Hallelujah!!!!

Guess who comes home tomorrow? Yup Sydney. Saw the doc today, and he said let her go home tomorrow. YEAH!!!!

I am having her come home on a monitor for my own piece of mind, but otherwise she is coming home tube free! No oxygen, no nothing. I am so excited, and so busy now, because I have to get everything ready. Short post, but it speaks volumes on how happy we are.

GRRRRR

Again, here I am, fed up. Sydney is doing wonderful. She is making progress with breast feeding. She is gaining weight, up again to 4 pounds, 9.6 ounces. She is waking up and demanding to eat. She is healthy and not on oxygen, and is not desating. Now, why am I fed up?

Simple. She is still in the NICU. The doc did not even bother to call me yesterday. I would think that for the $740.06 a DAY he is getting from my health insurance, he could make a short phone call. He gets that $740.06 for seeing her on rounds, namely he makes $740.06 for about 10 minutes of work, max. I want to make that kind of money.

The lactation consultant feels that we will make better progress at home. She feels that with a supplemental nurser we will make great progress. Sydney makes the latch, but then lets go because she is not getting as much milk as she does with a bottle. Bottle eating is also easier than eating from the breast. The SNS will help solve these problems until she is doing better at the breast. Problem is the NICU docs don't like the SNS, and they are not allowed. See the problem? Thankfully I do not have to master breast feeding with her to get her home. I mean it is REALLY tough to get that going on a really part time basis. I have been using a syringe with breast milk in it to give her little encouragement drops and to remind her what she is up to. Last night the nurse told me I could not have the syringe, because it is against their policies. So when she closed the curtain, I got a syringe out of Sydney's supply drawers and did it myself. The other nurses who I have been working with had no problem with this, in fact one of them showed me how to do this. The lactation consultant also said that Sydney has nipple confusion, and is tongue thrusting. Sydney is used to being fed on our knees, not being held close, so she sometimes freaks out because of this. I feel that getting her used to the breast will be a long process. I really want to do this at home, with good friends on speed dial, not in the NICU. When she screams, I know she is OK, but I usually stop what I am doing because I am worrying about bothering other babies and their families. The lactation consultant let her cry for a while during a lesson yesterday. I just don't feel comfortable letting her do this in the NICU. At home, we can work on this in privacy we don't have there.

I guess I am back to some of my basic problems with the NICU. The lack of communication. The lack of continuity. The lack of parental involvement in basic decisions. The lack of control. The lack of privacy. Seriously, I'm being told how I can and cannot breast feed my daughter. The lactation consultant also thinks that a nipple shield may help, guess what are not allowed in the NICU, yup, nipple shields.

The doc who has been on these last couple of days says he is supportive of breast feeding, and has encouraged me to do this, but then there are the policies that get in my way. Honestly, this Doc is one of the more breast feeding ones. The other two are less breast feeding friendly than he is. Maybe they made the stupid restrictive policies.

So, I try to breast feed Sydney, she screams, the nurse comes in because her alarms are going bonkers, and then I finally feed her a bottle. I have been giving her the bottle next to my breast in a breast feeding position, so hopefully that is improving this.

On a positive note, when Sydney did latch, she looked up at me with her big eyes, which are now brown, and just gazed at me. I cried happy tears.

Vince reads to Sydney every night. He went out and bought her a book about trucks, and reads to her. She loves this, and looks at him and listens to him. I am recording him reading to her, so I can play this for her while he is gone. I will miss seeing him with her while he is away. Thankfully, my PDA has a wonderful recorder, and this is a fairly easy thing to do.

Boil all my concerns/complaints/ whines down, they come to one issue. I want my daughter home. I know this will happen, I just don't know when. Yesterday I was talking about this with a nurse, and she said the "Nobody graduates from college from here" line. I replied "Well, I'm starting to think she may graduate from high school here." I just want her home.

Closer

Guess what Sydney did today... She breast fed. The doc on today wants me to breast feed her whenever I am there. She latched on after crying, and nursed. I don't know how much she actually ate, because after she nursed for about 20 minutes we offered her a bottle, and she ate 27 ccs. She did very well with not desating while she was nursing or eating her bottle. She is getting closer every day to coming home. She had some desats while we were not there that needed oxygen to resolve them, and the doctor wants to not see these. She is still off the oxygen and the feeding tube. She lost half an ounce, and weighs 4 pounds 8.5 ounces.

