July 15, 2:13 pm

Is a date that I'll never forget. The doctor tried his best, but Gwen's pulmonary hypertension just wouldn't go down. The longer she was on ECMO, the less likely she would survive, and she just wasn't getting any better. Today I had another talk with the doctor, and it was the talk I didn't want to have. At 2:13 today, Gwendolyn Christine died. I held her until she went. It was the best for her; she was fighting a losing battle. She fought hard, but she wasn't responding to any of the treatments the doctor was putting her on.

Better news

Well Thursday, I received word that the doctors didn't think that Gwen would live past Monday, but today is Tuesday, and Gwen is still fighting. She's stable, there hasn't been any change at all since the weekend. However, Monday they did a scan of her chest and were able to see her left lung, and were able to see that her right lung is still inflated. When they checked her lungs with the stethoscope, they were able to hear breathing sounds in both lungs.

Her nurses just adore her. One of her day shift nurses bought her pretty little smocked dress and even prettier little blanket. One of her night shift nurses brought in some socks for her, and another adorable little blanket.

They put her on a lasix drip, to try and get her to pee more often. Which she did phenomenally. Over Saturday day and night she peed over a liter, and got some of that swelling down. She looked wonderful!

2 Weeks

Well, this morning when I spoke with the doctor, we did not have the dreaded talk I thought we would. But did say that talk is close. If we could just get the hypertension down in her lungs, we'd be great. Well, better. She's responding well to everything else. Today even it looked like some of her swelling has gone down. I'm not too sure, because I myself never even notice it. To me she's perfectly beautiful. I didn't get to spend much time with Gwen this morning. That was my own fault, I woke up feeling just positively awful, and wound up having to go to the ER. Diagnosis: UTI. This morning I just wasn't up to spending time with her, as awful as that sounds. Because they have to keep her up so very high, I have to stand on a little stool next to her bed. Sometimes my legs are just too weak to hold me up, and that happened this morning. However I did get to go back later this evening.

I absolutely adored her nurse today. While I was resting my legs, she had to draw some blood for a test. She spoke kindly to Gwen, trying to make her feel a lot better during the unpleasant process. She also spoke so kindly to her earlier when she had to clean out Gwen's lungs. Gwen's had the nurse a couple of times, and she just adores Gwen. And she pulled a chair over, and spoke to me about me. I mean, I love talking about Gwen, she's such a strong baby girl, she's precious. But sometimes I need someone to ask me how am I feeling, and understand that this is a hard time for me, too.

Things are not looking good

Tomorrow I talk with the doctors that have been taking care of Gwen. When they changed her pump, she did not do too well. She backslid all the way back to 100% on everything, and they are not expecting her to live past Monday. I fear that tomorrow they will start talking about taking her off life support. They did another echo of the heart this morning, and the hypertension in her lungs is still very high. She so very swollen, and they can't seem to get it down. Even though earlier today they were able to wean her down on the oxygen to about 80%, I think Gwen has fought all she can fight. I've been trying to stay positive, telling myself that we would be taking her home but I honestly don't believe so anymore. My poor little baby girl just won't respond to the medicines they've given her for the hypertension. Her lungs just won't work right.

This has been the hardest two weeks I've ever had to face. I never knew that you could love someone so much it hurts, but you can. Oh God, I want to take her home. I want to take her home alive, and happy. How does one decide whether to take a loved one off of life support? I don't know if I could do it; but I don't want my little girl to suffer. I know that there is still time, but medically speaking it would take a miracle for Gwen to get better. And I don't think I'm going to get that miracle, my baby has fought all she can fight. Today she had tears just streaming down her face, and thats something that she's never done before. She's never cried before. I think, I really do think, she's just tired of fighting. Its not fair, that such a innocent little baby should have to go through this. It's not fair at all.

Doing this alone

Today I moved into the Ronald McDonald House. Once Aunt Irene left the hospital, it finally hit me that I was really, truly alone for the very first time. I couldn't stay long at the hospital, once I got back to my room, I just cried and cried until I fell asleep. My mother should be here for me. But she's not, she's too worried about her physical therapy. I wouldn't mind it much if she were actually taking in what she was doing, instead she's wasting doctor's time. All she wants is the pain medicines. My father should be here too, and can't. I'm really, truly alone. I don't know how I'm going to do this so alone. I have "family" here, but Irene and her husband really aren't family, and I don't want to become a burden to them. They have been so, so helpful; and I'm thankful for it. Its awful going to the hospital and seeing that little girl hooked up to all those machines. It hard hearing the doctor tell me he's doing all he can do to keep her alive. I understand the Gwen is a very, very sick little girl. I understand that she's hanging on, that it's still very early and I don't expect leaps and bounds from her. But all I want to do is hold her. I never got to hold her. In fact, I didn't even get to "see" her until hours after her birth, and then I never really saw her. I saw wires and a leg and an arm. Then they wheeled her out, to fly her out to Augusta. It then took me a week to get down to her, and by then little Gwen was barely hanging on to life. Now that I'm at her bedside everyday, I can tell she's doing better, but she's still so very, very sick. I know that recovery is a very long road, but its awful. It's so hard.

I know there is hope. The little babygirl in the bed next to Gwen was just recently on ECMO. She's now eating solids. Her mommy is in the Ronald McDonald House too, they're from Savannah. The little girl is about as old as Gwen. It gives me hope. That little girl was very sick to; maybe not as sick as Gwen. But each time Gwen backslides, it's hard. Even when the backslide is to be expected. Today they changed out her pump, and even though it's normal the nurses said, it was heartbreaking to find that she backslid again. She had been doing so good. They're trying their best to get some of her swelling down, and it just doesn't seem to be working at all. Apparently she's too swollen, and that is probably not healthy for her. Sometimes, I wonder if she's ever going to get better. I try to tell myself that I'm taking her home with me, but it hard to keep positive seeing your little girl hooked up to machines and moniters. I honestly don't think I can do this alone. Even being in the Ronald McDonald House, with other parents who are going through the same thing I am, I don't think I can do this. Gwen's recovery can take months and months; and with a mother who cares more about herself, and my dad himself can't spend months with me, I am so alone.

My baby is on viagra!

Well, the Viagra is to help try and inflate her blood vessels in her lungs. Because her left lung so very small, they can't see how much of it she has because of her instestines and stomach being right on top of it; and her right lung is deflated. Gwen's been doing pretty good, shes now down to 60% on the ECMO. I did get to speak with her doctor yesterday, and he says that the road to recovery will be a very long one. Several, long months in fact. He warns that even after the surgery she may suffer from hypertension in the lungs again, so we might spend a very long time on a ventilator, or worse revert back to the ECMO again. However, I think now that Gwen knows her mommy is right there with her, we won't have to worry about that. My babygirl needed me, and I'm there for her. Hopefully, it won't be long before I can hold her. I never got to hold her at all because of the C-Section and her pediatrians whisked her away so fast.

We had an eventful day yesterday

First off, "eventful" is not something we want to hear about Gwen. Yesterday morning, she'd started to decline pretty rapidly on the ECMO. She jumped back up to 100% and wasn't responding to treatment, so they brought in a cardio scan to see what was wrong with her heart. It appears the the cannulates in her carotid artery could have been put in a better place. Once this was done, Gwen imediantly started to improve. She jumped down from 100% to 70% by the time I had been able to get to her. I was able to get one of those teddy bears that have the heart beat soundbox, which she loves. I don't know which she loves more, her heart beat soundbox or my voice. If my sweet little girl keeps improving at the rate she is, I'll have my baby home soon.