Bad Night

The hospital called me last night to tell me that Jack had a really bad heart rate drop and stopped breathing. The ventilated him and were able to get him started again. His oxygen will now be at 3 liters per minute. He was having a feed at the time and they think it happened because of his reflux. They put the TPTN line back in so he will not get feeds into his stomach and he is going to get them into his intestine again.

So he pretty much lost all the progress he had made and has moved pretty far backward. I am hoping he can get it all back again soon.  I just wish he could stabilize and stop losing ground every time he gains a bit. I also wish I could hug him. It is such a bummer that he is going through so much without his Momma there. I do call constantly and they call me. In fact they called last night after 11 pm. It is pretty scary to see them calling so late at night because I know there is no way it is good news.

Please continue to keep Jack in your thoughts and prayers. Thanks everyone for all the support.

Oxygen

Jack is doing much better with the feeds. He is now getting 45 cc over an hour into his stomach. He is tolerating the feeds well.

He is still having pretty severe heart rate drops and oxygen desaturations. He had another really bad one yesterday where they had to ventilate him and use the c-pap for awhile. He seems to have a few significant episodes each day. Today they had to raise his oxygen to 2.5 liters per minute. They have tried to reduce it numerous times but he never maintains the reduction for very long. He is doing much better with more oxygen.

Both Julianna and I are sick. There is no way I can go see Jack if I am sick because he is at high risk for any respiratory issues.

I am still hoping to get him up here but it is taking forever. One of Jack's nurses said he might be ready to go home before we straighten out a transfer. I sure hope he is ready soon, but I am doubtful that it will be really fast since he is having so many issues with his breathing and heart rate.

I sure hope I get to see him soon. I can't wait to give him hugs and snuggles.

He Doubled His Birth Weight!!!

Jack has officially doubled his birth weight! He now weighs 4 pounds, 12 ounces. He is now a big fat fattie!

He is now eating through the gastric tube (into his stomach) only because he pulled the other tube out. He has been doing ok with that. He is still on oxygen although they were able to reduce it a bit. He has still been having some heart rate and oxygen saturation drops but it has not been as bad as it was.

I asked them when they were going to try feeding him with a bottle. They said they usually like to wait until the baby is totally off oxygen because the bottle feeding can cause desaturations.

I am still trying to get him moved but I am meeting a lot of obstacles. I am happy that he is doing better. Thanks for all the prayers and good vibes!

Good Day!!

Jack is having a good day! They started feeding him through the oral gastric tube so the feed went into his stomach. He tolerated the first one well although he is on zantac because of his reflux. They raised his caffeine dose because of his heart rate drops. That has helped him enough that they were able to reduce his oxygen to 2 liters per minute. He is stabilizing so as long as the insurance issues work out soon he might be able to moved closer to home soon.

I am hoping this upward trend continues!!

Good and Bad - Day 52 in the NICU

The good thing is that I had success with Social Security. The woman from the Little Rock Social Security office, Freda, tirelessly worked on this. She called the hospital, social worker, doctors, vital records, etc. She got the info and faxed it all to the social security office here.

I went to Social Security here. After the obligatory two hour wait I got to the window. I told the whole story to the woman. She went to the FAX machine and was able to locate the FAX from Freda. Jack's Social Security card request has been processed. The said I should receive it in one to two weeks.

After I got back from Social Security Freda called me back to see how it went. She said she should be able to access the number on Tuesday. She said she would call me and tell me the number even though it will take a bit for the card to come.

I am pretty happy about this and it means I should be able to get Jack on my insurance and then maybe transferred to a hospital closer to home.

Now for the bad part. Jack is no longer considered stable enough to transport. He has had a number of oxygen desaturations and a really bad one today where they had to bag him (ventilate) for awhile. I am hoping he gets to be more stable while I wait for all the insurance issues to play out but that might not happen.

Jack had a chest x-ray today. When I called to ask how it was they just said "hazy." Hazy is bad. Because Jack was on mechanical ventilation for so long and continues to be on oxygen there is a good possibility he has BPD. They have not actually diagnosed him with it but it is looking like he probably does.

