Stage of Grief: MAD

So I guess I have returned to the anger stage in the grieving process. I talked to the cardiologist's nurse today because Grace's saturation levels have been extreamly low today. We haved up her oxygen to 1 1/2 liters versus the 1/2 she is typically on today due to this. The cardiologist is leaning toward the shunt....which like I said before has it's on set of complications. With this shunt she will be on even more meds and need an even closer eye and then there are even more surgeries that may possibly be needed along with that. I knew this might happen but it does not ever truely prepare you for the information non the less. So, I am just stuck at mad right now.

Fine Line

We went to the cardiologist yesterday. He said he was still unhappy that her saturation levels have not improved up into the 80's. He started talking about the shunt surgery again; however made it sound like she will present with congestive heart failure symptoms after the shunt, although she won't be oxygen dependent. I was not really happy about this info or convinced that it is a better option from where we were already. I questioned why we would do something that would not cause great improvement and may cause other complications that seem worse than she is at the moment. He kept saying that we a walking this fine line and she is a borderline case and no one is sure of the best way to handle her case. I pointed out some other symptoms she has been presenting and no we are seeing and ENT on Monday and a GI doc on tuesday. Hopefully this will give us more information. I am hoping the doctors can continue to help her and make the best decisions for her care. She continues to be stable so I really want to make sure that whatever interventions she endures are going to be helpful and not harmful....we want her to feel better.....

New week

We have a cardiologist appointment tomorrow. I have talked to the nurse who came yesterday...she said Grace looks very good. She is still gaining weight which is very good, but she has been taking her sweet time to drink her bottles. Last night she woke up to eat and then we both fell asleep when I was burping her. She slept on my chest for 3-hours.......we must have both been exhausted. Today her heart rate has been very good as well as her oxygen saturation levels!!!

Today is also Gavin's first birthday. Keith and I baked him a cake last night. I am sure he is really going to like his cake!!! He has had a rough couple of days, he had an ear infection and then an allergic reaction to the antibiotic he was on. Poor little guy just never catches a break. He ate chicken parm. last night with pasta.....he wanted to feed himself so he was mess..... after a bath he was back to his squeeky clean self!! I can't wait for his cake tonight...and then probably a much needed bath after he gets it all over himself!!

I will have more news after tomorrow about Grace...so I will post then.

A couple of days..

We have made it through 1 cardiology appointment and 1 ped. appointment and we have 1 nursing appointment for tomorrow. So far all has gone well. No more recent blue spells. The cardiologist did another echo and explained to me the complications that we still face. We are waiting to see if her heart will compensate a little better with the complications over time. He said if her oxygen saturation levels improve it means her heart is compensating if not then we are looking at more surgery. He told me it could be weeks or months before we know what we are going to do, but it the mean time Grace can NOT get sick and we can not let her get upset and cry......so any time she gets upset we drop everything and make her comfortable. So, we continue to wait and see what the next step will be for little Grace.

On the other side poor Gavin has an ear infection. He was really sick today and had a sleepy crabby day....poor little guy:( We had to keep the two very seperated today...so Gavin played in the main room and Grace was stationed in the Dining room. I had to have washed my hands over 15 times today!! I hope I also don't get sick, or we are really in trouble.

Other than that I am already tired of being stuck at home:) I miss talking with all of my friends at work:)

Home again

Grace came home yesterday evening. She has been doing great so far. We are making the many Dr. appointments for the next two weeks today.

Gavin also started really walking. He took 6 steps at Cathy's house today. He has been ready to walk for some time, but has been holding back for some reason. Keith has taken him to the park the past two days and he has enjoyed the swing and the slide!! He is getting so big so fast:) It is hard to believe he is turning 1!! My baby is turning into a little boy:( He will always be my baby:)

Another Monday

Grace is still in the hospital. They think this might have been all do to reflux, but they were doing an EKG and getting a GI consult over the next day. I know the EKG was done today, but GI probably won't see her until tomorrow. I am glad they are looking at everything before we go home again. We will see what tomorrow brings. I did get to spend several hours with her today, but I still miss her so much. It is not easy missing so much of her early life. I know she is in the best place right now, but it is difficult splitting the time between Grace and Gavin....which also splits time between Keith and I too. It is just a bummer.

