Please Daven for Avigayil Bas Rivka Batya.

Please Daven for Avigayil Bas Rivka Batya.

Tuesday, July 29, 2014

So Many Firsts

Avigayil has been home now for two weeks. It has been an interesting time. We are getting to know each other and looking for our new normal. She is a generally quite and easy going baby. She loves movement and loves to go outside. She loves all her siblings but seems to especially like spending time with Shimmy, our 7 (and 1/2!) year old.

Sometimes people think that coming home means its over, that everything is ok. This is far from the truth. Although Avigayil is getting stronger she is still having difficulties. She is still on oxygen and is currently not gaining any weight. That means that I am still pumping and we have to wake her ever three hours to feed her, something no parent in their right mind normally does.  We are currently going to the well baby clinic once a week for weight and a check up. This will continue for 8 weeks and then we will have a two week break before she has to start going every few weeks for an RSV shot (more on this closer to the winter). We are davening that she starts to gain weight soon before more drastic measure as required.

Someone sent me something that said "Being a preemie mom means doing things other people don't understand". Looking back on the last two weeks I see how really true that is. Our list of first is quite different than other people's. We had our first pediatrician visit, first visit to the pulminologist, neonatologist, physical therapist, preemie clinic, well baby clinic, pediatric day hospital, GI, and our first trip to the ER (I'll tell that story soon I hope). We had our first sleepless night because her monitor kept going off and our first oxygen concentrator mishap. In a few weeks she will have her first cardiologist visit as well. I also can't tell you how many conversations I've ended with "gotta go the baby is turning blue." (By the way, that is the fastest way EVER to get rid of a telemarketer.)
 

Going out with Avigayil is also different. My diaper bag includes nasal canulas, medical tape, granuflex, SpO2 sensors, sensor sleeves, syringes, medicines, suction, charging cord for her monitor, a medical file, emergency contact info fr the oxygen company, and oh yeah, diapers. We had to get a new stroller that would hold her oxygen tank and monitor (I love it, thank you grandpa). Outings are determined by how many people will be at any given place and how much oxygen we have left.

On the plus side we are now on a first name basis with all the local and regional pharmacies and we get special treatment at the well baby clinic and at our insurance office and nursing clinic. Additionally, "I'm running low on oxygen" helps get me to the front of almost every line (we have many bureaucratic offices to visit in the coming month I hope it works there as well). 

In short, life has been extremely busy and crazy, but we are hoping to settle in some time soon. Things are starting to get more routine, even all the doctors visits. IY"H (Please G-d) she should start to grow and gain weight and should continue to get stronger and healthier.


Sunday, July 13, 2014

She Came Home!!

That's right, after 101 days in the NICU our baby girl finally came home.I can not describe the immense joy and relief. I smiled so big I thought my face would break and I cried so much I thought I would dehydrate. One would think we had reached the end, but really its just a transition. Avigayils story still has a many more chapters to go before we can celebrate her full return to health. Leaving the NICU however, is a major step.

She came home on Friday before Shabbos, and thankfully only on oxygen. This means that she can actually leave the house for short periods of time. Today, she got to go to the health insurance clinic and the well baby clinic. Later this week to the pediatrician, then next week back to the hospital to see the pulminologist. After that to the preemie clinic and to get a special hearing test at the audiologist. Our baby is only 103 days old and she already has so many specialists you would think she was 103 years old. In the coming days and weeks we have to visit all of them.

In between all this, we are learning the quickest way to switch her to portable O2 (she is usually on an oxygen concentrator) and shlep her and her O2 canister and her monitor down to the bomb shelter when the air raid siren goes off while simultaneously herding my other 4 children in the same direction. Life is just getting more and more interesting for so many reasons. 

Here are some pictures of her leaving the hospital. I hope to post more of her homecoming and first outing soon.









Thursday, July 10, 2014

100 Days And A Miracle

Today marks a milestone we never wanted to reach. 100 days in the NICU. As I look back there have been a lot of ups and downs. A lot of tears and happy moments. 

The last few days have been crazy.  Yesterday,  the people in charge of the home hospitalization came. After all was said and done, they said we would leave today. We scrambled to get everything done.  Equipment,  meds, diapers.  Then late in the afternoon I got a phone call.  There was  a bureaucratic problem.  After what felt like a million phone calls,  thing where mostly worked out.

When we came this morning,  one of the thing left to work out was the ambulance home. The insurance company would not pay for an ambulance,  none of the transport companies would take her and the hospital and the insurance were fighting it out. That is when one of the doctors realized that we hadn't tested to see if Avigayil would be OK on just oxygen for the time it would take to get her home. Everything hinged on this test. If she failed everything was mut since if she couldn't manage to get home then she couldn't leave the hospital.  So we turned off the machine and held our breath.