Here is some info about BPD:

Bronchopulmonary Dysplasia (BPD)


What is it?

Babies who still need oxygen at 4 weeks before their original due date are considered to have bronchopulmonary dysplasia — one of the most common chronic lung diseases in infants in the United States.

What causes it?

Bronchopulmonary dysplasia occurs in different infants for different reasons. It can happen in full-term as well as premature infants and doctors believe that it's due to an individual infant's response to a number of possible factors.

The combination of the premature baby's immature lungs and the treatments (including machines and oxygen) to help the little one breathe is thought to cause damage (or scarring) to the lungs. Infections and pneumonia can also lead to the condition. Milder levels of damage are called chronic lung disease of prematurity (CLD). As the babies mature, they grow more lung tissue, which can improve their breathing over time.

How is it diagnosed?

The diagnosis of bronchopulmonary dysplasia usually doesn't occur until 2 to 4 weeks into the infant's life. At that point, the doctors make a diagnosis based on whether there was lung damage or an injury at birth and whether the infant has needed extra oxygen for a prolonged period of time. Chest X-rays can also help determine the extent of the lung damage.

How is it treated?

Bronchopulmonary dysplasia is sometimes treated with steroids to decrease the amount of scarring. However, because steroids can cause side effects, doctors usually wait as long as possible to begin steroid treatment. Steroids are never used without a complete discussion with the family about potential benefits and risks.

Other, more commonly used medicines include diuretics (which make the baby urinate, or pee, and help eliminate excess fluid that can build up in the damaged lungs) and bronchodilators (which relax the muscles that surround the airways and allow them to open up).
Babies with the disease also sometimes need ventilators (breathing machines) at home to help them breathe. And although it's uncommon, in severe cases, the surgical insertion of a breathing tube in the neck (called a tracheostomy) may be required so the baby can go home on a ventilator. Occasionally, babies need home oxygen therapy for several months.

How long will my baby be in the NICU?

Bronchopulmonary dysplasia is a serious condition that calls for longer stays in the NICU, sometimes up to several months. The smallest infants are usually the ones who develop the disease, so their stays are longer to make sure they're stable before they're discharged.


Jack has already had steroids and diuretics. He has not done well when they try to reduce his oxygen. But he is breathing on his own. He just forgets sometimes. I am hoping he does better with this soon.

They won't feed him into the stomach because they think his reflux is giving him some of the breathing problems. He is gaining weight.

People ask me all the time if Jack is going to have long term problems. I do not know. No one knows if any child is going to have long term problems. If he does I will deal with it and get him every possible type of help I can. I can retire and stay home with him full time to work with him if he needs that.

When Julianna was born they told me there was a good possibility she would have problems. She did. However, they were all things I could deal with, umbilical hernia, clogged tear ducts, urinary problems, reflux, colic, food aversion, projectile vomiting due to immature pyloric valve, breathing issues, slow gross and fine motor development, slow speech, etc. It was a rough road at times but she seems completely fine now except for being very small for her age.

So, I do not know what is in store for Jack. I do know that we love him and can't wait to get him home.

Getting Nowhere with SS

So, my frustration is growing. I spoke to a woman from social security in Little Rock , Ark. She advised me that it appears that the hospital tried to apply Jack for a social security number but forgot to put an address on the application.

She told me that she would fax some necessary information to the social security office here in Mineola, NY and that I should go there today. I did. I waited two hours with a bunch of smelly people who are not too up on the American culture pertaining to hygiene. When I finally got up to the woman I explained the situation to her and she went into the back to see if there had been any faxes. She returned to tell me there had not been any.

I left there and returned to work where I proceeded to call Freda, the woman from the Little Rock, Ark social security office. She told me it appears the FAX never went through, but also that she thought she needed more information from the hospital social worker. I asked her if she could FAX the information to me directly. She said they would not accept that. They don't accept faxed copies but they would if it came from another social security office. She told me NOT to go back today, but to go back tomorrow.