POOP

We are back in the hospital. She had a period of time where she lost her color yesterday and was blue. We went to the ER and were transported back to Christ Hope. She has been fine ever since she has been in the hospital, but her sat. levels were lower than normal. I am sure she will be there for a couple of days.

Our 1st day!!

Today was the 1st full day home with Grace and it was not so easy. The day started out hectic with Gavin getting up early and Grace deciding not to stick to her schedule of eating every 3-4 hours. She instead decided to eat smaller more frequent meals today. This would not have been such an issue if she had better timing. She would decide to eat at the same time Gavin was earting or needing changing. Poor Gavin ended up walking around in his diaper for 1 and 1/2 hours while I calmed Grace down because if I set her down to go get his pants she would have continued to scream. This is going to take some better planning like making sure I have Gavin's PJs ready to go downstairs for when Grace decides that she is discontent.

Since Grace is not as easy to move around the house due to being connected to oxygen and monitors it is not as easy to do everyday tasks. If your holding Grace and you need something on the other side of the room, you have to make the choice of putting her down to cry....ordeciding how badly you need the object that is not within 2 feet of you. This will definitley make me better at planning out the simplest tasks of the day.

So far we have made it through day 1.....just many more years to go.....

Mama, I'm Home!!

GRACE IS HOME!!!! She made it just in time for her big brother to head off to bed. I don't really think this has sunk in for Gavin quite yet, but the dogs were very interested in her when she came home. They were sniffing her and Marley was barking at her because she was crying. Grace wanted to eat shortly after her car ride home and then made a poop!! How exciting. She then demanded to be held until she dozed off to sleep. I of course gave right into holding her, and I love seeing her little sleeping face.

We already have nursing coming tomorrow between 11 and 1 and have two Dr. appointments as well as three nursing visits for next week!! Boy are we going to be busy!!

Wednesday is the BIG DAY!!!

Grace will be coming home for the first time on Wed. There is so much to do before she comes home. Tomorrow is a long day at the hospital for us. I will be there for her car seat challenge in the afternoon and then we will be back in the evening for training on all the monitors and oxygen that will be at home and on the go with her.

Wed. all of her monitors and oxygen machines will be delivered to the house and set up, then later in the evening we will be taking her home. We will have nursing visits several times a week and many weekly Dr. appointments. Who knew this little one was going to have such a full schedule at 3-weeks old:) I actually went out and bought a planner today just to keep all of our appointments straight. I do not want to miss any of our many visits. I am sure Grace can't wait to come home. The NICU is a very busy place, I am surprised she gets any sleep!! Pretty soon I will be the one getting any sleep. So everyone remember this is the time I still have some of my marbles....after a couple sleep deprived days and nights they are sure to be gone:)

Keeping our fingers crossed

We are still not sure what day Grace will be coming home. The cardiologist was ready to ship her out the door on friday; however, the neonatologist wanted to watch her oxygen saturation levels over the weekend. So far she has still been doing well. When we were at the hospital today, her levels were a little lower than they had been again and she was given a higher level of oxygen through her nasal canula. We are hoping that she continues to do well so that we can take her home.

The good thing is that the hospital really wants to make sure she is doing well before they let her leave. There are still so many things that have to be set up before she comes home. We have to have the oxygen and monitors sent and set up at the house, she has to pass a "car seat challenge" at the hospital, she needs her pictures taken, we have to be trained on how to use all of her monitors and oxygen and I am sure there is even more that I do not know about. All of these activities will not begin until tomorrow, so it will be a busy week for us.

The good news is I am no longer restricted from driving--after my c-section. Although it is nice to be driven around, I really missed not being able to go somewhere whenever I wanted. I also have been able to start picking Gavin up again too!! He is such a big boy!! We have been digging out all of the baby odds and ends from Gavin for Grace to enjoy. I am just so thrilled to have her coming home...It is hard to believe that she is almost 3-weeks old already...and she has never even come home yet:)

Something short of a miracle.....

So, the info from the cardiologist today was that the PDA finally closed. Grace's nasal canula was removed yesterday, but replaced last night when her saturation levels dropped over the evening. With the extra oxygen, she has been able to keep her oxygen saturation levels between 75-85, where they shouldbe for a baby with her condition. The decision that was made at last nights grand rounds was to send her home with oxygen and monitors and not do the shunt surgery at this time. They are not certai if she will need any other surgeries at this time, and will be followed by a cardiologist on a weekly basis.