She did well. She did very well.  In fact,  she did so well that the doctors decided to keep her in the hospital one more night and see if she can manage on only the oxygen. So far she has been off the machine all day and has had very good saturation levels. IY"H (Please God) she will go home tomorrow on only oxygen!  She will not need the home hospitalization that we worked so hard for. The doctors are baffled,  it is literally a miracle.

Two days ago,  the prongs came out of her nose and she started to crash. Yesterday her x-ray showed her lungs looked the same. Today she went from being on a flow of 5 lpm to nothing,  just like that.

IY"H Our baby girl will come home for Shabbos tomorrow and for the first time in almost six months, our whole family will be together.

                                                                             

Tuesday, July 8, 2014

We Got It!!!!!!!

Baruch Hashem (Praise G-d) we got approved today for home hospitalization!! I was so happy and excited that I couldn't sit down for two hours after they told me. The range of emotions right now are so great it is hard to describe. I'm happy, relived, excited, scared, worried, overwhelmed.

The next few days will be a whirlwind of getting ready, getting equipment, training. Life from now on will be interesting. Some people think this move will make life easier for us. It is true that I will not be spending so much time running back and forth to the hospital. However, Avigayil will not be able to leave the house. In fact, she will not be able to leave our bedroom. Her breathing machine will need to be connected to electricity all the time. Either Dov or I will have to be home with her at all times. We cannot go out together. I will not be able to run to the store or a doctors appointment or errand in the mornings like I usually do. We will have to turn our home into a mini hospital and become the crazy germ people the I have always despised.

We are excited, crazed, and just very, very happy. 

Sunday, July 6, 2014

The Long, Lonely Walk

As I walked to the hospital on shabbos this week I reflected on my walk last week. There was a spring in my step, a happiness to it. I felt sure that it was the last time I would be making that walk. I was certain that the following week we would be lighting the shabbos candles with our little girl safely tucked away in our home.

It was not to be.

As I made the walk this week it felt a little longer, a little more lonely. I wanted to see my baby, to hold her. I also knew that if I didn't go she would not have enough to eat. However, a part of me didn't want to go, or more accurately, didn't want to have to go.

We have come a long way. Sometimes its hard to see that. A good friend, who happens to be a neonatologist, pointed out the other day that we are no longer talking about chances of survival.  Baruch Hashem (Praise G-d). While this is so frustrating for us and some days are so hard. It sometimes helps to know that we are at least past the question of "Will she live? Will she make it?"

Her nurse the other night was one of the nurses who was on duty when she was born. She told me what they hadn't told me until now. Apparently, the beginning was a lot more touch and go then I had thought. She really had a very rough start. It made me look at our daughter, our tiny baby girl with a new respect. She is a true fighter. I hope that spirit will help with the challenges ahead.

We got a lot of new information this week. Some of it was encouraging and some a little hard to swallow. Her pulminologist said that at this point, he expects her to need the machine for at least a couple possibly several more months before she can be moved to just oxygen. Her BPD is severe and could affect her life greatly until she is 5 and may affect her in some ways until she is 16-18 years old. She is also having trouble eating. Her vomiting has increased a lot and she is not gaining any weight. The doctors restarted her on the antibiotics to try to help her digest her food. She is being given a new additive to try to help with her weight. Unfortunately, she is simply very uncomfortable and has been crying a lot.

I wish there was more I could do to help her. I wish there was a way I could take her in my arms and make everything better. Until then, I will continue the long, lonely walk of the NICU mother.   


Tuesday, July 1, 2014

Denied

We are back to square one.  After a week of running around and thinking we where bringing Avigayil home,  the insurance notified us today that they will not pay for the machine she needs to come home.  I'm heartbroken. Everyone was so sure that this was going to work.  Even the NICU staff was taken by surprise. I was ready to move on, to move beyond the hospital.  My entire life has revolved around this place for the last 6 months.  It was bittersweet thinking about leaving,  but I was ready. Now we are back to the endless tunnel that is the NICU.

I'm not sure though who is more upset,  me or the doctor.  Dr. Y, who has been working hard to get this set up,  had many words to express how he felt. None of them are repeatable. The hospital is appealing on our behalf. We are hoping with all our might that they can still push it through, that we will still be able to bring Avigayil home. Otherwise, we are in for a very long haul.

In the meantime,  Avigayil is having a rough day.  She is vomiting a lot, having difficulty breathing and is very uncomfortable. Please keep her in your prayers.