I learned yesterday that Sydney has been in the NICU the second longest. The baby who has been there the longest was born a week before her, and was 3 months early. We were once warned we may have her that early, and were very blessed to have her hang on until 34 weeks. So I was right that everyone else has gone home but us. I keep trying to be patient, but my patience is getting thinner. I feel we are very close to having her home, and can hardly wait.

Yeah, no pictures of her nursing. I do have some new pictures of Sydney to post.
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That's what I posted on Sydney's journal. My thoughts to add here.

I just want her home. Vince leaves on the 4th of July, and I want us under one roof. I want to be able to hold her to my hearts content. I want to just let her nurse for however long she wants, although I am very happy for what happened today. I guess I'm having a bit of a temper tantrum.

It's like when Vince is gone, and we are getting close to him coming home. I just want him home. I know it is happening soon, but I just want him home. I am like that. Seriously, my patience is running thin. I KNOW we have to wait until she is ready, but I really don't think they are doing anything for here there that I can't do at home. I just want to move onto the next phase of being a mommy and am so close I can hardly stand it. I kind of feel like the morning before Christmas when I was little. I just can't wait to see what Santa brought.

I also an so nervous about a set back. Inside, I nearly panic when she won't eat her 30 ccs. I am terrified she will get the feeding tube back. I just don't know if I can handle that.

Anyway, the house is a mess. Our swamp cooker, I mean cooler is not working at all. I am so sick of being hot.

Here are the pictures.....

What is missing from this picture?

Can you guess what is missing from this picture?

Look Mom... NO TUBES. I Finally got to see her little face sans tubes. I don't think I had ever seen her without some tube on her little face. They changed her feeding schedule to one where she has to eat 30 ccs, but can eat more if she wants, every three hours. She was doing wonderful with that, as well as with her oxygen levels until 3pm this afternoon. The nurse gave her the nasty baby vitamin, and she shut down. This is the first time she had to take it by mouth, and she hated it. They smell NASTY so I don't blame her. Thankfully, she had eaten enough extra over the 30ccs earlier in the day to add up to 30, so she did not have to have the tube put back in.

So we are closer to having her come home. I am telling EVERYONE there that we are ready to come home. While I am patient with this process now, I feel it is important to start pushing the staff members to have discharge on their minds.

Her weight is 4 pounds 9 ounces today. She was so awake and interacting while I was there. I really wanted her to sleep, and I laid her in the bed, but she refused to sleep. She just wanted to play.

So in a nutshell, Sydney is making progress, but mom and dad are losing their patience. I thought she would be home weeks ago, and we are still there. Part of me wonders why they decided to not give her caffiene and oxygen. I also want to know why she had to wait so long to get the blood transfusion. She was anemic from day one. Maybe if her red blood cells were higher, she would have been able to make progress faster.

Due Date

Due Date
Today is the day, that had all gone well, Sydney should have been born. I write today to mark the many ups and downs that have happened over the last nine months.

Ups:
Seeing the positive pregnancy test.
Telling Vince I was pregnant.
The relief we felt after hearing her heartbeat when we were fearing we had lost her.
Hearing her heartbeat over and over.
Feeling her move for the first time.
Whenever I felt her move.
When Vince felt her move for the first time.
My sisters' reactions when they felt her move.
The strength we have gained through faith in the Lord.
Being blessed with excellent medical care.
Hearing her small cry after she was delivered, and seeing her small little body.
Holding her for the first time.
Whenever I hold and kiss her.
Seeing Vince interact and love her.
Watching my family hold and love her.
Giving her a bath.
Seeing her wonderful smile.
When she finally ate her whole bottle.
Watching her scream as I do a normal mother thing that makes a baby cry: changing her diaper. When I guess what she is crying about right.
The support we have received from family and friends.