This was fantastic yet, frightening news. I am so happy for her not to need any further surgey at this time, but I am hoping she does well with her oxygen and monitors when she comes home. This is quite a bit of responsibility.

There are still many things that will be done from the hospital to prepare for her trip home. We have to have the equipment delivered to the house and be trained how everything works as well. They will also be doing some tests with her at the hospital to make sure that she is truely ready to come home.

The cardiologist also said that she does not have Ebstein's anomoly. This was also such good news. So, we will just wait and see what the right ventricle of her heart wants to do over the next couple of months to see if anyting further needs to be done.

I was praying so much for this news, but I never thought that this would be true!!

no news until tomorrow

Tonight is the grand cardiac rounds. Grace's case will be discussed and decisions will be made. We will not know the outcome of these rounds until tomorrow. Tomorrow will be packed with new information.

Grace looked great today. Her saturation levels were looking good again, which makes me suspect the the PDA opened itself up again, but I won't know that info until tomorrow. She ate well today, but then spit up half of what she ate:( Poor little baby. We have so much fun together already. She has really long fingers that like to pull out her nasal canula...and when she was getting her echo test today...she suceeded at pulling it out. She is a lot like Gavin in that she always wants to know what is going on around her and she fights sleep like you do not believe when she finally wakes.

We are all praying for good news tomorrow.........

Monday Monday Monday

I was able to stay at the hospital today to see the cardiologist do rounds. They have not made a final decision of the next step and will not do so until Wed. It is either go home on all the monitors she is currently on, and see what happens as her heart grows with her body or perform a shunt surgery with a full correction. I am not going to think to much about either option until they make their decision on Wed. evening. They will then sit down with us and have an in depth conversation with us once a decision is made. So we wait.

Sunday

It was great seeing Grace today. I was able to feed her and just hold her for hours while she slept. She is so precious, it is hard to even understand that her heart isn't working properly.

The weekend cardiologist called today to update me on her. He did not feel comfortable with her saturation levels dropping below 60, so her put her back on oxygen. He also said that she will most likely need the next sugery this week, but since he is only the "weekend guy", he was not going to be the one making the decision and that the week day team will probably be talking about the next steps tomorrow. He briefly discussed the probable next step surgery, which would be just one of many that she will need. It appears that this surgery has to be repeated every so many years to accomodate the growth of the heart. This was difficult for me to hear, because I was hoping that we would correct the problem now and not have to look back, but that appears not to be the case. I am so stressed already with this, I cannot imagine having to stress years from now as well.

Grace is absolutley beautiful. I really wish that she did not have to go through all of this now, or ever. I just pray that we will make it through this.

Sat. May 2nd

Unfortunatley things are the same as they were yesterday. We were only able to spend a short amount of time with her today. Hopefully I can stay with her a long time tomorrow.
I just want to hold her and comfort her as much as possible. I feel defeated right now....I just want someone to fix her heart now!!

Answers

I had the cardiologist paged at 10PM. I knew I would not be able to sleep until someone could tell me that it is ok for her saturation levels to drop so low. I was patient and waited all day for them to return my phone call---and this is the econd time this has happened. I know they are the best in illinois, but their communication could use a little help. Her saturation levels had dropped at times into the 50' s even under 1-2x when we were there. The cardiologist assured me that there would be no other damage that this causes. (My hospital friends, if you know anything different please call me or e-mail me at any time--but for now the cardiologist is saying as long as she is showing no other signs of distress, since it is the mixing of the oxygen and unoxygenated blood due to her heart defect it is acceptable for her levels to drop so low without any othe negative impact)

We won't be seeing her again until tomorrow afternoon, this is probably good, because they are going to let her stay like this for at least the weekend unless she shows signs of distress. This does stress me out.....I feel very responsible for her care and I just worry.

Well today was much of the same as yesterday. She had low oxygen saturation levels due to her heart condition with the monitors going off every couple of minutes letting us know that her saturation levels were dropping.

The cardiologist has not returned my phone call to answer my questions about her desaturating for two days in a row, so I am frustrated and mad at this point. I do not know if her levels dropping so low will negativley impact her in any other way such as brain damage so I am very concerned.

I would like to sit there all day long so that I do not miss the cardiologist, but I do not have that option. So, it has been a stressful and frustrating day and I want answers now...but can't get them. In the mean while Grace will continue to desaturate and I can do nothing about it besides worry. I really hate not having any control over this situation.