Just after I got off the phone with social security one of Jack's doctors offices called. They said they are trying to get insurance payment and he does not have insurance. I explained the whole situation to her and asked if she could send some type of medical document or bill in Jack's name. She said she didn't think she could do that due to legal issues. I advised her not to expect payment from me then. Legally speaking I must not be responsible. The attorney did tell me that I am not responsible if it is the hospital policy that is causing him not to have insurance and they refuse to make and changes to assist me.

Next I spoke to a woman from the hospital social work department. She said they can't change any policies in any way but they may be able to send me a letter of live birth and possibly a progress report stating his gestational age and weight. She thinks she may be able to get it to me with his last name as my last name. If that actually happens it would be a huge score and it should work. It has to be mailed since social security will not accept any faxed copies, except from another social security office.

I am hoping to have something change soon so I can get him transferred here. He is pretty much the same but I get annoyed because I do not feel like they give me too much information when I call about him. I called today and they nurse was out for awhile so I have to call back later. Also, I have NEVER heard from the doctor. Not once. I have asked the nurses to have the doctor call me but it has never happened. I have also asked what time the doctors round so I can call at that time but they tell me it can be any time. When I was down there the doctor was also there and I asked to speak to him. It was the day I was leaving and I was in a rush to make the plane. The nurse went and asked the doctor and he said sorry, I won't go out of order. So since Jack was at the end of the hall I had to leave there before he could see Jack or I would have missed my plane. I really want him closer to home so I can see him all the time, be more involved in his care and be informed about his care. None of these things are happening where he is.

So that is the saga for today. I hope to have better news to report soon.

Jack Still Being Held Hostage in Arkansas

Because Jack was born via gestational surrogacy there was a lot of legal work involved. We had a contract and we had a post birth order. There is usually a pre-birth order but Jack decided to come before it was completed. The legal paperwork goes by Arkansas law. Arkansas law is very favorable to surrogacy, which is why the agency recommended that state.

Jack was born at Baptist Hospital in Little Rock. The attorney (Heather May, awesome) had all the paperwork done and the birth certificate was in my name right away.

I have his birth certificate but I did not yet receive his social security card.I need the social security card to get him on my medical insurance. I have called the hospital, Social Security, Arkansas vital records, medical records at the hospital, women's services at the hospital and every other office I can think of.  I finally had the attorney call and see what the problem is. It turns out the hospital did not apply him for it even though we did the paperwork for it. When I called they said they will not do that since it was a surrogacy. In order for me to do it myself I need the birth certificate (have it) and proof of identity. Proof of identity for a newborn is a medical record. However, they have everything in my GS's name. They refuse to change it to my last name despite all the legal paperwork.
I advised them that I would not be able to pay his bill if he is not on my insurance. His NICU bill should be around $1 million. The woman then said she would call me back.

The woman calls me back and said they are not worried about the bill because the applied him for SSI. He is automatically eligible for SSI because his birth weight was under 1200 grams. I asked her if she could please send or fax me a copy of that application and she said no. That is only something that can be seen by their social work department.

Obviously there must be a social security number if he is getting SSI. I do not know why I (his parent) would not be entitled to that information.

So currently my son is trapped down there in Little Rock and I can't transfer him  here.

I wish I could just go down there, walk into his room, open his isolette and walk out with him. Obviously that would not be in his best interest, but I am so frustrated with this situation.

My advice to any IPs (intended parents) using Arkansas would be to NOT use Baptist Medical. Also, where ever you are having your child find out about policies of this nature. My lawyer had never heard of anything like it but it is not normal for a surrogate to have a baby so early.

Make sure the hospital will put the baby in your name immediately. Our contract and birth order states that it will be that way but the hospital policy does not. They will not change his name on the records until he is discharged. You can probably have your lawyer call the hospital and find out the policy before the delivery so you are not stuck in a situation like this.

I really like the lawyer and she is trying her best to get this situation taken care of.