is great because it will move it up somewhat. As of today it is looking like we will transfer in mid June. I hope that actually happens.

We have decided to transfer two embryos this time. This was a big dilemma for me. I am worried about prematurity as well as Tierney's health in the event both embryos decide to stay. The problem is that I am running out of money and I want it to work. The cost each time is pretty high. So we have agreed to go ahead with two.

Julianna told me that she wishes on a star every night for a sister. I told her we don't know if we will get a baby and if we do it could be a boy. She said she knows that and that is why she wishes on a star. I really hope it works this time.

Monday I have my appointment with Dr, Kostroff, my breast surgeon. I only have to go once a year now. I am pretty sure everything is fine but I will find out for certain on Monday.

I am feeling good, enjoying life and very busy. Julianna has swimming and T-ball. She is having a lot of fun and is a happy and good natured child. Life is good!!

Waiting to Try Again

     Tierney is starting to feel better! She wanted the miscarriage to happen naturally but it did not. Her OB/GYN Dr. Woods said she had to have a D & C or she would get a terrible infection. He scheduled her for the D & C that day.

     So far she is feeling ok. We are waiting for her cycle to start again. She will go on birth control pills so they can control her cycle. When everything is ready she will fly to Texas for the frozen embryo transfer.

     The big dilemma now is, should we transfer one or two embryos? With two, obviously there is a big chance of having twins. With twins there are greater chances of complications and prematurity. It is also a much bigger risk for Tierney, and a more difficult pregnancy. With one, there is a greater chance that it won't work at all. Each try is very expensive and it is not covered by insurance. I am not going to be able to do many tries. Frozen embryo transfer has a lower success rate than fresh embryo transfer. I can't help but think if we had put two in maybe there would still be a baby growing.

     Tierney says she is ok with whatever I decide. I go back and forth on it. I'll let you all know when anything is happening. Right now it is a waiting game.

Repeat sonogram

We lost the baby. There was no heartbeat. :(

Problems in Sonogram

There were some problems with the last sonogram. The baby is not growing as fast as it should be and the heart rate is not as fast as they would like. They are keeping Tierney on bed rest and they are going to do a repeat sonogram. I am hoping all is going to be ok but I realize that this is not a good sign.

THey are going to do a repaet sonogram soon to see what is happening. Keep your fingers crossed!

Trip to Arkansas

I went to Arkansas to see the sonogram and the baby's heartbeat. It was really great. We were able to see the fetal pole, the yolk sac and the heartbeat. I love my carrier. She is really great. I also loved the OB/GYN. He trained in NY.

I have a picture of the baby. It is on my refrigerator. It can go in the book like Julianna's did.

I did some sightseeing down there too and it was fun. The difficult part was flying down there and back. There are no direct flights so it took all day both days. I flew down early on the 3rd and flew home late on the 4th.

Julianna turned 4 on January 8th. She is thrilled to be 4. She had cupcakes at schook on Monday, complete with pink icing, pink and purple sugar on top and princess candies for decoration. She was thrilled.

Her party with her friends is on the 22nd. We are looking foward to it.

Everything is pretty good here!!! I hope everyone else is having a great time.

The Baby's Heartbeat is Strong!!!

Tierney called me after the sonogram. The baby's heartbeat is strong. They think she had a small clot near her cervix and that was the cause of the bleeding. They said she has to be on bedrest for a few days. She said she is off tomorrow and she will stay home Tuesday as well. I am going down there on Tuesday for the sonogram on Wednesday. She said she feels ok but was just tired and hungry.

Keep your fingers crossed!

Happy New Year!

Happy New Year!!

I hope this year brings good things. I just recieved a call from my surrogate that she is in the ER cramping and bleeding. :(

I am supposed to go to Arkansas on Tues and Wed for the heartbeat sonogram. Things are not looking so good right now. Please say a quick prayer for the baby and for Tierney (my surrogate) if you can.

She said she is pretty comfortable right now but they are waiting for the sonogram tech to come in. She is going to call me later when she knows more.