Downs:

Spotting and ending up in the ER after finally getting pregnant and fearing I was losing her.
Hearing there was a problem with the triple screen test.
Having to sit there as the ultrasound tech went to get the doctor because she was concerned about what she was seeing on the screen.
Worrying if she had Spina Bifida.
Worrying every time they put the ultrasound wand on me that she would still be there alive. Once she started moving, I could relax about that one.
Being told she was coming early, that my placenta was failing.
When she parked her head in my hip, and gave me sciatica, which still exists.
Talking to a neonatologist (who did a wonderful job) about hospice care, and what we should expect with a very early baby. Thankfully she stayed put longer than expected.
Worrying about what the next ultrasound would show.
Dealing with work and having to go on bed rest.
Being on bed rest. How boring and inane day time TV is.
All the non-stress tests. All the waiting at the doctor's offices.
Having to have an early c-section.
Being told the non-stress test was not positive at 30 weeks and that I might be having her that day.
The way I swelled up after the steroid shots. (The steroid shots did wonderful things to her lungs, but no-so wonderful things to me.)
Being told I can't hold her.
Getting a cold sore and being told I can't see her.
The frustration at how slow she is learning to eat.
Leaving her in the hospital to go home.(Every time)
Having her whisked from the c-section room and worrying how she was doing.
Tape Burn from my c-section bandage. (Hurt worse than the incision)
Healing from surgery while having to go to the hospital to see my baby.
Being back at work 2 weeks after having her because I used all my leave and most of my FMLA time while on bed rest.
Dealing with the social worker.
The frustration at the lack of control over our lives.
That she is still in the hospital. I swear everyone else in the NICU has already gone home.
The stress that this is causing on myself, Vince, our families and friends.
The guilt I am feeling because my body failed my little girl. I know I did nothing wrong, but I still feel that I let her down.
The feeling that I just want to pick her up and leave, knowing that I can't do that.

Vince and I have been very blessed to have her in our lives. Today I am feeling rather down as it is her due date, and she is still not home. I was sure we would be home before now. I am now worried that she won't come home until after Vince leaves, and I won't get to have my little family under one roof for another month. I don't want to take her home from the hospital without him by my side.

I am very ready to move onto the next challenge in our lives: Having her home with us. The nurses do wonderful things, but I want her with us. I hate leaving her there. I hate laying her down when she wants to be held.

Today is the day that I should have had a healthy, fat baby. I was blessed with a small, scrawny baby instead. Her being born early meant we got to meet her early, and learn about her. We love her so much. Today I just can't help but grieve for what might have been. Looking like I was going to pop. Feeling a contraction and pushing her out. Holding her right after she was born. Taking her home with us. Having her home. Breast feeding her. Being alone with her. Having family and friends surround her. Taking her to the doctor's and having everyone fawn over her. (I go to my last check up tomorrow.) I know that we are very blessed, but today, I am mourning what will never be, and it is a large and painful loss to grieve.

O-

Sydney's anemia of Prematurity came to a head today. Sydney had to have a blood transfusion.We had known this was coming. Last week, the doctor told us he expected her anemia to get worse, and that she was likely to need one. They checked her red blood cell level yesterday, and it was high. The test was an error. Today's test was 21, a drop from 34 last week.I stayed with her as they put the IV in.

The nurse did a good job, and got the IV in one poke. Sydney cried. It was hard for me to be there, but I was glad I could have my hand holding her on the table, talking softly to her while the IV was put in. She cried a lot. After the IV was in, I held her until she could calm down. I've heard and seen procedures in the NICU before, I knew what was going to happen. I stayed because when the nurses are doing a procedure, the procedure is their focus. I stayed so I could be there to talk softly to her and have someone there to comfort her. I'm not saying the nurses are wrong to focus on the procedure, they need to. I was just glad I could be there so there was someone to comfort her.

The hospital does not allow family donors. They feel there is a risk a family member may be intimidated into donating and be less than honest in their health history. The doctor said that they would maybe consider me, but since I just had surgery and blood loss, I could not donate. The hospital said they have specially screened donors for the NICU.

Sydney received O- blood from an anonymous donor. I am grateful for that donor and the gift they gave my little girl. She got the red blood cells she needed from that person. If you can, call up the Red Cross and give blood.

I stayed with her today while the transfusion went in. She was pretty uncomfortable and fussy. I could not pick her up and hold her because the tube giving the blood was rather short, but I sat by her and touched her and talked to her. My mom came up in the afternoon and sat with me. Her IV leaked at one point, and she got blood on her shirt and face. It scared me to see blood on her face, but we cleaned it up, and they fixed the IV. I am glad that they did not need to redo the IV.

Sydney showed no ill effects from the transfusion. When we saw her that night, her face seemed red to us. The nurse said it was because we were used to seeing a bluish baby, and now with more red blood cells, we have a pink baby.I took a picture of her getting the transfusion. Here it is...